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.

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

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!

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".

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!

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!

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!

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 -
  • 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?