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Please help. Someone? Anyone? Long thread alert

85 replies

fazsaeed · 09/03/2012 19:38

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?

OP posts:
Laurale31 · 24/03/2012 13:09

He's not been referred to gastric paed yet, got appt with paed in a few weeks so will see if hel refer us, I will tell them about the way hes up and down , x

fazsaeed · 24/03/2012 13:56

Not all pads understand how reflux effects kids. Be pushy :)
X

OP posts:
Laurale31 · 25/03/2012 20:30

Yes I'm going to have to b pushy , x

fazsaeed · 27/03/2012 09:05

How's your ds
X

OP posts:
Laurale31 · 27/03/2012 21:58

He's still eating, hoping it lasts, I have never seen him happy to eat like this! He is eating finger food for first time, and not been sick for about 5 days, Had speech and Lang lady here today, she has no concerns about his swallowing, and explained about how reflux can come and go, have good weeks and bad weeks, hows things with your ds? X

fazsaeed · 29/03/2012 08:16

We went Blackpool beach on Sunday and everything down hill since then :(
He stopped taking food like I've been giving him.
He's got chest ear and throat infection.
I'm scared...
Am I doing the right thing for him?
:(

OP posts:
Laurale31 · 29/03/2012 20:58

Aw it's always worse when they are ill, I'd he still taking his milk? My ds only drank his milk for 2 wks and no solids whilst he had an ear infection, I was worried sick though, felt like I was losing it, hope he's better soon xx

fazsaeed · 29/03/2012 23:36

Yep defo worse when they ill.
I just want to get the tube in and over and done with.
He's lost weight again :(
How's your ds?
X

OP posts:
Laurale31 · 30/03/2012 09:22

He had lost weight as well when he was ill, but has gained 3oz this week, they just never seem to get a chance to catch up, we had tried him on cows milk again a few weeks ago as dietician had recommended, but he went right downhill as he always does when we try, so hes back onto soya again and definite improvement, I know people had suggested much earlier in this thread that u try dairy free with him? Could u even try and switch his milk and see if he improves?I wouldn't like to think where we'd be If we hadn't been switched onto soya and hypo allergenic milk , it's only the last few months that I have agreed he definitely needs it, he was started on the milk and reflux meds at same time so we never knew what had actually made the difference. But now all the messing about lately has shown us , x

fazsaeed · 30/03/2012 12:50

The endoscopy they did showed that there was no inflammation which meant there's no allergy. That's what the consultant said.
Hopefully we will get somewhere soon
X

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