Author Topic: Neocate - success stories and stories of side effects wanted!!!  (Read 70179 times)

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Offline natashacs

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Neocate - success stories and stories of side effects wanted!!!
« on: January 12, 2009, 19:33:42 pm »
Hello. I've just started using Neocate today and I'm wondering whether any experienced Neocate users know if it causes constipation just so I can be prepared. My DS has such bad eczema he scratches until he bleeds, he is 16 weeks old and the doctor has finally listened to me. Although had to pay for Neocate myself, and its £30 for a small tub, i can see this driving me into bankruptcy, but I'm hoping if it works then the GP will prescribe it.

Anyway, if anyone has any expeirences with Neocate that they can share, good and bad, then please would you as I am wondering what to expect.

Also, does anyone know, should he take the same amount of Neocate as he would his usual formula? Thanks  :)

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #1 on: January 12, 2009, 19:56:24 pm »
neocate is wonderful in my eyes. my lo went from a screaming windy babies with the runs and blood in her poo, to a happy content baby (as content as a touchy can be).  It really was amazing to see the difference, she was obv so sensitive to cows milk.  Abbi never drank much of any formula so it didnt make a diff to the amount as she had a feeding phobia due to the pain normal formula had gave her, but as far as i was told, it should stay the same amount. 

Only downside is that it tastes awful, but i assume the earlier the age they get it the better to adapt to the taste.  if need be, if you could put up with another week of normal formula, you could mix the neocate in one oz at a time, to get your lo used to the taste. so like days 1 3oz normal 1 oz neocate (not sure how many ozs your lo takes, this is just an example) then the next day 2 oz normal and 2 oz neocate and so on and so forth, this might stop any rejection problems.  if he does reject at least there is that route to go

does that help a little.  oh and no constipation, just sticky black/dark green poo, which is normal for neocate xxx

allow a couple of weeks before you know whether there is a difference, we saw a good difference after a few days and was brilliant by 2 weeks

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Offline Jimbob

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #2 on: January 12, 2009, 21:50:13 pm »
My ds was on neocate from 11 months due to severe eczema and tested positive to dairy and soy amongst other food allergies. James saw a paediatric consultant at a local hospital after we had ended up in A&E as his eczema was that bad he could not sleep or eat properly. The first time he saw James he was certain that his eczema was related to food allergies so ordered a RASTtest where James was tested for the most common food allergies. Due to this we got neocate on prescription so did not have to worry about the financial side of things. James was constipated at first on neocate and I believe that can be common. His bowel movements also had a very strong odour. I have to say though once James' major food triggers were removed his eczema greatly improved. James is on a restricted diet but because he has neocate we don't have to worry when it comes to nutrition.

Kelly



James has atopic eczema, multiple food allergies, asthma and late talker

Offline Spectra

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #3 on: January 13, 2009, 04:00:12 am »
My son was opposite.  His poos were really runny for the first two days on Neocate, he was 12 months old at the time, but could be the different formula.  He was on the Neocate Junior for those 12 months up, he never was on the infant stuff.  He didn't seem to mind the taste at all.  He drank the same amount prepared, just make sure to read the package as it is to be prepared differently than regular formula.  He was very successful on it.  In the first week I noticed a difference, and by the 3-4 week his eczema was completely gone and he seemed like such a happy baby for once!  It took 10 months until a doctor would listen to me.  I'm glad yours didn't take as long!
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Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #4 on: January 13, 2009, 08:05:35 am »
That's good news from all of you. I really hope this works.

WHen I say my GP is listening to me, I mean she just bedgrudingly told me that I could buy Neocate from the chemist, then when I complained about the cost she moaned about that being the reason the NHS couldn't prescribe it. I hate to do the 'i pay my taxes' but her comments came in the same week as I'd just written out a large cheque for my tax bill (am self employed) and having never had any benefits from all the tax I pay (aside from being allowed to use hospital facilities when I gave birth) I really think that she could at least prescribe me some neocate!!!

Last week by which point LO was bright red with huge patches of eczema GP hastily referred us (I sense she thought at that point she shold have listened to me sooner although she didn't admit that) but when I called to make an  appointment I was told, no appointments available and no idea when the next appointment will be available. Er - what?!
So I have decided now I am going to pay for the Neocate for 2 weeks, and if it works, go to her and demand she writes me a prescription. Last time I did that I left with nothing, but this time I have video recordings of him crying and scratching his bleeding eczema, plus an 1000 word 'eczema diary' that I am writing!!!!

My entire family has a history of eczema due to dairy allergies, so at the first sign of eczema (when he was 3 weeks old and just going onto mixed feeding) I mentioned this to my GP. She looked at me as if I was lying and then told me she wanted me to provide her with my childhood medical notes from the GP I saw 30 years ago, and all my referrals to speclaiasts as a child. I really thought this was crazy. I mean, I know that as a little girl I used to have goats milk, I remember goign to specialists, and at one point I had to take my own lunches to school becuase of dairy allergy, I know that my dad had terrible eczema as a baby as did  my brother, sister and my nephew. What does she want, the entire medical records of my whole family!?!?!

She says you can only get Neocate prescribed by a specialist but am I right in thinking some of you got it straight from your GP? I don't see how I can get it from the specilaist when there are 'no appointments available' with the specialist despite being referred! Ridiculous. 


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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #5 on: January 13, 2009, 14:39:02 pm »
Well I'm in Canada and usually it was the Pediatrician who prescribed the formula, but because my Ped didn't believe it was food related I didn't get it through him.  When my son's eczema cleared up on the Rice Milk my GP agreed it was the formula and sent me to a Pediatric Dietitian.  She said she wanted him on Neocate, and so I told my GP this.  He wrote out the prescription for me, but he never even heard of Neocate and I had to spell it out for him. lol.   May be different in London?  I know you can buy Neocate in stores in the USA, and even off of Ebay, and perhaps off the Neocate.com website.
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Offline Mashi

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #6 on: January 13, 2009, 15:22:56 pm »
My story - brief as DS is very nearing naptime:

My GP flat out refused ANYTHING for DS at all.  Whatever is wrong he will outgrow it.  When I finally put my foot down and said I had realised he is allergic to milk, I was given soy formula (script) and a paed referral. I was lucky enough that the paed only took a week to get us in.

He suggested we stick with soy for a short while longer to see if it would work, but if not seeing enough progress within 10 - 14 days go onto Nutramigen. Nutramigen is sufficiently broken down for almost all babies with milk problems.  His stat was that of the 8% of babies with milk allergies/intolerances, only 3% of those need to go onto Neocate. 

We went onto the Nutramigen - prescribed by the GP as she had the letter form the paed that said to.  After 3 weeks on the Nutramigen we took him back to the paed, who has said that yes, he may need to go onto Neocate. That was when he gave that statistic.   We are starting solids now and so waiting to see how that goes before going to the GP for the Neocate script - paed does not want solids plus formula change at once as it may be too much for DS to handle.

His letter to the GP will say to give the Neocate. So, it will essentially be written by the GP although on the advice of a paed.

I would suggest that given the cost of the Neocate, and given that not all excema is caused by a food/milk allergy that you go that same route -- ie/ start with soy first, and see if that will work. Soy is more expensive thatn regular formula but not much -- about 13 pounds for a large tin.  Then if there is no improvement, go onto Nutramigen.  Again, cheaper than Neocate but still costly -- about 14 pounds for the small (400g) tin.  I would really hold off on the Neocate as a last resort, as there are cheaper alternatives that may do the trick.

Gotta run, hope that helped a bit?

Offline Edesanja

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #7 on: January 13, 2009, 19:39:39 pm »
My DD has been on neocate since she was 4 months old. From 4-7 months she had one bottle a day. It was because she is dairy intolerant and I needed a back up in case she went on strike again (a frequent occurance for days on end before I cut out dairy). It was also to try and help with her weight gain because she is very small. At 7 months I started weaning completely onto neocate as we were going to Asia and I wasn't going to be able to watch what I ate (no dairy, eggs, peanuts). We had hoped that her weight would increase since being on neocate completely but that hasn't happened unfortunately. She is on the 3rd percentile (after being born on the 50th and was about 15th when we first started neocate). She has been under the 1st percentile recently. Intolerances to foods seem to be the problem (rather than the neocate - cos I think it's impossible to have a problem with neocate), though we haven't found out which yet, and it's another 2 weeks before we see the paed again.

My DD has never been constipated on neocate, nor are her motions dark green/ black and sticky like so many babies' apparently are. But then I imagine that that is due to the food intolerance problem as she goes a lot - 6 times a day is not unusual. And I think the frequency is causing her to have a constant rash and bleeding blisters. Just need to figure out if that's a symptom or a cause of something else.

In NZ only a paed can prescribe neocate. A GP can renew the prescription for it though.

Anyway, sorry for the ramble, but I am thankful that while at 9.5 months she is only eating 4 foods (we were up to 10 but have cut back to try and find what she's not tolerating and slowly introducing again) I know she is getting all she needs nutritionally from neocate (our paed told us that humans can live entirely on neocate and need nothing else!).
Jenny - mama to



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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #8 on: January 13, 2009, 19:46:39 pm »
A couple of other things I thought of -- who has your GP referred you to? A dermatologist, a paed or a paediatric gastroenterologist?  Or, an allergist perhaps?  Could you possibly try for a referral to a different specialist?  Can you ring back the place you were referred and ask them if you can go onto a cancellation list, ie/ tell them you can be there within x hours should anyone else cancel same day?  Can you go private?  I know, extra cost, but if you pay the couple of hundred pounds for a private specialist that's about two weeks worth of Neocate....would save you money in the end? 

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #9 on: January 13, 2009, 20:12:41 pm »
James was prescribed neocate by the paediatric consultant at our local hospital. I am not sure if our GP could have prescribed. I will do a few searches on the net and see what I can find out. I am not sure if Emma Lou' dd was prescribed it from the GP actually, I can't quite remember. My memory is not as good as it used to be, too slep deprived I think.

Kelly



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Offline Mashi

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #10 on: January 13, 2009, 20:34:47 pm »
Yes, I don't think it's that a GP *can't* prescribe it, as I said my script will actually be written by the GP as the paed has said that we are to go on it in a few weeks time, but that they don't want to.  And, the reason they don't want to is understandable - any baby that has a need to go onto such a specialist formula really does have the need to be seen, treated and cared for by a specialist.  GPs aren't sufficiently trained and confident in diagnosing problems like this with infants. When I first went in for Nutramigen the GP told me he would only give me soy because he had never in his career (he was quite old, too) diagnosed a baby with milk allergy/intolerance or prescribed specialist formula, except when he was the one who wrote it after a paed had made the diagnosis.

So, I do think your GP is right in not prescribing Neocate for you (sorry!  I was peeved when my GP told me that but when I thought of the reasons, they make sense!) but I do also think that s/he should have been forthcoming in giving you a referral without making you demand it. And, s/he should be willing to help you get IN to see that specialist, if it means referring you to a different specialist (as I said perhaps a different type of specialist than who you are seeing will get you in faster).  I do also think that if you were told that there is no chance of an appointment from whomever you spoke to, it is worth calling back, asking again, and if you get the same answer ask for that person's name.  Then call your local PCT to complain.  But, as an aside, why are you calling for the appt?  Your GP should be putting in the referral and you should just get a letter with the name of the doctor, the date, etc?

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #11 on: January 13, 2009, 20:40:46 pm »
i had to see a ped, and a dietician, before i could get neocate. the doctor said he couldnt prescribe it, it had to be through a pediatrician :)  This was due to the expense of the neocate, and they need to know its not being prescribed willy nilly :)

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #12 on: January 13, 2009, 21:02:29 pm »
You see my memory is failing. I think I need to sleep for a year.

Kelly



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Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #13 on: January 13, 2009, 21:24:11 pm »
Wow, thanks for all the replies! The GP has referred us to allergy clinic because of my family history of dairy allergy and eczema. Neocate is seriously expenseive I can see why they can't presecribe it willy nilly, I am just hoping that if I don't get this appoitnment soon and the GP sees the improvement then she will prescribe it in the meanwhile.
We had our first day on Neocate today. Wierdly, DS usually takes 7 oz a feed to 8oz, and he refused more than 4 or 4.5 oz of Neocate. he didn't seem bothered by the taste, he gulped it all down no probs, just stopped after 4oz as though he was full. I emailed the neocate nutrition dept - found the email on their website - talk about sad! Anyway, I asked them if it was higher in density or something and they said no. But no matter what DS was not interested in any more than 4oz. I guess I will see tonight if he wakes from hunger, if he does then I will try it 50 50 tomorrow wiht his old formula as perhpas it is the taste he didn't like.

Mashirmaro, I seem to be in some new NHS choose and book system in which you log on to the internet and 'choose and book' your own appointment. When it said no appointments online, I called the helpline number and they confirmed there are no appointments. They said the hospital would now write to me in two weeks time (becuase I'd phoned) and let me know when there would be an appointment. So I might get an appointment soon. But when the LO is scratching himself to bleeding its hard to wait for some letter which is going to take 2 weeks to arrive! Dammit I am annoyed that the GP is right about not being able to prescribe it. She is so cold this woman I would like to have proven her wrong!!!!


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

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #14 on: January 13, 2009, 21:26:39 pm »
rar! I HATE choose and book! Can you find out the ped's name and ring the secretary, I have got cancellations that way

It may well be the taste, it prob hits the taste buds a few ozs in and he thought ewwwww lol ;)

Offline Mashi

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #15 on: January 14, 2009, 07:28:31 am »

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.

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #16 on: January 14, 2009, 07:29:45 am »
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



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Offline motherof3

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #17 on: January 15, 2009, 01:57:51 am »
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.

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Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #18 on: January 15, 2009, 09:52:31 am »
Hi Andrea, thanks for your message. How long did Abby take to up her intake again? Thanks

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #19 on: January 15, 2009, 19:07:54 pm »
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.

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Offline KittysMum

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #20 on: January 19, 2009, 20:04:45 pm »
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

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #21 on: February 04, 2009, 15:55:33 pm »
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!
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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #22 on: February 06, 2009, 18:22:28 pm »
 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 
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Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #23 on: February 08, 2009, 08:55:39 am »
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?

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #24 on: February 08, 2009, 19:19:16 pm »
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.) 

Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #25 on: February 08, 2009, 21:09:23 pm »
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!

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #26 on: February 08, 2009, 22:41:41 pm »
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

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #27 on: February 09, 2009, 16:09:48 pm »
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

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #28 on: February 10, 2009, 15:36:55 pm »
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 :D :D :D :D woooooooohoooo

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

Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #29 on: February 10, 2009, 16:37:44 pm »
thanks for that link - really helpful!!!

Offline chantelle

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #30 on: February 11, 2009, 21:42:54 pm »
Hi I've just been reading your stories about the eczema its so sad to see your lo`s suffer like that, I suffered with eczema when i was a child so know how distressing it can be, I was really worried my ds would get eczema too but that's not the case it turns out that he has mpsi though, he has been on neocate a while now which is working wonders, he was suffering before the neocate very little weight gain and constant vomiting he was really poorly bless him.

I also never got given a copy of the spiral bound neocate guide, It would of been usefull to me as i will be weaning soon too, Cant understand why the pediatrician wouldn't of thought to give it to us when given the neocate. But thanks for showing the the recipe link will definitely be looking there.

chantelle  :)
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Offline proudmom1228

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #31 on: February 23, 2009, 17:26:33 pm »
My son started Neocate this past Thursday (2/19).  He just turned 8 weeks yesterday. 
Long story short about 4 weeks ago he was having mucus/runny stool with a very fowl smell and he was just not as happy as he was the first couple/three weeks of life.  It took 2 dr. visits for them to test his stool and they found microscopic traces of blood.  She automatically changed his formula to Nutramagin.  He seemed to be much happier and the smell of his stool had improved, but I took him last Monday because of a severe cold and when they were taking his temp. rectally he had a BM and the nurse and I both saw a small red speck that was obviously blood.  It was still testing positive for blood (but he had only been on the Nutramigen for a week or so). 
After talking to a GI specialist she called this past week and wanted to put him on Neocate.  Since he has been on it his temperament has changed back to moody, uncontent, gassy, fussy baby as before.  I was just wondering if anyone else has had this problem with the Neocate and if it normal or may just take time to adjust to.  I am concerned that she changed his formula to soon and didn't give the Nutramigen time to work because he seemed much more happy on it.
He has gone from 3-4 BMs per day to just one.  He strains and fusses throughout the day, but in turns just passes smelly gas.  The Dr. is not interested in rechecking his stool for blood.  I guess she assumes this is an automatic fix. 

I was just reading about all the great things Neocate has done and just wondering if it took some time to work. Most of the children I have read about are older that my 2 mo. old.  Maybe he is too young for something this strong??

Any input would be interesting.
Thanks!

Offline hjrmom01

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #32 on: February 23, 2009, 17:41:09 pm »
I don't know where everyone is from but here in the US Nutramigen came out with a formula that is called Nutramigen AA and it is essentially the same thing as Neocate but it is over the counter.  It is still pretty hard to find (only found 2 places that carry it...a Rite Aid pharmacy next door to a hospital and the hospital's medical supply store) but our peds GI office gets TONS of samples so they give them to us on a weekly basis.  Don't know if that is an option for you or not but just thought I'd let you know about it!  Oh, and I think I found it one other place online (I think it was Enfamil's website???)  I hope everyone's LOs are doing ok!


Offline Spectra

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #33 on: February 23, 2009, 18:51:22 pm »
I did find that it took about a week or two for his system to get use to it.  At first his BM's were runny, and then they went back to normal.  Could be that he just needs some more time.
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Offline Jimbob

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #34 on: February 23, 2009, 19:57:04 pm »
Is it possible that the neocate has made your lo constipated. This is quite common. Some babies/children have to take something for constipation at the same time.

Kelly



James has atopic eczema, multiple food allergies, asthma and late talker

Offline proudmom1228

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #35 on: February 24, 2009, 18:49:20 pm »
I had read about Nut. AA, but the Dr. did not mention it.  After reading about it, I found there was not much difference.  I am in the US and we are having to order the Neocate in bulk.  Thankfully insurance is helping to pay some.

I know he spit up a lot more on this than when on regular Nutramigen.  This is like the consistency of water, but my Dr. is absolutely against cereal of any sort until 4 mo.

I called yesterday to ask the Dr. about constipation.  She says everything is normal...problem is she has been telling me everything is normal all along.  So of course I am loosing my confidence in her.  We are trying to get into another Dr. on Thursday that can hopefully help straighten us out.  Thanks again for all of your advice help.

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #36 on: February 24, 2009, 19:18:15 pm »
Hi Natasha, I've not been on the boards in a while and so I can't remember where you are at with your doctor and a paed on getting a Neocate script, but if you are still buying it on your own, have you tried Weston's online pharmacy to see if they are cheaper?

http://www.westons.com/acatalog/index.html

They do Neocate and Nutramigen AA - as pp said Nutramigen AA is their amino acid formula, which is exactly what Neocate is, so it's merely a matter of brand.  May be a bit cheaper for you if you are still kicking your doc's butt into giving you the Rx for it.

Offline hjrmom01

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #37 on: February 24, 2009, 21:40:17 pm »
I noticed that nutramigen AA made my LO more constipated and gassy....regular nutramigen didn't  :-[


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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #38 on: February 26, 2009, 17:39:17 pm »
Hello everyone,
I'm glad to see some of the posts on nut. aa.  My lo has been on it since 9 mo and is now 11 mo.  He is doing much better with eczema and allergies but is very constipated and gassy.  My dr. prescribed Miralax for the constipation but that just seems to make his gas worse.  It does help with his stools, though, so the dr. wants him to stay on it and just "deal with the gas".  Any suggestions?  Anyone out there with a similar problem?  Any advice you may have would sure be appreciated.  I'm at the end of my rope here!

Offline natashacs

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #39 on: February 27, 2009, 08:10:18 am »
Hi - I don't know much about nutramigen, but we've come to the end of week 4 on Necoate and he's getting his feed sizes back up, and the eczema is much better. It hasn't gone completely, but its reduced by about 70 per cent. I have now been given 1 per cent cortisone cream to use for a week to see if that can get rid of it, still waiting for that appointment at the allergy clinic.

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #40 on: February 27, 2009, 12:39:55 pm »
Wow!  I'm glad he's doing so much better!  Hopefully you'll get an appt soon!
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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #41 on: April 19, 2010, 20:15:15 pm »
my peadiatrician gave us neocate but only peads can perscribe it not GP's, i went to A & E in the end and finally they gave it to me!

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #42 on: April 19, 2010, 20:20:18 pm »
Go to A&E i did in the end, your GP wont perscribe it as only the peadiatrician can do it !!!

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Re: Neocate - success stories and stories of side effects wanted!!!
« Reply #43 on: April 20, 2010, 05:26:00 am »
Neocate, while making for stinky poos, was a blessing in our lives.  DS was on it from 12 weeks until just past a year when we tried wean to Nutramigen.  That failing, he has been on Rice Milk ever since.  I have started allowing cheese on his pizza the past few months and it seems to be going well.

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