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chezzie8
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Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.
39 Replies
Started this discussion. Last reply by chezzie8 Oct 9, 2009.
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chezzie8 replied to Julie Ryan's discussion 'Anybody dealing with a child with silent reflux/eczema/dairy and egg allergy'
You might want to read this thread, http://www.littlerefluxers.co.uk/forum/topics/eosinophilia-gastro-intestinal
Lots of this kids with eosinophilia have have nasty eczema, allergies including, dairy, wheat, egg and soy, including both of mine.…
chezzie8 replied to Laurie's discussion 'DMSA Renal scan?????'
HI ya,
Yes my daughter had one of those as she has always had a lot of UTI's and had a suspected dilated renal pelvis when born. I can't quite remember her agewhen she had the DMSA scan , about 10 months I think. She was so good, they…
chezzie8 replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Bless, yes Dr Shah is lovely, he has always been great, to think we have been seeing him just coming up to 3 years already!
Emre is 13 months and Ellie is 3 and a half. Ellie responded really well when we put her on the diet, and nalcrom at 1 year…
Lucy Page replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hi Cheryl - how old are Emre and Ellie. The thought of this going on for years is too depressing (so I try not to think about it) I just looked on that website it looks good nice and clear I sent it to some friends and family to help them understand…
chezzie8 replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hi Julie and Lucy,
Welcome to our happy little 'DR Shah' group Lucy. Sorry to hear you are going through all this too, these poor babies, makes you wonder where this has all come from really, why these kids are getting all this…
chezzie8 replied to kelly's discussion 'Abbie has had fundopication'
Ahh poor little thing, fingers crossed for a speedy recovery,
Cheryl xx
Lucy Page replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
she has just finished steroids - no difference - have e mailed Rosan and Dr S to say so. has been put back on just Neocate - no difference eiether so am starting her back on food today - just the simple stuff and she is very clear she wants it now!…
Julie Kerr replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hi Lucy
I agree it is a comfort in a stange kinda way - we should maybe start a support group in the UK and reach out to many others. Or there may be one already that I havent yet found. I think there are a few in the US.
What has Flo been…
Julie Kerr replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hi Cheryl
Thanks for the message. I hope they will grow out of it all! I just feel like the more I read about it all the worse it seems. Is it true that it gets worse from 1yr old? I guess its different for you as Amelia has EE which I think is…
Lucy Page replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hello Cheryl and Julie
I have been reading yours and Ginny's posts with interest - what you have all gone through and continue to go through is exactly the same as my daughter Florence - now 5 months. We see Dr Shah and Rosan (both fab).…
chezzie8 replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Got back from GOS today. Ellie was fab on the fasting, didn't complain at all, and went down at 1.30. Went to sleep no problems with the gas either. Dr Shah came to see me after and said she has enlarged lymph nodes in her large bowel, and Lots…
chezzie8 replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
I know they do use an inhaler for the EE, it has a steroid in it and that helps just the eosophagus, its the same as asthmatics use, might be worth mentioning to Dr Shah if you think her feeding does not get better?
I don't blame you for…
Julie Kerr replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Sorry still typing from last message. I emailed Rosan Meyer asking if she thinks we should do elemental diet with Amelia of just Neocate. I had a think and although she may have had Neocate only for a few weeks it was around the same time as we…
Julie Kerr replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
Hi Cheryl
Thanks for the reply.
Dr Shah didnt reccomend anything for the EE well maybe the steriods which we have decided to give a go after all. She has been on them for 5 days and we have seen her refluc get much worse and eating is a nightmare.…
chezzie8 replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
HI Julie,
I'm glad you have a diagnosis, poor little thing suffering from EE and EC. The drug he recommended is the same type that my son is on, and I promise it will help his EC, I am not too sure about the EC though, did he not recommend…
Julie Kerr replied to chezzie8's discussion 'Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.'
here is the current situ with Amelia
Symptoms List – Sept 2009 (11 months old)
High pitched screaming, crying, fussing and irritability– sometimes inconsolable and only helped by constant distraction. Contented periods are not very…
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