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Wednesday, June 20, 2012

4th Clinic Visit--June 20, 2012

Today was a good day. I always get nervous the morning of clinic days. The uncertainty of it all. I guess if the little guy wouldn't have had the bad reactions at first, I wouldn't get uneasy in MY tummy. The little guy, on the other hand, spent the morning busy building Legos and horse playing with his sister. Today was a confidence builder though. Today we had to break our safe routine of eating lunch and then eating peanut. Since school is out for summer, this was our first morning clinic visit. I packed a heavy snack for the little guy and hoped that would be enough on his stomach to keep it settled. There is only so much food you can get the little guy to eat at 10:30 in the morning! He marched on in and went through our routine of vital signs and listening to his chest with the allergist. I mixed up his new dose in the cinnamon applesauce he has become quite fond of, and the 2 hour waiting game was on. Today, he is now up to eating 25mg of peanut protien, the equivelant of 1/12th of a peanut! (or in his terms he is eating Virginia, North Carolina, Texas, and California!) Pretty amazing! He did really well today, with no complaints at all. What a blessing. The allergist is pleased with how he is doing but is unsure himself if the positive change has been from the 2 medications or if it is his immune system showing a positive change. After the next 2 weeks he wants me to start slowly peeling off the proton pump inhibitor and see how he does. Until then, we will try to enjoy some family time having the little guy's Daddy off from work for a week. I know the little guy will have a great time with him and I will do my best to give my worry brain a little vacation too. To be continued....

Monday, June 18, 2012

A Smooth Road--June 18, 2012

So far so good. It has, thankfully, been an uneventful 2 weeks for the little guy. He was certainly due! He has not had any issues getting sick with his dose and really acts more himself the whole time after taking his dose. I can tell his allergies in general bother him a bit more the first week or so after changing doses. Guess the peanut gets his whole immune system geared up to everything a bit more. I hope that the reason these 2 weeks have been better is that his immune system is finally accepting the peanut as a "friend". He is still taking 2 different stomach medicines, and will continue to do so until at least after the next dose. I think he actually enjoys eating it each day. He gives me instructions to get it ready for him while he is eating his lunch! It has been nice to have things a little more normal around the house after our first month. Let's pray this Wednesday will bring the same good fortune as he heads back to clinic for another dose doubling!

Wednesday, June 6, 2012

3rd clinic visit--June 6, 2012

Today was a big jump for the little guy! He has been eating 1/50th of a peanut and now he will go to 1/25th! He is very into learning about the United States right now, so I told him it was like going from eating 1 state a day, to eating 2 states a day. That got a really big grin out of him. He told me he wanted to eat Virginia and North Carolina.

Our pattern has been eating lunch each day immediately followed by eating his dose. To keep with that safe pattern, I packed a picnic lunch today so that we could eat at the clinic and try not to mess up our routine. He was very excited and chatty on the way so I hoped he wasn't worried. He has done well for the last 10 days, so hopefully any thoughts of bringing the peanut "back up" weren't in his mind. I brought our trusty little pink basin just in case. He went in and greeted the allergist, had his vital signs taken and took down 12 mg of peanut protein. I have found that if he stands up for a little while after eating his dose he seems to do better. Could just be coincidence but he is a good sport and plays along. He played his games on the ipad and was very chatty the whole time. He always seems to get a little itchy, rubbing is nose and such, but otherwise the dose went great today with no belly pain at all. Plus, we had a great ride home this week! Yay!

We did get to see another participant today doing his final food challenge and that was really encouraging. According to his mom, his peanut allergy numbers were "off the chart" when they started the study! He had to stay on the 0.1mg dose for three weeks he developed hives so badly. He started the study last June and today was able to eat the total of 14 peanuts! Wow! He ate 2, then 30 min later ate 4, then 8! And he did great with no side effects. His mom said they did have to deal with hives, belly pain, and diarrhea off and on through the study but seemed like his symptoms had no rhyme or reason. Kind of like how the little guy is experiencing them.

For now the allergist wants the little guy to stay on both stomach medicines and maybe try taking one away in early July if all is going well. Here's to better living through pharmacology! He did have the lab work back which checked for 5 different allergen components in a peanut. The little guy was positive for 2 of the 5--the rAra h 1 and rAra h 2. Basically that means that he does have a "true" peanut allergy. He was negative to the part that causes only oral itching and also negative to the part that cross reacts with other foods in the legume family such as peas and Lima beans. It is hard for me to describe these tests very well, so have attached a link that gives a description of the Ara h 2 test and it's importance in peanut allergy. But basically what this tells us is that the clinical trial probably won't go smoothly since he is truly highly allergic to peanut. The allergist said that if he was not allergic to these certain components he would more likely be able to breeze through the study with no problems. At least we know we are helping him tackle a serious, life threatening problem. Other good news is he tested for some seasonal allergies and he is allergic to oak, but does not appear to be allergic to any major grasses or weeds. Also no allergy to wheat or macadamia nuts! He should be able to eat a delicious chocolate covered macadamia nut candy my mother's cousin sends us from Hawaii one day!

I am very thankful he had such a good day. I pray the next 2 weeks will go just as well.

to be continued...

Monday, June 4, 2012

Countdown--June 4, 2012

One day left!  Only 1 day until we go back to clinic to increase the dose of peanut for another 2 weeks.  I have been afraid to post anything since he has been doing really well with the thought that I might jinx him.  Certainly don't need any of that!  He has been a lot more active after his last several doses and not being as quiet so I take that all as good signs.  It will be interesting to see when the dose gets doubled this week from 6mg (1/50th of a peanut) to 12mg (1/25th of a peanut) if some of the stomach symptoms come back or just how he will react.  He is still taking 2 different stomach medicines each day, so I will discuss the plan for those with the allergist Wednesday as well. 

It seems like a lot of work for something that will not "cure" him.  In no way will he be able to eat a peanut butter and jelly sandwich or peanut butter pie when this is done.  But the goal in doing all this is to keep him safe from accidental exposure.  He will still have to eat small amounts of peanut items on a regular basis to keep his immune system from rejecting peanut again.  Completing this would mean he could eat at any restaurant he wanted, go get ice cream treats anywhere he wanted, and most importantly (to him) not feel different from his friends by having to pack different snacks and worry about food at birthday/school parties.  Most importantly to me, as Mama, I would feel safe with him leaving me to go to school or out with friends.  If this works, it will be a huge step for our whole family. 

I appreciate all the thoughts and prayers everyone has expressed for us.  I know we will have our ups and downs, but it means a lot to know we have a cheering section!

to be continued....