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?

Dd has a rubbish swallow and struggled to eat enough to gain weight. My friends DS had a fundoplication and not a gastrostomy and the fundoplication resolved his reflux issues so much so that he eats enough to gain weight now. I hope you can get seen again soon, it's very stressful.

It really is stressful. I just want him to enjoy food.
Thanks x
Had a crap night with him last night.
Good morning to everyone x

How has everyone's day been?
X

?

Hi not been on for a few days, had a horrible few days where he wouldn't eat and when he did he would vomit! Stressed to the max, took him to the docs today as I dont know what else to do and he has an ear infection in both ears and thrush in his mouth, poor wee thing, hoping he will improve quickly with antibiotics etc, how r u?

Sickness should pass once antibiotics kick in properly.
It does get worse when they aren't well
x

Hope you had a better day
X

He's still not eating anything at all, I got a few spoonfulls in last night and he vomited all back up, hopefully see a difference today, his tongue is still all white with thrush so surely when that clears up hel eat, just trying to give him milk regularly , how's things at ur end? X

Won't eat by himself. He will swallow the food I'm giving by syringe. That's as good as it's going to get i suppose for us here.
X

That's good he's keeping down the food your syringing, when I give him food in this way he makes himself sick, x

I think ds thinks that it's his meds so it won't hurt.
Obv he refuses it when he's got pain. 3 times day.
X

Finally
He's taken me seriously and we now have an emergency appointment for Thursday morning
X

Great, fingers crossed for u xx

Thank you
How are things for you x

Not much different than a few days ago, he's drinking milk but totally refusing food, about to try some porridge.. I am actually stressing out about feeding him, he's bound to sense it from me but it's so hard when u know it hurts him and I feel all I do is force him to take medicine and food he must hate me! Hoping as his oral thrush dissapears hel go back to eating a little x

It happens. The best you can do is what your doing.
I think your doing brilliantly.
It's hard looking after a child with reflux.
Don't force feed just encourage.
Put him in the pram and try giving him food out at your local park.
Different environment x

Good idea, Thankyou, it isn't easy but helps to know there are others out there too, x

:)
I'm worries about going back on thursday. The hosp itself is very Ill equipped.
Our tv didn't work
No microwave in the parents room and a tiny fridge.
They charged for hot water or had to use a manly kettle
X

They not keeping him today. He's going in on 12th for peg.
X
Hope your days (and nights) are better
X

Is that tube feeding? Glad docs are taking y seriously, my ds has eaten today for the first time in over a week and hasn't been sick, what a relief! X

Yep tube.
My parents kicking off saying no.....
I'm saying yes and so is my dh
It's yes so they just have to deal with it!
X
Thats good I'm really happy for you x

You have to do what you feel is right, u and your husband will just know what has to be done, your parents are maybe hanging on to the hope That things will get better, but you know all the ins and outs of what's wrong with him and doctors wouldn't agree unless they thought it was necessary, at least u know he will gain some weight and his vitamin levels etc will be fine, it will be a weight off your shoulders, xx

I'm happy they doing something but also scared
he falls a lot, gets infected quickly and gets ill quick too.
We saw the local paed today and she said that it's disgusting that these services weren't available to me locally.
How are you and dc? X

We're ok, ds eating good like he's making up for lost time! He does go up and down all the time do I doubt it'll last very long, he has speech and Language swallowing assessment on tues, he always seems to b on best behaviour for these appts then once it's over goes right back down, my ds is also always ill and falls alot, I think it's because his head is so heavy compared to the rest of his wee bony body he's so wobbly! Hope ur ok your head must be spinning with all that's going on, xx

I'm surviving.
That's what kids do!
Are you seeing gastric paed?
They help loads.
Make sure you tell them he's had bad fee week so he's having a good few days then back to that pattern x