Author Topic: Neocate - success stories and stories of side effects wanted!!!  (Read 70088 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  :)

em_here

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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

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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!
Melanie
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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. 


Offline Spectra

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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? 

Offline Jimbob

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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



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

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



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

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!!!!
 

em_here

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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 ;)