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

Oh poor you! I had no idea it was expensive - I thought it was a common adult prescription? Have you phoned the consultant to discuss this?

My children's reflux had improved by this age, but the food aversion is common in reflux babies. Any advice I've heard through friends is to have high calorie food lying around for him to graze on. Coconutty food is well tolerated by most and v high calorie.

Have you considered food intolerance? My DCs reflux was triggered by intolerances to dairy, soy, wheat, egg nuts between them. There is no way to diagnose this except through trial and error (with a dietician if possible).

If he is losing weight that would surely suggest the medicine isn't working so he needs an alternative anyway?

That is terrible!! Are you in the UK? Speak to consultant directly, PALS at the hospital, practice manager at gps. Be FIRM.

only just learning about reflux as my ds has just been diagnosed but my first instincts would be to change your gp. re the prescription, can you not take it direct to a pharmacy? if not, could you go back to the outpatient pharmacy and see if they can order it in for you?

Gp suggested that we changed his milk to ysoy cow and gate when he was 2mnthd old ( before he had meningitis) and he didn't respond well to that either. Ds consultant has said she will right a letter to gp and what not but that means weeks with out his meds. He is such a nightmare to feed because of the pain association. I wanted to suggest the ph probe test but it's a nasty test to put him through...

Tomorrow is moment of truth kinda thing. Im ringing through to the consultant and then i will most likely go and see the stupid gp. He's been brilliant upto this.
He saved ds life after prescribing him antibiotics so quickly when he had meningitis.

These days if I take ds up he won't examine him at all. We've been back wards and forwards so many times ds is scared of him.
Ds keeps getting uper tract infections ( chest, ears and throat) because of crap coming up and sitting there.

I'm sure they say it gets easier... :(
I wonder when.

Firm... I want to bite his head off!!!

He says his hands are tied due to pct being so strict on ££££.

His consultant said it's good he tried cheaper option ( mups tabs) but if he can't tolerate it then he needs the suspension. She said we all pay tax for the nhs so it's a right that your ds has...

Yep in the uk. Ds consultant is at the children's hosp in Manchester.

When he was born he weighed close to 9lbs.
And now he's under 9kg...
I know all kids are different but my mates kid is 8 months and he is in 2-3 yr old clothes. I seriously asked her what do you feed him. She said he just eats everything. There's the difference, ds doesn't eat much.

No no no no NO!

They can prescribe your son lansoprazole fastabs, which are properly dispersible in fruit juice and are not expensive to prescribe - has he been having the omeprazole solution??

They can't just stop his medication, that's barbaric! Also, suddenly stopping omeprazole-type medications is not recommended practice at all, it can cause rebound acidosis (e.g., increased stomach acid production) which is going to make things worse.

Your son could well have a milk-soy-protein allergy and should be trialed in my humble (non-medically trained) opinion on a cow's milk free diet and hydrolysed formula.

I am extremely for you, let us know what happens.

Thank you

I've calmed down lol
We went to gps today, he wasn't happy about prescribing but he knew he had to.

My ds has finally got his meds... Well we've handed the prescription in, Its special order med so we should hopefully get it tomorrow. I'm going to give him a fortnight if no improvements then there's a specialist up at Sheffield children's hosp who has said he wants to have a look at ds. But that requires referrals and doc is very hmm about that. I have told gp if no improvement then i want the referral to be made. It's over an hours drive but still worth it...

I hope that the new meds work for you. It took us a week of torture before they finally kicked in. FIngers crossed.

Thank you.
So far no luck :(

We went around the park with his dinner yesterday and we tried him in his pram but nope no luck he didn't eat anything. He's eating very close to nothing. Hv saying theres something else bothering him, see gp. Gp is sick and tired of seeing ds. There's a doc up at Sheffield hosp who wants to see him, going to ask for a referral today. Get ds sorted out once and forall hopefully. 16months of fighting takes it out of you!

good grief, you must get a referral. It sounds horrendous.

If an adult wasn't eating in the same way th at your baby isn't eating, they wouldn't just grumble and do nothing! Is there another GP you can see?

PS sorry to harp on but has he been trialled on a dairy-free diet (e.g., special formula like pepti or nutramigen?) If not he really, really should be - especially with other atopic symptoms like eczema and asthma.

And one last thing..... Omeprazole etc have to be given on a completely empty stomach and you have to leave 30 minutes at least before feeding. This is probably not an issue if your DS isn't eating/ drinking well but I thought it was worth mentioning.

We are planning to do the dairy free diet in April ( after his next appointment with one of his consultants)

I've got a telephone appointment today with gp as I couldn't get down to see him ( don't drive, the drivers in the family are assholes and bitch about taking us anywhere! And they have just gone up with my niece!!! Live at with parents; partner in different country... Due to visa law... )
I'm going to tell him I don't care what he thinks or says ds needs to see the gastric specialist up at Sheffield. I've got in contact with this specialist and ge is happy to see ds as a matter of urgency, he does emergency clinic plus a clinic every thursday. That means going on the train as no one is willing to take me. I'm not bothered about going like that it's just that when someone is with you it's support. But nope it's always like that...
Sorry just needed to get that out.

Since he's been awake he's had
2spoonfuls of mixed cereals and 2oz milk.

There's a time he could tolerate 2 full pieces of toast cut up into 4!

Arghhh dinner time and I'm dreading it :(

I do agree with Narmada. You really do need to get them to see your DS very soon.
Couldn't you skip the GP, and just take him to A&E.
It's such a worry.
Hope he is feeling better soon.

Why are you waiting until April for no dairy?

Also I'd write to your local mp and complain.

Can you try not having set meal times sometimes and have bowls of food lying about by his toys etc to try? See if he'll take any snacks etc when he's playing.

I've tried set meal times and that's no good. I've learnt to work with him rather than against him lol. He has an afternoon nap and if he's too tired to eat I'd rather let him
Sleep a little then eat but that doesn't work either. He's getting little bits here and there. Getting him weighed tomorrow and if he's lost more then I'm
Just going to take him straight to a+e.

To top it all off he chucked his fav toy that he sleeps with out of the pram while in primark. Can't get it from anywhere!!! :(

No sleep for me tonight lol

It was a 14" dumbo with the Disney scent on it. It was part of the sale and now sold out he's got a different elephant but he knows it's not the same. He keeps eyeing it up and then looking at my like he's trying say I'm
Not daft this isn't it lol

I was just wondering Faz, have the docs tried Ranitine with him?

Yep they tried that.

I just one ds to be happy with food :( going to take a looong time.

I'm going to ask for ph probe so they realise how much he is suffering

Sorry I meant no set meals times.

Good luck with a&e - my ds was 9lb at birth, he had silent reflux but we sorted it at 3-4 months. I'm disgusted at your GP :(

I just don't know how he can do this. I'm going to request that I speak to pct. You know when there's something wrong with your child and the doctors don't listen it does piss you off. I think the only reason I've not changed doctor is because this doc saved ds life when he had meningitis.

I got told yesterday that private isn't worth it because once you actually get to the specialists they give it 100% they are supposed to be brilliant.

Hi, I have a ds with silent relux. I live in new zealand where it is diagnosed more readily and treated. My ds has been on adult dose losec (omeprazole) since 6 weeks old. We break open the capsules and give it on pear puree. The granules are coated and will pass through the stomach as long as not given with food. The suspension is not recommended as it is poorly effective and the special formula made for infants is extremely expensive. The use of adult capsules is well documented. Ds has an aversion to milk ( not allergy ) as he associates it with early reflux symptoms, and used to scream whilst breastfeeding. He is on the 9th centile for growth. We feed him solids every 3 hours in small portions. I really sympathise and hope that you have success with the hospital consultant. Go to This website for support and stories of other mums struggles....... Www.cryingoverspiltmilk.co.nz. It also has an information sheet about the use of omeprazole for professionals.
You are not alone and until someone has experienced living with a baby with silent reflux, the worry and distress it causes for baby and mum they cannot understand and this includes the medical profession of which I am one. Good luck