2 weeks on OIT

On Friday (January 22nd) we had our first up dose in the office.  We went from 5mg to 10mg peanut protein on liquid solution D.  We have to get up early and drive to Omaha to get to the appointment by 8 so he doesn't miss that much school but it was worth it.  No issues at the up dose and has been fine this week.  On Saturday night he said he had a little stomachache but it only lasted about fifteen minutes and he was fine again. Probably not even related.  We did our first on the run dose by keeping the syringe cold and bringing a snack so he could dose while we were at his brothers basketball game.  I still have quite a bit of anxiety about dosing but he is doing great.  I am not even sure he worries about it.  Which actually makes me happy.  I don't want him to be anxious. Here's to hoping the rest of the week goes well and we will sail into up dose number two on Friday!

up dose one is down the hatch!

First Day of OIT

So we decided to embark on the OIT (oral immunotherapy) journey for Carter's peanut allergy.  Basically this is a way to desensitize his body slowly to peanuts by giving him small amounts twice a day, 9-15 hours apart.  Every week he will go in on Friday for an up dose until he gets to 12 peanuts. We have to observe him for any reactions and keep him calm for 30 minutes before the doses and 2 hours after each dose. (He can't get his heart rate or body temperature elevated because this has been know to cause the body to go into anaphylaxsis.)  We will be doing this weekly for about 6 months. Today he was in the office all day getting small amounts of peanut protein every 15 minutes and then observed for any reactions.  He did great all day and was able to take all the doses without any reactions.  He went home on 5mg of peanut protein twice a day which is 1 /50th of a peanut. A peanut is 250mg.  We decided on this when we did a special peanut test that looks at certain peanut proteins. It is called the peanut component test.  Here are his results

If a kid has only high numbers to Ara h 8 or 9 it is possible that they will only have oral issues when eating peanuts like itchy mouth or throat.  The most important number to look at is Ara H 2.  It has been found to be the most indicative of having an anaphylactic reaction. We have been so lucky to not have his allergy limit too much of our lives but after getting this number back we really felt like we should take control and make this allergy less of a fear for everyone.  As he gets older and more independent a lot more of the control will be in his hands and I fear for him making poor choices when with friends and not wanting to carry his epi-pen.  So hopefully this will help make those situations less fear inducing.  This means he will take peanuts like medicine every day for the rest of his life (or until they find a cure)  There is also a chance that by desensitizing his body he may "grow out" of the allergy but there isn't enough data to support this but some kids were able to not eat peanuts for a few weeks and still be ok if they ate them again.  The good news is that while in maintenance it can be less stressful and exact and you might be able to miss a few doses without any bad things happening.  He will still be considered allergic, but when there is a chance for him to anaphylactic, it will most likely be in controlled situations. ie dosing, or purposefully eating peanuts outside of a dose. He still has a chance of having reactions during and after this treatment, but it is lowered and something we are willing to try.   A new peanut patch is right around the corner but the yearly cost of that is so high, and doesn't give you full coverage like OIT does.  We are just so happy that there is something we can do.  I am going to try and keep track of our journey on this blog.

First day!

right after his first dose

we played cards to pass time during the long day in the office

and I made him do homework!