Well, October was a long month...very long! We made it to Duke 3 times. Everything went really well with the updosing and we are still on track with his doses. He hasn't had any issues with any of his doses so far, so we are very happy with that.
We had some excitement at the start of December when I hit a deer on the interstate on my way home from Duke. My son was in the car with me and thankfully, we were not hurt, but our car was totaled. Boo! So, that was a lot of time and effort getting a new vehicle and just dealing with all that stuff.
Then we had a wedding to attend where our daughter was a flower girl. It was very nice, but a lot of work for all involved. She had a great time though and it was all worth it.
The best part of the month was getting to meet another boy at Duke who has FINISHED the trial and is completely allergy-free! I almost started crying talking to him! He doesn't like peanut butter on a sandwich, but he does love it with chocolate! So, he eats whatever he wants now, whenever he wants. His mother said she couldn't even describe what it was like to now go into any restaurant without worry or pick up any food without reading the label! Wow! This young man was in the first trial and is now in 7th grade, so he started at a later age than my son and it took him a while. They are hoping to show that if they get the kids at an early age like my son, that they will take to the treatment faster and their bodies will respond faster. Thus far, it seems to be holding true...there are kids in our study ready to food challenge after just 2 years in the trial.
Then, the last time we were there, we met a young girl who was doing her first food challenge...she was doing great and they all expected her to pass with no issue. Then she comes back a month later to do another challenge and if all goes well, she is DONE! Her family is already planning a peanut-filled holiday season!! We were chatting about all the restaurants they want to go to and things she wants to try. :)
I don't think people realize how much food allergies affect not just the child, but the whole family. It was so nice to see these families conquer this and make their child's world a MUCH safer place! Of course, as parents, we still worry about everything, but not having to worry about food is a very big deal!
So, all is well and we are moving right along...now, if we can just avoid the deer from now on! :)
Friday, November 4, 2011
Tuesday, September 20, 2011
Moving right along....following the trends!
So, another successful day at Duke this week and we moved up to our next dose. We are almost at the point in the dose where the two options split...one group will get a "high" dose and the other a "low" dose of peanut. We won't know which group we will be in until after the trial is complete. We do know that at minimum, he will get at least 1 peanut a day and at maximum 10 peanuts a day. Either way, the treatment seems to be working, so we are happy to participate and help them determine the most effective dose with the best safety record!
As I mentioned, my son had his blood drawn back in August and we got the results this week. His IgE at the start of the trial in May was 8.52. His current IgE is 16. Now, that sounds like a bad thing, but it isn't. In all the participants, the IgE goes up at first...doubling or even tripling. Then....it starts to go down, down, down. :) So, the good news is that our son is responding to the treatment and his body is changing its immune response. They also look at a bunch of other immune indicators that I can't remember the names of, but this one is the one that matters to me. Once his IgE is below 2 and he has been on maintenance for at least a year, then we can food challenge! So...hopefully we will start to see his IgE drop at our next blood draw 2 months from now (we do that every 3 months).
In other news, he has gained weight and grown taller at pretty much every appointment! :) He is now 21 months old and I can't believe I will soon have a 2 year old boy! :)
As I mentioned, my son had his blood drawn back in August and we got the results this week. His IgE at the start of the trial in May was 8.52. His current IgE is 16. Now, that sounds like a bad thing, but it isn't. In all the participants, the IgE goes up at first...doubling or even tripling. Then....it starts to go down, down, down. :) So, the good news is that our son is responding to the treatment and his body is changing its immune response. They also look at a bunch of other immune indicators that I can't remember the names of, but this one is the one that matters to me. Once his IgE is below 2 and he has been on maintenance for at least a year, then we can food challenge! So...hopefully we will start to see his IgE drop at our next blood draw 2 months from now (we do that every 3 months).
In other news, he has gained weight and grown taller at pretty much every appointment! :) He is now 21 months old and I can't believe I will soon have a 2 year old boy! :)
Tuesday, September 6, 2011
Rain, rain go away....
We had a rainy trip to Duke today, but another successful one. We are now well into our routine and things are going well. My biggest concern is just keeping him healthy so that he doesn't miss any more doses! I hate when the kids are sick...it is no fun for them and I just want them healthy as soon as possible...I feel so bad for them! They are pretty good about it though. So, when we got home today, our daughter was running a fever and feeling a little tired and yucky. So, here we go again! My goal is to keep him away as much as possible!
Anyway, we have another dose and start another two week process. :) Onward and upward!
Anyway, we have another dose and start another two week process. :) Onward and upward!
Thursday, August 25, 2011
You give me fever....
Well, we had to miss our first doses this week! Because of his fever, we missed the Tuesday and Wednesday doses. Boo! However, his fever broke today, so we were able to get back on track today. If we missed 3 doses, then we would have to head back to Duke to be monitored for his next dose. So, luckily, his body kicked the infection or whatever was going on and he was fine today. I was a little nervous doing the dose again, but he took it just fine and had no symptoms! Yay...back on track!
Tuesday, August 23, 2011
Fever...yuck!
Well, we made it to Duke yesterday and he was kind of warm, but not registering a temperature when we got there for our visit, so we went ahead with his next dose and then got him ready for his blood draw. After about an hour, he started to warm up and we checked his temperature again and it was 99.8. Ugh. Under the protocol, he is not to have a dose when he has a fever. So, we kept a close eye on him. He was just sleepy and tired, but no other symptoms. He had no issues with that dose of peanut though, so that was a blessing. They were able to draw his blood without too much issue and then they gave him some Tylenol so that he would be more comfy for the ride home.
We came home and he was playing, but still feverish off and on the rest of the evening.
Today, he was still feverish this morning, so I gave him some Motrin and took him in to the doctor to have his ears checked...they looked clear, so likely it is just a virus running through him. He continued to be fevered this afternoon, so no peanut flour dose today. He can skip two days of doses without issue, but if we miss three days, then we would go back to Duke to give him that dose and have him monitored to make sure he is still fine with it. I am hoping that we just miss today's dose though. He is doing well now and is playing and eating normally, so I hope it gets out of his system tonight.
In other news, there are three kids in our trial whose IgE levels have dropped below 2 and they have been on maintenance over a year.....so, they are ready to food challenge!!! They will start in October. I am so excited and I cannot wait to hear how they do!!
Anyway, here's hoping that we kick this virus asap and can get back on our schedule! :)
We came home and he was playing, but still feverish off and on the rest of the evening.
Today, he was still feverish this morning, so I gave him some Motrin and took him in to the doctor to have his ears checked...they looked clear, so likely it is just a virus running through him. He continued to be fevered this afternoon, so no peanut flour dose today. He can skip two days of doses without issue, but if we miss three days, then we would go back to Duke to give him that dose and have him monitored to make sure he is still fine with it. I am hoping that we just miss today's dose though. He is doing well now and is playing and eating normally, so I hope it gets out of his system tonight.
In other news, there are three kids in our trial whose IgE levels have dropped below 2 and they have been on maintenance over a year.....so, they are ready to food challenge!!! They will start in October. I am so excited and I cannot wait to hear how they do!!
Anyway, here's hoping that we kick this virus asap and can get back on our schedule! :)
Tuesday, August 9, 2011
3 months already!
Wow...we just got back from our biweekly trip and I can't believe it has been 3 months already! We started on May 9 and here it is August 9 already! My son is doing great with his doses and luckily, he has been able to take all of them and we haven't had to miss any. Typically, you only miss a dose is the child has a fever or a significant illness. I am hoping that we can avoid all of that as much as we can!
At our last visit, we had a chance to meet some other families and that is always fun. I love to hear about their experiences and how their kids are doing. One little boy that is in the same study as us is on his maintenance dose and his numbers have dropped below 2 already...so he will likely be food challenging this fall! That is so awesome and so encouraging! She also said that he hadn't had any reactions with any of his doses throughout the whole program...so, that is what we are aiming for! :) We also met another boy who is older and is in a different trial, but still on oral immunotherapy for peanut. He has been on the maintenance dose for probably 6 months or so and then out of the blue, he had a reaction. Well, not out of the blue actually....he has asthma and it seems that asthma kids seem to have more issues with the treatment (although that is just my own observation, not scientific). Anyway, he has asthma and then on top of that he had his dose and then went on to participate in a particularly intense athletic class which was soon after his dose. We are supposed to not have them participate in anything strenuous after a dose. So, at the end of his class, he started having asthma symptoms and that is what they thought it was, then hives showed up...not asthma...peanut! So, that was a gentle reminder to us all that we have to follow the protocol and not ever take for granted even if they have been great with no issues! However, this kid is still doing great and his IgE has dropped significantly since he started...so his dad said that this was merely a blip and that they were going to keep on keeping on!
So, we are still doing great and they are still seeing great results for kids in both the OIT and SLIT trials! We still feel very blessed to participate and every other parent I talk to has said the same.
At our last visit, we had a chance to meet some other families and that is always fun. I love to hear about their experiences and how their kids are doing. One little boy that is in the same study as us is on his maintenance dose and his numbers have dropped below 2 already...so he will likely be food challenging this fall! That is so awesome and so encouraging! She also said that he hadn't had any reactions with any of his doses throughout the whole program...so, that is what we are aiming for! :) We also met another boy who is older and is in a different trial, but still on oral immunotherapy for peanut. He has been on the maintenance dose for probably 6 months or so and then out of the blue, he had a reaction. Well, not out of the blue actually....he has asthma and it seems that asthma kids seem to have more issues with the treatment (although that is just my own observation, not scientific). Anyway, he has asthma and then on top of that he had his dose and then went on to participate in a particularly intense athletic class which was soon after his dose. We are supposed to not have them participate in anything strenuous after a dose. So, at the end of his class, he started having asthma symptoms and that is what they thought it was, then hives showed up...not asthma...peanut! So, that was a gentle reminder to us all that we have to follow the protocol and not ever take for granted even if they have been great with no issues! However, this kid is still doing great and his IgE has dropped significantly since he started...so his dad said that this was merely a blip and that they were going to keep on keeping on!
So, we are still doing great and they are still seeing great results for kids in both the OIT and SLIT trials! We still feel very blessed to participate and every other parent I talk to has said the same.
Tuesday, July 26, 2011
Another trip, another dose
We are moving right along on our updosing schedule. Thus far, our son has has no reactions to any of his doses and he seems to be tolerating them with no issue. We follow the protocol exactly and make sure that we do as we are told! He is supposed to eat a full meal prior to his dose and to not do any "strenuous" exercise after his dose. Now, he is 19 months old, so he is able to run around and play and be a normal toddler, but we won't be taking him outside to run any races or do anything super strenuous for the two hours after his dose. During the week, he gets it in the evenings after dinner, so we are settling down anyway. So, our biggest challenge is just getting home from work and getting his dinner on the table as quickly as possible. We are to monitor him for two hours, so that puts us in a time crunch in the evenings since he goes to bed before 8:00 pm. So, I rush home with the kids, get their dinner ready and then give him his dose after he eats. On the weekends, we have more options, but I normally try to get his dose done right after his breakfast, so then we relax for a bit and then are up and about for the day. That seems to work out really well. Oh, and it is okay to give him his dose at different times each day. It isn't a medication, it is just an "exposure". :)
Also, I found out that some of the kids in his study who started 2 years ago are ready for their food challenge! Their IgE has dropped below 2 and they have been tolerating their maintenance dose for over a year. So, they will start their food challenges in September. They are ready to challenge now, but it is such a labor intensive process that Duke simply doesn't have the staff to handle the food challenges. It is an all day process and requires one or two people to be in the room the entire time, so they have to schedule them way out. I hope to have good news to share this fall about those first kids. :)
Also, I found out that some of the kids in his study who started 2 years ago are ready for their food challenge! Their IgE has dropped below 2 and they have been tolerating their maintenance dose for over a year. So, they will start their food challenges in September. They are ready to challenge now, but it is such a labor intensive process that Duke simply doesn't have the staff to handle the food challenges. It is an all day process and requires one or two people to be in the room the entire time, so they have to schedule them way out. I hope to have good news to share this fall about those first kids. :)
Thursday, July 14, 2011
One more down!
We have been on treatment for over 2 months now! My how time flies! I feel like I have learned so much and I am very happy with everything and our efforts. My son is doing great...his environmental allergies are under control, his peanut allergy is being treated and he is doing great on the treatment and he no longer has any real tilt, so his eye surgery was a success! I feel like this is the "healthiest" he has been since he was born! Although we are still dealing with the allergies, the treatments are working and he is doing so great! We are truly blessed! We had another updose of peanut this week and all is well! We go back again on the 25th!
Thursday, July 7, 2011
Still going strong
We are now up another dose and doing well! My son is handling the treatment with no issues so far and we are so grateful and blessed! He has also been suffering all spring from congestion and obvious pollen allergies or some kind of environmental allergies. So, after talking with the Duke team and our local allergist, we started him on first Zyrtec to see if that would help him...we tried it for about a month and it did help, but didn't clear things up completely. So, we started him on Nasonex nasal spray. Within 3 days, his congestion cleared completely and hasn't been back! Oh gosh, I wish we had started it earlier...he is so much more comfortable...all day and all night. His sleep has been great and he is just in better spirits all day since he isn't sneezing and wiping his drippy nose all day. So, we just do one squirt a day in each side of his nose and that does the trick! We still do the Zyrtec too just to keep the histamine in his system to help with the other symptoms, but the Nasonex seems to really do well for him, so I am happy to have it and he takes it like a champ. :)
So, in our little allergy corner of the world, all is well right now! We will head back to Duke next Monday for another dose increase and then later this month, I think they will do bloodwork again...has it really been 3 months already since we started? I don't pay attention to the calendar much with his doses, we just do it each day and when the bag of doses starts looking low, then I know it is time to head back again soon! I really like that feeling because it means we are making progress! :)
I also really like going to Duke! It sounds silly, but the drive is simple and boring...just like I like it. It is long, but not unbearable. Then it is nice to chat with the other parents and hear their stories and to see how the others kids and other trials are doing. It is also nice to discuss my son with the doctors and nurses and just discuss allergy research in general. All-in-all, not a bad way to spend a day and I leave knowing that my son is in good hands there!
So, in our little allergy corner of the world, all is well right now! We will head back to Duke next Monday for another dose increase and then later this month, I think they will do bloodwork again...has it really been 3 months already since we started? I don't pay attention to the calendar much with his doses, we just do it each day and when the bag of doses starts looking low, then I know it is time to head back again soon! I really like that feeling because it means we are making progress! :)
I also really like going to Duke! It sounds silly, but the drive is simple and boring...just like I like it. It is long, but not unbearable. Then it is nice to chat with the other parents and hear their stories and to see how the others kids and other trials are doing. It is also nice to discuss my son with the doctors and nurses and just discuss allergy research in general. All-in-all, not a bad way to spend a day and I leave knowing that my son is in good hands there!
Monday, June 13, 2011
Another day, another dose
We just got back from our next updose appointment. Everything went well. He did fine with the next dose and no reaction or issues! Yay! We also got his bloodwork back - his IgE was 8.52...can't wait to see it go down!!!
Thursday, June 9, 2011
6 week post-op eye appointment
It has been six weeks since our son had his strabismus surgery on his left eye to correct his 4th Cranial Nerve Palsy. We saw our doctor on Tuesday and it went so well I keep pinching myself to make sure I am not dreaming!
His doctor checked out his eyes and measured the alignment and declared, "Man, I am good". We agreed! The surgeon did a wonderful job and the issue has been fixed. My son no longer has to tilt his head to keep from seeing double! He stopped tilting pretty much within 24 hours of his surgery and hasn't reverted at all. Now, sometimes he does still tilt, but we have noticed that it is when he is tired or looking at something in his lap and we believe that it is merely muscle memory/habit rather than a need to do it because he can stay midline in the same position.
So, thank God for our wonderful doctor and for getting us over this hurdle! Now our son can proceed with his head straight and eyes aligned...much easier to get through life if you don't start out tilted! ;)
His doctor checked out his eyes and measured the alignment and declared, "Man, I am good". We agreed! The surgeon did a wonderful job and the issue has been fixed. My son no longer has to tilt his head to keep from seeing double! He stopped tilting pretty much within 24 hours of his surgery and hasn't reverted at all. Now, sometimes he does still tilt, but we have noticed that it is when he is tired or looking at something in his lap and we believe that it is merely muscle memory/habit rather than a need to do it because he can stay midline in the same position.
So, thank God for our wonderful doctor and for getting us over this hurdle! Now our son can proceed with his head straight and eyes aligned...much easier to get through life if you don't start out tilted! ;)
Tuesday, May 31, 2011
First updose trip!
Today we traveled to Duke for our first "regular" visit. We moved up to the next dose and will spend the next two weeks with that size dose. Today, they took his height, weight, blood pressure and listened to his heart and lungs, then we fed him his dose for the day and the waiting game began! He is monitored for two hours after ingesting the peanut protein to make sure he is able to handle that dose. He was fine today...at one point they thought they heard a little rattle in the chest, but it was nothing and was probably just some general congestion from the cold he has had. So, he did just fine and we headed home with our next bag of doses! We will go back in two weeks for our next visit.
Today was fun in that we got to visit with other families who are doing the different trials. One girl is on the same schedule as our son. It will be neat to see them both progress together. It was also nice to see some of the older kids and we saw one family heading home with their maintenance dose of peanut and they won't return until the fall! I can't wait to get him to the maintenance dose. If all goes well, we will hit that in 10 months. If a child has any issues, sometimes they will drop them back a dose or two (or more) to let their bodies figure it out and catch up again. So, again, it is very individualized and focused on that kid or adult.
So, it was an exhausting day, but a good one!
Today was fun in that we got to visit with other families who are doing the different trials. One girl is on the same schedule as our son. It will be neat to see them both progress together. It was also nice to see some of the older kids and we saw one family heading home with their maintenance dose of peanut and they won't return until the fall! I can't wait to get him to the maintenance dose. If all goes well, we will hit that in 10 months. If a child has any issues, sometimes they will drop them back a dose or two (or more) to let their bodies figure it out and catch up again. So, again, it is very individualized and focused on that kid or adult.
So, it was an exhausting day, but a good one!
Friday, May 20, 2011
Cooking plans update
Well, what is that saying about the best laid plans? I am trying to get us all to eat healthier, but life keeps sneaking up on me! The work involved in eating healthy in comparison to not is an issue and making it hard for me to get it together! I just need to do it though! I need to get a routine and some basic things in place for sure. My issue is that we get home from work and I need to get food on a plate for my son almost immediately when we get home. I don't have an hour or even 30 minutes to prepare a meal for him. I have to get him fed so that I can get his peanut dose to him and have a full 2 hours to monitor him before he goes to bed.
So, that is my new goal....getting things prepped and ready so that I can quickly get it on a plate for him. I tried freezing the chicken nuggets I made on Sunday....they were fantastic on Sunday, but when I prepared them after freezing, they were dried out and yucky.
So, I am just going to have to compromise on a few things. I am going to look for some organic convenience foods that I can feel better about serving him. I do manage to get fruit or veggies on his plate too, so I feel better about that.
Any recommendations on some healthy, organic foods that are easy to get on a plate and safe for a 17 month old to eat?
So, that is my new goal....getting things prepped and ready so that I can quickly get it on a plate for him. I tried freezing the chicken nuggets I made on Sunday....they were fantastic on Sunday, but when I prepared them after freezing, they were dried out and yucky.
So, I am just going to have to compromise on a few things. I am going to look for some organic convenience foods that I can feel better about serving him. I do manage to get fruit or veggies on his plate too, so I feel better about that.
Any recommendations on some healthy, organic foods that are easy to get on a plate and safe for a 17 month old to eat?
Sunday, May 15, 2011
Cooking plans for the week....
I have been reading a book, The Unhealthy Truth, and am going to amp up my removal of processed foods from our diet. So, this week, we will get back into cooking some more. This week though, I have to get some things cooked today that I can pull out easily to feed our son during the week. It is tough getting his dinner in as soon as we get home so that he can get his dose of peanut flour prior to bedtime. I have to have things that I can fix in minutes. So, rather than buy fake chicken nuggets with who knows what in them and flourescent mac and cheese, I am going to make some today and freeze them into single servings that I can easily reheat for him.
The other goal for today is to get things ready for the week for dinners for the rest of us! I went to the local farmers market yesterday and it was wonderful! I bought some broccoli, onions, potatoes, ground beef, lettuce and asparagus. So, the goal will be to use all of that this week and head back again on Saturday for more! :)
So, today I am making mac and cheese, chicken nuggets, chicken egg noodle casserole, and anything else I can think up! :)
The other goal for today is to get things ready for the week for dinners for the rest of us! I went to the local farmers market yesterday and it was wonderful! I bought some broccoli, onions, potatoes, ground beef, lettuce and asparagus. So, the goal will be to use all of that this week and head back again on Saturday for more! :)
So, today I am making mac and cheese, chicken nuggets, chicken egg noodle casserole, and anything else I can think up! :)
In it for the long haul....
I did want to take a moment to talk about how our life is going to change by participating in this trial. For right now, the only change will be that every day, our son will have a dose after he eats his dinner and we will monitor him for 2 hours afterwards. Then every two weeks for 10-12 months, we will go back to the clinic for the next dose. Other than that, nothing changes. Our house is still peanut-free....we are still to remain vigilant about making sure he does not have peanut in any form or via cross-contamination. This will be the same throughout the whole trial. So, even though they see desensitization pretty early in the trials, that doesn't change anything about how we operate and how he eats. Also...this is a long trial. OIT is not something that you can complete in a month or two. We will spend 10 - 12 months working on building up to his maintenance dose...then we spend at least a year, if not longer, on the maintenance dose. During that time, we only have to go in every 3 or 4 months to do testing/bloodwork. Once his IgE level hits less than 2 and he has been on maintenance for at least a year, then we can do the food challenge. However, there is no exact date...every kid is different and their IgE numbers respond in the same general trend, but they don't all reach below 2 at the same time. So, we are in this for the long haul...this isn't a magic bullet that you just swallow and you are cured. We have to work hard for this and I can tell you that every minute we spend doing this will be worth if he is able to be safer than he is today! If we are also able to contribute to the research and they are able to get the treatment out to other kids, then it will be worth it!
Friday, May 13, 2011
Sad to know that some people would experience anaphylaxis from this small amount. This is the same dose that we got on Wednesday at the clinic.
Every two weeks or so, we will return for the next dose. They will give him the dose there and then monitor him for two hours to make sure everything is okay with the dose and that he is able to tolerate it well enough to move on to that dose.
The things we have to pay attention to are to make sure that he has something in his stomach prior to his dose...kids seem more likely to have a reaction if they take it on an empty stomach. We also have to make sure he is not sick...if he has a fever or is "sick" in any way, then we don't dose. It is okay for him to skip a dose or two and they would rather that we skip the dose than risk him reacting. It seems as though when the body is busy fighting off something else, that it is more likely to react to the allergen. So, it is better to skip it and let the body do its thing with the virus or whatever and then get back to the immunotherapy in a day or so. If the fever or whatever lingers, then we would head back to them to give him the next dose just to make sure he is okay and that all is well. The third thing we have to keep in mind is exercise after the dose...now, with a 17 month old, this isn't exactly a big deal, but for older kids and adults, they recommend not engaging in serious exercise after a dose (like running or aerobics or swimming). Normal 17 month old activity is just fine though! :)
So, as you can see, they have learned a lot about the treatment already and we are able to benefit from all that they have learned from the other adults and kids in the earlier studies. The safety record of the trials is really good and safety is always priority number one! I wouldn't have it any other way of course!
Wednesday, May 11, 2011
Day 3 - OIT Peanut Clinical Trial
So, today was day 3 and while it was the end to a stressful three days, it is only the beginning for us. :) Today, we went in to the clinic and they did his vitals - blood pressure, temperature, height/weight, listened to heart and lungs and checked him out from head to toe. They also asked about any changes and how he did last night. Then, we mixed up his starting dose with some applesauce and fed it to him. He had some breakfast already and then he ate more while we were there. They have found that it is best not to give them the dose on an empty stomach...they do better when it comes at the end of a meal or when the stomach is already working on digesting some other stuff. Interesting! Anyway, he ate his dose and then we played and talked and waited. We have to wait for two hours after his dose to make sure that he is okay and not reacting in any way. So, we use that time to chat and play and just hang out. It is actually not bad at all! They are super nice and from now on, there will usually be another kid or more in the same area with us, so it is nice to meet other families and have the kids play.
Oh, I did want to say that I am going to keep it fairly general on here. I will not be listing the exact doses or specifics about the protocols used in the study. We didn't sign any kind of confidentiality agreement or anything like that...I just feel strongly that the study is not approved for treatment and I don't want anyone to think that they can attempt to do this on their own or convince their allergist to attempt it! The study is very deliberate, but also very individualized. For example, if my son had reacted yesterday to the second dose, then he would have started at the first dose size...there is no one size fits all here. They are very concerned with safety and that comes before anything in the study and the research. So, anyway, that is why you won't ever read any numbers or specifics on here. However, I do want to share the general process so that anyone else who is considering enrolling in a trial has an idea of what to expect. :)
So, after two hours of playing, they checked him out again and all was well. We made our next appointment, they gave me his bag of little plastic containers with each dose measured and labeled and we were on our way. Oh, the other thing we got today was a medical action plan - when to do what as far as Epi and Benadryl. It pretty much is the same as what we have now...for anything where two systems are involved or that looks severe - use the Epi! Then follow up with Benadryl and call 911. If it is just a little redness or something very mild, Benadryl should be fine, but again, monitor and use the Epi. As I discussed with our local allergist, they said the same...the EpiPen will save a life....don't be afraid to use it!
Now we are back home and tomorrow we will start our first day of home dosing....
Oh, I did want to say that I am going to keep it fairly general on here. I will not be listing the exact doses or specifics about the protocols used in the study. We didn't sign any kind of confidentiality agreement or anything like that...I just feel strongly that the study is not approved for treatment and I don't want anyone to think that they can attempt to do this on their own or convince their allergist to attempt it! The study is very deliberate, but also very individualized. For example, if my son had reacted yesterday to the second dose, then he would have started at the first dose size...there is no one size fits all here. They are very concerned with safety and that comes before anything in the study and the research. So, anyway, that is why you won't ever read any numbers or specifics on here. However, I do want to share the general process so that anyone else who is considering enrolling in a trial has an idea of what to expect. :)
So, after two hours of playing, they checked him out again and all was well. We made our next appointment, they gave me his bag of little plastic containers with each dose measured and labeled and we were on our way. Oh, the other thing we got today was a medical action plan - when to do what as far as Epi and Benadryl. It pretty much is the same as what we have now...for anything where two systems are involved or that looks severe - use the Epi! Then follow up with Benadryl and call 911. If it is just a little redness or something very mild, Benadryl should be fine, but again, monitor and use the Epi. As I discussed with our local allergist, they said the same...the EpiPen will save a life....don't be afraid to use it!
Now we are back home and tomorrow we will start our first day of home dosing....
Tuesday, May 10, 2011
Day 2 - OIT Peanut Clinical Trial
Day two began at 8 am again. This one seemed like a breeze! We came in and did vitals, then got our first dose in applesauce. It was such a tiny amount after yesterday!! The goal for today was to get him to the first dose level. The total dose for today was SO much smaller than what we did yesterday, so no one expected him to even blink at these doses...and he didn't. He went through just fine. We did the next dose every 30 minutes until he made it to the maximum dose for the day and then we waited 2 hours to make sure there was no reaction. So, that is where we will start out our dosing. Tomorrow we will go in for our first official dose. Over the course of the next 10 - 12 months, we will go back every two weeks to get a new dose. They will do bloodwork every 3 months or so and skin tests once a year. After we reach the maximum dose, then we get to do the maintenance dose until his peanut IgE drops below 2...then we food challenge again! If he passes the food challenge, then we go a month with nothing...no dose, no exposure...then we food challenge again. If he passes that, then we "open challenge"...which means he eats something made with peanuts....like a cookie or something. That is a ways away and in the meantime, he will get a daily dose of peanut. It sounds crazy, but it seems to be working for a number of kids and adults to help them lose their allergies.
So...more to come...much more! :)
So...more to come...much more! :)
Day 1 - OIT Peanut Clinical Trial
Whew...what a day! Our son finished his first day as part of an Oral Immunotherapy clinical trial for peanut allergy. The goal of the trial is to number one, achieve a level of desensitization so that an accidental exposure won't cause a reaction, and number two, to see if the treatment can help him achieve tolerance, which is basically the same thing as losing his allergy completely! So, we began!
We started at 8 am and did the normal stuff...height, weight, history and then skin test. They test different concentrations of peanut along with some other allergens (like weeds, grasses, trees, cats, pecans, dust mites). They don't know of any connections with those in particular, but just want to see if there is any significant correlation to the peanut allergy for any of those. He, of course, tested positive for peanut, but not all of the concentrations, just the higher ones. He didn't test positive for any of the other allergens they tested. That was good news!
Then we did the IV and blood draw. They had put numbing cream on him earlier, so the stick didn't hurt him, but he sure didn't like being held down! Once he had the IV in, he was fine. They use an IV on this day just in case he needs fluids during the reaction.
So, then we moved to the scary part! This was the part I had been dreading. In earlier studies, the skin and blood tests and a history of a reaction was sufficient to enroll in the trials. Well, they were criticized for this and people said things like "oh, those kids probably weren't even allergic to begin with". So, they had to include a food challenge on the first day of the future trials...so there we were. We sat in a room with a bunch of EpiPen Jrs and two doctors/nurses at all times. I was nervous, but never afraid. They were truly wonderful and I had no fear that they would push my son or do anything to harm him. Anyway, he had some peanut on an animal cracker...and we waited. Nothing. More peanut in applesauce...nothing. They documented everything all the way. More peanut...more nothing. So, then...my 17 month old fell asleep! So, after the 30 minute waiting period between doses, we woke him up and decided to increase more frequently to try to get his body to respond. So, we gave him that dose in some applesauce and within a few minutes...a little runny nose....cheeks turned a little red....lips started to look blotchy and swollen...then in the same minute, he started scratching at his nose and chin.....REACTION! They were so on top of it. I mean, I was going...umm...maybe...yeah, a little swollen...uhh....and they were like, nope, that is a reaction, that is all we need to see! So, they gave him Benadryl immediately (which was already measured in a syringe and ready to go). Then we waited. They kept us there for another 3 hours just to observe him and make sure he was okay. He played for a bit, then fell asleep again and woke up and played some more. He was just fine! In total, he consumed 296 mg of peanut flour. One peanut is equivalent to 300 mg. So, he had almost a whole peanut before he had a reaction.
So, they took out the IV and sent us on our way for the day. During the course of the day they just talked to us a lot about allergies and the studies and just life in general! It was wonderful to hear all about the studies and research and just to chat with people who are in the thick of it!
I was SO impressed with the clinic and all the wonderful people there...it was really a pleasant day considering! So, now we move on......
We started at 8 am and did the normal stuff...height, weight, history and then skin test. They test different concentrations of peanut along with some other allergens (like weeds, grasses, trees, cats, pecans, dust mites). They don't know of any connections with those in particular, but just want to see if there is any significant correlation to the peanut allergy for any of those. He, of course, tested positive for peanut, but not all of the concentrations, just the higher ones. He didn't test positive for any of the other allergens they tested. That was good news!
Then we did the IV and blood draw. They had put numbing cream on him earlier, so the stick didn't hurt him, but he sure didn't like being held down! Once he had the IV in, he was fine. They use an IV on this day just in case he needs fluids during the reaction.
So, then we moved to the scary part! This was the part I had been dreading. In earlier studies, the skin and blood tests and a history of a reaction was sufficient to enroll in the trials. Well, they were criticized for this and people said things like "oh, those kids probably weren't even allergic to begin with". So, they had to include a food challenge on the first day of the future trials...so there we were. We sat in a room with a bunch of EpiPen Jrs and two doctors/nurses at all times. I was nervous, but never afraid. They were truly wonderful and I had no fear that they would push my son or do anything to harm him. Anyway, he had some peanut on an animal cracker...and we waited. Nothing. More peanut in applesauce...nothing. They documented everything all the way. More peanut...more nothing. So, then...my 17 month old fell asleep! So, after the 30 minute waiting period between doses, we woke him up and decided to increase more frequently to try to get his body to respond. So, we gave him that dose in some applesauce and within a few minutes...a little runny nose....cheeks turned a little red....lips started to look blotchy and swollen...then in the same minute, he started scratching at his nose and chin.....REACTION! They were so on top of it. I mean, I was going...umm...maybe...yeah, a little swollen...uhh....and they were like, nope, that is a reaction, that is all we need to see! So, they gave him Benadryl immediately (which was already measured in a syringe and ready to go). Then we waited. They kept us there for another 3 hours just to observe him and make sure he was okay. He played for a bit, then fell asleep again and woke up and played some more. He was just fine! In total, he consumed 296 mg of peanut flour. One peanut is equivalent to 300 mg. So, he had almost a whole peanut before he had a reaction.
So, they took out the IV and sent us on our way for the day. During the course of the day they just talked to us a lot about allergies and the studies and just life in general! It was wonderful to hear all about the studies and research and just to chat with people who are in the thick of it!
I was SO impressed with the clinic and all the wonderful people there...it was really a pleasant day considering! So, now we move on......
Friday, April 29, 2011
Ocular Tort Surgery follow-up - one week later
So, it has been a week since my son had surgery and I am still staring at him all the time! He is completely midline all the time now and I can hardly believe it. I mean, he has been tilted for as long as he has been able to hold up his head and now....straight. It is strange and exciting all in one. I was really nervous about the surgery and anxious about the results, but seeing him now with his head held straight, it shows me that we made the right decision for him. The tilt was kind of cute and didn't seem to bother him...now. But, think about being a growing child and trying to play ball or run around the yard or swim with your head always tilted. Not to mention that torticollis can cause other muscular issues and bone issues later on in life if left untreated.
So, we will go back in 6 weeks to determine the final "result" of the surgery, but for now, we are all more than pleased and he has been healing well and doing great!
So, we will go back in 6 weeks to determine the final "result" of the surgery, but for now, we are all more than pleased and he has been healing well and doing great!
Saturday, April 23, 2011
Ocular Tort Surgery
So, on Wednesday, April 20, 2011, our son had strabismus surgery on his left eye to correct his 4th Cranial Nerve Palsy. This condition caused his eyes to be aligned improperly and he had to tilt his head to the right to avoid double vision. It has been a long road, but we are finally seeing the finish line!
We were up early to head to the surgery center and were checked in and ready to go by 7:30 am. Our pediatric ophthalmologist came in for one final look before surgery and just a chance to speak with us again. Then I carried our son back to the OR and they put a mask on him to put him to sleep. He was out in less than 30 seconds. I was in the waiting room at around 7:40 and at 8:05, our doctor was chatting with us about how well the surgery had gone. We waited another ten minutes maximum and then went to the recovery area. Our son was very sleepy...they gave him a little extra sedative to keep him calm so that he wouldn't scratch or rub his eye too much. So, we just sat and held him until he started to get a little more alert. We gave him some juice and water and he drank it down fast and then was sleeping on and off. By 9:00, we were dressed and heading out the door to go home. He slept on the way home (about an hour) and then when we got home and saw his sister and his grandparents waiting for us, he jumped out of my arms and started playing.
He did develop a fever in the afternoon, but he also has had a cough and some congestion, so I think that it was viral and not surgery related (his sister had a fever today). His eye is red in the outer corner and it is swollen under his eye, but otherwise, you would never know!
We did a post-op appointment today and the doctor said that he looked about as good as it can get and that he felt like the results were excellent and he was pretty well "fixed".
We will do another follow-up on June 7 to see how well it looks after it is completely healed.
We were up early to head to the surgery center and were checked in and ready to go by 7:30 am. Our pediatric ophthalmologist came in for one final look before surgery and just a chance to speak with us again. Then I carried our son back to the OR and they put a mask on him to put him to sleep. He was out in less than 30 seconds. I was in the waiting room at around 7:40 and at 8:05, our doctor was chatting with us about how well the surgery had gone. We waited another ten minutes maximum and then went to the recovery area. Our son was very sleepy...they gave him a little extra sedative to keep him calm so that he wouldn't scratch or rub his eye too much. So, we just sat and held him until he started to get a little more alert. We gave him some juice and water and he drank it down fast and then was sleeping on and off. By 9:00, we were dressed and heading out the door to go home. He slept on the way home (about an hour) and then when we got home and saw his sister and his grandparents waiting for us, he jumped out of my arms and started playing.
He did develop a fever in the afternoon, but he also has had a cough and some congestion, so I think that it was viral and not surgery related (his sister had a fever today). His eye is red in the outer corner and it is swollen under his eye, but otherwise, you would never know!
We did a post-op appointment today and the doctor said that he looked about as good as it can get and that he felt like the results were excellent and he was pretty well "fixed".
We will do another follow-up on June 7 to see how well it looks after it is completely healed.
Thursday, April 14, 2011
Pre-Op appointment
Today was our pre-op appointment with the pediatric ophthalmologist that will be doing our son's surgery for 4CNP - 4th Cranial Nerve Palsy. His left eye is affected and they will be moving one of the bottom muscles that control the placement of the eye to another spot on the eye to help it align properly. Right now, his eyes are not aligned, which causes him to tilt his head to the right to compensate....when he doesn't tilt his head, he has double vision. So, the tilt eliminates the double vision. If the surgery is successful, then it will also eliminate the double vision.
The appointment today was quick. The doctor just needed to check him again to make sure that his original measurement was still accurate. Basically there are three approaches to the condition. One is to move the muscle just a short distance, the other is a medium distance, and the third option is to remove the muscle completely. As you can see, these are mild, moderate and severe approaches to the issue. Based on his measurements, our son will need the moderate approach. They never start with the severe approach and only use it when nothing else has worked and there is still a major issue. So, our doctor feels that the alignment issue is moderate and that surgical strategy should work best for our son. I am confident in his measurements and skill. He does this surgery over 10 times a week! So, I know our son is in good hands.
I will update next week after the surgery. We also have a pre-op appointment with our pediatrician for his pre-op physical assessment. This is where we were in January and got stopped when the pediatrician deemed his cold too severe to proceed. It was inconvenient to reschedule, but it really was best for him...he was pretty sick. This time around he appears to have seasonal allergies, so he is sneezing and congested, but not the same as a cold. So, we should be good to go next week!
The appointment today was quick. The doctor just needed to check him again to make sure that his original measurement was still accurate. Basically there are three approaches to the condition. One is to move the muscle just a short distance, the other is a medium distance, and the third option is to remove the muscle completely. As you can see, these are mild, moderate and severe approaches to the issue. Based on his measurements, our son will need the moderate approach. They never start with the severe approach and only use it when nothing else has worked and there is still a major issue. So, our doctor feels that the alignment issue is moderate and that surgical strategy should work best for our son. I am confident in his measurements and skill. He does this surgery over 10 times a week! So, I know our son is in good hands.
I will update next week after the surgery. We also have a pre-op appointment with our pediatrician for his pre-op physical assessment. This is where we were in January and got stopped when the pediatrician deemed his cold too severe to proceed. It was inconvenient to reschedule, but it really was best for him...he was pretty sick. This time around he appears to have seasonal allergies, so he is sneezing and congested, but not the same as a cold. So, we should be good to go next week!
Friday, April 8, 2011
We have a date!
Okay...we have a date for our start of the clinical trial for peanut immunotherapy! We will travel to Duke for our first appointment on Monday, May 9. We will be there Monday, Tuesday and Wednesday for the testing, initial escalation and then his first "daily dose". I am nervous and excited all in one!
The other thing we are waiting on is his eye surgery....scheduled for April 20. I am ready to just get that done and over with so we can move on to the next set of appointments! I am nervous about the anesthesia part, but I am sure he will be just fine...these are great doctors we are working with and they do about 12 of these operations on kids every week!
The other thing we are waiting on is his eye surgery....scheduled for April 20. I am ready to just get that done and over with so we can move on to the next set of appointments! I am nervous about the anesthesia part, but I am sure he will be just fine...these are great doctors we are working with and they do about 12 of these operations on kids every week!
Saturday, April 2, 2011
Focusing on what we CAN do.....
When my son had his reaction to peanut and we started down our peanut-free path, all we could think about was what he would be missing out on and what we had to give up and change. I guess that is what most people deal with when they are faced with an allergy or any kind of medical or life condition that causes you to not be "normal" any more. So, my husband and I have talked a lot about what we can't have in the house and where we can't go because of the allergy. That is survival...a mistake on our part will cause harm to our son, so we have to be cautious.
However, we have now been in the game for over a month and things are starting to look up in a way. I mean, we are still diligent and we are still not out and about like we used to, but now we focus more on things he can have and can do. Another parent told me to focus on living and raising our son to live life to the fullest, even with an allergy!
So, that change of attitude along with the first signs of spring have made me feel a lot better and a whole lot less stressed! I am also feeling really good about getting started with the clinical trial in May and I am hoping that the treatment in the trial will be successful so that our son is able to do all the little things that we were so upset about him losing out on....like his Nan-Nan's famous peanut butter balls at Christmas! :)
However, we have now been in the game for over a month and things are starting to look up in a way. I mean, we are still diligent and we are still not out and about like we used to, but now we focus more on things he can have and can do. Another parent told me to focus on living and raising our son to live life to the fullest, even with an allergy!
So, that change of attitude along with the first signs of spring have made me feel a lot better and a whole lot less stressed! I am also feeling really good about getting started with the clinical trial in May and I am hoping that the treatment in the trial will be successful so that our son is able to do all the little things that we were so upset about him losing out on....like his Nan-Nan's famous peanut butter balls at Christmas! :)
Monday, March 21, 2011
Tweet, tweet....
I have been following some twitter accounts today of people who are at the big AAAAI conference this week. Very cool! https://twitter.com/#!/allergistmommy has done a great job of sharing information all day long about all the different research etc. Here is what I learned from her tweets today:
1. USE THE EPIPEN!!!! This mirrors what our allergist told us...EPI is first line of defense for food allergy, not Benadryl! Also, this just makes me angrier at our local ER where I took my son during his reaction- they never even offered the Epi because it wasn't "classic symptoms". Well, the new research throws that out the window and if it should ever happen again, I will know what to insist that they do for him!
2. There are new guidelines going out to all doctors and ERs to hopefully update them on what the research is showing and how to treat a reaction. Again, USE THE EPIPEN people!
3. Oral immunotherapy seems to work a little better than Sublingual immunotherapy, but there are more side effects from oral therapy. In my brain, this means that perhaps kids/adults who can't tolerate oral therapy, maybe sublingual is still an option for them that will help them achieve some level of desensitization without the side effects. For the rest of the folks though, the side effects seem minor and the oral IT is doing the job. Not a cure really, but it sure does beat doing nothing!
4. Some really cool research is coming out about testing people for allergies and being more accurate and more predictive. That is part of the issue now...lots of people test positive for an allergy, but might be able to actually tolerate the food or whatever. So, they are doing work on what they should be looking for in tests, etc.
5. Some cool news for egg and milk allergy folks...looks like a lot of kids can actually tolerate baked egg and baked milk and that putting that into the diet of those kids is like a form of IT and the kids seem to be "growing out" of their allergies more on this diet. (Now, don't try that at home folks...this is all clinical setting and monitored of course!) Also, though, there are some folks that are highly allergic to all forms and have to avoid completely. But, exciting news for a lot of people and hopefully this will get those kids doing a lesser form of IT and then when the real treatment is approved, those other kids who are more severe will hopefully benefit from that.
6. They are researching everything that they can get their hands on! The Chinese Herbal mixture seems to be showing some promising results at stopping anaphylaxis.....maybe even using this in combination with OIT or something could be an option in the future to help folks not have a bad reaction, etc.
Hoping to learn more as the week goes on! If you want to see more, look for #AAAAI on twitter.
1. USE THE EPIPEN!!!! This mirrors what our allergist told us...EPI is first line of defense for food allergy, not Benadryl! Also, this just makes me angrier at our local ER where I took my son during his reaction- they never even offered the Epi because it wasn't "classic symptoms". Well, the new research throws that out the window and if it should ever happen again, I will know what to insist that they do for him!
2. There are new guidelines going out to all doctors and ERs to hopefully update them on what the research is showing and how to treat a reaction. Again, USE THE EPIPEN people!
3. Oral immunotherapy seems to work a little better than Sublingual immunotherapy, but there are more side effects from oral therapy. In my brain, this means that perhaps kids/adults who can't tolerate oral therapy, maybe sublingual is still an option for them that will help them achieve some level of desensitization without the side effects. For the rest of the folks though, the side effects seem minor and the oral IT is doing the job. Not a cure really, but it sure does beat doing nothing!
4. Some really cool research is coming out about testing people for allergies and being more accurate and more predictive. That is part of the issue now...lots of people test positive for an allergy, but might be able to actually tolerate the food or whatever. So, they are doing work on what they should be looking for in tests, etc.
5. Some cool news for egg and milk allergy folks...looks like a lot of kids can actually tolerate baked egg and baked milk and that putting that into the diet of those kids is like a form of IT and the kids seem to be "growing out" of their allergies more on this diet. (Now, don't try that at home folks...this is all clinical setting and monitored of course!) Also, though, there are some folks that are highly allergic to all forms and have to avoid completely. But, exciting news for a lot of people and hopefully this will get those kids doing a lesser form of IT and then when the real treatment is approved, those other kids who are more severe will hopefully benefit from that.
6. They are researching everything that they can get their hands on! The Chinese Herbal mixture seems to be showing some promising results at stopping anaphylaxis.....maybe even using this in combination with OIT or something could be an option in the future to help folks not have a bad reaction, etc.
Hoping to learn more as the week goes on! If you want to see more, look for #AAAAI on twitter.
Sunday, March 20, 2011
Update on food allergy research
Got an extra hour around? This is a great discussion with three of the leading researchers into food allergy treatments! Good stuff!
http://www.medpagetoday.com/MeetingCoverage/AAAAI/25302
http://www.medpagetoday.com/MeetingCoverage/AAAAI/25302
Wednesday, March 16, 2011
Letting go of plans....
First of all, I am a planner. I like to plan things in advance and have my ducks in a row. A nice, neat row...and well, well in advance. Not that I don't like a little surprise, but I do like a good plan even better!
So, before my son had his reaction to peanut and was diagnosed, we had made plans to move our kids to a new daycare this summer. We like to have them in an in-home daycare rather than a big facility. Our current provider typically keeps kids until they turn 2, but she had made an exception to keep our oldest this year too because our little one would be with her. Well, our plan was to move them both to the new spot this summer and everyone was on board with that. Then the reaction happened and the rug got pulled out from under us!
Our current provider has been wonderful in regards to the allergy (and everything, really!). She has dealt with allergies before and her philosophy is that if she doesn't put the allergen in them to start with, they will never need the EpiPen! So, even though she knows how to use it, she would prefer to just keep them safe to begin with! So, I feel comfortable with having my son be with her. I got in contact with our planned new provider and emailed her to let her know about his diagnosis and to see if she felt like she would be able to deal with it. My philosophy was that I wanted her to know upfront that it wasn't just a matter of not serving PB&J and that if she didn't feel comfortable, no big deal, we would find another option! Well, she wasn't comfortable and was honest with us about it. So, the next thought was to just keep him with our current provider and then move our daughter to the new spot. Well, at the same time all of this is going on in my brain, our current provider has been really dreading us leaving, so she was planning to ask me to keep the kids with her longer!
So, when I asked her if our son could stay longer, she said she would love to keep them both. SO, after all of this planning and scheming, we are staying put! Whew! I feel tired just thinking about it!
Anyway, I am glad that the other provider was honest and told me up front that she didn't think she could make all the changes that would need to be made easily and that it would be very hard for her. I know exactly how she feels! It is hard. Our current provider has done a great job and she loves our kids, so I am just feeling fine that we are staying with her. She is truly a blessing in our lives and I feel such relief that I don't have to worry about my son going to another place right now. So, God has once again taken my plans and changed them for me! However, I have learned that whatever the new plan is like, it is always better in the long run than what I had planned! I feel so blessed that He is watching out for us and helping to guide me to the right path (even if there are some bumps on the path).
So, I have let go of the other plans and embraced the path that we have been on with our current provider! She truly is wonderful and my heart knows that this is what is right for us now!
So, before my son had his reaction to peanut and was diagnosed, we had made plans to move our kids to a new daycare this summer. We like to have them in an in-home daycare rather than a big facility. Our current provider typically keeps kids until they turn 2, but she had made an exception to keep our oldest this year too because our little one would be with her. Well, our plan was to move them both to the new spot this summer and everyone was on board with that. Then the reaction happened and the rug got pulled out from under us!
Our current provider has been wonderful in regards to the allergy (and everything, really!). She has dealt with allergies before and her philosophy is that if she doesn't put the allergen in them to start with, they will never need the EpiPen! So, even though she knows how to use it, she would prefer to just keep them safe to begin with! So, I feel comfortable with having my son be with her. I got in contact with our planned new provider and emailed her to let her know about his diagnosis and to see if she felt like she would be able to deal with it. My philosophy was that I wanted her to know upfront that it wasn't just a matter of not serving PB&J and that if she didn't feel comfortable, no big deal, we would find another option! Well, she wasn't comfortable and was honest with us about it. So, the next thought was to just keep him with our current provider and then move our daughter to the new spot. Well, at the same time all of this is going on in my brain, our current provider has been really dreading us leaving, so she was planning to ask me to keep the kids with her longer!
So, when I asked her if our son could stay longer, she said she would love to keep them both. SO, after all of this planning and scheming, we are staying put! Whew! I feel tired just thinking about it!
Anyway, I am glad that the other provider was honest and told me up front that she didn't think she could make all the changes that would need to be made easily and that it would be very hard for her. I know exactly how she feels! It is hard. Our current provider has done a great job and she loves our kids, so I am just feeling fine that we are staying with her. She is truly a blessing in our lives and I feel such relief that I don't have to worry about my son going to another place right now. So, God has once again taken my plans and changed them for me! However, I have learned that whatever the new plan is like, it is always better in the long run than what I had planned! I feel so blessed that He is watching out for us and helping to guide me to the right path (even if there are some bumps on the path).
So, I have let go of the other plans and embraced the path that we have been on with our current provider! She truly is wonderful and my heart knows that this is what is right for us now!
Sunday, March 13, 2011
To Trial or Not To Trial....
So, now that our son has a spot in a clinical trial for peanut desensitization, I have started to talk to people about it and search out other parents who are participating. Parents seem to fall into two categories when I see them talk about clinical trials:
Category 1 - Let's Go!
I guess,I fall in this category. We all seem to be folks who think, hey...my kid can have a reaction at any time, why not get them in this study to see if it will help and if they have a reaction, they are right there in a hospital when it happens. Let's get them fixed if we can or at least taped up enough to play!
Category 2 - My child is not a lab rat!
These parents are ones who are not willing to let their child be part of a science experiment. They might try the treatment when it is approved, but they are not ready now and not ready to take any extra risk. I have found that most of these folks have seen their child have a very serious reaction and just aren't willing to chance it. I understand completely and sometimes, I question my decision too!
However, at night before I go to sleep, I think about how not only will my son have a chance at being able to lead a more normal life without a fear of a reaction, but that his participation will also help all those other kids and adults out there with food allergies. So, although there is a risk, there is a risk every time my son takes a bit of anything, so I feel as though this is a carefully calculated risk and right now, one I am willing to take to facilitate his long-term health.
I hope that one day in this blog I will be able to write a post called "Treatment approved and available at local allergists' offices worldwide".
Category 1 - Let's Go!
I guess,I fall in this category. We all seem to be folks who think, hey...my kid can have a reaction at any time, why not get them in this study to see if it will help and if they have a reaction, they are right there in a hospital when it happens. Let's get them fixed if we can or at least taped up enough to play!
Category 2 - My child is not a lab rat!
These parents are ones who are not willing to let their child be part of a science experiment. They might try the treatment when it is approved, but they are not ready now and not ready to take any extra risk. I have found that most of these folks have seen their child have a very serious reaction and just aren't willing to chance it. I understand completely and sometimes, I question my decision too!
However, at night before I go to sleep, I think about how not only will my son have a chance at being able to lead a more normal life without a fear of a reaction, but that his participation will also help all those other kids and adults out there with food allergies. So, although there is a risk, there is a risk every time my son takes a bit of anything, so I feel as though this is a carefully calculated risk and right now, one I am willing to take to facilitate his long-term health.
I hope that one day in this blog I will be able to write a post called "Treatment approved and available at local allergists' offices worldwide".
Tuesday, March 8, 2011
Really? Seriously?
In reading up on the whole peanut allergy thing, I have run across MANY posts and articles and discussions about parents dealing with people who just don't "get it" when it comes to their child's allergy. They say that even grandparents or aunts and uncles will make comments to the parent like these: "you are just being overprotective", "a little bite won't hurt the kid, lighten up", or even "maybe they wouldn't be allergic if you let them eat it more often" and the winner, "I don't believe in food allergies". Really? Seriously?
Luckily, so far, our family and friends have been fantastic and have gone over and above in helping us keep our son safe. My mom threw away the peanut butter at her house and she lives 5 hours away from us! We met at a cabin for a ski weekend and everyone who came made sure to read all the labels and no one brought anything that was not safe for my son, even if he wouldn't be eating it. Then we traveled to my parents and again, they were great at making sure he was safe and checking with me before feeding him anything.
I think the biggest issue here is just the simple lack of respect on top of a basic lack of understanding. My parents started to educate themselves and ask questions about his allergy almost immediately after he was diagnosed. They didn't act like it wasn't a big deal and that I was just making it up. They took it seriously and they supported me in everything and respected the fact that I am his mother. They also took it seriously that as his family, they have a responsibility to keep him safe too. So, it seems to me that the folks making these comments, first of all, simply do not have an understanding of food allergies at all and secondly, do not respect the parent to make the call for their own kid.
So, my goal is to simply educate everyone I come across. Not in an obnoxious way (at least I hope not), but in a way that conveys to them exactly how serious the allergy is, but also that he is still a healthy little boy and is doing fine as long as we keep him safe. I think many people do not understand the aspect of cross-contamination at all...that is probably the hardest part to explain. Most people just say, "oh, he can't have peanut butter"...it is harder to explain why the person next to him shouldn't be eating it either because if it gets on their hands on the table and he touches it and puts his hand in his mouth, then he is eating it too. That part is tougher to explain AND tougher to manage. If all we had to worry about was him not eating it, that would be an easier task to handle.
Now, with all of this said, there are parents who do go to the extreme and they shelter their child so much that the child becomes fearful and isn't able to participate in many of life's great adventures. I am hoping that our family can find that balance between making sure he is always as safe as he can be and also making sure that he is enjoying being a kid. It is also important that we teach him to stand up for himself and that saying no to "food pushers" is okay! :) For now, we are pretty much in control of him because he is only 15 months old...as he gets more independent, we have to make sure he is able to keep himself safe too! We have already taught our daughter, who will be 3 this week, to say that "he is allergic to peanut" and "no peanuts - no thank you". She will help keep him safe too!
Anyway, I just feel very blessed that our family is SO supportive and so on top of things with our son. It really makes me feel all warm and fuzzy inside! It also reduces the stress level a notch! Thanks Mom and Dad and the rest of the family for being so great!! We also have a wonderful daycare provider who has also stepped up and is doing all she can to make sure he is safe when he is with her. I can't tell you how much that means to this working mom!
Luckily, so far, our family and friends have been fantastic and have gone over and above in helping us keep our son safe. My mom threw away the peanut butter at her house and she lives 5 hours away from us! We met at a cabin for a ski weekend and everyone who came made sure to read all the labels and no one brought anything that was not safe for my son, even if he wouldn't be eating it. Then we traveled to my parents and again, they were great at making sure he was safe and checking with me before feeding him anything.
I think the biggest issue here is just the simple lack of respect on top of a basic lack of understanding. My parents started to educate themselves and ask questions about his allergy almost immediately after he was diagnosed. They didn't act like it wasn't a big deal and that I was just making it up. They took it seriously and they supported me in everything and respected the fact that I am his mother. They also took it seriously that as his family, they have a responsibility to keep him safe too. So, it seems to me that the folks making these comments, first of all, simply do not have an understanding of food allergies at all and secondly, do not respect the parent to make the call for their own kid.
So, my goal is to simply educate everyone I come across. Not in an obnoxious way (at least I hope not), but in a way that conveys to them exactly how serious the allergy is, but also that he is still a healthy little boy and is doing fine as long as we keep him safe. I think many people do not understand the aspect of cross-contamination at all...that is probably the hardest part to explain. Most people just say, "oh, he can't have peanut butter"...it is harder to explain why the person next to him shouldn't be eating it either because if it gets on their hands on the table and he touches it and puts his hand in his mouth, then he is eating it too. That part is tougher to explain AND tougher to manage. If all we had to worry about was him not eating it, that would be an easier task to handle.
Now, with all of this said, there are parents who do go to the extreme and they shelter their child so much that the child becomes fearful and isn't able to participate in many of life's great adventures. I am hoping that our family can find that balance between making sure he is always as safe as he can be and also making sure that he is enjoying being a kid. It is also important that we teach him to stand up for himself and that saying no to "food pushers" is okay! :) For now, we are pretty much in control of him because he is only 15 months old...as he gets more independent, we have to make sure he is able to keep himself safe too! We have already taught our daughter, who will be 3 this week, to say that "he is allergic to peanut" and "no peanuts - no thank you". She will help keep him safe too!
Anyway, I just feel very blessed that our family is SO supportive and so on top of things with our son. It really makes me feel all warm and fuzzy inside! It also reduces the stress level a notch! Thanks Mom and Dad and the rest of the family for being so great!! We also have a wonderful daycare provider who has also stepped up and is doing all she can to make sure he is safe when he is with her. I can't tell you how much that means to this working mom!
Sunday, March 6, 2011
Adventures in Bread
So, earlier in February, I was sifting through all the healthy living stuff online (boy, is there a lot of it) and just seeing what I could do that was a small start. One small statement on one page kind of stuck in my head. The person writing the blog, and gosh I can't remember which one, made a single statement about bread. His take was that sure, whole wheat bread is healthy....but did you ever think about what they put in it to keep it on the shelf so long? Fresh baked bread doesn't stay fresh for too long, so how is it that the bread we buy at the grocery store is able to last so long....hmm...
So, I headed over to Amazon.com and checked out the reviews for bread machines...I mean, I am trying to be more "home made", but I don't have that kind of time or skill. I found one I liked - Emerilware Bread Machine and I ordered it.
The big bread machine arrived along with a cookbook I ordered and after a few days, I worked up the courage to try it out.
I started with a wheat bread since that is the goal..healthy, homemade bread. Well, it was good when it first came out of the machine, but after a little while it got pretty dried out....not so good then.
Yesterday, I tried again with a simple white sandwich loaf. Success!! It is yummy! It is a little bit dry too, so I will probably need to add some more moisture in the future, but otherwise, it tastes great! My kids ate it right up and today I made grilled cheese sandwiches with it and it was really good. The loaf was really tall though...much bigger than a typical sandwich slice, so I had to improvise and cut it down a little. Next time, I might try taking it out and baking it in the oven in two smaller pans to get more of a sandwich size loaf.
Either way, it was good and I feel much better about eating it, even though it is white bread, than I do about eating the store bought kind. Now, does this mean I will never buy another loaf of bread...probably not. However, if I plan ahead, I do have the option to make a healthy bread for my family now!
So, I headed over to Amazon.com and checked out the reviews for bread machines...I mean, I am trying to be more "home made", but I don't have that kind of time or skill. I found one I liked - Emerilware Bread Machine and I ordered it.
The big bread machine arrived along with a cookbook I ordered and after a few days, I worked up the courage to try it out.
I started with a wheat bread since that is the goal..healthy, homemade bread. Well, it was good when it first came out of the machine, but after a little while it got pretty dried out....not so good then.
Yesterday, I tried again with a simple white sandwich loaf. Success!! It is yummy! It is a little bit dry too, so I will probably need to add some more moisture in the future, but otherwise, it tastes great! My kids ate it right up and today I made grilled cheese sandwiches with it and it was really good. The loaf was really tall though...much bigger than a typical sandwich slice, so I had to improvise and cut it down a little. Next time, I might try taking it out and baking it in the oven in two smaller pans to get more of a sandwich size loaf.
Either way, it was good and I feel much better about eating it, even though it is white bread, than I do about eating the store bought kind. Now, does this mean I will never buy another loaf of bread...probably not. However, if I plan ahead, I do have the option to make a healthy bread for my family now!
Saturday, March 5, 2011
Peanut is the DEBIL!
Okay....in The Waterboy, Kathy Bates said fooseball was the debil, but in our house, peanuts are the debil!
On January 31, 2011, our son had a reaction to peanut butter. It was not fun for any of us. He had a small sugar cookie at daycare that had peanut butter mixed in the batter. He ate it around 4:15. I picked him up at 4:30 and his eyes were bloodshot and he was sneezing and itchy. His cheeks and nose were red. We got in the car and luckily pass by the hospital on the way home, so we stopped and were in a room by 4:45.
Initially, they diagnosed him with an ear infection and pink eye. I questioned that pink eye would come on so quickly and I mentioned that we had a positive skin test to peanut at 4 months, but that it wasn't 100%. They wanted to see a more traditional allergic reaction, so I told them we would wait. Good thing I did.
He started to develop small itchy bumps on his stomach and scalp...these are normally how his eczema flare ups start, so I was pointing them out to them...they said it wasn't a welt/hive, so it wasn't a reaction. Okay. So, I told them we would just continue to wait. By about 5:45, the hives they wanted to see started to appear and by 6:00, his legs were covered in hives and he was very itchy. He got prednisone at 6:15 and then started to appear sluggish and sick. At 6:30, he vomited. I am not sure if it was the prednisone or the reaction, but he did perk up after he threw up. Then they gave him more prednisone and we stayed there until around 8:30. He still had hives, but the itching was under control. He never had any breathing issues or drop in blood pressure, etc.
I am still a little upset that they tried to rush me out of there with an ear infection and pink eye. Thank goodness I stood my ground and waited. I mean, they were very nice, but they didn't see the "clinical signs" of a reaction, so in their minds, it wasn't happening...but mom's know their kids and I knew something wasn't right.
Anyway - we now had a peanut allergic child and all the stress and worry that goes along with it. I am a researcher and as soon as he was safe, I started my research. I was happy to see that there are universities doing research on treating kids and adults with food allergies. So, I began contacting the two closest ones to us to see what clinical trials they had openings in. If there was a chance to participate, I was going to take it. Johns Hopkins is only working with kids 12 and up. Duke University had an opening....we are in!!
We will start treatment in May. It will be a lot of stress and a lot of work on our part, but so worth it if we can desensitize him enough to make him safe and not constantly worried about a reaction. Wish us luck!
On January 31, 2011, our son had a reaction to peanut butter. It was not fun for any of us. He had a small sugar cookie at daycare that had peanut butter mixed in the batter. He ate it around 4:15. I picked him up at 4:30 and his eyes were bloodshot and he was sneezing and itchy. His cheeks and nose were red. We got in the car and luckily pass by the hospital on the way home, so we stopped and were in a room by 4:45.
Initially, they diagnosed him with an ear infection and pink eye. I questioned that pink eye would come on so quickly and I mentioned that we had a positive skin test to peanut at 4 months, but that it wasn't 100%. They wanted to see a more traditional allergic reaction, so I told them we would wait. Good thing I did.
He started to develop small itchy bumps on his stomach and scalp...these are normally how his eczema flare ups start, so I was pointing them out to them...they said it wasn't a welt/hive, so it wasn't a reaction. Okay. So, I told them we would just continue to wait. By about 5:45, the hives they wanted to see started to appear and by 6:00, his legs were covered in hives and he was very itchy. He got prednisone at 6:15 and then started to appear sluggish and sick. At 6:30, he vomited. I am not sure if it was the prednisone or the reaction, but he did perk up after he threw up. Then they gave him more prednisone and we stayed there until around 8:30. He still had hives, but the itching was under control. He never had any breathing issues or drop in blood pressure, etc.
I am still a little upset that they tried to rush me out of there with an ear infection and pink eye. Thank goodness I stood my ground and waited. I mean, they were very nice, but they didn't see the "clinical signs" of a reaction, so in their minds, it wasn't happening...but mom's know their kids and I knew something wasn't right.
Anyway - we now had a peanut allergic child and all the stress and worry that goes along with it. I am a researcher and as soon as he was safe, I started my research. I was happy to see that there are universities doing research on treating kids and adults with food allergies. So, I began contacting the two closest ones to us to see what clinical trials they had openings in. If there was a chance to participate, I was going to take it. Johns Hopkins is only working with kids 12 and up. Duke University had an opening....we are in!!
We will start treatment in May. It will be a lot of stress and a lot of work on our part, but so worth it if we can desensitize him enough to make him safe and not constantly worried about a reaction. Wish us luck!
Our Torticollis Adventure....
When my son was around 2 months old, I noticed that he seemed to always tilt his head to the right. I tried repositioning him and making him look the other direction, etc., but nothing seemed to really stick with him and he always tilted. The tilting caused his head to start to flatten out in the back on the right side too.
So, at our next appointment, I spoke with the pediatrician and she said to keep repositioning and we would check again. That was when she first mentioned tort to me.
At his 4 month appointment, it was clear he had tort. So, we got an evaluation with our local early intervention program and they diagnosed him with torticollis and we started physical therapy with him. From the beginning, he had a full range of motion, but tilted. So, our exercises focused on getting his left ear toward his left shoulder. He was able to do it, although he fought it. He was able to be stretched easily in his sleep though.
At 7 months, we determined after a visit to the neurologist that his plagiocephaly (flat head) wasn't going to get better because of the tort, so we started cranial remolding therapy...aka a helmet! It really wasn't that bad and he adjusted quickly.
I decided in August at 8 months, to call a pediatric ophthalmologist to get his eyes checked. I had read more about ocular torticollis and though it was worth getting him checked out. The appointment was made for October. We continued to do PT and the helmet and then met with the ophthalmologist in October.
Suddenly, the rug was pulled out when it was determined that yes, he probably did have ocular torticollis. Which means he has a form of strabismus (lazy eye) called 4th Cranial Nerve Palsy. The only fix....surgery. Ugh.
He was scheduled for surgery in January 2011 at 13 months, but he was too sick with cold/cough to do it, so we rescheduled for April 2011. He will be 16 months. The prognosis is good though and we are hoping to just have to have one surgery and call it a day!
Some clues that tort is ocular and not muscular -
So, at our next appointment, I spoke with the pediatrician and she said to keep repositioning and we would check again. That was when she first mentioned tort to me.
At his 4 month appointment, it was clear he had tort. So, we got an evaluation with our local early intervention program and they diagnosed him with torticollis and we started physical therapy with him. From the beginning, he had a full range of motion, but tilted. So, our exercises focused on getting his left ear toward his left shoulder. He was able to do it, although he fought it. He was able to be stretched easily in his sleep though.
At 7 months, we determined after a visit to the neurologist that his plagiocephaly (flat head) wasn't going to get better because of the tort, so we started cranial remolding therapy...aka a helmet! It really wasn't that bad and he adjusted quickly.
I decided in August at 8 months, to call a pediatric ophthalmologist to get his eyes checked. I had read more about ocular torticollis and though it was worth getting him checked out. The appointment was made for October. We continued to do PT and the helmet and then met with the ophthalmologist in October.
Suddenly, the rug was pulled out when it was determined that yes, he probably did have ocular torticollis. Which means he has a form of strabismus (lazy eye) called 4th Cranial Nerve Palsy. The only fix....surgery. Ugh.
He was scheduled for surgery in January 2011 at 13 months, but he was too sick with cold/cough to do it, so we rescheduled for April 2011. He will be 16 months. The prognosis is good though and we are hoping to just have to have one surgery and call it a day!
Some clues that tort is ocular and not muscular -
- it appeared around the time when the eyes begin to work together 6-8 weeks
- full range of motion
- able to stretch fully without any tightness when asleep
- when one eye is patched, the head is midline (this should only be done at the direction of an ophthalmologist)
Our eczema adventure...
My son was born in December 2009. He had jaundice and his skin looked pretty rough from day one. I was told it was baby acne and it would clear up. He also had a severe case of cradle cap (or as I call it, cradle crap). It was rough. His face was rough and bumpy and it continued to spread until his chest, stomach, back and legs were bumpy, rough sandpaper. My poor little guy!
By the time he hit four months, it was itchy and causing him issues. So, our pediatrician sent us to an allergist to see if milk was causing the problem. No milk allergy, but he did skin test positive to peanut and soy. The allergist said it wouldn't hurt to put him on a probiotic along with the other things we were doing (moisturizing and hydro-cortisone). So, I started adding a probiotic to his formula. Within 2 weeks, it was a 95% improvement in his eczema and cradle cap. It was amazing and I almost cried the day someone was holding him and said something to me about how baby's have such soft, beautiful skin...no one had ever said that about him before!
I continued him on the probiotics for the rest of the time he was on formula and it seemed to really help his eczema and the itching. He still had flare ups on occasion, but the eczema on his face and scalp has never returned.
At 15 months now, I am considering putting him back on the probiotics for several reasons, the main one is to help try to kick the eczema completely, but the other is to just improve his health and immune system overall.
Anyone else have any luck with probiotics in treating eczema?
By the time he hit four months, it was itchy and causing him issues. So, our pediatrician sent us to an allergist to see if milk was causing the problem. No milk allergy, but he did skin test positive to peanut and soy. The allergist said it wouldn't hurt to put him on a probiotic along with the other things we were doing (moisturizing and hydro-cortisone). So, I started adding a probiotic to his formula. Within 2 weeks, it was a 95% improvement in his eczema and cradle cap. It was amazing and I almost cried the day someone was holding him and said something to me about how baby's have such soft, beautiful skin...no one had ever said that about him before!
I continued him on the probiotics for the rest of the time he was on formula and it seemed to really help his eczema and the itching. He still had flare ups on occasion, but the eczema on his face and scalp has never returned.
At 15 months now, I am considering putting him back on the probiotics for several reasons, the main one is to help try to kick the eczema completely, but the other is to just improve his health and immune system overall.
Anyone else have any luck with probiotics in treating eczema?
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