Eosinophilia Gastro intestinal Disorder, for Ginny, and anyone else interested.
HI Ginny,
Wow, you have your hands full too don't you. My daughter was a nightmare feeder and screamer too, I had to distract her too to get 3oz in her. Walking about with a bottle in her mouth in front of the tv. She suffered terrible choking spells high temperatures, and it was that reason that we were referred when she was a year old, she had been on Lansoprazole for a year at this point, max amount for reflux. We did see a private allergy specilist when she was 6 months old who put her on neocate saying she had EE.Dr Shah immediatly said she had EGID, as you know eosinophilic gastro intestinal disorder and put her old cetreizine, and nalcrom plus with a dairy, soy, wheat, egg oat and corn free diet, she was never scoped. This made a big difference, although I found her intolerant of artificial sweetners too. She has done great up to feb this year when her hair started to fall out and she started getting temps again and night sweats. She went back on nalcrom but that actually made her worse, both her and her brother are allergic to the gellatin capsule, so she is just on Ketotifen at the moment after having a burst of steroids twice two. But we saw Dr Shah two weeks ago and he did loads of bloods and booked her in for a scope, but he said she will need to go Mesalazine, anti inflammatory.
My son, is worse. When he was born we were told by Dr Shah to be prepared, and he started after two weeks. Reflux drugs made him MUCH worse, terrible diarrhea. I stopped BFing him, and he went on Neocate. After 3 months no imprvement, so we saw Dr Shah privately who put him on streroids for a week, nalcrom and ketotifen. He got a smidge better, but after a month I realised he was really windy after the nalcrom so we stopped that and he got a touch better again. Then much worse so he went for a scope at 5 months. He has inflammation throughout his large bowel with high levels of eosinphilis and clustering. he had a red bottom for months, everytime he poo'd it burnt all of the skin it came into contact with. Thats pretty much how they diagnose it. All this while just on Neocate, I knew solids would be hard. He put him on steroids for 15 days and again he got better, but continued to get diarrhea after eating anything but rice. So, he was put on Sulfasalazine which is the same as Mesalazine and after he has had the dose increased we are finally getting some solids in him. Not much, a bit of melon, banana, rice of all types, carrot chicken and a little pork. So progress, but slow, we have just had three awful nights, he still screams his head of for 2 bottles a night! at nearly a year old. He still sleeps so badly, throwing himself around getting tummy spasms.
No reason what causes this, apart from my husband has crohn's, although Dr Shah thinks he may have eosinophilia as well. Dr Shah said these kids react to evertyhing, mine are allergic to pollen, my son comes out in a rash when crawling on grass. He said that anything that goes on the skin filters into the blood, which then crosses over to the bowel, this causing the reaction. Sadly some of these kids have this, like your Stella and my son. They need to be on long term meds until thing calm down. Ketotifen is also suppose to be great, it also has a anti inflammatory effect on the bowel.
There is another drug they use, Azothiaprin which is an auto immune drug. You would need weekly bloods ont his though. My son needs 3 monthly bloods as well. These aren't drugs to be taken lightly, but serious colitis can be very dangerous too.
Can't you ask to be referred to Dr Shah on the NHS and let him take over?
I really like Dr Shah, the other week I was due to see him with both kids, and his secretary rang to say he had to go out and couldn't do the afternoon clinic, but asked specifically to see us and for us to come in early. Ahhhh... I thought that was very nice, on the NHS too., although guess we have paid to see him a few times but he said it was cause we are a complicated lot!
C x
Wow, you have your hands full too don't you. My daughter was a nightmare feeder and screamer too, I had to distract her too to get 3oz in her. Walking about with a bottle in her mouth in front of the tv. She suffered terrible choking spells high temperatures, and it was that reason that we were referred when she was a year old, she had been on Lansoprazole for a year at this point, max amount for reflux. We did see a private allergy specilist when she was 6 months old who put her on neocate saying she had EE.Dr Shah immediatly said she had EGID, as you know eosinophilic gastro intestinal disorder and put her old cetreizine, and nalcrom plus with a dairy, soy, wheat, egg oat and corn free diet, she was never scoped. This made a big difference, although I found her intolerant of artificial sweetners too. She has done great up to feb this year when her hair started to fall out and she started getting temps again and night sweats. She went back on nalcrom but that actually made her worse, both her and her brother are allergic to the gellatin capsule, so she is just on Ketotifen at the moment after having a burst of steroids twice two. But we saw Dr Shah two weeks ago and he did loads of bloods and booked her in for a scope, but he said she will need to go Mesalazine, anti inflammatory.
My son, is worse. When he was born we were told by Dr Shah to be prepared, and he started after two weeks. Reflux drugs made him MUCH worse, terrible diarrhea. I stopped BFing him, and he went on Neocate. After 3 months no imprvement, so we saw Dr Shah privately who put him on streroids for a week, nalcrom and ketotifen. He got a smidge better, but after a month I realised he was really windy after the nalcrom so we stopped that and he got a touch better again. Then much worse so he went for a scope at 5 months. He has inflammation throughout his large bowel with high levels of eosinphilis and clustering. he had a red bottom for months, everytime he poo'd it burnt all of the skin it came into contact with. Thats pretty much how they diagnose it. All this while just on Neocate, I knew solids would be hard. He put him on steroids for 15 days and again he got better, but continued to get diarrhea after eating anything but rice. So, he was put on Sulfasalazine which is the same as Mesalazine and after he has had the dose increased we are finally getting some solids in him. Not much, a bit of melon, banana, rice of all types, carrot chicken and a little pork. So progress, but slow, we have just had three awful nights, he still screams his head of for 2 bottles a night! at nearly a year old. He still sleeps so badly, throwing himself around getting tummy spasms.
No reason what causes this, apart from my husband has crohn's, although Dr Shah thinks he may have eosinophilia as well. Dr Shah said these kids react to evertyhing, mine are allergic to pollen, my son comes out in a rash when crawling on grass. He said that anything that goes on the skin filters into the blood, which then crosses over to the bowel, this causing the reaction. Sadly some of these kids have this, like your Stella and my son. They need to be on long term meds until thing calm down. Ketotifen is also suppose to be great, it also has a anti inflammatory effect on the bowel.
There is another drug they use, Azothiaprin which is an auto immune drug. You would need weekly bloods ont his though. My son needs 3 monthly bloods as well. These aren't drugs to be taken lightly, but serious colitis can be very dangerous too.
Can't you ask to be referred to Dr Shah on the NHS and let him take over?
I really like Dr Shah, the other week I was due to see him with both kids, and his secretary rang to say he had to go out and couldn't do the afternoon clinic, but asked specifically to see us and for us to come in early. Ahhhh... I thought that was very nice, on the NHS too., although guess we have paid to see him a few times but he said it was cause we are a complicated lot!
C x
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Replies to This Discussion
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Permalink Reply by chezzie8 on -
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 inflammation. It is very hard not to have your whole world encompassed by this when you kids are never quite 'right', My life is really completly governed by them, what has upset them now! what bugs or viral illnesses they have at this time, and medications coming out of my ears! I am a Practice Nurse, and I feel I never have a day off! I do more medicating here them at work. Emre is on azithromyacon too at the moment as even with the sulfasalazine he still gets very red bottoms. He still is never great though, when he hasn't got diarrhea he is constipated and that still burns his bum.
If you have to go down the scope route, wait until she is a little older, can eat solids so she can have jelly and ice lollies, as its much easier. With Emre he was 5 months and only on neocate, he was fasted for 26 hrs! with only juice, then water. It was awful, we went in the day before then, and I hated every second. Ellie was on day case, so we started the bowel prep at home, miuch easier with jelly all day and the next morning, before we left for the hospital. She never complained or asked for food. Much better alternative. I would love to say they grow out of this, but Ellie has got worse, so god knows, maybe it was cause I got too lax with her diet, who knows.
Julie, our kids are always ill, in the summer they both got swine flu, and then ongoing for about 8 weeks after, chest infections, throat infections, ear infection. I was in the surgery every week! I think the antibiotics do help, they certainly use to with Ellie, not too sure bout Emre, not much seems to help him I think sometimes. Steroids are awful for him, he is soooo irritable too, and Ellie is now coming down to 10mgs dose, and she has been ok not she is off the 20mgs. But her eyes are all dark, and she is pale, and just looks ill. These poor kids. I am waiting on DR SHah to ring with her results, I hope he does today, would love to know where we are going with her. She has an appointment in Nov with a Nethrologist too as she keeps getting bladder infections, and we think she may have this inflammation in her bladder too! Great.
I am in Sandhurst, just up from Camberley, so not sure where abouts in Surrey you are,, but might not be too far? maybe we could arrange a half way meet or something. There is a UK support group, http://www.fabed.co.uk/ this is there message boards http://health.groups.yahoo.com/group/fabed/ which you have to apply too. Very helpful though, lots of Dr Shahs patient on there, lots of older kids though which I find quite depressing.
Hugs to you both, hope your having a good, day,
Cheryl xx
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Permalink Reply by Lucy Page on -
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 better.
When yous ay you got Lax on her diet what do you mean? We have just started on weaning again - she is having quinoa instead of rice then all the usual early foods. He has also said to give her pro biotics - any experience of this? Her sleeping is so erratic and there seem to be so many variables it is hard to know what to do for the best for them. Poor little things hopefully one day things will get better for us all. THank you for the extra info. I heart Dr Shah. xxx He calls my daughter gorgeous as in a the noun! He probably does to all the girls but it really cheers me up!
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Permalink Reply by chezzie8 on
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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 old, she was never scoped then. It was only a year ago she got worse again. I had let her on a few occasions eat a bite of most foods at paties, but this is still only once a month or so. Plus, when we she was looked after once I was so intent about Emre's issues the babysitter gave her milk from the fridge!
Never given my kids quinoa, they have always been ok on rice, well I think so anyway!
Cheryl xx
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