Ketotifen

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Permalink Reply by Sara B on February 9, 2012 at 19:12

Fab stuff, no reactions, I would go for it it has worked wonders for us.

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Permalink Reply by Laura Perks on February 9, 2012 at 19:24

Dont suppose you happen to have a handy explanation of how / why it works for intolerances / reflux / whatnot ??

I've heard good things, want to try it. Scared GP wont prescribe it based on email from Shah's secretary, he's off climbing a mountain and not sure the clinic letter will be with GP yet ....

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Permalink Reply by Ginny S on February 9, 2012 at 20:00

It's brilliant, go for it! Just replied in detail in an email to Laura Perks so perhaps she can forward all my information on to you. Some children are also allergic to Neocate. My daughter vomited that as well. Ketotifen was a real turning point, but all reactive foods must be total eliminated - no dairy, wheat, gluten or soy. Also I think Gluten is a total nightmare. I don't know how old your child is, but if I could go back to the beginning (my daughter is now four and a half), I would have put her on rice milk and calogen (fat supplement) and weaning onto dairy and gluten free foods. Forget the whole milk drinking thing if your child is six months plus. My daughter vomited until she was 2,.5 years old and could not manage food either. She has eosinophilic condition. You need to look up Dr Shah at Great Ormond St who is the only sane doctor on this topic. He is totally brilliant and turned our lives around. However, my daughter's gut was so enflammed that she had to do a course of steroids for two months before she got better, and then the ketotifen worked Ketotifen will not work necessarily on its own if there is too much inflammation. However, if the inflammation isn't too bad then ketotifen will work. My daughter is still on five meds and has not eaten any reactive foods for two years - however, she still needs the drugs. Her gut is so allergic, she is basically allergic to all food. The anti histamines calm the gut and allow them to eat something. We thrive on a diet of chicken, gluten free sausages (Waitrose own brand are the best as they do not have any spices), gluten free fish fingers (tescos or sainsburys), duck (very unallergenic), lamb (also unallergenic), potatoes and vegetables. She won't eat fruit, bread, cereals, sauces etc. But she is now doing well. I have been through the mill but Dr Shah is your man!

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Permalink Reply by Laura Perks on February 9, 2012 at 20:06

Ginny, that's me, just read your mail !

We're with Dr Shah already, LO is only 13 weeks old so we're at the start and hope to get things right, from the off, as much as poss. 

We're 3rd week into neocate and I just cant decide if she's tolerating it or not ..... she's never vomited, never had skin conditions, just screams and writhes and is extremely unsettled / refuses feeds / gets v.allergic type reactions with nasal congestion etc. But I can't give her anything else at 13 weeks presumably ???

Dr Shah said stick with neocate, and add ketotifen. I'm hoping the inflammation wont be too bad in one so little. 

Will your daughter ever grow out of this, do they know ?? How does she eat at all if she's allergic to all foods, or are the few you've listed tolerable for her ?

We're on ranitidine too, I guess we keep up with that in addition to ketotifen ?

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