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Miriam’s Story

MIRIAM’S STORY

Miriam was born on December 18, 1995 in Jerusalem Israel. She never was a happy baby, she cried all the time the only time she would be quiet was when she was nursing. She would never sleep more than 2 hours at a time. We never realized anything was wrong with her at the time. At 9 months old we introduced food for the first time. She started with diarrhea but I didn’t realize there was a problem. Then one day we had given her an egg for dinner and her face swelled up and then the diarrhea got much much worse. She was having up to 40 diapers a day. We were finally referred to a GI doctor who did many stool tests and they all came back normal so no one could figure out what was going on. During this period she was having weekly fevers going as high as 105, no one could explain what was going on with her. WE went through a few doctors by this time. She had gotten to the point she went from the 95% to the 5th%. She also during this time her left side of her body was drooping and she would drag her arm and leg. Finally we were with a new doctor who thought that maybe food was the problem and took her off food and put an NG tube in and gave her Vivanex at 13 months old.

After a while of being on the formula the diarrhea came under control even though the diarrhea didn’t go all the way and her left side of her body went back to normal. During this time her IGA was low. After 6 months they scoped her and only found chronic inflammation. Then we started to re introduce food back and she reacted to everything we gave her. The doctors till now just kept saying she has MFA and I had a feeling it was more than that why would she react to everything she puts in her mouth. They decided to re-scope her with doing a wheat trial the day before and that scope came back with an elevation in eosinophils in her duodenum and colon but not enough to be Eosinophilic disorders. We then sent her records to John Hopkins to Dr. Wood who looked it all over with the slides and he said it looks like she has EGE, and if she was on food for more than one day before the scope we would have gotten a definite answer.

Meanwhile we went to Dr. Sampson in Mt. Sinai when Miriam was 3 years old, and he did blinded food trials and on day 3 scoped her and same thing happened and he said she has EGE. Meanwhile we went back to Israel. At age 4 she got a G tube once we saw she wasn’t out growing this so soon. She stopped breathing during the operation. It was very scary. Meanwhile she was having a lot of stomach pain that wasn’t getting better and most of the doctors were saying it was in her head and we finally got tired of it and had heard about Dr. Putnam in Cincinnati and was in contact with him and we came in March of 2001 and with in a week he confirmed that she had EGE the allergic form since she clears on formula only. He also found a bad ulcer in her stomach which was causing a lot of her pain and he also found she had reflux which they denied in Israel and also she had hypoglycemia. We were so impressed with Dr. Putnam and the hospital we decided to give it more time before we went back and in the end we stayed here since Miriam had a baby sister that was born with EGE as well.

Since then Miriam has made great progress. Dr. Putnam put her on different meds and she started to feel better. When she was 8 she was in the hospital for 5 weeks and she was transferred from continuous feeds to bolus feeds and they did a food trial of soy and she passed her first food trial. So now she has been doing really well over all and she has passed 2 foods beef and soy. We are continually doing food trials and one day we hope she will get onto enough foods that she won’t need a tube.

Now Dr. Putnam is re categorizing theses kids and the ones that are food related only meaning clears on formula he is calling Multiple food allergy but most other doctors still call it EGE. Miriam still struggles with her daily needs of being tube fed and being in a world of food but she goes to school and has friends and one would look at her and never know she has any medical issues at all.