I truly despair!!

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Permalink Reply by Sarah Moore on July 6, 2009 at 12:23pm

Thank you Ginny and Cheryl for your advice. We are going to stick with Neocate for a while and see how it goes.

My husband slept with her last night and says she does wake up hungry in the night but doesn't cry - she just sucks her thumb. I hated feeding her in the night because she was always in so much pain afterwards she took hours to get back to sleep. But I guess I am going to have to set my alarm and go in in the night to feed her. Though even when she has gone hours hungry she still only wants 2 oz and I squeeze in 3.

She never cries for hunger or from pain. She just seems uncomfortable after a feed and squirms through it. I have been told to leave it 4 hours between feeds but that's 6 feeds a day/ night so still only 18 oz a day. I will see how it goes but don't think she wil up her consumption so may try every 3 hours so at least it's an extra feed so 3 more oz.

I really feel for how much you have gone through and you both sound very brave about it all. As for me, it is started to affect my relationship with husband as I get so upset all the time and he thinks I should calm down.

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Permalink Reply by Ginny S on July 9, 2009 at 9:26pm

I think you need a big hug! It is truly awful and has an effect on everything. It affects relationships with husband, siblings, family and friends. Actually, I would suggest you husband takes over the feeding for a day as mine got the picture when he had a go and is very hands on now. Also the sleep deprivation sends you round the bend, let alone the stress of it all. I think it is very difficult for anyone to understand what it is like tryign to feed a baby that just won't feed, or with tears streaming down their face. I feel completely sick thinking of what I have put Stella through, especially when the blistering showed up in her gut in her endoscopy and I had spent months trying to get her to eat or force feeding her and shoving a dummy in as soon as she wretched to stop her throwing up her food. Really, none of these doctors understand the impact on your life. I really feel for you as the first year was totally awful for me. All that worrying about how many oz, now it is how many bits of gluten free pasta! Argh! I think in a way it has ended up making my relationship with my husband stronger, but it has been an aa rocky road. You are doing a fab job s. Just remember that your lo has got this far because of you being a concerned caring mother xxxxxxxx

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Permalink Reply by Sarah Moore on July 10, 2009 at 8:04pm

Thanks Ginny,

Well we put Josie back on normal formula since yesterday because we had two days in a row we had only got to 9 oz on Neocate by bedtime and managed to get a few more oz in during the night. She would also scream her head off every time it came to feed her. Even if hubbie just sat down with her at bedtime in her rocking chair. She would get hysterical knowing that a feed was coming.

She has been so much calmer with normal formula not having masses but more and without all the dramas and stress for her.

BUT,


It has clarified she certainly has a problem because she has been crying and in pain all day. She has hardly slept and now I can hear her trying to get to sleep upstairs sucking her thumb but not achieving it. It's going to be a long night. And it has to be the first night my husband has been out since she was born.

We tried half formula/ half neocate at 6-30 p.m.- she still only took 1 1/2 oz and was in pain not long afterwards.

I don't know what to do . Nobody knows what to do. The dietician rang from the hospital and said that most babies will swap over eventually and she must be very wilful. She says we can't add anything to the milk to make it taste better. The mixing it together isn't working. She mentioned soya milk but I am very apprehensive about that.

Has anybody else had this problem of getting their baby to take Neocate and overcome it? We have been trying for 9 weeks now with Nutramigen and Neocate and it's going from bad to worse.

I am terrified she is going to end up being tube fed.

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Permalink Reply by Ginny S on July 10, 2009 at 8:24pm

Yes, that is why you should see Dr Shah. Stella just vomited neocate and would not drink it. Have to go out now sorry will look tomorrow. You need to use a dummy too, essential for reflux babies (I was averse to them before but they help). Good luck tonight. You could try making it taste better with a bit of rice milk, but rice milk does not have any calories. You can get flavoured neocate but usually it is for babies one year plus. I had the same issues about tube feeding as stella initially vomited the neocate and hour or two after she drank it, so it was hardly going to stay down if they put it straight in her stomach. There are fat supplements and vitamins to go with rice milk, but I don't think they do that with very young babies. Also there is a milk from america which is better tolerated. sorry have to goxx

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Permalink Reply by Ginny S on July 11, 2009 at 12:03pm

Stella is now on some anti histamine meds and something called nalcrom, very safe and gentle, kids are on it for years. It blocks mast cells and the allergic response to foods, so I wonder if this is an option for you. Perhaps you could use nalcrom and go back to Aptamil without the allergic responses. I was in the same positition as you as I thought milk the problem but I just could not get Stella to drink it. First of all she drank it, then she vomited it, and then she stopped drinking altogether so I abandonned every trial I did of it. I had the same problem with all the alternative milks. So for me they increased all the meds, adding raniditine to the omeprazole and that is how I got the milk (Aptamil Easy Digest) into her for 12 months, albeit feeding her all the time and not sleeping .... I always wondered what I would have done if I had known earlier that milk was definitely the problem. I think the anti inflammatories (ketotifen) and anti allergy drugs (nalcrom) are used instead. This is what Stella has been on for three weeks now and they are definitely helping. Wish I hhad more advice. It is so hard and complete rubbish that a baby will suddenly drink necoate.

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