Oral aversion and peg feeding

So much is going on at the moment and my mind is going off in a million different directions all at once.

Has anyones child had a peg inserted at a latter stage of live?

My daughter is 16 this month and her oral aversions are getting more and more frequent, usually caused by infections but this time it has no cause so I (and our GP) am thinking it is becoming a behavoural issue rather then just a 'I feel like crap and don't want to eat" issue.

She has not gained weight over all in about 2 years, and every time she gains some she gets sick and losses it again. I can't win with her and it is really stressing me. The doctors don't seam to want to do anything for a long term solution. Every time we go into the hospital they seam to get her eating again and send us on our way but never look at long term solutions to prevent it happening again.

I am getting so frustrated by it and don't know what to do about it. Do i keep persisting and risk looking like I am a hyperchondriac parent (and risk them completely ignoring my concerns by that stage or she will be in adult services and nothing will happen) or do I wait until she is so thin her body starts shutting down for them to listen and do something???

I don't know any more.

That does sounds frustrating to watch your child go through that! Have you got a second opinion? From somewhere else or another hospital? It is your right as her parent to seek a second opinion and see what they say. I would trust your instincts and ask for a referral for a second opinion.

We have spent the last week in hospital and we have seen multiple pediatricians, dieticians and psychologists, the ED doctors and the first dietician we saw mentioned possibly getting starting with a NG tube and then getting a peg down the track (which I feel is the best permanent solution), but they keep saying we have to go through our pediatrician who doesn't even want to talk about it with me.
We went to our GP tonight after getting discharged this morning, he doesn't want to talk about it until he gets the discharge paperwork (they are sending it out) but he does agree with my theory of it being behavoural as apposed to what the pediatrician thinks - reflux (but I am open to any suggestions and open to try anything that may help, it just needs to happen now, she cant afford to loss weight) It may be something rare or it my simply be the autism in her.

I just don't know, and i don't know how long I can keep doing it, I don't ask for there help very often but now I am reaching out for medical support and they don't seam to want to do anything about it.

SJL just wanted to send you some love and support :hug: Hope someone can find the problem and help your DD be more comfortable.
:comfort:

Finally getting somewhere.

We saw the doc on Tuesday afternoon. The most important thing to come from the appointment is she has started to gain weight so the polyjoule and soy formula powders are doing there jobs when we get them into her. She is eating at least 2 full meals a day which is also good.

Her therapists at school recommended getting a peg at least to supplement her during illness and summer (she wont eat/drink when it is too hot) and for medication (which will hopefully reduce the time she is ill)

We finally discussed a peg with the peadiatrician and he said it may be the answer given the low weight gain over a long period of time but doesn't want to do it just yet. We are waiting to see a dietician again at the end of the month. We will then see him again latter in the year (unless she stops eating again in the mean time) if her weight is still as low as it is now then we will schedule the surgery.

So for now I am going to get busy sewing body suits and pj that she wont be able to get hold of the peg because she will try to rip it out until she gets used to it and I am expecting the surgery to happen even if the doctor is still unsure.


We shall see what the following months bring us.

My daughter developed a problem with eating after she was eating great 3 meals a day but still no weight gain for 4 months and ending up so far under the charts it wasn't funny.

Anyway, we went on the homeward HENS program, and gave polyjoule and calogen orally with her food in the effort to avoid nasal gastric tubes. I got better weight gains on calogen by far (and i still have a tin of polyjoule if you want it??). We also gave milk with paediasure which also helped.

I found having to force feed her and then her food issues really hard to deal with, i found meal times so stressful, but we had a nanny for a while, and she did all the feedings and made it really fun for DD, and that helped a lot and now she is back to eating nicely.

We had the support of a great paediatrician, paediatric dietician and gastro-enterologist also... but it was a very stressful time.

I know somebody else whose daughter had huge issues with weight gain, and she ended up insisting on the peg and her DD kept pulling out the NGT - she said it was a lot easier. She also said she felt like there was something wrong, everyone else thought it was behavioural, but she insisted on a barium swallow and it turns out the reflux had burnt a whole in her oesophegaus, which was the reason behind her behaviour with food.

Anyway, if you want any recommendations etc or support feel free to PM me.

Hi Yeal,
The dietician we saw as an inpatient has given me polyjoule and also a soy formula to use in everything my daughter eats and drinks. Due to her allergies we have been restricted as to the formula additives we can use, which I think has a lot to do with the early consideration of a peg, I know she will pull out a NG tube so I would prefer to avoid that step but if needed I have strategies which should work to keep it in on a short term basis.

When we go back to see the dietician we are supposed to be going on the HENS program (the initial supplement I was supposed to get is $13.50 with out that program) and possibly looking at other additives to help depending on weight gain.

hey SJL just wondering how everything is going now? Have you gotten any answers as to the peg or not?

Feeding issues are so frustrating! :wall:

Update:
We have seen the pediatrician and he has given me information to read and go back to him with questions. He isn't too keen to put a peg in yet but at least he has had the discussion with us and he is open to considering it if we cant find another solution. We see him again 18th August with my list of questions and list of pros/cons I have written up, as well as feedback from her therapy/school team.

We will be seeing the dietician next week, who will weigh her again to see if there is anymore weight gain.

The plan at this stage is to see if she continues gaining weight (which I doubt will happen) and then book in for surgery at the end of the year if we cant get a solution.

The biggest issue is she is still getting throat infections every two weeks and not eating for 2-3 days (which means she losses the weight she has gained in the last fortnight). The more we force the issue of eating/drinking the more she refuses to eat/drink.

I will give an update again after we see the pediatrician.

We saw the peadiatrician yesterday and we are going ahead with the peg. He had seamed very against it the last few times I spoke to him but yesterday I walked in he checked her over I said I want the peg and he said yes with out even having to explain my reasons.

So even though we have to wait for the surgery now I am happy we have gotten the all clear to go ahead with it and I can see a solution to the continual medical issues and not eating.

Sjl