Please help. Someone? Anyone? Long thread alert

[fazsaeed]

Hi everyone, I'm new to this. My son (ds) is 18 months. He suffers from severe reflux since birth.

Ds was kept in hospital for a week "under observation" to watch his food intake. He was having less than 500 cals a day and needs 900 at his age.
He is less than 20lbs and has been this weight since October.They only change they've made is to his milk. It's a high calorie milk 300 in 7oz. Pain to give him. Have to water it down but it's stopping him from losing weight when he doesn't eat. He has round about 1/2-3/4 meal a day. When we came back from hospital it was like he missed food and ate well but now it's going down again.the other day He ate a bit of coco pops in the morning, few strands of plain boiled spaghetti and a few bites of chicken. For tea the kids had mc Donalds but he just chucked most of it on the floor. He ate lil bits of kfc chicken last week so I went out and tried him with that. He would bite it and spit it out. I'm trying to giving him dinner in the morning as he tolerates food better then and breakfast at dinner. Few bites of toast in morning. Few bites of home made pizza, refused chicken and mash and few bites of bread.
Been such a pain to feed. Today he's been in a lot of pain.

If he did this once a week i wouldn't be too bothered but it's once a week he eats over a meal in the day. It's a long term problem that I can't see the end off. Before he was getting worse I wanted a few more kids but now no way. Not until he's 'better' and I'm just so scared that the next will be like him. The stress of your child constantly not eating, losing intrest in food is horrific. He knows it hurts to eat so he's happy hungry. He has loads of energy so what he eats he burns off quick.

Advice/support? Some one who understands?

wow - it sounds as if you are having a really hard time. My twins had really bad reflux and vomiting. It is exhausting. Does he have any other issues or symptoms? Has he ever had his swallow checked? (a specialist Speech and Language Therapist can assess his eating and swallowing) Does he have any problems with muscle tone? What is the rest of his development like?

I really wish you well.

I'm so sorry about this - my brother (and Aparently my dad) suffered from this - so although I can't offer much practical help I just wanted to say he will grow out of it from my families experience, and I'm sure thrive. I know my Mum had loads of trouble with my brother when he was little but he is a strapping 6ft forty something now who could do with loosing a bit of weight, if anything.

Do you get any help from dietitian or similar? I know my brother had trouble with things like lettuce, but not bread etc. It might be that he has a problem with meat - it is OK not to eat it if he had a problem - my DD is 13 and has never eaten it - above average hight and weight fine - I'm not anti meat but I've personally always had trouble eating it and now haven't for 20 odd years - some people have trouble with dairy.

My point is everyone is different - of you have not already had help from a dietitian ask your GP - if you have had help then, IMHO, you need to go back again.

But try not to worry - you would never know my DB had the problem as a child and my Mum did manage with the two of us (so don't give up on other kids)

Sending some hugs (if you don't mind) as you sound like you need some.

Thank you.
Yep we have dietician involved and a gastric peaditrician and speech and language.
He's been bad all night, didn't eat much yesterday so he woke for a bottle which i offered and he was just violently sick. He had ph Probe done to test how much acid comes back and when but that test should of been fine as he had his meds in the morning. It did show he's still refluxing with a lot of meds! I thought they would of done something about as they know the extent of the prob. Ds is happy with no food in him and because he's not eating he's realising that food hurts and getting used to being hungry. Monday I'm going to ring the gastric team
He can't go on like this.
He doesn't like a lot of things due to pain association. He likes garlic bread and coco pops and noodles but he won't eat these all the time.
I don't mind hugs. Could do with them right now thanks

I have no experience of your ds's problems but I am up in the middle of the night with my ds's completely different ones. So yes lots of hugs you certainly need them. Hope you can get through the weekend and get a lot more medical help next week. Do you have any support for you in real life?

Sounds like you are having such a hard time, poor you and poor ds :(.

My own DS goes through stages of not eating very much and we have had dietician help due to weight loss (which for us was about as good as useless) so I do understand how you feel.

Does he drink well? When my own DS wasnt eating we found that all we could get down him was smoothie drinks and yoghurt drinks. Would this be a possibility?

Nohaudinmawhest
Im single mum as my partner atm is in a different country and has been for over a year... He's applied to come back again do fingers crossed.
I live with my family who are pretty much useless apart from my dad and sil but she goes to her own place in the evening with her dcs. They help during the day If and when they can. Mum and other bros and Sis are useless.
Dad came into my room to see ds last night as he had pain and was sick.
Dad and ds have a very strong bond. I'm daddys lil girl so my child is special to him :) extra special lol.

Voidka he does drink ok sometimes but nooo smoothies or yoghurt drinks. Ive tried them and failed :(

When your child is Ill you just feel so useless.
This is going to be a very long weekend as he's getting a cold too!
X

Hope you get help soon from your team. I work with sn children - many of whom have reflux. There are medications which can be given before eating to help coat his throat to help with reflux pain, also meds which lower the acidity of the stomach contents to stop the burning feeling and others which encourage the stomach to empty quickly. Getting the right medication can make such a difference, but unfortunately often families do have to really push to get help their for lo :( .
In almost all cases (as other postors have said), it seems to improve as lo get older, but in severe cases some children do require a small operation on the opening from their stomach to stop them being so sick - this op has been life-changing for the most severely affected children I have known!
If he will drink, there are specialist high calorie drinks that are like fruit juice of your lo really doesn't like the milkshake type drinks - your dietician should be able to help you in that area. I hope things improve quickly!

Minimoan

Meds are not really working. He's on higher dose than he should be on and when they did ph probe it showed he was refluxing- while on meds.
He is on the high cal drinks. He's on 2 bottles of fortini a day- 300 cals in one.
He doesn't take a full one.
We've tried other meds and this lot that he's on now are the best so far but still not controlling the reflux.
He had about 1/4 bowl of coco pops and I mixed some choc yoghurt in it so he couldnt taste the yoghurt but still get some cals out of it.

He is now in his high chair.
He won't let anyone feed him at times. This is one of them
Times!
He prefers to self feed and I keep an eye on him, don't fuss about in front if him.
He's taken few small bites.
:(

Wow faz its really scary when your child can't eat/won't eat.

I know he has a medical condition, but I'm guessing there's also a psychological / control issue with food going on. I'm not having a go at you, I just remember how unbelievably tense I was when my child couldn't/wouldn't eat.

The Gill Rapley book baby lead weaning is helpful.

I'm not a parent but a SEN nanny and my eldest (B4) has reflux. It was much worse when he was younger but he still does not eat solid food. We still have to give him purees but it does seem to have helped food wise and he is sick now every other day- which is an improvement on every meal.

When he doesn't eat I just take him out of the high chair. If he has had anything I praise him.
While hes eating I dont disturb him. I don't go in front of him I sit behind him so he can't actually see that I'm worried about how much he's had.
I've learnt that whether or not I l say anything to him when he's in the high chair it doesn't make a difference. I encourage him at the start of a meal time ( when i put food down) then leave him to it.

My DD had the most terrible reflux, she also had an oral phobia. We considered doing a Nissen fundoplication but I worried if that would exacerbate problems. Worried for nothing in reality! Anyway my DD was tube fed (Micky button), and I started giving her an overnight bolus pump feed of Nutrini Energy Multifibre www.nutricia.co.uk/products/view/paediatric/nutrini_energy_multi_fibre while I concentrated on introducing foods to her during the day. She didn't like sloppy food as she needed to control it with her tongue etc. she also liked strong flavours like Marmite, BBQ crisps and ketchup. It took us a long time, but with the help of meds we got it under control. She had been on ranitidine and domperidone which did nothing. We then switched her to Omeprazole Mups which keeps her reflux at bay. She is now 12, still has reflux (at night now), but eats everything. Btw the domperidone is a motility drug, and is what I blame for her small stature as she had been on it for a year and didn't put on any weight.

I've stopped giving him domperidone as it does f.a.
The consultant said they were going to put feeding tube in him to help with feeding and nutrition.

He needs help on most days. 6/7 days he needs help to eat. On his good day he will have a bit of breakfast and a bit of another meal plus good with bottle.
He has about 10oz a day of milk ( fortini watered down).
On a bad day he will have very little breakfast refuse dinner and a bit of tea. No more than 7oz of milk ( again watered down so 5oz fortini and 2 water)

We took him to the park and he's had s very long run around. He's had 1/3 small hotdog and few strands of noodles.
I just feel like crying when i know he's in pain..

I just can't believe drs are happy with him eating so little.

It could be worth taking him to a McTimoney Chiropractor. They do wonders with kids with difficulties. My DS3 hardly slept and was in pain. We discovered that his pelvis and 3 vertebrae were out of whack. It's made a massive difference to him. No more pain. The lady we see also helps reflux sufferers too.

Hmm thanks I will look into that
Thank you

Heelloooo anyone there?
[stares into empty thread]

What's up?

Just seeing if any one still here.
Had to feed him through syringe today :(

You might be worth having a gastrostomy and taking the pressure off by just feeding him little bits when he demands it. Probably worth seeing a gastro specialist, if you haven't already. Are you near any good hospitals that specialise in Paeds?

Hi, my ds is 14months and has terrible reflux too, he eats very little and is tiny, 17lbs, it's horrible, he cries when I put him in the high hair and will have a few spoonfulls but I know he associates food with pain, his reflux seems to be worsening as he is getting older and meds not making much difference, just been referred to speech and language to assess swallowing, I also think its terrible that docs think it's ok for our kids to go on like this , I am sending huge hugs to u xx

Sally we are seeing dr mike Thomson at Sheffield children's hosp.
It takes us over 2 hours getting there sometimes.
I'm going to ring through to his sec tomorrow and let then know.

Laura
You need to see gastric pead.
Dietician and speech and language therapist.
Ask for ph probe to be done.
Blood tests to test nutrition levels.
If you can get ask gp to refer you up to who ds is seeing.
He's really good google his name.
It's the starting point.
And yes!!!! I know they are happy for our babies to ear minimal everyday.
Get fortini/ high energy high cal drink in his diet and if he doesn't eat blend his food and give with syringe, same with milk.
Let me know how it goes. We are in exactly the same position. Really feel for you
Hugs
X

We're in Scotland but will see who we can be referred to here, I have alot of patience but I think now I'm gonna have to make a fuss to have something done, Thankyou for advice, iv never spoke to anyone who's In same position, or understands,
I also have a 4 yr old dd who had no problems so u never get 2 the same ! We have tried cranial osteopath and had no
Luck ,
Is ur ds dairy free? That helped ds reflux alot when he went onto neocate, x

• We are seeing dietician and paediatrician but getting nowhere with them!

You need to stress at them. I've been told that I'm a bitch with his gastric team. As it's so far my parents come with me. I'm very firm in what I say.
It's disgusting it really is. My ds was in hosp a week because of it and nurse said his eating is not ok and I'm not feeding him!!!
He was crying while eating and speech language therapists said when he starts crying take him out of the high chair when I told nurse that she thought I didn't want him to eat!
I'm trying a different routine now. You can't really have a routine with our kids.
If he's in pain he won't eat
If he's not he will be scare to eat.
I'm waking up at 5am (ish) and sleeping late so if ds wakes at 5.30 we go down at 6. Get breakfast sorted then bottle at about 9 and that takes over an hour then morning nap.....
It just drives you mad. The worry. I want them to either do g tube feeding or corrective surgery. There is no way I want him to just have increased dose of meds.
What meds are you using?

Dairy free- we were told if he had intolerance it would if should on the biopsy results and thankfully they are fine x

Ds has been hovering at this weight for 5 months...