Exclusivly neocate for 2 weeks

[LivinOnAPrayer]

As the title suggests, Alex's dietitian has just put her on just neocate for 2 whole weeks!! :eek: I dont know how alex will deal with this. I mean, she has to, and she cant tell me differant. But shes almost two!!

Do you ever feel its just....wrong?? I mean, this kid should be eating what we eat. Instead, shes on hypo milk. I just dont know how i feel about this.

[KapowSchazam]

What was the reason she was put onto it? I mean, what has happened to make the dietician suggest this???

[LivinOnAPrayer]

hi. The only food Alex has been eating lately is carrot, pumpkin, sweet potato, apple and farex. And her neocate. She's had reactions lately to foods shes been eating for ages, like banaba, peas ect. Some were servere, some not so bad. She has constant reflux, eczema, screaming, yuk nappies.

But the 5 foods i mentioned arent enough and so we've got to start all over again. The dietitain is calling in back up as shes not a real pead dietitian, so we should know where we are heading within the 2 weeks.

What annoys me is that alex had bloods taken in march in brissy for allergy testing, and the results seem to have dissapeared!! grrrr.

[Nowhere]

At least taking he off foods for 2 weeks will give you a clean slate so to speak to add in new foods one week at a time after the two weeks is up KWIM and you wil know what is ok and what is not

good luck

[kiwibird27]

It will give u a chance to confrim it is allergies though, If she still does it on Neocate then u know it's not food!!!

I know what u mean about the eating thing, first thing everyone ask me "Is she eating"....It's just a new way of life. It doesn't even bother me anymore, I just kinda got used to having a child that doesn't eat!!!

[KapowSchazam]

Although annoying for you, it does help to eliminate the question of what's causing it.

How is Alex going with it now? How many days has she been on Neocate alone?

[bossoflatch]

we get 3 months off foods when tay reacts :(

everytime she reacts they say 3 more months and we'll start again .

tbh .. i love when tay is just on elecare :yes: she is much happier and thrives on it .. its when shes on food that shes terrible and miserable.. Shes is 17 months now and she just doesnt understand that food hurts her.. :hissy:

how is she going now ? has she settled some for you ?

[LivinOnAPrayer]

Hi guys :wave:

I think alex is doing better off the food, although its only been two days. She hasnt vomited. But shes crook with the flu and breathing troubles so its hard to gauge where shes at!! Once this cold clears i think we'll get a better picture.

I myself feel better now that shes just on neocate. At least i cant hurt her anymore. I honestly think she reacts to pumpkin. And thats a common food in her limited diet so we're going to avoid that come food time again.

In another thread ive said shes got her test results back. Alex is allergic to egg, wheat, peanuts, soy and milk, although we think milk/dairy is an intolorence. Anyways, ive got 12 days before ive got to stress about all that. :goodvibes:

[Phascogale]

Hmmmmm, is two weeks going to be enough to get rid of any remaining offending proteins? Some foods can take 4-8 weeks

You know that some of the foods that's she's eating are high in salicylates ie carrot, pumpkin and apples (unless they are golden delicious) that a lot of people can be sensitive to (bananas are high in amines).

Maybe it might be worth talking to the dietician about a low chemical diet as well. The RPA hospital has put out a cookbook called Friendly Foods that also has some information about this.

Also you might find Sue Dengate's work interesting. She talks a lot about low/high natural chemical foods and other food additives. Maybe get a copy of her food Fed Up.

http://www.fedupwithfoodadditives.info/

[LivinOnAPrayer]

The RPA hospital has put out a cookbook called Friendly Foods that also has some information about this.

We just got that book!! I've been meaning to read it!!

Alex has been on the just neocate diet for 4 days now, and has just started with dihorria. Is this a common symptom of cleaning out the system, or something more sinister? Alex reacted to elecare after tolerating it for 6 months, with servere dihorria (that kept her hospitalised and ng for a week). Im worried....
Shes not drinking enough either i dont think.
Can someone tell me how to work out a quota?? Shes 22 months, 9.4kg and drinking approx 900ml a day total. Obviously no food either. Is that enough?? That includes some water/powerade mix or peadyalyte (like hydrolyte but for bubs).

[kiwibird27]

Megan is 10.8 kgs and needs 1050 mls of 20 calorie per 30mls ELECARE to grow. Do u make up the Neocate as per the packet or are u making it up stronger??? If u are concentrating I know diahorrea is common.... Megan won't tolerate concentrated feeds at all. Gastrolyte and Powerade also gives her SHOCKING diahorrea. Maybe only give her water, she is getting enough fluid in the milk.... Megan needs 840mls of fluid, including milk for the paed to be happy with her hydration level.

Of course if your doc said give hydralyte then do it, but it affects Megan bad and if u don't need it then probably don't give it???

[LivinOnAPrayer]

Stacey alex is on what the tin says to do. I think i will stop giving her powerade, just water from now on. And i think i'll maybe take the neocate back a scoop/water and see if she improves. Sux being alex's dietitian lol.

[kiwibird27]

Is she on the toddler or baby dilution. I don't know much about Neocate!!! Wouldn't change the dilution cause then u run into other issues. Would talk to dietician first. Megan is on 20 calories per 30 mls. Thats baby dilution, toddler dilution is often (not always), 30 calories to 30 mls. If u make too many changes then u won't know which one helped. One thing at a time!!!

[LivinOnAPrayer]

alex is still on the baby neocate. yeah your right. I'll just cut out everything but water and stick to the tin for bottles.

Poor kid was watching me eat tonight and trying get food. not that she was hungry, just wanted to eat i think. its hard to say no, considering how hard it was to get her to eat 6 months ago.

[kiwibird27]

Must be hard!!! Can't symathize though...Megan doesn't eat and doesn't want to!!

[LivinOnAPrayer]

Stacey, ive stopped giving alex powerade (hasnt had any for 36 hrs now) and shes still yukky poos!! Maybe not as bad every nappy, but still not right. What should i do next?? I cant see the dietitian for another week and a bit, and the gp is a bit hopeless with this stuff. :confused:

[Nowhere]

peta, how are her poos yukky I know thats a yul question lol but are they yellow mucus, runnny, green brown, water what lol

Could be her bowles healing from the inflamation of the food trials

[LivinOnAPrayer]

lol Amy, yuk!!

Ok, everyone else, this will be TMI.


Amy they're really watery green yuk poos. Green liquid with the occasional chunk. :barf: They really, really, really stink too. SO BAD!! I hope its her bowels cleaning out. Is that normal??

[Nowhere]

Could very much be her bowels cleaning out, Mikis poos are always liquid also, its yuk lol

how many poos a day is she doing

[LivinOnAPrayer]

Between 4 and 6 i think. I hope it is her cleaning out....

It will stop, right!!!!???

[Nowhere]

with that many sounds like she could have gastro to be honest

is she hydrated

[LivinOnAPrayer]

grrrr shes only as spewy as usual, and shes frinking plenty. We stopped the powerade to see if that will help, but in 48hrs no help. This has been going for about 3 1/2-4 days now. Im thinking of taking her back to gp, cause need to discuss bloods anyways. But if its gastro theres not really any point. Geez kids are hard to work out!! She seems happy enough, and shes getting over her cold.

[reAllytee]

Wont hurt to get a stool sample checked ... As hard as they are to get when in that state ... I have to try tomorrow :rolleyes:

Squeak currently has the watery green stuff which seems like his system is still clearing out but we want to rule out gastro just to be sure.

Could be overflow because she is blocked which is what is Squeaks problem atm.

[kiwibird27]

**** was hoping the powerade was doing it!!!

[LivinOnAPrayer]

**** was hoping the powerade was doing it!!!


Me too Stacey!!!!! :hair:

But the dietitian rang today to work out what strength neo alex is supposed to be on and a quota to work towards, and i explained whats been happening and what i want to happen. Shes talkin to another dr about ceoliac and will call me back today.

Alex is in a good mood today though, so thats helping my nerves. Although shes refluxing after every feed. Even on her losec 20mg/day. What are megan and miki on??

[reAllytee]

In what way is she refluxing ? Sounds silly i know :o

[LivinOnAPrayer]

Just bringing up milk about 10 mins after a feed. Shes never been projectile, just a small puke. Thats pretty usual for her though.

[kiwibird27]

Losec won't stop the reflux, It only lessens the acid symptoms. Megan was on 20mg daily when she was little, have now cut it back to 10mg since the fundo. She also gets Zantac,2.5mls the combo really worked for Megan, along with E mycin to speed up gastric emptying. Made her diahorrea worse but it was a trade off.

I replied in SN thread too.

Does she power chuck???? Megan would throw up 30 - 40 times a day on jejunal feeds....Nightmare

[reAllytee]

Thats pretty standard though ... Not nice to be covered in puke but standard especially if being on solids was upsetting her. Her system will still be trying to sort itself out so you have to have a little patience to see whether it will settle.

Is she actually in pain from the vomitting or it just happens & she is on her way so to speak ? Cause her spewing again isnt a drama its when its causing pain so screaming, arching, gulping, gagging or watery eyes etc is where there may be an issue to look at her meds.

[LivinOnAPrayer]

dietitian rang, her quota is 1200ml/24hrs and normal strength. Weight to be moitiored weekly. So gotta go get her weighed tomorow to make sure she doesnt slip too much in the next week and a half. Thanks for the support guys. Its so crappy

[kiwibird27]

Did u ask what her hydration level is??? So if she drinks under a certain amount then to be worried about dehydration??? Good luck Peta

[LivinOnAPrayer]

No i didnt even think to ask, stacey!! When i take her to get weighed (CHN room at hospy) I'll chat to the dr and ask. Alex is really good though, she'll very rarely get deyhdrated (or could be a bad thing, maybe she does and just never looks it). Im starting a full on food diary tomorow, even though shes only on milk, then i'll get in practice for when we start foods again.

Dietitian also said we cant put strength of neocate up cause alex's gut wont handle it, so atleast ive been giving her the right strength all along!! Hey did you guys know farex mixed cereal has SOY in it???? GRRRR:hair:

[Nowhere]

Thats pretty standard though ... Not nice to be covered in puke but standard especially if being on solids was upsetting her. Her system will still be trying to sort itself out so you have to have a little patience to see whether it will settle.

Is she actually in pain from the vomitting or it just happens & she is on her way so to speak ? Cause her spewing again isnt a drama its when its causing pain so screaming, arching, gulping, gagging or watery eyes etc is where there may be an issue to look at her meds.


that being said relfux it self can also be a problem for Neurologicaly aftected children like alexi, (and miki ) as its not just the pain thats the issue KWIM also fact that they are more likely to aspiarte it KWIM, as well as it aftecting the weight gain

[LivinOnAPrayer]

yeah, she doesnt seem in pain, just sick of the yukky taste!! I would be too!! Amy i do worry about alex aspirating, she chokes on it 50% of the time. And the weight loss....if that happens, i think i'll bury my head in the sand.

What weight is miki at now???

[kiwibird27]

You might b heading 4 a fundo!!!

[LivinOnAPrayer]

You might b heading 4 a fundo!!!


God i hope not.

[reAllytee]

Oooops forgot about the aspirating .... Think i would know cause Squeak was having issues with that :o

Im hoping that a fundo isnt needed :fingerscrossed::hugs:

[LivinOnAPrayer]

Hey guys, alex is pooping bright yellow squidgy stuff with little dark/black lumps in it. Is she constipated?? She makes huffing and puffing noises but its like dihorria?? How does that work :confused: What does bright yellow mean???? :hair:

[supa_star323]

Hey i know nothing about this kind of stuff, so i'm not even going to try and offer any advice. i just wanted to say i hope things work out, though I am sure they will eventually.

[reAllytee]

You mean like mustardy colour ?

Cause thats exactly the output they want .... It took Squeak probably a good week in hospital before this was the poo he was producing & they were finally happy.

But that being said i cant see it so dont really know if its right ... Can you take a sample into your Paed or GI ?

[bossoflatch]

You mean like mustardy colour ?

Cause thats exactly the output they want .... It took Squeak probably a good week in hospital before this was the poo he was producing & they were finally happy.

But that being said i cant see it so dont really know if its right ... Can you take a sample into your Paed or GI ?

? the mustardy/ yellow colour for us was malabsortion issues ?? but she was llike a sticky yellow mess ?

on elecare we actaully get normalish brown stools ..
on neocate we got black tar goop.. :thumbsdown:

[reAllytee]

? the mustardy/ yellow colour for us was malabsortion issues ?? but she was llike a sticky yellow mess ?

on elecare we actaully get normalish brown stools ..
on neocate we got black tar goop.. :thumbsdown:

So the yellow was bad ????

**** im so freaking confused about all of this how can there be so many varying views on what they need to be producing ?!?!?!?!

Squeak has been doing the yellow stuff now for two days after the green gunk & me clearing him out & thats with him on solids again ... Will keep an eye on it & have it checked out if its not 'right' ....

Why the hell is this all so hard to work out ?!?!?!

[Nowhere]

Hey guys can I just say the all babies are difernt also applies to reflux and GI babies, KWIM what is normal for one may not be normal for another.

If you ever concerned that there is something going on funky with the poo then take it to the dr to get labs run on it to check for blood, mucus, malabsorption etc kwim.

Also kids that are on food as well as neocate or elecare are going to be diferfent to kids on only ele or neo

The main things to watch for are hydration, and maintaining the weight, but as far as poo goes if concerned then get it looked at

Mikis dr has told us that yellow, dark green, light green, brown, mix of all of them are RELETIVELY ok depending on the other symtoms at the time, and to wory when its Jet black, red of white, I prety much go by this kwim, miki has neer done a non mucus poo but she has malabsoprtion syndrome to thats extpected

[reAllytee]

Ok thats cool then thanks Amy cause thats what i have been told all along.

That the yellowy or mustardy poos are fine especially when on just Neocate & thats what they were happy with when Squeak finally passed that in hospital.

We have only now just got him to do it again since leaving so i figure thats right being we just cleared him out. Now the problem comes with keeping it like that !

[LivinOnAPrayer]

Its hard isnt it!!

Arrggggghhh kids should come with instruction manules!!! lol

Well alex hasnt been drinking much at all and has now stopped pooping. Shes had 1 in 2 days, which is SOOOOOOOO unlike alex. We usually get 6 or so a day. Not that im complaining.....its a nice break...but why?????

[bossoflatch]

as amy said .. all kids are different

but tay only usually moves her bowels once every two days .. sometimes.. once a day but more likely 1 over 2 days

when she reacts to food we get several loose a day .. as long as shes happy i dont really mind kwim .. ? i take a mental note of it for next time.. but theres not much i can do about it :o