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eosinophilic

shan789
  • By shan789
  • Posted May 24, 2009 at 2:39 pm · 25 replies
  • Shared with the public
0 Recommendations

Jake is currently being treated for this and I want to find out as much as possible about this disease. He is taking pulimcort slurry. 1 vial of pulimcort mixed with 5 packets of splenda.

Explore topics in this journal entry and replies:

Asthma Failure to thrive Acid reflux Allergies Eczema Gastroparesis Digestive health Constipation Lactose intolerance Pain Mastocytosis Diarrhea Nausea and vomiting

25 replies

HelenB8

Hi

Where does he have the eosinophilic problem? If he has an eosinophilic gut problem I may be able to give you info. Ben has eosinophilic gastroenteritis.

There are several organisations that can give you information if he has some form of EGID.

Helen

SwattyL

Does Jake have an eosinophilic gastrointestinal disorder (EGID) such as eosinophilic esophagitis or gastritis? If so, the American Partnership for Eosinophilic Diseases (APFED.org) has a lot of information on their website.

My daughter Kelly, has eosinophilic esophagitis and gastritis. She was diagnosed several years ago by specialists at the Jaffee Food Allergy Institute (at Mt. Sinai Med Center in NYC) There are also several major pediatricx medical centers that specialize in diagnosing and treating these disorders (such as Cinncinati Children's, or Children's Hospital of Philidelphia) and these centers have a great deal of information on their sites as well. Hope this information helps.
Lesley

shan789

His GI is treating him for it, because she feels he has it. She's treating him for 3 weeks and then if treatment doesn't work she will rescope him. His last scope showed eos levels of 10 in his stomach and small intestines. She didn't feel it was EGID due to low levels. She just said it was sever gastritis. But still a year later he is still sick. He has been having bouts of vomiting for 4 yrs. now. So after talking with his surgeon and myself she feels it is EGID. One of the main factors of this treatment is finally realizing tha before all of his scopes he hadn't eaten for weeks to a month before them. So she thinks that is the reason for the low numbers.
I have got to say he has only been on the pulimcort slurry for 4 days and this morning he woke and said he didn't need his zofran and he actually ate breakfast, he hasn't done that for a year now.

Novagrad

Shannon:

I have eosinophilic enteritis and I've had intravenous steroids to help calm the symptoms. Has Jake been tested for food allergies? There seems to be a probable connection between food allergies and eosinophilic disease. I found out that I was allergic to corn products (which is in everything).

Mimi

shan789

Jake had allergy testing in March. We found out he was allergic to peanuts, treenuts, sesame seeds, sunflower seeds, and oranges, ontop of his dairy allergy. We have been avoiding them. This was another factor in the diagnoses of the EGID.

HelenB8

Hi

They ususally reckon on 20 or more eosinophils for diagnosis BUT it can vary so much that they need several biopsies in all sites as it can be very patchy.

As mentioned in the post above there is the American partnership for Eosinophilic disorder (apfed.org). We have a UK based group Families Affected by Eosinophilic Disorder (fabed.co.uk), there is a specialist unit in cinncinati for EGID and Boston's childrens hospital advise our drs at great ormond street.

The parent-2-parent.com website have forums on EGID, allergies, feeding tubes, feeding problems etc. They are very good. The link to allergies is very poorly understood but is definately there. Ben currently only eats cornflakes and is peg fed neocate formula.

If I can give you any other info do let me know.

Helen

shan789

Thanks so much I have been on apfed site. I got a lot of info there before he was treated. He had almost all the syptoms. There are a couple of other groups I have found that have been helpful to. It's just been a long 5 yrs. with Jake, hopefully this is the right dx. The GI feels it'is and that there would have been higher if he would have been eating, but a month before the last biopsy he had only been eating toast and some soup. He was only averaging 200 calories a day. He came home after 6 days in the hospital with a NG tube. It was only there for 3 months.

Shannon, Jake 13 yrs., Hirschsprungs, colostomy 2 days, pullthrough 11 months, chronic constipation, cecostomy 12 yrs., asthma, food allergies, EGID?, Troy 17 yrs.

ktmorong12

I have got to say he has only been on the pulimcort slurry for 4 days and this morning he woke and said he didn't need his zofran and he actually ate breakfast, he hasn't done that for a year now.

^^^
that is amazing. I am so happy to hear he actually got to eat breakfast without using zofran.

rzrbckgrl

Hi I was just searching for symptoms of my daughter and I found a blog about eosinophilic. I don't know her direct address but you can search 'syndromic diarrhea abigail' and it will be about half way down the page- Abigail's story(not the THV story--that's about my daughter. My daughters name was also Abigail. Anyway- I hope you find it.

-Sara

tami6655

In March of 2008 I became suddenly ill with an intestinal bacteria called Clostridium Difficile. Since then I've lost muscle tone, had severe pain in my RUQ and had nausea and vomiting that was getting worse and worse.
I went to three doctors before finally my husband and I decided to go to Cleveland Clinic. The GI doctor there found eosinophils in my small and large bowel along with lactose intolerance and a small bowel infection. (I had already been dx'd with severe gastroparesis.)
My GI doctor sent me to a rheumatologist and an allergist as she said eosinophils can be caused by an allergy, an auto-immune disease or they could be there as a result of the terrible infection I had.
My family doctor said that in his practice the only contact he had had with patients with eosinophils was when the person had severe allergies of some kind. The allergist said that was what he associated with eosinophils.
However, I tested negative for both the allergies and the auto-immune disease and the GI doctor said that left the C. diff and that I would have to just hope that eventually it would go away. She suggested I go to a pain management class. That didn't resolve the vomiting or nausea which I was having more and more problems with.
I ended up going on a strict specific carbohydrate style diet recommended by a GI doctor named Steven Brasco. I also supplement with recommendations by a Dr. Cowan on the Weston Price Foundation website.
Along with that, my doctor (family dr.) put me on pancreatic enzymes and a gut relaxer. (This was because I also had pancreatitis when I was in the hospital with the C. diff.)
Within a few days my pain was so much better and although I'm on a very limited diet (chicken vegetable soup called Brasco Broth, organic steamed veggies, yogurt and homemade sourdough bread) anything is better than the life I had.
I don't know if you're interested but the book I read was called "Restoring Your Digestive Health" by Jordan Rubin and Dr. Steven Brasco. It might be confusing to add one more thing to the "is this the answer" list but I'm glad someone suggested it to me.

Tami

shan789

I'm really starting beleive it is the EGID. Jake woke up again today with no nausea. The pulimcort slurry is working for him so for now I will keep him on this treatment.

tami6655

If it's working--stick with it! I hope you find the solution as it is far more hard on us emotionally when it involves our children.
Our son is a chronic asthmatic and I know how frightening it is to have a child struggling physically.

Tami

HelenB8

Really pleased it seems to be working for Jake.

shan789

Thank you so much. Jake has been a hard one to deal with. Not only the EGID diagnoses, but he also has Hirschsprungs DIsease. He was dxiagnosed with that at 2 days old, where over 1/2 of his large intestines were removed, and he laso suffers from asthma.

If you want you can read Jake's story at
www.caringbridge.org/visit/hdandjake

shan789

Thank you so much. Jake has been a hard one to deal with. Not only the EGID diagnoses, but he also has Hirschsprungs DIsease. He was dxiagnosed with that at 2 days old, where over 1/2 of his large intestines were removed, and he laso suffers from asthma.

If you want you can read Jake's story at
www.caringbridge.org/visit/hdandjake

Novagrad

There is definitely a connection between EGID and asthma and eczema. I have all three and often times when someone has EGID, you will find that they also have asthma and other allergies.

I'm so glad the current treatment is working for Jake! Let's keep our fingers crossed!

Mimi

shan789

It has been a week since he has started the pulimcort slurry and he is doing so much better. He has not taken any nausea meds, and he is eating so much more.

HelenB8

That is excellent news! What a relief. So pleased things are improving for you.

Helen

Buterbaugh

Hi both my children have Eosinophilic esophagitis. This is a very frustrating disorder. Both my children also have severe acid reflux. My kids both take 2 vials of gastrocom 3x's a day. This really helps. Also there is also flovent you can swallow. This is a trial therapy that most dr. are using depending on age and severity. My son does not like to eat he drinks a suppliment called eo28 splash. However, the biggest thing you have to deal with is allergies. This is what trigger this disorder. It is through trying different food and seeing what happens. Blood test for allergies help but there is great posssibilities that allergies can come up neg. with this disorder and you actually have the allergy. This disorder is related to another disorder (I can't think of the disorder) but it masks all allergies. So it is a game you have to play. there is a big seminar in Cincinatti OH this month I believe. Check out Apfed.org and it will have tons of info.

shan789

Thanks for the info. There is no way I would be able to attend a seminar that far away, we live in CA. I'm working summer school and next Saturday Jake leaves for 6 days in Colorado for camp ( Rally 4 Youth), it's a camp for kids with bladder and bowel dysfunctions.

We have seen an allergist, he had skin testing done. It showed a lot of enviormental allergies along with peanuts, treenuts, sesame seeds, sunflower seeds, orange, and he has always been allergic to dairy. He has been avoiding all of these and taking the pulmicort slurry. I have seen a big improvment. He hasn't had to take any of his zofran, and he's been eating more.

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