Has anyone had a baby with almost complete food aversion? [Archive]

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june05isttimer

02-12-2007, 20:12

HI there

Just wanting to know if there is anyone out there in a similar or been in a similar situation to us?

Our dd2 is now 10 weeks old and her life till now has been very distressing.
She wasn't diagnosed til she was 6 weeks old of having a cow milk protein intolerance and some secondary reflux as a result also.

She was put on to pepti jnr and losec and she picked up for a few days then went backwards.

I have struggled since she was 3 weeks old in getting more than 60mls a feed into her.

10 days ago our pead ended up putting her in hospital and continously tube fed her for almost 3 days on Neocate and then gradually we have been then doing bolus feeds and offering her the bottle first.

She is still lucky to take more than 40mls when we offer her the bottle and there are at least two or three feeds a day where she won't take any orally at all..

I guess I just want to know if anyone has been in a similar situation to know if it does get better or if they did or went anywhere to seek help about her feeding...

We are in qld and have been referred urgently to the Ellen Barron family centre (old riverton) for a week to try to assist with feeding and settling. I just don't know how successful they will be....
Our pead also mentioned maybe seeing a speech pathologist also to help with feeding problems,,,,

Can anyone help at alll or something...

thanking you in advance from a very stressed out and frustrated mother....

bossoflatch

02-12-2007, 23:42

im sorry you are having a rough time hugs

our gastro doc told us that pepti is bad for cmpi .. babies
you would need to be on neocate or elecare i would think.. sorry not sure if you are ?

my daughter was bad for feeding by wanting to feed every 2hours on the breast and then not gaining weight..

we went to the ellen barron centre to be assessed.. it was ok .. but i guess ours was to prove that she had issues.. but so hard as she is so complicated..

who is your pead. do you think you need a gastro (gi ) referral ?

my dd is 10months old and still has issues.. we saw a speecy 2 months ago ..and they coulldnt explain what was going on with my dd .. but they are great to offer suggestions . did they not offer you a nasal gastric tube after the hospy visit .. ?

again hugs

naiwen

03-12-2007, 00:10

My DS has a oral aversion from his time in NICU, has your bub ever been intubated?
I would definalty try to get a GI refferal, I am getting one for DS as I think sometimes you need a specialist to sort these things out.
Hugs.

Nowhere

03-12-2007, 00:18

hugs darl

i have no advice just wanting to send hugs

kenz has still got her feeding tube at 20 months so i am useless a oral feeding stuff

Al i can surgest is make sure th reflux is completly under contol cause other wise the speech therealy wont help is she stil in pain

smelly

06-01-2008, 21:19

Hi ladies
I know this is an old topic, but I was wondering if I can butt in and ask you all a quick question about tube feeding? Were your bubs losing weight when the NG tube went in, or just not gaining weight sufficiently? I've popped into this section several times in the past and got great advice about dealing with DD's feeding issues (from day dot she was a struggle to feed) - she has a supposed cows milk protein intolerance, is allergic to soy, takes losec for reflux. We have seen dietitians at the Royal Children's hospital in Brisbane and are waiting to see a gastroenterologist in March. Since increasing the strength of her Neocate she has started to gain weight slowly again, but she's still not eating. Dietitian mentioned NG tube, but thought she looked fat enough (at 12mths, she is 25th percentile for height at 72cm and way off the bottom of the chart for weight - only 7.2kg).
Thanks!

LivinOnAPrayer

07-01-2008, 07:44

Hi Smelly. wow, your story could be ours!! My DD is 17months (almost 18!!!! scary) and 8.3kg, dairy allergy, on neocate, still not gaining. She is small for her age on all fronts.

We are seeing a new pead in ten day (but whos counting) as we've not been able to get help! It has become a real struggle to get food (elecare or puree solids) into Alex at the moment. I have spoken to the speechies in RBH (we go there too!) and they're calling me back today to discuss Alex's food aversion (not definate diagnosis though). Alex also looks 'fat enough' (just) at the moment but just isnt growing at all.

Jo9999

07-01-2008, 07:55

A friend of mine had the same issue with her little boy. Her paed advised her to start solids at around 4 months because of this, which he did take to and she got some special recipes which contained milk. He slowly got better and now at just over a year old her little boy is thriving. He has also outgrown several of the intolerances.
I can't give you much more info because it wasn't me, but I do know that at 2-3 months she was tearing her hair out, he just wasn't eating. And now he is doing great.
Thought you'd like some hope :)

Cordelia

07-01-2008, 22:32

Best wishes. Sounds a bit like DD... she refuses solids as well and very low weight for age. Just wanted to send some good vibes you way anyway.

LivinOnAPrayer

08-01-2008, 15:40

we have an appoint next thursday to talk about a ng tube.... :gloomy:

june05isttimer

08-01-2008, 17:27

Your lucky lexi that you haven't had to get one til now.....

I don't know when or if we will ever get rid of ours.

She is 5.6kgs and is 3 and a half months but had only put on 30gms in the last two weeks which is not great.
I have increased her volume of neocate in the last few days and she seems to be tolerating a bigger amount per feed now but its spread over about an hour so I feel I am forever feeding. The little terror will take some by mouth sometimes but never enough to sustain her.

Our pead believes its a gut allergy/inflammation now and we are hoping to get into a gastro asap to investigate further...

Oh boy sometimes I wouldn't mind another bub but then most of the time I think that I couldn't go through this again as I am exhausted constantly.....

Let us know how you go lexi!

june05isttimer

08-01-2008, 17:29

smelly

08-01-2008, 19:41

Hi all
Thanks for including me here. It is awful to hear how many of you are struggling the same way I have with DD, but at the same time it is very reassuring to hear I'm not the only one. To say feeding my bub has been stressful is an understatement, and few people seem to realise how testing it is.

I am surprised to hear about the NG tubes. DD has been a LOT worse in the past than she is at the moment, but it was only recently when we got to see the dietitians in December that an NG tube even got mentioned.

The whole reason DD ended up being put on Neocate is because she would refuse to feed. She dehydrated badly in the first week we were home from hospital because I couldn't get her to breastfeed. After lots of struggles with formula the paed put her on Neocate and reflux medication. She actually did quite well on this (still small, but gaining okay) until we started solids. The paed also thinks it is a gut allergy/intolerance because she gained no weight (actually lost weight at times) for 3.5months once we started her on solids. The paed said he'd start her back on her reflux meds 2 months ago just in case it helped a bit.

The dietitian we saw at RCH was LOVELY. I can't tell you how wonderful it was to finally get some reassurance and PRACTICAL tips regarding DD's diet and how to manage her food refusal. Not all of it has worked for DD, but some of it has been helpful. DD has gained a little bit of weight on stronger formula and more fat in her diet. Dietitian validated my concerns about soy due to a nasty rash on DD's head and she was very good at following us up over the telephone. She has encouraged us to call the department if we have any concerns.

At the moment we are waiting for our gastro appointment. Even privately it is taking nearly 5 months to get in. If DD keeps going the way she is I think we'll avoid an NG tube. But if we have a return to the dreaded food/formula refusal for 18-24hrs at a time I'll be begging for one now that I know they exist!!

Does anyone else angst about the fact that no one can tell for SURE whether their baby as a specific allergy or intolerance? It is driving me nuts that there are no clear answers here and that most of the diagnosis relies on me noticing changes in her behaviour.

LivinOnAPrayer

08-01-2008, 21:51

i am so frustrated by not being sure about allergies too!! I wish there was a sure test to tell us what to give DD and what to avoid (although we're avoiding most food anyway lol, DD's choice, not ours)

Ng does sound good, and i never thought id say that. Sounds like a stress less way of gaining. DD has only gained 860g in 8 months.

smelly

09-01-2008, 10:03

June05isttimer - I just realised you said that your daughter was 5.6kg at 3 months and being tube fed because she had gained so little weight recently. At that age my daughter was 4.7kg and gaining ok, although feeding was still an ordeal and I couldn't shake a niggling concern that something wasn't right. It really does show that it's not the WEIGHT so much that matters, but weight in proportion to height and the general trend of growth over time. More recently it has taken DD 7 months to put on 1kg so the curve has been non-existent and her paed agreed that it was time to work out what was going on. It so confusing! :)

june05isttimer

09-01-2008, 16:25

Hiya

The ng tube was put in for us mostly because our dd at 6 weeks started refusing all feeds and if she did decide to take some it would only be 40-60ml.

Some days she would only have 150-300mls in a day and it was getting worse and worse.

She had started to drop weight but the put it in before that became a big issue.

Having said that she has not put weight on in over 2weeks now which our pead is concerned about. She has however grown in length and head size so she hasn't stopped all together though.

We go back next week so I am hoping she will have put on some as that would be a month since any gain then...

We got a phone call today that we have a gastro appt at the end of the month...y ippppppeee.
Heres hoping we start to investigate what is really going on.

LivinOnAPrayer

09-01-2008, 16:37

Alex only manages about 300-400ml of elecare and aboyt 100g of puree a day. Shes almost 18months.

I wish someone could just tell our bubs that they're being silly lol.

june05isttimer, good luck with the gi appoint! Thats good that you can get in. I hope they give you some answers.

So are there any bubs Alex's age around here with oral aversion? I sometimes think it's gotten this far because we live rural, without heaps of specialists here, only travelling ones. I wonder if we lived in a city if it would be differant...

kiwibird27

09-01-2008, 16:41

Okay most of u know me already, My DD is 19 months old, and has complete oral aversion.

At birth she pretended to bf really well, then became dehydrated , admitted to hospital and we found she had VERY severe life threatening reflux, along with a list of other medical issues. Turned out to b a rare metabolic disorder but thats another story.

In 8 months of living in hospital I have met alot of tf mummies, and My DD after 2 months of intravenous feeding was finally NJ (tube past the stomach) on continuous feeds 24/7, so we could go home (she would vomit 2 mls worth of milk), so attempting feeding was futile. She had learn't that eating causes pain and vomitting. It's kinda like putting your hand on the iron, u only do it once. Tube feeding to us wasn't a large issue to us because it was better than living in hospital on TPN. She is on Elecare, we think she is allergic to everything but they don't really know!!!!

Some babies are tube fed to get them stronger so they can suck feed, If they like to feed, then a habermann feeder can help them, any little suck is rewarded with milk, so it builds up their strength, didn't work with my DD cause it's the milk part she has a problem with.

Some babies, especially with reflux hate feeding so it's more of a behavioural issue, this is a very hard issue to overcome, because u need to force feed them to get them to drink enough but this just makes the problem worse, sometimes it's better to tube feed the milk, stop milk oral feeds and lay off it all, then introduce solids like it's a fun game.

Other babies physically can't feed for whatever reason.

Some babies don't gain weight no matter how much u feed them, some don't absorb in their gut properly, some may have an imbalance somewhere, Some kids may seem like they have allergies but they aren't absorbing, the symptoms are the same, not much is known about the bowel!!

Other ideas, Probably thought of them already but, concentrating feeds, less volume more of all the good stuff, adding polyjoule or liquigen (talk to doctor) that increases calories in the milk

One more thing.....If it's likely u will need a tube for awhile (Longer than a month) Book a surgeon appointment to get a button (gastrostomy) often the wait is long but it makes such alot of difference!!!

We also had a Nissen fundo done on my daughter 6 months ago to stop her chronic reflux, she is now gastrically fed and it's the best thing we could of done, no more pain. It is a large operation though but worth it in our case!!!!!

Hope I haven't raved on too much, I am very much a hospital mum and am used to surgery etc so I apologise if I have scared any-one

kiwibird27

09-01-2008, 16:43

Also Make Sure U Are All Taught How To Do The Ng Tubes Yourself, They Aren't Hard, It's Stupid Lots Of Hospitals Make Mums Run Backwards And Forwards To Put Them In.

zenifa

09-01-2008, 16:43

I've been lucky as my 2 kids are great feeders, but I have a friend who has a little boy with an almost complete food aversion.
He was born 6 weeks prem, had a stroke and now has CP. To top it off his mum is celiac, dad has allergies and this kid has had terrible reflux and feeding problems (he is now nearly 2.5yrs old). He's had allergy testing and is allergic to gluten, soy, dairy, protein etc and basically is currently only surviving on rice cereal and pumpkin! He is quite thin (underweight) and recently had some GI surgery and a 'button' put in. They have tried all sorts of formulas, medications and seen lots of specialists but nothing has really helped. Its a really sad story and situation, and I have no advice, but thought I would share.

Good luck to you all, my thoughts are with you!

smelly

09-01-2008, 16:56

Wow folks. Nothing like a few other real life stories to put my own feeding woes into perspective. I feel very lucky now that apart from a brief few months of going backwards that DD has generally put on weight (albeit, a tiny bit at a time). I am so sorry to hear how severe some little bubs' feeding issues are. I'll stop whinging now!!

June05isttimer & lexi11 - our bubs sound VERY similar. Until reading about your stories on here I have never met another baby that could go most of the day refusing all food/formula and who could survive on so little when she does eat!

June05isttimer - that is fabulous you got a gastro appointment so quickly. Hope you get some answers. March can't come soon enough for us.

Lexi11 - it sounds particularly difficult being in a rural area! Hard enough when the specialists are just down the road!

LivinOnAPrayer

09-01-2008, 17:38

Thanks Megans mum, for sharing your info and experience. I will deffinatly be hitting the hospital up for lessons as its not just down the road for us.

Its amazing that all of the bubs on here have had issues from day 1. Alex was about 12 months before things went wrong. I wonder what thats about then...lol

I know what you mean, smelly. I didnt know anyone (except from special needs chat on here) that has a food aversion kid. Actually there arent any other kids in our town with Alex's issues so that sucks...I guess really its good in a way.

june05isttimer

10-01-2008, 13:51

HIya

I somehow too feel a little less disconnected from reality after reading things on here with bubs with similar issues.

I am the same.. .living in such a large area I still had not come across anyone in our situation or even close to our situation.

Lots of bubs with reflux all different severities but none with other issues not yet investigated or babies who just won't eat.

Our dd2 has had some solids off a spoon and sits with us at dinner time and seems soo keen on what is going in our mouths etc but she reacted really bad to the organic rice cereal I gave her once and the small amount of pears I gave her another time that we are not going back to attempting solids for a long long time. I just really hope for her sake that she can tolerate something orally as she seems soo keen.

She is soo silly with her bottle.. I can shake it in front of her and she gets totally excited and opens her mouth then may suck a few times then just plays with it in her mouth pulling it in and out.
She even had hold of the bottle herself today pulling it in and out of her mouth which i think for her age being only 14weeks is pretty good co ordination!!!! I would rather her eat it though!!!!!!!!

It seems she can do it when she wants to but its been almost 2 months since she has even finished a bottle let alone drank enough orally to sustain her.

hugs to us all I say!!!!!!!!

kiwibird27

10-01-2008, 14:32

I don't know about your DD2's allergies but I give my daughter cruskits, They aren't a choking hazard as they dissolve in their mouth, My speechie recommended this. Megan likes the crunch, and it has a bland taste so my DD likes it. Also a small sliver of ripe pear in their cheek, It also dissolves with saliva, but gets their mouth moving to strengthen muscles

canberramomma

10-01-2008, 14:44

My DS refused the breast and all commercial formula and was diagnosed with failure to thrive. I ended up giving him a homemade formula which fattened him up. My paed was not very happy though as he insisted that it was not medically proven to benefit the baby. Better than living on air, though, eh?

LivinOnAPrayer

10-01-2008, 15:37

FTT is such a crappy term.

Alex is considered FTT too so beats me why we're still doing all this with no help. Hopefully thursday will be a turning point for her.

Im getting sick of Alex's clothes so i've put alot of them away and got some new stuff for her. lol, its usually a kid growing out of clothes so fast!!

Thanks for the cruskit tip stacey. I just gotta get it in the mouth...

kiwibird27

10-01-2008, 21:06

I would put the cruskit in Megans hand and I would eat i, after a few weks she thought it was a fun game, then I slowly put it to her mouth, after about a month, she put it in, I cried!!!!!

smelly

10-01-2008, 21:59

Cruskits are good, but make sure you get CORN cruskits as the original (normal) ones have milk in them (I made that mistake once). Also, the corn ones don't dissolve as well as the original ones so they can still be a choking risk. DD has choked on them a couple of times because they tend to get sticky. She has a suck on them and the occasional crunch, but can't say they are really a "food" as such. I often liken it to the way DH chews on his pen - he enjoys it, but never intends to eat it.

LivinOnAPrayer

10-01-2008, 22:15

Stacey thats amazing. You must be so patient. :hugs: Hows Megan going with food now?

I found some sayo's the other day after reading every packet of biscuits in woolies, but alex wont touch them. She just cries. :no:

I looked at her in her cot today and got so upset. While i was standing there watching her sleep, i noticed just how thin she's getting. She also had an apnea as i was there, which didnt help me feel any better at the time..
:fingerscrossed: for thursday.

smelly

16-01-2008, 19:22

lexi11 - just wanted to wish you luck with your appt tomorrow with new paed to discuss ng tube. Hope you get some answers and more of the support you are looking for. I'd be keen to hear how you go too, so please pop in and post an update.
smelly

kiwibird27

16-01-2008, 21:09

LivinOnAPrayer

16-01-2008, 22:04

thanks smelly, i'll definatly let you know... i hope its all happy answers!