in that order please...because sometimes in life the answers you get means there are more questions to ask. WE finally know brooklyn's diagnosis: Eosinopholic Gastroenteritis. Think it is hard to pronounce? so did we...
So WHAT IS IT???
It is an autoimmune disease. When she eats food- her body is reacting to it and causing damage to her esophagus and stomach, so the body sends and abnormal amount of eosinophils (white blood cells) to the area. When the area is infiltrated with eosinophils, the body is on constant alert, thinking that every thing she swallows is harmful. (To be clear- it is NOT caused by food allergies, although people often have both. However, food is the most common "trigger". It is her body saying "I am angry and upset with everything for no reason" with food allergies the body sees a specific protein and identifies it as a harmful substance and attacks it with IGE antibodies. It is her body saying "I don't like you because of something" So an allergy test will help identify what foods are causing an allergic reaction and is extremely helpful in keeping her safe from an anaphylactic reaction, but will not identify which foods her body just "doesn't like")
Having any eosinophils in your esophagus is abnormal. For people with acid reflux causing damage, they may have around 5-10. Above 20 is the cutoff for eosinophilic diseases. and depending on where they accumulate is where the disease is such as E. Esophogitis, E Gastroenteritis, or E Colitis. Brooklyn's esophagus had 39, her stomach had 34 and just around her duodenum she had 257.
To treat her right now we are starting with corticosteriods (budesonide). to help her body "calm down" and not "hate everything coming down the tube". WE might also so some more allergy testing to see if there is a reaction we don't know about that is aggrivating the EG. Beyond that - we will try to identify which foods are causing the most pain and eliminate those from her diet. Some kids go on an elemental formula diet (amino acids only) for a while so their body can heal and then try one food at a time- since that is very extreme we will try the corticosteroids and eliminating foods first and go from there.
How do I feel about this? Hmmmmmmm. Justified (I am not a crazy mom, nor is brooklyn just trying to get attention), Relieved - that we finally have some answers, Overwhelmed - it is a Lot to take in and change in our lives. so much to learn...again...I should be a doctor by now. Yesterday I was calm, this morning I cried, we will see what tomorrow brings.
On the good side: WE had a fantastic vacation that I will post about VERY soon!! Tyson is baing made a project manager at work. The school has been so wonderful with CRistin's allergies I haven't even stressed or worried about it. Oh- and our Security sytems are in check- as we found out last night when both of our cars got broken into (nothing got taken- the screaming alarm on the car and house scared them off pretty quick). Whoo Hoo! Check back soon to see all about our vacation!
here is a pre view:
Links to check out to read more : www.apfed.org http://emedicine.medscape.com/article/174100
or just google eosinophilic gastroenteritis
2 comments:
I'm sorry to hear such challenging news. You are right though, it must be a relief to know what is causing her pain. Hopefully, everything improves from this point on. You are AMAZING by the way!
You are EXACTLY the mom that can do it. Elaine Dalton, YW general president, used to have a sign on her desk that said, "I can do Hard Things." She said that if doing it over she would replace it with, "In the Strength of the Lord, I can do ALL Things." So, we know you can do it. We LOVE you.
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