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
Views: 18
Replies to This Discussion
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Permalink Reply by Sarah Moore on -
I really reel for you and Ginny. You have been through so much. Thanks for your advice on the other post. If you don't mind me asking how much did it cost to See Dr Shah privately? I am sure we can't afford it but wondered if I may be pleasantly surprised. How do you then get it through the NHS?
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Permalink Reply by Ginny S on -
oh my goodness, you poor thing. I really want to talk to you ... I have to go out now ... I wonder if we can exchange phone numbers somehow ... you sound like you could advise me. So interesting about the artificial sweetners, as that was why I think Stella vomited all those milks. The vomiting was horrific. By the way, we have nalcrom capsules that you take apart. You empty the contents on to a spoon and wash it down with water ... I went to see Dr Shah privately but he knows my doctor at Chelsea and keeps telling me to stay there. I think it is something political, but quite frankly I am exhausted trying to suggest what they should do next as I am not a doctor. So instead I hassle Dr Shah for his opinion on the phone and then he calls my doctor. Not ideal! Will post again later as have to take my son to nursery now. So many thanks for all the list of drugs. This is BRILLIANT! and mega helpful for me. xxx
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Permalink Reply by chezzie8 on -
Lol,
It does help to chat to someone going through what you are. Would could start a Dr Shah appreciation society!
Email me on chezzie8@hotmail.com and I will give you my number, we can have a chat sometime.
C x
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Permalink Reply by Ginny S on
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sorry Cheryl and Sarah,
Off line for a few days, hands very full!
Sarah - Dr Shah is at Viveka in St. John's Wood, London. Lorna his secretary organises his appointments. She is on 0207483 2844 and the viveka website is www.viveka.co.uk
I think it was about 240 quid. Or maybe less, I can't remember exactly. He also puts you in touch with a brilliant woman called Rosan Meyer, a paed dietician, who really knows what she is talking about. They talk to you properly rather than like a neurotic mother! I think you can get private appointments through lorna at Great Ormond Street too. Good luck, I really think it is worth seeing Dr Shah as I have been round the houses with these doctors before getting to the top of the tree. I have a friend with three children with severe reflux and eosinophilia, and we found out about him together. He has totally sorted two of my friends children, she is over the moon (and one is five years old!).
Best of luck.
Cheryl - I will email you directly. I am investigating something called Desensitisation, developed by a doctor at St. Mary's Padd
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Permalink Reply by Lucy Page on -
ginny - we are due to see rosan next week re florence and weaning advice - i want to use our tine wisely with her do you have any pearls of wisdom from your own experience that i should know about ahead of the meeting//? dr shah says florence also has eosinophilia/ food allergies etc - luckily so far flo has responded well to neocate and we have took her off all her reflux meds. thamk you for your time, lucy
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Permalink Reply by Ginny S on
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Rosan is wonderful, lucky you for seeing her! She will guide you. If you are doing well on neocate then it sounds like Rosan's role will more be about suggesting foods to try and menus. She will also check the level of nutrition and suggest dairy free supplements/vitamins/fats etc. I know that one of the best things you can do is to rotate foods as much as possible so the body does not start reacting to more foods. The less variety you give them the more likely they are to start reacting to those foods too. my problem with Stella is that she is so averse I can not really get her to eat much at all. Rosan has been a real rock though and confirmed my suspicions about Stella being in pain and having inflammation. She sees so many children that she has a wealth of knowledge. It will be interesting to see what she has to say about weaning as I think a lot of the children she sees are further down the line with all sorts of associated problems having not had help early enough. She has great tips like sticking with brands that they like and not changing routines. It sounds like you are seeing her at the best time for Florence. Hope it goes well. x
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Permalink Reply by Lucy Page on
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Many many thanks for taking the time to reply - it is very helpful and I will post what she says about weaning. Dr Shah says earlier diagnosis of this the better and the best chance they have so I feel vindicated a lot for bailing out of our local NHS service and privately referring to Dr Shah when Flo was 6 weeks. We have a friend who didn't get diagnosed properly by Great Orm St until he was 15 months old and they have a nightmare he basically can only eat rce products and haribo! Thanks again, Lucy x
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Permalink Reply by Julie Kerr on -
Hi Chezzie
I also have seen Dr Shah privately and now also refered on NHS. He has also put my LO Amelia (9 months) on 1mg Ketotifen twice daily am and pm - and Nalcrom x 3 daily and kept her on all reflux meds (Losec 25mg split dose, Erthromycin x 3 daily).
He also gave her steriods or 5 days which was the worsty 5 days she has ever had! Initally she then was given Ketotifen which also made no diff. Then we went back and he said ok we will add in Nalcrom. Since being on Nalcrom and Ketotien plus all the relux meds she has honestly been the most miserable child I have ever seen. Screaming, crying, whinging or fussing 24/7 and SOOOOOOO irritated. I cant help but think its the drugs?! I mean she was bad before but is worse now.
Did you experience anything like this?
She gained 1kg in 1 month which made Dr Shah think we are on track with the allergy thing but said Nalcrom may be needed as well.
I have no idea whats going on but between myself and my husband and a million and one distractions of toys, tv, walks etc she honestly wont stop crying. Its so horrible at 9 months old I'm not sure how much more we can take going round in circles with her!
Anyone had bad experience with Nalcrom or Ketotifen?
PS - She is on Neoate and Carobel and has been for 5 months and also dairy, wheat, gluten and soy restricted diet
Think may have to get onto Dr Shahs secretary but I know he is away for 3 weeks :-(
Thanks for listening.
Julie xx
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Permalink Reply by chezzie8 on
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AHh, he is away for 3 weeks! lol. Now I feel stressed too.
Well, from my experience, with these kids with these true allergies and gut problems all the reflux drugs can make them worse, as can most drugs full stop. My son was started on zantac at 3 weeks, things got worse. Changed to Lansoprazole, worse day of his life! (full 12 hours screaming, no sleep) Losec, very bad again.
I have to agree with Shah in the theory that these kids only reflux cause there bowel or stomach's are reacting. Take away whats causing it, i.e the drugs and you will see an improvement.
When we started Nalcrom, Keto and the steroids like you it was AWFUL! better when he finished the steroids, but I began to realise it was the Nalcrom. Both my kids are sensitive to gelatine and nalcrom comes in a gelatine capsule, even when opened its enough to upset them. My son I reaslied had terrible wind couple of hours after the Nalcrom. Neither of them take this any more. My son was scoped, we had a proper diagnosis, 15 more days of steroids, urghh, and was started on Sulfasalazine. It was this point I was still persisting with the zantac as I thought the reflux bothered him. When I stopped it things got much better. Less screaming and night wakings too.
I also took him off the ketotifen too at one point as I realised all the drugs were upsetting him, so I let him settle down, then started it back at night as there is loads of good research out there for ketotifen actually curing some kids of this.
If I were you , I would take Amelia off everything for a few days. How was Amelia fed from birth? if she was put straight in losec and stuff from a young age this could of been causing problems all along. I know some kids do benefit from anti reflux meds with this condition, but not those with bad bowels. Maybe if they have EE, in their eosophagus as that is so irritated they can't cope with extra acid there.
So, take her off everything for a few days, and then re-introduce the ketotifen at night and see how she goes. Keep the diet very strict, no eggs either or corn. Just basic rice, veg ,meatand limit the fruit too and juice. These are all things that upset these kids.
Be warned if there is not improvement he will want her scoped, and it isnt nice, so try the drug free route first, then you can gauge what is upsetting her when she goes back on them. If Amelia hasn't had a certain amount of time where she has been on just the neocate with no drugs or solids, I think you should do this first. You will see an improvement very quickly. We had to go down the scoped route as my son was on just neocate for 4 months after I stopped the reflux meds and he was still crying all the time.
My heart goes out to you, we are no where near perfect but much better. My son was wrigglinh around in pain night and day for months, would be awake from 5 every morning as he couldnt sleep any longer, and would have just 30 min naps screaming himself to sleep. Teething and illness makes them so much worse by the way, you literally have to just bide your time with them. Its so hard to deal with a crying child 24/7, get out as much as you can and beg people to help you. My son is so much better on sulfalazine, its an anti inflammatory, can take 8 weeks to work! and we have had the dose increased twice, but now he doesnt get diarrhea after every mouthful, and is tolerating quite a few solids now.
Something else I have also found which upsets them is washing powders, shampoos etc... Change them all to hypoallergenic. My son even reacted to the ones that dissolve in the washing maching in the meltable plastic. All these things add to inflammation in the tummy belive it or not.
Cheryl x
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Permalink Reply by Ginny S on
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Crickey, you two ... Cheryl, that is exhausting reading that, poor you. I hope things have improved since you posted Julie?
I have found that Stella is a lot better on Ketotifen and Nalcrom, not massively, but definitely a big positive shift. Stella is 21 months and on a dairy, wheat, gluten, soy, egg and nut free diet , actually more than this as she won't eat most things (eg fruit and vegetables, anything runny or mashed, anything off a spoon etc.). She eats gluten free pasta, dry gluten free cereal for breakfast, chicken, white fish, gluten free fish fingers and is now eating a few mouthfuls of broccoli stalk and green beans, sometimes she eats peas too. She drinks rice milk with added calogen.
Drugs are Losec 20mg, ranitidine 5ml, ketotifen at night 5ml and nalcrom 3 x a day before meals.
Stella really improved on steroids, but they did not work for 8 or 9 days. She started to eat like a horse and in a room with other people and without me distracting her with the TV or stories.
It is so hard to know what is wrong ... any illness upsets them so hugely ... stella is so allergic yet at her worst she was only eating chicken and gluten free pasta or skipping meals altogether so I could not work out what she was allergiec to as she wasn't eating anything.
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Permalink Reply by Ginny S on
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sorry me again something wrong with the website as I couldn't type any more in that last box. Stella was very up and down at the start of the steroids (first week).
Julie - Amelia could be ill. Also she is on an antibiotic. I never put Stella on these as that was, in my view, the route of Stella' s problems. I haemorraged three times after giving birth and I breast fed on really strong antiboitics. The doctors said it was important to carry on feeding and that the antibiotics were fine. I was nervous about formula as my three year old also has multiple allergies and can't tolerate milk so I carried on breast feeding. Anyway, Stella got the most appalling diahorrea (projectile, hitting the wall, etc) and she started screaming and literally didn't stop crying for 7 months. I swear the antibiotics obliterated her gut.
I would drop the antiboitics first, or if not you should be giving amelia a probiotic to counter balance the antibiotic. You need to get Fructobacsilis Infantalis, made by Biocare. It is a probiotic that is not made from cow's milk. You can get it from a place called Nutrilink, by ordering it on the phone. It is 20 quid.
.
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Permalink Reply by Ginny S on
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Sorry - it did it again! Amelia could have leaky gut which is caused by candida overgrowth. I don't know about the other drugs having a bad effect.
The only other thing I have found is that Stella is better on higher doses of the reflux meds. She is better on raniditine with losec.
But, like Cheryl says this is all trial and error. I have spent months tweaking drugs and trying to work it all out.
If you are into this sort of thing I have a healer working on Stella, who has really helped us. She does distance healing, it is 15 pounds per week and you just send a photo and chat to her. I think she has helped keep Stella's energy balanced.
I also wonder sometimes whether all the drugs are causing the problems. It is a bloomin minefield. If you want number of healer my email is gsurtees@talk21.com
I am also seeing a man at an allergy centre in Surrey for advice. He does specialise in supplements to help candida as well as allergies. He does something called Desensitisation for allergies ... anyway I can give you his details too if you are interested. I am investigating his suggested routes too.
Have you done a thorough stool analysis on Amelia as parasites can cause reflux and food intolerance. There are only two places that do proper stool analysis - the ones in normal hospitals do not analyse for most bugs. it has to be a kit from the Tropical Diseases Centre in London (they just happen to do the full screening kits, not neccessarily alooking for a tropical bug).
I have just done a stool test thing on Stella, waiting for results. Also a lack of pancreatic enzyme can cause food intolerance so I am looking at that too. Maybe on a wild goose chase, but hey I think I should eliminate everything I can. I am doing all this through the allergy man in Surrey
Hope some of this helps, email me for any more info if you want it.
Ginny x
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