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anyone using NEOCATE? why? what is your experience with it?

(38 Posts)
kalo12 Wed 12-Nov-08 10:31:19

I would like to use this for my ds as he is intolerant of cows milk, I am on gluten free and dairy free diet and symptoms of asd improved dramatically when i cut these out of mine and ds diet.

I am bf as he refuses solids mostly, he's 9 mths. But he is not gaining weight and I am seriously underweight.

Doc has referred me to allergy clinic finally but don't have appt till January. He won't prescribe neocate without specialist, tells me to use formula or soya which i don't want to do.

I feel ds has leaky gut syndrome and so i want to remove all possible allergens.

Did you need a proven allergy test to get some neocate? Is it gluten free?
Did your babies thrive on it? What age did they start? Did you breast feed aswell?

kalo12 Wed 12-Nov-08 10:47:25

bump

trixymalixy Wed 12-Nov-08 12:14:52

How do you know he is cow's milk intolerant?

My Ds was prescribed neocate after throwing up formula and coming out in hives in the doctor's surgery. We suspected he was allergic to dairy and my GP and HV let me give him his first bottle of normal formula with them in case of a reaction. We hadn't seen the allergy specialist yet when it was prescribed.

kalo12 Wed 12-Nov-08 19:01:52

well he does the same - vomits and gets a rash on his legs. when i first went to the docs they said just bf, then they prescribed soy which i was not happy with and then they prescribed lactose free, which was same reaction. i asked for neocate, but doc says he's never heard of it so will only send me to specialist, which is what i asked for in the first place!

bekkaboo Wed 12-Nov-08 19:07:33

Hi we have been on Neocate for last 15 months, Was prescribed when DS was admitted to childrens hosp after allergy to protein in milk and soya, then our consultant arranged for repeat pres, it is only reccommended to be prescribed when said so by specialist. Its very very expensive and children should only have in last case as i understan, hope this helps

Sybella Thu 13-Nov-08 13:18:29

Hi kalo12 my dd who is dairy intolerant was prescribed this by the gp when she started reacting to soya. She really didn't get on with it and we had to carry on with the soya (her reaction was not as bad as dairy). The paediatrician wouldn't prescribe it for ds1 when I said I didn't want him on soya because of dd's reaction and she said because he had had breastmilk for so long (9 months) he wouldn't take it so they wouldn't even try! Not sure this helps but I hope your both doing ok.

kalo12 Thu 13-Nov-08 15:01:14

thanks sybella, we are not too bad. my ds is refusing solids, never really accepted them but he is obviously really hungry, how was your dd on solids?

Sybella Thu 13-Nov-08 20:12:31

She was ok although we stopped all solids when she was ill initially as we didn't know what was causing it. Of course it was milk so being just on milk made it worse. Ds1 was slow to accept solids (he has the gluten and dairy intolerance) and would only eat a few limited things over and over again. His diet did expand when he went gluten free but he is still my fussy eater. I can't believe you have to wait until Jan for your appointment. Hopefully they can help but do you get any support from your hv or a breastfeeding counsellor?

Weta Thu 13-Nov-08 21:40:46

My DS has a serious dairy allergy which we realised when he first had yoghurt at 8 months. He has been on Neocate since we moved to France at 18 months.

I breastfed till 15 months (wanted to do a year but carried on because of these issues about what else to give), and we then put him on calcium-fortified rice milk, as in NZ they wouldn't prescribe the special formulas unless he was allergic to soy. They said to give soy milk, but like you we weren't keen. Here in France they are so against it that they will prescribe Neocate until the age of 12 apparently (he's now 5).

Before giving Neocate we had to try Pepti Junior and Nutramigen (which I think are cheaper but may well be fine in your case), but they both gave him hives.

He's been fine with it, he's a bit skinny but basically growing fine.

Good luck...

kalo12 Sun 16-Nov-08 09:29:28

can neocate be used with mixed feeding like a top up to complement breast feeding?

weta - where in france do you live?

misscutandstick Mon 17-Nov-08 08:10:35

can i just interupt???

We have the same problem, dairy intolerant, soya intolerant, egg intolerant on CF/GF diet (vast improvement). DS5 is off the bottom of the scale in weight in his red book, at 2.6y he weighs a smidge under 22lb and is in 12-18mth clothes. The Paed says hes fine shock.

I cheated and found some on ebay blush unfortunately DS5 wont drink it because it really is absolutely disgusting [vomit icon], but have been told (by various members on here) that sticking some nesquik in until hes ok with it will work (eventually!) I checked the label and it is indeed milk free. I also managed to get hold of some duocal to get him some weight on, but minor trials with it so far have resulted in (possibly related, but cant be sure) minor diarrhea. tests at home on-going. Incidentally hes on rice milk until i can get him to take the neocate.

XXX

kalo12 Mon 17-Nov-08 09:30:18

hi misscutand stick, - I too have thought about getting some on ebay, but not sure about contra indications so didn't dare.

i'm so sick of the medical professionals right now.
Have you tried just mixing it in food?

Rice milk doesn't really have any nutrional value other than carbohydrate, its just a milk substitute for tea etc.

How is he with general solids?

My ds has now been awake and hyperactive for 4 days and nights only napping when on the breast. I haven't slept at all and have no milk whatsoever left sad

I feel i may relent and just give him soya

Weta Mon 17-Nov-08 12:17:58

Kalo12 - I'm in Montpellier.
Sorry to hear you're having such a hard time. You must be absolutely exhausted!

I'm sure it can be used for mixed feeding, it's really just a formula substitute.

We were prescribed Nutramigen for possible mixed feeding with DS2 as I didn't have enough milk, but he wouldn't take it and I had a lot of issues about mixed feeding (he was a lot younger though). In the end I was given domperidone to up my milk suppply and that got us through with him.

You may well be advised to try Pepti Junior or Nutramigen first as they are cheaper... and fine if your kid doesn't react to them (though they still taste foul - we had some trouble getting DS1 onto Neocate and DS2 onto Pepti).

I wouldn't be keen on soy, although if it's only for a couple of months till January it's probably ok. Though if it came to that I'd be tempted to go with the calcium fortified rice milk and try to find ways of giving extra fat in other food (here's hoping he soon gets more into solids).

Sorry, I don't really know what else to say to help you - what you really need is that appointment NOW!!

kalo12 Mon 17-Nov-08 12:57:00

Weta - thanks for the advice. Just been to the chemist and they have pepti-junior and neocate there and they would sell it to me without prescription.

I wasn't sure cos it said only under medical supervision. Are there any contra indications?
I bought the pepti cos it was cheaper but it says it contains fish oil and I haven't tried fish with ds so not sure whether to go and get the Neocate. What do you think?

misscutandstick Mon 17-Nov-08 14:17:41

i think i would be more tempted to say get the Neocate (watch for that taste tho!!!) but i would say that i am biased (im certain that DS5 has protien absorbtion issues, hence his tiny weight and low muscle tone) but neocate is manmade to avoid all allergens and is ultra easy to digest (enzymes not needed). but its getting the tots to drink it thats the trick!

As for DS5's eating habits... well he doesnt chew (oral dyspraxia) so hes never liked rusks, biscuits, gnawing foodstuffs. And with all his intolerances its a bit difficult to get a decent meal into him. But he will tolerate food that 'melts' in his mouth, like deli meats (watch for milk products!) toasted gluten/wheat free bread (cut into really thin fingers), beans, soft chips, soft bacon, good quality GF sausages, gently cooked GF chicken nuggets, jelly, boiled potatoes,

Incidentally you can put Duocal into anything thats even very slightly moist... so drinks, jelly, soups, mashed potato, the list is endless, plus it doesnt taste of anything so it wont change the taste. you could even put it into neocate if need be. Its 60% processed coconut oil and 40% sugars (of some kind) it really is just calories. I dont know what kind of dosage, but im fairly sure that you cant 'overdose' on it, as its only oil and sugar - so at worst it should only cause a bit of overstimulated bowel movements. I was told to put one scoop in with each drink and meal. Ive tasted it in blackcurrant - it really doesnt taste at all but it turns things milky. each scoop is 25 calories.

DS5's Paed wont accept that DS5 is in essence coeliac, so im fighting an uphill struggle. He had the blood tests done, but because the levels werent a certain level he claims that DS5 should be fine with gluten AND milk... and hes SOOOOOO not! Even the dietician remarked on the 'raised levels' without prompting, so presumably the tests DID show something.

misscutandstick Mon 17-Nov-08 14:20:18

milky coloured, NOT 'milky' as in milk.

Am i chasing you round the SN board too? LOL

kalo12 Mon 17-Nov-08 17:57:09

right cool i will try the neocate.
did I tell you about 'digestive wellness for children' by elizabeth Lipski. its very good.

misscutandstick Mon 17-Nov-08 20:20:30

there was another reason for my choice (i checked these 2 options out a couple of months ago) and was sure there was a reason that the neocate sounded preferable.

So a quick google search reminded me:cow and gate peptijunior is a dairy based formula - whereas neocate isnt, its amino acid based - hence the revolting taste. but i am told they do a more expensive but tastier strawberry/vanilla tasting one.

Weta Tue 18-Nov-08 09:49:55

I don't really know what to advise as I think our situation is quite different to yours. Docs always wanted us to try PJ first as it's cheaper and in our case it was just a question of seeing if there was a reaction.

I wouldn't worry unduly about the fish oils though - we were certainly prescribed PJ when DS1 was 18 months and we didn't introduce fish until age 2.

I don't quite understand the difference between dairy based and amino acid based as I thought that in both cases they kind of start with cow's milk and chop up all the proteins so that they can be accepted by an allergic child, but that the Neocate did this to a greater extent (all very unscientific I'm afraid!).

kalo12 Tue 18-Nov-08 14:52:23

ok, I've got the neocate,

How do I introduce it so its not rejected? In porridge /food? or just persevere?

Are there any side effects I should watch out for (I read on the website about green poo)

Ok, Hold my hand! {neurotic terror icon]

misscutandstick Tue 18-Nov-08 18:55:52

to be absolutely brutally honest - im not much further on than you, im still in the 'introduce milkshake flavour' stage. If i tell you where im at... DS5 is fine with ricemilk, drinks it fine, but wont touch the neocate with a bargepole! so! i thought if i put in milkshake (nesquik which is basically just sugar and is completely dairy free - and TBH he needs the calories anyway) in the ricemilk, then gradually change the ricemilk buy adding an ounce of neocate, until eventually hes just on neocate milkshake, and then perhaps wean him back off the milkshake if need be (ie to pour on his cereal - but hey, why not have milkshake on his cereal too, the added calories will help)...

so, back to you.

hmm, if i was in your position, and this is in no way medical advice, but you could continue to feed him (if possible) and try him with ricemilk (which he really should be able to manage, theres barely any taste and its easy to digest). Then little by little swap the ricemilk for the neocate, until you no longer feed him and hes on full strength neocate. You could easily mix a little breastmilk too with the neocate if thats possible. Takeing a couple of weeks to go from introducing neocate to full strength neocate (ie no ricemilk) shouldnt do any damage in the short-term. Babies are quite resilient.

Incidentally DS5 gave up bottles between 10-11mths himself, on his terms by his choice. so please dont think that your little one is missing out on anything.

Totally BTW, but i was wondering what symptoms made you decide to go cf/gf?

misscutandstick Tue 18-Nov-08 19:04:44

just been thinking... if you go gluten free with him at this stage they will tell you that theres no way that they can test for gluten problems, when you get the appt in January.

I was also wondering how he was with finger foods (gluten free toast soldiers, chips, cucumber sticks etc) and how he is on babyfoods (which are horrendous for hidden dairy and gluten!)

kalo12 Tue 18-Nov-08 19:13:47

My only concern with rice milk is that it has sea salt in, and I think it tastes pretty salty so was wondering if it was ok for babies.

I am bf all through the night, and twice in the day although he doesn't stay still long enough in the day to have much.

Will try the nesquick and rice milk option.

Basically weaning has been terrible from start to finish so I knew something was not quite right, plus I took some anti biotics when he was born that weren't safe for babies and he had very upset digestion for about a month.

Anyway, he has always been bad sleeper, and bf all night. So i have been quite worn out by it all. I am now suffering quite severe PND which is of course affecting my judgement alot.

Anyway he was doing alot of hand twirlingg, stimming, I looked it up on the internet (I konw!) and saw it was signs for autism. (I am special needs teacher) so I flipped out and was convinced he had early markers, also he wasn't babbling and not making eye contact. Only thing to do was go CF/gf as I already knew he was intolerant to milk and I myself have sensitivity to gluten.

A week later he was babbling, interacting crawling and cruising, I started milk again and he stopped babbling, I cut it out and he started again!

Then I looked more into digestion and development and i noticed that he was displaying many symptoms of leaky gut syndrome.

We have a very limited diet now so I wanted to top up with formula but wanted to avoid all allergens.

Cranio sacral therapy is fab, but I am thinking that he may have adhd tendencies, and the cranio oesteopath supports this theory and has found it has links to his digestion.

Basically I cannot get over the guilt that I feel for taking the anti biotics (and anger to med proffs) and feel I need to do all that I can.

More rationally I am well educated in nutrition and holistic remedies and special needs. I'm aware I'm over reacting cos of PND, but I still feel its the right course of action.

Sorry for long post!! I know docs will just say I'm mad , but their advice for 9 months has been absolutely wrong so far!

trace2 Tue 18-Nov-08 19:18:50

hi dd is on neocate advance sheas a lactote intolarance to shes not sick but as runny water poos, wewas told in give with normal milk to start shewas on soya, so half soya half neocate was told to add more neocate every day and less soya but dd tolorated it straight away. but she only ever took 2oz at a time

trace2 Tue 18-Nov-08 19:20:25

and if going for gluten free tests take gluten for 3 months other wise it will be false reading

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