As most of you know, at 6 months, Charlie was diagnosed with egg and nut allergies. Since that time it has been a journey. In the past 10 months, Charlie has experienced quite a bit. He has had several allergic reactions ending in urgent care visits, emergency room visits, changes in medicines, sleepless nights, appointments with specialists, blood draws, allergy skin testing, an endoscopy and a trip to CHOP. Finally, we feel as though we have a solid plan and a beautiful village of doctors, nurses and dietitians to support Charlie (and us!).
The short version of a 4 hour visit...
Charlie has 3 different allergic conditions which make him a wee bit complicated.
IgE mediated allergies - these are the "normal" allergies; hives, coughin, itchy, watery eyes, anaphylaxis (actually, the "easy" ones in some ways or better yet, the most straight forward). You can test for them and you can avoid the allergens. At this point Charlie is allergic to egg and quinoa. He passed his peanut trial at the age of 13 months! That was huge. He carries his epipen everywhere and William can teach a stellar I service on when and how to administer epinephrine.
FPIES- food protein induced intercolitis syndrome
This is a fancy name for an allergy that doesn't show up until the child has repeated exposure to an allergen and then has severe and continuous vomiting as a reaction. Charlie is FPIES to rice; and thus must avoid all grains, legumes and poultry. Who knew rice eliminated so much? Sigh.
EoE- eosenophilic esophogitis
The hardest to say and the most complicated. This is diagnosed only by biopsies taken during an endoscopy. A personal without EE has zero eosinophils. A person wth EE has greater than 15 in any given section. Charlie's numbers were higher than 15 in two portions thus diagnosing EE. It has been compared to asthma of the esophagus by which the white blood cells rush to the area when a trigger is present causing inflammation and pain. Typically it can be managed with some medication and mostly diet. The top triggers are wheat, nuts, egg, soy, shellfish, fish and dairy. So, that limits diet yet again (hence the reason why we have been a bit perplexed about moving forward with diet etc)
We have an incredible team here in Charlotte; however, our allergist and pediatrician recommend a true center that cares for children with EoE to care for a little one as complicated as Charlie. So, when we learned that CHOP is one of the top programs in the world and you have a village there, you go!
We met with the team for about 4 hours to review every single
Detail about Charlie. If anyone reading this were to say, what is your one piece of advice? I would say, if you know deep in your heart something is not quite right with your child, write everything down. I have kept a detailed food journal and behaviors / sleep for Charlie for over 6
Months and boy was I glad! They asked us dates, timing, food introductions, reactions... And we KNEW IT ALL. (Proud
Moment for Derek and I!)
And now... The plan moving forward ...
- change some medicines (increase one, take one away)
- start a new multivitamin
- complete dietary analysis of Charlie for 4 days to review
All Vitamins and minerals he gets from his foods
- see a new GI doctor in Greenville SC
In January (visit and endoscopy) *this doc was a resident and fellow at chop and follows all of the same protocols
- continue with our team here who will follow the plan from CHOP
- don't change any foods at this point and HOPE for lower eosenophil counts during his next endoscopy to introduce new foods once he is baseline
The team is supportive, so so smart and dedicated to sweet Charlie. He charmed them all with those sweet sparkly eyes, chunky cheeks and love for life! We asked Charlie to thank them all many times as they came in and out of the room and he would raise his arm high and mumble "your welcome" to them! Of course, they thought he was pretty great (oh, and they love his weight as well!!!!)
So all in all, our sweet Charlie is in great hands and we are thankful and peace filled knowing we have a PLAN!!!!
No comments:
Post a Comment