Posted By Posting
Jun 29, 2003
puckettthompson2@aol.com
Severe Eosinophilic Gastritis in 4 1/2 Year Old
My son was finally diagnosed with Severe Eosinophilic Gastris back in March of this year. He was born with Freeman-Sheldon Syndrome (he has extremely low muscle tone and severe neurological problems unrelated to the syndrome)and has had a long history of having acid reflux which has been very difficult to bring under control. He has been on just about every type of medication to control the reflux, which worked for periods of time and then his symptoms would get extremely bad. In the process of trying to help him feel better we played around with his diet and discovered he was extremely intolerant to dairy and soy products. We even consulted an allergist in June 2002, who performed skin tests to see if he was allergic to anything. All tests turned up normal. This winter beginning in December, he had three back to back episodes of viral gastroenteritis. These bouts lasted for several weeks at a time. After finally getting over the virus, he never seemed like he was as content he was before getting so ill. (Not that he was ever really content.) His GI doctor performed an endoscopy the middle of March and she diagnosed him with Severe Eosinophilic Gastritis in his stomach and small intestine and mild in his esophagus. He immediately went on steroids for two months and was completely healed. The results were amazing! Our little boy was so content and happy and finally making some developmental progress! The allergist was consulted again and this time he repeated the allergy tests using blood instead of the skin tests. These tests did not turn up any allergies this time either. After weaning him off of the steroids the first time, the acid reflux got worse again and he is now back on the steroids again. It is taking awhile to get him back to normal but we are seeing progress being made. For awhile it seemed like he was experiencing a reaction after eating meat and eggs. After taking him off of meat and eggs, he seemed to do much better. We were thinking he was sensitive to nitrites or preservatives, but now we are really questioning what else might be bothering him. I've been thinking about feeding him organic meat, however he hasn't been feeling good, so it really doesn't seem like a good idea to re-introduce meat at this time. We are feeding him a vegan diet and that has seeme to help, but honestly unless he takes his steroid, his symptoms get worse. I would be interested in hearing from anyone who has a child with eosinophilia and find out where to get more information or even if there is a support group for this condition. Is there a doctor that specializes in this field? There really doesn't seem to be a lot of good information out there. I am also curious if children outgrow this condition. His doctor said that he could outgrow it, but she has several children that they just cannot figure out a cause for this disease. Thank you!!! Renee, Omaha, NE Mother of Nicholas
Jun 29, 2003
Anonymous
Renee, I'm sorry to hear Nicholas has had such a hard time. There is a list at yahoogroups called eosinophgastro. The moms there have tons of experience & knowledge about eos. Apparently the doctor of choice for eos is a Dr. Phillip Putnam at Childrens Hospital in Cincinatti. I don't have any personal experience but do know of this group. Good luck!
Jun 29, 2003
Anonymous
Eosinophilia
Renee, I'm sorry to hear Nicholas has had to go through so much. I don't have any personal experience with eosinophilia but there is a group at YahooGroups called eosinophilgastro where the moms have tons of experience. There is also a doctor that I've heard mentioned many times among moms who have kids with eos. His name is Dr. Phillip Putnam at Cincinatti Childrens. He is apparently the person to see for eos treatment. I hope you are able to find some relief for Nicholas.
Jun 30, 2003
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Renee
Renee, I saw your post. I am sorry to say I don't much about EOS (only what I was hunting down when I was searching for answers for my son!) but Cincinnati Childrens is running research on EOS and people do travel from around the country to see Dr. Phil Putnam. He was a great help when I was seeking answers for my son. I don't have his email address in front of me, but if you go to Cincinnati Childrens website it is listed. There are a few groups out there on Yahoo for support. There is also APFED, a group such as PAGER for EOS and related disorders. I hope you get the answers you are looking for! Feel free to email me if you would like. GJWTemple@aol.com Carla Williams PAGER Volunteer
Jul 23, 2003
Anonymous
Eosinophilic Gastris
Renee, We just returned from follow up visit at Mayo Clinic in Rochester, MN to have my sons reflux reevaluated. While there they believed that he had EE after doing a nasal endoscopy and saw esophagitis and the beginning of nodules on his vocal cords. We had an endoscopy and found everything to be normal, the end result, he has reflux which is not being controlled with medication. We are changing his meds again and hope to see improvement in his symptoms. The doctors at Mayo seemed to be quite experienced with EE and after our experiences with them, I would recommend them. Also, please see included site of EE support group. Good luck to you, Nancy http://groups.yahoo.com/group/eosinophilgastro/
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