Just a quick update... in October my son had a scope, all because his blood eosinophils (which had been normal) slightly increased (to 14%). Though, we had reintroduced milk, corn, oranges, wheat and barley during the past year and he was having zero issues at all, there was a suspicion that wheat might be causing the blood eos to rise.
Also, my son has been doing NSRT treatments since the summer and has been doing fine with those. We just finished the basic groups a couple weeks ago.
So, in October he got scoped and guess what? Everything was 100% clear. His biopsies were clear. They also tested his blood that day, at my request, so we could coordinate all the results and get a clear picture. Well, his blood was also 100% within normal limits.
So, why did his blood eosinophils elevate slightly? Could have been something in the air for all we know. But it doesn't matter right now. He is 100% clear and he's feeling great and he's eating more foods and totally enjoying it. That's all that matters. We get to continue onward since he's doing great.
Next, down the road we'd like to get off the Flovent. He is growing perfectly fine so that's not the issue. (They say it can stunt growth.) But taking any medications that are not necessary is not cool with me. We had taken him off the cimetidine quite some time ago at my request, and he was fine. And just this month I took him off his year round Zyrtec (per his allergist) following the NSRT treatment for environmental allergies. Plus, it's December so I don't think he really needs it. His body needs a break. And he's doing just fine.
What we are doing to help with his health is a multi vitamin, digestive enzymes and probiotics. That's it. The kid rarely ever gets sick, and when he does, it's short lived.
We greatly appreciate the improvements in my son's life and feel blessed. And now, onward to an even better 2011!
Hi my name is Lorena. My daughter was diagnosed with EE in 2009. I wanted to know what is NSRT? my daughter comes back positive on every scope. Thanks for all the information you have blogged.
ReplyDeleteThank you for sharing your experiences. Because of you and other parents that have written about what they go through with kids with EE, I decided to also blog. If you would like to check mine out our make a link to mine, I can reciprocate...
ReplyDeletehttp://ahardjob.blogspot.com/
Kim
I'm curious as to how long the list really is for your son's allergies?
ReplyDeleteThe reason why I ask, is because the list you posted, would be a miracle compared to what I have to avoid. LOL I'm sure his food allergies and cooking for them was very challenging, especially at first. I kept having to relearn how to cook as I found a new thing I wasn't suppose to be eating. No one likes to be a short order cook, but I don't mind it. I can't have anyone eat like me because it wouldn't be healthy for them.
I don't have EE, I just react to lots of foods, including the entire Mustard and Cabbage Family, Meats, Poultry, Shellfish, Mallow family, Cinnamon, Gluten (Celiac, not allergy), Celery, Lily Family which include Onions (but can eat Asparagus), most of the Myrtle, Laurel and Parsley families; Cream of Tarter... and much more. I'm supposed to be DF, EF too. However, I eat anything that stays down as long as it doesn't cause too much damage only because my list of foods to avoid is too long and sometimes I have to eat out (my grandma is 93 and Old Country Buffet is the only place that works). LOL Thus, I'll on occasion eat dairy if it the right kind of cheese so I can have something on my salad. ROFL
As soon as I find a Vegan pro-biotic that is safe for me, I intend to take it. It might reverse some of my allergies. Yep, I carry an Epi-Pen too.
I'm finding Canola Oil is in everything. Fortunately, I can eat rice and soy. I practically live on them. I don't have the right symptoms for EE yet, and hope I never do. I found one person who was diagnosed with EE as an adult. O_o. By the way, I have yet to find a Vegan, Top 8 free, Canola Oil, Corn free cheese. Usually they contain Canola and they always contain Corn.
Thanks!
okay, I'll rattle off now
Hello, Iam so happy for your family...what a sweet relief it must be to know your son is happy and is eating more foods...Your doing a great job taking care of him and all his maintnence if he is doing so well:)its not easy having a child with EE
ReplyDeleteHello Tracy,
ReplyDeleteI was googling for remedies for my son's eosinophilic gastroenteritis, and came upon your website. I have really gone thru all your posts, but was really happy to find someone in the same boat. I am really glad that your son is doing great !!!!
I was wondering if you could help me with your vast repository of knowledge about EE. My son is currently on Singulair and I was thinking about adding Cromolyn. Can you give me some insight about these meds if you have had some experience with the same? My son has an extensive medical history - he was diagnosed with leukemia at 2 1/2 years of age and underwent cord blood tranplant, and has been suffering graft vs host disease (GVHD) since the last 4 years, until EG came into the picture, and made us think if all his symptoms (diarrhea, skin rashes) were due to EG and not GVHD.
Would really appreciate if you could connect with me via email.
Thanks a bunch for creating this website !!!!!
Sina
Hello! My name is Erin Gladden, and my son was diagnosed with EoE in September. We are at the beginning of this process but miserably frustrated. Against all my mommy instincts, we have a g-tube surgery scheduled on Feb. 14. I came across your blog and am so interested in your story. I come and go on EoE forums- I haven't wanted this to define us, but things have not been going our way with treatment. I would LOVE to chat with you about your experience. I am on facebook (Erin Locy Gladden), my email address is erinlocy@bellsouth.net, and my phone number is 770-253-6699. Sorry about this private info on a blog comment- I figured you wouldn't have to post this comment but could at least get my info to contact me. Thank you so much for your time.
ReplyDeleteErin
Congrats! That is exciting news!!
ReplyDeleteHey, my name is Scott and I'm now 20 years old and have had EE since I was about 10. I was reading your earlier posts, when I was a baby I would spit up across the room, also the doctors thought nothing of it (just I had a talent I guess?) but I can say I now wonder about putting that together with me if my signs actually were from earlier on. I hope your son continues to do well!
ReplyDeleteTracy,
ReplyDeleteI love that you are looking to the positive side!! I have EoE and also have done NSRT and EFT to clear reactions.
I have read a few of the posts. I especially agree with looking at the positive and I appreciate your decision t stop your blog, but I would ask that you turn that around and blog more about what you are doing to keep it positive. I have a blog where I am beginning to do that ;)After doing the same thing you did. Signing out of the horror stories, taking a positive turn and trying to keep going- we all need a circle to do that- If you are interested contact me ..
www.yvonnebergeron.wordpress.com
Namaste!!
Hi Tracy,
ReplyDeleteThis is a mom from India who has a 15 months old son detected with EOE, biopsies confirmed it.Because of less research and awareness about the disease I m struggling to help my child.He has continuous eczema, extreme GERD, low weight, and occasionally vomits and passes mucus in stools.
He is definitely allergic to milk and Soya and is on a diet free from these.
Would really appreciate if you could help with your research and knowledge so that I can help my child deal with the issue.
We want to start one step at a time.So first would be getting allergens out of his system.
1. We got allergy test done for our son which was ImmunoCAP testing.Nothing came out with that test except milk.Would you know which is the most suitable Food allergy test for EGIDs?
2. Is it possible for the child to not be allergic to some foods and then developing allergies to them later.because I have done enough hit and trial with him(even basic elimination diet) but have come to no conclusion.Inshort he seems allergic to everything.
Currently he eats limited food - Chicken, carrot, banana, apple, rice, squash, gourd , sometimes wheat and still struggles from all these allergic reactions.
Sending prayers and good wishes your way.
Looking forward to your reply.
Regards,
Ritakshi