Help. 16mnth ds with severe reflux... Not very nice gp too

[fazsaeed]

my ds is 16 months and has been on different meds since 2 months of age. He has been hospitalised once and has stopped breathing 3times.
Doc has stopped his omeperzole due to COST and he is losing weight. Because of pain association he won't eat nothing of a spoon and very rarely let's me feed him. He picks at food from his tray and chucks the rest on the floor. He suffers from silent reflux and has had the barium swallow to prove it too.
Changed his bottle which I have trouble giving him (2x day) we go in the pram, car, tv on, toys out. You name we've done.

He is losing weight. I wanted to change his car sear but because he's not hit the 9kg Mark I've been told no to so he's still in 1st.

Anybody with this type of sitiuation?
I'm open to different ideas

P.s
Doc... We are seeing him on Monday to discuss his meds. He won't give omep even though his specialist at the hospital prescribed; it's special order product and they didn't have it at outpatients pharmacy so was told to take the script to docs so he could give. He got his assistant to ring and say I've already told you that he can't have it. My baby also suffers from eczema and ashtma.

Thanks

He may have saved his life but he's not helping now. I would change GP tbh.

I wonder if the specialist speech and language therapist for sucking and swallowing needs to be involved. They are good at sorting out aversion to food that some children develop through reflux. If it gives you any hope, my friend's ds was similar and is now a strapping 4 year old who eats all sorts. Good luck.

We've got speech therapist involved.

Ds won't take nothing from a spoon so giving him any med on a spoon is a no no.
He won't take no runny foods either due to pain association.

Got a letter from
The dr today to say
I'm taking ds to hosp too much!!!
He's been 7 times including the times he's sent me and hv.
I rang up and told them
That i only take him to a&e because you won't do anything about him.
9/10 he's at docs and hosp is coZ of reflux. If you would of sorted him out when we first found out about his reflux we wouldn't be in thus situation.

Now they know.
Dr even said ds might need to operated on. This was about a year ago so if he thought ds was that bad surely he should of sorted him out??

He's getting weighed later on so if he's lost more weight I know hv will advise a&e.

He's lost weight again..
Ive been told to ring through to consultant and to tell gp too.

Sounds dire :(

What happened to convince the consultant that an operation wasn't needed??

I would really, really consider seeing another GP or even changing practice if need be.

I forgot to

I forgot to mention earlier that ds2 was prescribed lansoprazole once the gp realised the cost of liquid omeprazole. I agreed we'd give it a go and it actually worked better. Don't know if you've tried it yet but might be worth a try if not. I can't believe your gp. Mine was pretty much the only thing that kept us going through it all with two refluxers. I bought him wine at Christmas! Ask the health visitor if she knows a local gp who is sympathetic to reflux problems. Having that support can make all the difference.

Surgery was the gps idea. If it's pct then I'm sure I'd have this problem every where wouldn't I? I made an enquiry yesterday and the receptionist told me it just depends on circumstances... That put me off.

I've got in touch with consultants P.a and left a message about him still losing weight and not eating much. Let's see what she does now.

On a good note primark rang me and said ds teddy has been handed in. But I've ordered a new 1 too lol. I'm going to give his old 1 a wash. If it comes out ok then that's fine I will return new one If it fucks up then new one it Is.

Any tips on washing teddys? Lol

Ds not sleeping well atm I've got bags under my eyes, pretty sure ds has too. Gp yesterday said he is trying to help me but because ds has got a consultant everything has to be ran past her, and she's not picking the phone up.

He said going private would help...

Your GP is being a complete w. Fancy implying you should go private. HOnestly. He needs to get on the phone and DO SOMETHING! sorry, so cross on your behalf.

It seems odd that your GP suggested fundoplication (the only surgery for reflux that I know of) It's a fairly major operation usually only undertaken when things are dire. How could he possibly know that's needed if your child hasn't even had a PH probe, a proper trial of Omeprazole at an appropriately high dose, or a milk exclusion diet?? Honestly, he sounds like a one, I would think about getting another GP.

Is your child under the consultant for something other than reflux, or for the reflux itself>

So pleased you found the teddy. I know the heartache a lost comforter can cause, oh yes!

He still won't sleep through the night though!!
I'm sooo tired!!!
I have to fight with him during the day and fight with him at night too.

He had an infection a few months ago so he was initially under for that but then I requested to see someone for the reflux ( at that time his blood levels weren't right, it was an sho)

I think he is struggling with the pct. They are right bastards.
I might ring nhs direct and ask them what to do he's ate fuck all today.