Author Topic: Failing on Neocate after 3 weeks  (Read 2565 times)

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Offline Jenny.R

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Failing on Neocate after 3 weeks
« on: July 07, 2015, 15:14:45 pm »
Hello,

I'm hoping that someone may be able to help me with what to do since my LO has reverted back to her screaming fits, grunting, squirming, arching back and pulling legs right up after being on Neocate for 3 weeks, or has anyone else had a similar experience? If so what did you do?

As a bit of background info my LO has always had a problem with her food and was unable to tolerate extensively hydrolysed formulas after a few days so was finally referred to a gastro (- it took us to be admitted to hospital twice with misdiagnosed gastroenteritis and for symptoms to get a lot worse after a week followed by hunger strikes for them to believe it was to do with her formula!! ) She was then diagnosed with CMPA and we were prescribed Neocate which she has been sooo much better on - since starting the Neocate she started sticking out her tongue (quite forcefully) and constantly sucks on her fingers - I think this is her way to self soothe as she still didnt feel perfect. Her toes are also always curled and she developed dry skin on her tummy which sometimes flare up as a rash - the ped reckons its eczema even though she never has dry skin like this before and she also now has constipation. All of these things seemed a small price to pay for her to start trusting food again and not have the spasms in her stomach like before. The only thing is that she is again starting to show some of her previous symptoms (including starting to refuse food) and I have no idea what to do now as I know there are limited options now  :(

Any help and/or advice here will be so much appreciated as I feel I'm going crazy!

Offline ~*Nicole*~

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Re: Failing on Neocate after 3 weeks
« Reply #1 on: July 07, 2015, 17:37:56 pm »
DS did well on neocate but had reflux and needed meds for that. I'm not sure what else you can try after neocate but you could consider other allergens for at least the skin. Detergents or lotions or pets or sunscreen....??? Eczema cash creep up but the other intestinal stuff I'm not sure about.

Are you using flavored neocate of just the plain?? We did not use flavored so I'm not sure if there's an ingredient there that could cause trouble.

If nothing helps, you may need to have an endoscopy done.

You may also find more info on the forum:http://www.kidswithfoodallergies.org/
There's a lot of info there that might help.







Offline Buntybear

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Re: Failing on Neocate after 3 weeks
« Reply #2 on: July 07, 2015, 20:40:33 pm »
HI, I tend to agree with Nicole if she is on Neocate then it might be some reflux going on. I would be going back to the GP xx

Offline Jenny.R

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Re: Failing on Neocate after 3 weeks
« Reply #3 on: July 08, 2015, 18:01:27 pm »
Its the unflavoured Neocate so guess it's not that. I've also had a good think about anything else we might have changed and can't possibly think of anything  ???

I guess the only thing I can do is to give it more time and hope it works out. I wonder if its because the old proteins could still be getting out of her body and flare up every so often?! Or like you say might be a bit of silent reflux...will mention it at our next appointment (she goes next week for her 3 month check up which we're a bit late for  :-[ )

Thank you both for your support and fingers crossed these symptoms soon disappear!  ::)


Offline ~*Nicole*~

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Re: Failing on Neocate after 3 weeks
« Reply #4 on: July 09, 2015, 01:35:25 am »
I googled constipation and neocate and found some FAQ related to neocate online. Here's the link: http://www.neocate.com/blog/ask-the-nutritionist-constipation/

Seems it is common for the stools to change somewhat and be less frequent. I do remember needing to give DS some prune juice at some point so there may have been slight constipation when we were addressing his nutrition needs.







Offline regitchr

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Re: Failing on Neocate after 3 weeks
« Reply #5 on: July 09, 2015, 03:47:10 am »
My grandboy was born with gastroschitis on 8/29/13.  He was not able to tolerate any other type of formula, and his mother had a milk protein allergy, so was put on Neocate.  He was also given protonix for reflux.    He is fed through a J tube.  He tolerated the formula well, but has always had horrible smelling movements that were extremely runny.  He has not put on weight for quite sometime.  Due to a move recently, we had to change hospitals.  As A new patient, the hospital did some routine tests, and found that his Vitamin D, Calcium, Phosphorus, and potassium levels were critically low.  Basically he was starving.  We were following doctors orders on feeding amounts, etc., and had no idea!!!  After much research, the endocrinology team found a study being done on children who have experienced absorption problems while on Neocate.  The team got his levels up to normal, changes him to an alternative formula, and he is now holding steady levels.  Due to the absorption issue, he has developed Ricketts, and experienced NUMEROUS fractures, even though he is not mobile.  During the time he was on the Neocate, looking back, he had many times when he experienced what seemed to be cramping, twitches, horrible diaper rashes, and periods of unexplained irritability.  He has a trach so does not speak, but he often put his fingers in his mouth, to the point of gagging and vomiting.  It took me a long time to realize he was refluxing, and was trying to get to the burning sensation. 

There have only been 19 (counting my GB) documented cases of absorption problems while on Neocate.  There is currently a research study being done to see if there are more cases, and the level of intensity of the effects.

Please, if your child is taking this formula, make sure that their enzyme levels (vitamins) are monitored regularly.  My little GB has sustained almost 20 fractures that we didn't know about because of the brittle bones due to this formula!

Offline Jenny.R

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Re: Failing on Neocate after 3 weeks
« Reply #6 on: July 10, 2015, 12:19:24 pm »
I'm so sorry to hear that and thank you for taking the time to put all of that into writing  :-*  How long was your GB on Neocate for? How did they check the vit levels etc? Was it through blood tests? My LO is putting on weight but at a steady level (22gms per day) so am guessing that she's able to absorb the nutrients at the moment - will definatly be keeping a close eye on this from now on though. I have also been putting a scoop of Alfamino into each bottle which seems to have thankfully cured her constipation issue. She does still have dry skin but no rash anymore and has stopped pulling her legs up as much - she is still constantly chomping on her fingers though. We saw the peadiatrician who believes that she was having a flare up as some proteins will still be in her body. I just hope that she'll be OK on it  :-\

Offline *foxy*

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Re: Failing on Neocate after 3 weeks
« Reply #7 on: July 12, 2015, 21:15:59 pm »
Hi. Sorry to hear you're lo is suffering.  Neocate is completely hypoallergenic so it's unlikely that she's having trouble on it. Milk proteins do take a few weeks to leave our systems - round about 6 from what I've been told so should could still be reacting plus her digestive system still might be recovering and causing some discomfort to her.
It is quite common for reflux to go hand in hand with CMPA so that's definitely worth investigating.

How old is she? And is she currently on any solids?


*Kate*

Offline Jenny.R

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Re: Failing on Neocate after 3 weeks
« Reply #8 on: July 13, 2015, 06:27:36 am »
She's almost 4 months now so she hasn't had any solids yet. She's been particularly bad the last two days with pulling her legs up then thumping them back down (this continued all through the night with spurts of screaming). Each time I took her out of her cot to calm her down she was arching her back and I could feel movements in her tummy - it felt like the gas moving around  :-\ I'm hoping that its just flare ups that will subside in a couple more weeks like you say  - I feel more reassured that it can take 6 weeks for the proteins to leave her little body  :)

Offline *foxy*

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Re: Failing on Neocate after 3 weeks
« Reply #9 on: July 13, 2015, 20:36:33 pm »
Have you tried gripe water or anything like that?


*Kate*

Offline Jenny.R

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Re: Failing on Neocate after 3 weeks
« Reply #10 on: July 14, 2015, 06:26:48 am »
We have tried quite a number of different gas drops, she didn't get on with gripe water as she projectile vomited afterwards  :-\ She is currently having the biogaia probiotics and Sab simplex (local gas drops that help with the bloating).She always gets a good burp up but never seems to pass wind  :o

Offline *foxy*

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Re: Failing on Neocate after 3 weeks
« Reply #11 on: July 20, 2015, 12:34:07 pm »
Have you tried fennel or chamomile tea in her milk?.


*Kate*