Friday, July 31, 2015

Told You So!

I hate to say I told you so but, I told you so! All throughout the year we have suspected our 14yo son Matthew was on the placebo peanut allergy patch, rather than the low dose (100mcg) or high dose (250mcg) patch. We found out this week that he has indeed been on the placebo. I would have loved to have been proven wrong because then maybe he wouldn't be allergic to peanuts anymore! The good news is that this is a three year clinical trial with a placebo crossover, meaning that now he will get the high dose patch for the rest of the year (There is no placebo group for the rest of this trial).

This week marked the one year point of Matthew's clinical trial and the week the study would be "unblinded". He also needed his annual oral food challenge. This food challenge is double blind placebo controlled which means that neither ourselves nor the nurse and doctor caring for Matthew knew which day he was given actual peanuts and which day was an oat placebo. It became pretty obvious on the second day that he was eating peanuts when he blew up like a puffer fish after taking several doses. I told him he looked like Will Smith in Hitch!

For the oral challenge, either peanut or oat powder (if placebo) were mixed into pudding . There are other foods to choose from, like meat sauce, to have as a base for the test. I think that sounds kind of weird but some kids choose that! Matthew is rethinking his choice of chocolate pudding because he hates the food challenges so much that he now loathes all pudding. 

He received increasing doses of peanut in 9 doses each 15 minutes apart. Day one, Matthew was able to take all the doses. He felt a little itchy all over that day which the doctor says is not unusual. People can have placebo effects of itching and even hives just from the thought of eating their allergen.

Day two, Matthew's throat and mouth were itchy and burning from dose one. It became increasingly worse over the next few doses and he was drinking a ton of water. Dose four he got chills and dose five he got a stomach ache. He said, as he's said other times he's eaten peanuts accidentally, "I can't tell if it hurts because I'm hungry or something else" so they gave him some pretzels to eat. I really want parents to take note of this part, because if you think your child may have eaten their allergen and then they say their stomach hurts and thinks it's hunger pain this might be a red flag. Each child's reactions are different but this is something Matthew has consistently said to me early in a reaction and something I've read that other kids have experienced as well.

Over the next fifteen minutes Matthew said his stomach pain was getting worse but he went ahead with dose six anyway. Shortly after dose six he was in enough pain that they stopped the test and gave him his epinephrine, oral steroids and Benadryl. He didn't have any swelling or hives at this point and I said "maybe he won't get them this time!" Unfortunately I was wrong. The itching, swelling and hives started shortly after the last dose. Poor guy was miserable! The nurse kept saying, "don't scratch, it makes it worse" but he couldn't help himself. 

Interestingly, the nurse told me she could tell what hives were scratch-induced because they have irregular borders and spontaneous hives are typically more round. At one point I just squeezed his head (head, hands and feet get the itchiest) and pressed on his back and he said that helped a bit.

About thirty minutes later he said he felt that his throat was swelling. The doctor looked in his throat and then ordered another dose of Epinephrine. He also got another dose of Benadryl for the itching. Finally after almost an hour he started to feel some relief. It was really hard to watch my child suffer like this, even just for an hour. I can't imagine having a toddler or preschooler in this same situation. At least with Matthew, he is old enough to understand that this is pain with a purpose.

On the ride home, Matthew was reading some of the Facebook comments from my posts. He noticed that people thank him for what he's doing and tell him he's brave. "You are brave", I said. Then I said "You know, I'm glad that other kids will benefit from this. But I'm doing this to save your life." "Yeah?" he says. "Well, for the record, I'm doing this for all the little kids in the world with food allergies".  He's such a sweetheart! I mean, he's certainly not perfect. In fact, at 14 years old, he can drive me crazy sometimes! But he is a good kid with a great heart.

On the way home he was feeling much better. After 75mg of Benadryl, I couldn't believe that he didn't sleep in the car! We stopped by the Annapolis Mall to get him the very expensive new sneakers that his Nana said she would pay for because of his pain and suffering. By the time he got his shoes he was 100% improved.

Matthew goes back tomorrow (a week from the initial test) to get his new patches. He has to be observed for three hours on this patch and then I will take him back the next day for another observed patch placement, then we will have weekly checkups for a few weeks.

We are very excited about the next year may bring. Thanks for all the support! If anyone has questions, send me a Facebook message. I'd love to hear from you.

1 comment:

  1. What a brave boy you have! And brave mom! Our family is so grateful for his participation in the study! How is it going lately? My 9 year old daughter is severely allergic to cashew, pistacio and peanuts. We have high hopes for the patch!