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Mummypig can you help me?

5 replies

qumps · 13/07/2009 14:55

Sorry to be rude but found your name kept coming up on reflux and dairy and soya free threads. You sound like you have had loads of experience and I just wondered if I could trouble you for some advice.
My 7 mo has severe silent reflux and is on ranitidien, domperidome and losec mups. He is also on neocate for a suspected dairy and soya allergy, with blood tests being repeated on Wednesday.
Since I started weaning him at 5 1/2 months his symptoms seem to have improved but he is really cutting back on the milk but loves the food. I know it's not great to drop the milk too quickly and with ds1 I would have given yogurt and cheese to make up for the loss. Any advice as to what I could feed him would be gratefully accepted. Also I haven't given gluten yet and I am struggling with finger food as anything more than a puree seems to make him gag and vomit.
Also did you find it affected your dc's sleep? He has managed from 7 to 430 for a few nights now which has been heaven, but at one point was waking every 20 mins.
Again sorry for being a bit stalkerish but any advice would be fab.

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qumps · 13/07/2009 19:14

A hopeful post 7pm bedtime bump.
Happy to hear from anyone not called Mummypig who has some advice.

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qumps · 15/07/2009 19:59

A last bump

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mummypig · 16/07/2009 00:43

Hello qumps, sorry for not having noticed your message before - I'm not used to seeing my name in thread titles!

So sorry to hear about your little one. It's so awful having a child with severe reflux. Your ds sounds like a combination of my ds1 and my ds2 - ds1 was the one with the cow's milk/soya reactions and ds2 was the one with severe reflux. We never did find out if ds2 reacted to milk because I was so careful and he didn't have any cow's milk or soya for quite a while - or gluten either because I wasn't sure about that. He's fine with all of them now, though.

I have a document with dairy free soya free meal ideas, which would have to be adapted if he can't have finger food but might give you some ideas. I seem to remember we used hoummous quite a lot as a substitute for cream cheese etc. But I was lucky with ds2 in that although he only ever ate small amounts of any solids, he never rejected any foods, and he also moved pretty quickly on to finger foods - I think with him he really wanted to be in control of the food rather than having me forcing it in with a spoon. I started off with pieces of cooked pear or apple and then moved on to cooked vegetables. In the meantime I was still breastfeeding him - to be honest even at 12m some days I reckoned he had 90% of his calorie needs from my breastmilk. In contrast, with ds1 I never had any worries about his calorie intake as he ate so well and was a good weight, so once he started to react to the soya formula I just cut out any kind of 'milk' completely, making sure that he had enough foods containing calcium in them. Once he got past 1 yr we used calcium fortified rice milk on cereal but that's not recommended when they are little as it's very low fat.

Just a warning that the blood tests would only pick up a milk/soya allergy and not an intolerance. Ds1's blood tests were messed up so he never was actually tested for milk or soya but I suspect it wouldn't have shown up as his reactions usually were somewhat delayed and just seemed more like an intolerance than a classical allergy.

And yes, absolutely, the reflux does affect their sleep. 7.30 to 4 sounds amazing! Ds2 was breastfed (because of my experience with ds1's intolerances) so it was hard to tell how long he slept but I know it took ages to get him to sleep and then he would wake many many times every night. In a way it's one of the worst things about dealing with severe reflux because on top of everything you are severely sleep deprived yourself. I was a bit too proud to ask many people to look after ds2 as I didn't want them to have to cope with constant screaming (on bad days) and of course there's the responsibility of giving the drugs. He was in day nursery for a while because I was working part-time. But in retrospect I wish I had given him over to other people more often in order to catch up on my sleep. I felt like my body could cope with the sleep deprivation initially because I was kind of dealing with an emergency situation, but when it turned into a 'chronic' long term case I really felt I was running on empty.

I am sorry this message may not have been much help regarding the foods, but I'll renew my CAT subscription now so I can send you that document, and think about any other things that might be helpful.

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mummypig · 17/07/2009 14:46

qumps, if you change your settings to accept messages from another mumsnetter I can e-mail you the document. I promise I won't use your e-mail address for anything inappropriate!

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qumps · 17/07/2009 20:40

Thank you SO much for getting back to me. Sometimes I feel this is such a lonely thing as people don't really understand what you are going through. We went to a christening last week and everyone was saying wow what a healthy, happy looking baby and I really felt like they thought I was making it all up!
Sorry I digress. Thank you so much for the info. I have to say things seem to be getting better day by day and we had a huge break through that he ate some banana by himself! Would love to see your idea for recipes though. I have been avoiding wheat too until I get the allergy results so not sure what to 'bulk' him up with. Hoummus us a brilliant idea for when I am brave enough to try toast!
Have read a little about the difference between allergies and intolerances. I am presuming an allergy is a severe reaction and an intollerance is ..well i'm not quite sure! The only thing he sems to have is a permanent runny nose for the last few weeks but that could be down to constant kissing from his bro who also has a runny nose or teeth. Other than that he seems fine on everything so far.
Poor you, you must have had such a rough ride with both of yours suffering. I am really lucky that my parents and ils are fantastic and I have lots of support. I agree though it is hard to leave the responsibility of him with someone else though, especially all the meds, and I do find if he gets out of his 'routine' he has a melt down as he gets into a lot of pain.
Thanks again for your advice and I have changed my setting (hopefully!).

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