Friday, September 12, 2014

Sneezy Max...

Max has had an itchy, runny nosey, sneezy kind of a week.  Thankfully, it wasn't the wicked virus making it's way around Colorado.  Instead, we had to stop his allergy medicine which made his allergies go crazy.

Look at that red nose, rash on his face, and droopy itchy eyes. 

We've known for a while that Max is allergic to beef and pork, but we also know that Max needs allergy medicine year round, and want to find out why. It took almost 6 months to get in with his doctor.  Max mostly sees the top doctors in their departments...this means it's sometimes difficult to get in with them since they're teaching, and in meetings, and at conferences it seems more than in clinic!

Dr. A. is the one who found Max was allergic to beef and pork, and said he couldn't have any more vaccines because the risk of death from the vaccines was greater than the risk of getting the flu.*  We haven't seen him in a few years, and were anxious to see if we could figure out what's been bothering Max so much.

Since we last saw Dr. A., Max has had two new diagnosis, Cobalamin X, and Eosinophilic Esophagitis (EoE).  The EoE is what brought us in to see allergy again.  EoE is basically an allergic reaction of the esophagus due to an allergen in either food or environmental allergies.  We have been wondering if some of the foods we feed Max in his blended diet were causing problems.

We had to take Max off of his allergy medicine for a week leading up to the testing.  They tested for a lot of the foods in his diet.  Again, we saw he's still quite allergic to beef and pork, but also has some markers for a few other foods.  I will wait to post what he's actually allergic to until we have all the results in.  We have to do this whole thing again in a couple of weeks with all the actual foods that go into his blend each day.

For the skin test, the nurse pricks Max's back with little plastic sticks that look like toothpicks, then touch with a drop of the allergens. Then we try to hold a very agitated and itchy Max safely on the table while we wait for the spots to react.

You've not seen quick action like nurse Kathy applying allergens in the scratch test!

It was quite a reaction with the beef and pork, and a few others causing enough of a reaction to do more testing.  

The two bright spots in the middle of his back are beef on top, and pork in the middle.  

The pork ended up being a bigger reaction than the "control" histamine scratch they applied on the far side. 

We were able to treat with Benadryl after the test was read, then had to go get more tests run with a lab draw.  Along with Max's standing Metabolic orders, they took 8 vials.  Needles to say, he was very tired the rest of the day yesterday.  Hopefully we'll get some better ideas of what he's allergic to, so we can avoid giving it in his blended food.  For now, we'll keep giving his medicine and he'll be back to his non-sneezy self soon!

*"risk of death from the vaccines was greater than the risk of getting the flu."  This is the case for Max.  We don't get in the middle of arguments on either side about the reasonings why people do, or don't vaccinate.  It is important to us to vaccinate ourselves,  because Max can not.  The only reason we don't vaccinate Max is because he is so allergic.  The vaccines Max received early in life did not cause any of his medical issues, that has all been due to the faulty HCFC1 gene.  


KD said...

Amazing Deana! I love your blogs:) poor Max! I hope he feels better soon!

Elizabeth said...

I'm interested to hear how Benedryl works for Max as my children have all three only had a paradoxical reaction to it, meaning they get very hyper and agitated. I know that it worsens Sophie's seizures, too. I'm sorry that Max had to go through what looked to be a very uncomfortable procedure for him (and you all, too!) and sure hope they figure out how to help him. He really is quite a trooper.

Deana said...


Benadryl is really a next to last resort for allergy meds for Max...last resort being his epi-pen.

I've known other people who have the hyper and agitated feel with Benadryl. With Max, it just stops the overreaction and makes him a bit sleepy.

We have a call in with neuro to see if we can just give him an increased dose of Zyrtec instead of the Benadryl, since it can lower the efficacy of his seizure medicine. Max's allergy dr told us they have started treated anaphylaxis with Zyrtec more and more in the ED, rather than Benadryl.