Neocate - success stories and stories of side effects wanted!!!

[Mashi]

I love the idea humans can live on Neocate alone!!!!

Yes, my paed said that it is pretty much the same thing as being fed intravenously.  It is essentially just a collection of vitamins and amino acids.

[Jimbob]

If things get too bad you could take your ds to A&E and explain that you need help. We did this because it was effecting James' eating and he just could not sleep longer than 10 minutes at a time. We then got an appointment really quickly plus we were given an antihistamine to help James sleep in the mean time. It did help that we had our dfriend with us who is a nurse but I know from what she has said that they often get babies at A&E with severe eczema and are sometimes admitted to the ward just so they get seen sooner. James has been admitted a few times due to severe, eczema, infections and also eczema herpeticum.

Kelly

[motherof3]

We loved Neocate in this house!  Abby was on it from 4 months to 14 months when we were able to wean her to goats milk.  The Neocate did constipate her so she was on Lactulose for about 6 months when we were able to wean her from it.  We switched Abby cold turkey and she did fine but she also started drinking less ounces per bottle.  Not sure why.  But she did eventually increase back up to where she was prior to the switch.  I hope it works well for your lo.  It is def expense but our insurance did cover it at 80% b/c it was considered durable medical equipment.  Not sure how it would work in the UK as I am in the US.

Andrea

[natashacs]

Hi Andrea, thanks for your message. How long did Abby take to up her intake again? Thanks

[motherof3]

She slowly worked her way back up.  Can't remember exactly, seems like a lifetime ago.  But I am guessing at a month or so.

Andrea

[KittysMum]

Doing well on Neocate here too. I'm pretty sure the GP prescribed it for us; I remember the dietician being pleased to see that he'd prescribed it, as it was what she'd have recommended too. Best of luck xx

[SAHNE]

DS2 was on neocate from 2 mons to 6 mons - and did fabulously on it.
It did take a while to adjust to drinking the full amount - maybe a week or more.
He was bothered with constipation big time on it - so we used Milk of Magnesia 2x's a day the entire 4 mons.
Good luck!  Hope it helps his skin!
Steph

[chantelle]

 HI my lo went on to neocate from about 13 weeks old when doctors finally diagnosed him with mpsi after two whole months of really bad vomiting and little weight gain i had been breast feeding before hand and since the day he started the neocate he has had no side effects whatsoever it has made such a difference and it really agrees with him. The only thing i found when first using it was that it smelt awful but i don't even notice the smell any more, my son is 18 weeks now and I'm just glad he s started to benefit from it 

[natashacs]

Good news, the eczema got REALLY bad (that is not so good) but GP finally took note, saw a paedritican who said eczema was very severe and ordered the GP to presecribe neocate. So we've had it for the last 10 days. His amounts are definitely down and he lost weight the first week, but health visitor says that's not too much of a problem. Eczema is slowly but surely improving. Am still really irked with my GP, I told her when LO was about 4 weeks old that he was developing eczema as a result of dairy allergy (me and my entire family hvae the same thing). He's now 20 weeks and she's finally listened. The eczema was allowed to progress from small patches to huge swathes of his body, its really deep in his skin and will take a few more weeks prob to clear up.
The GP spent weeks telling me it was caused by the weather and refusing help. Why don't these people listen?

[KittysMum]

Know where you're coming from there! It drives me mad.

Just a word of caution, as your tale sounds so like my journey with Kitty - the dairy allergy seems to have been the tip of a rather large iceberg. Of course, your experience may be (and hopefully will be!) different, but just so you're aware.

I've gone from thinking she's just allergic to dairy, to thinking it's dairy and wheat, to thinking it's dairy and wheat and avocados... Right now (and this is pre-allergy test results) the tally is: dairy, wheat, avocados, potatoes, chick peas, butter beans, cats... and that's without risking tomatoes, fish, nuts, oranges, strawberries etc (which I'm sure would be problems if I went there!)

I really hope your LO's skin continues to heal and that he does well on Neocate. It's such an upsetting condition to watch your lo struggle with. Kitty has always been very low on the charts and behind developmentally too, so don't feel bad if your lo is the same. I think they put a lot of energy into fighting illness when they suffer from bad eczema.

Best of luck and keep us posted. (Did the GP give you a spiral bound Neocate guide too? They're quite useful, as they give a few recipes to try when weaning, and also suggest stirring the Neocate into meals after cooking to add more nutrients and calories.) 

[natashacs]

Oh god Kittys mum that sounds like a nightmare. I was wondering whether it would be the tip of the iceberg. Did all the allergies show themselves up in the same way? I am weaning already (when the GP was refusing to help me I thought my only option was to get the milk down by starting weaning, GP said I was wrong but paedritician said I was quite right to do that given the situation I was in) - but am taking it very slowly and only introducing new food every three days. Was about to do potatoes though, didn't realise that could cause a reaction.
I'm hoping its only a dairy allergy as that has seemed to be the problem across my family - although we have also had a few people have severe astham attacks in response to cats, dogs, horses and grass, so will be steering clear of those for a while.
The eczema is healing slower than I thought it would, ie when I put him in the bath today it all went red and it still looked really bad. But its definitely getting better.
my gp didn't give me this spiral bound Neocate thing - is it about making sure they get enough calcium? I need to get hold of it I think. My health visitor gave me a weanign guide for weanign without milk protein, we're still only at fruit and veg stage though so haven't read it yet!

[em_here]

Hi there. If you don't have the book I have all the recipe pages scanned and saved on email, I'm pretty sure I haven't deleted them as a fellow BW sent me them. I can email it to you if you pm me your email address? X

[KittysMum]

Hi Natasha,

Sounds like Emma Lou can sort you with the booklet. Let me know if you don't manage to get it and I can scan ours and post or email it to you.

I hope yours ends up being just a dairy allergy. We've just had the results of Kitty's RAST test (allergy blood test) and it's confirmed what we thought - plus, she's also got a big problem with horses, cats and dust. The wheat may not have been as bad as we thought... small mercies!

Yeah, the allergies showed up in exactly the same way. I'd recommend you keep a diary - boring, but so useful when you want to look back and see any patterns. You can write down what they're eating, if they've been anywhere significant (a farm, around cats etc) how the skin looks, what meds you've been given/applying etc. It will be really helpful, and if it turns out that it's just milk for you, then you just won't need it.

We've found that bathing Kitty really infrequently (literally once a month) helps, in that she always claws herself up when she's naked. Plus, putting socks over her hands at night and during changes prevents her from doing too much damage.

It's hard work having an allergy baby. This board is great for support. You often just wish you have a 'normal' baby like everyone else (then feel terrible when you see babies with real problems...)

[em_here]

Hey hon, thanks for your pm with your email address.  Unfortunately as the email was old its been automatically deleted, what sort of stupid feature is that

BUT here is the link with all the recipes woooooooohoooo

http://www.neocate.co.uk/aaa_neocate/0,616,565,111,89,0.ashx

[natashacs]

thanks for that link - really helpful!!!