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REFLUX! FUNDO - any way of avoiding it........

(11 Posts)
feelingbetter Thu 04-Jun-09 21:08:52

......in a jerky/myoclonic spasmy child?

Is there any point in avoiding it?

DS has always had reflux. Mostly it has not been a problem, bar a few episodes which were happily kept in check with Gaviscon.

Now he is bigger and moving more than ever before - it has become a big problem.
Tests now starting to see if his apparently constant chest infection/pneumonia is due to reflux aspiration. We are fairly certain it is sad.

Gaviscon no longer works, and I have my doubts that Ranitidine is doing anything other than prove DS hates peppermint! He has had omeprazole whilst on steroid treatment, but I think that caused more problems than it was worth.

We have asked for a ph test and he is also getting a barium swallow test in case its feeding that is suddenly causing a problem.

Is there anything else we can do for DS, before accepting surgery? I'm not against it, just want to ensure we've tried all avenues before putting him through it.
Ta x

Woooozle100 Thu 04-Jun-09 22:04:52

we haven't had it

have found sleeping on a tilt helps.

we thicken feeds with carobel (she has her enteral feeds thickened also). This helps keep it down

She has domperidone to help tighten her stomach - keeping contents in and ranitidine for heartburn. Use gaviscon as well if she seems uncomfortable. Check that you are giving correct maximum dose - can change quite quickly in young 'uns

Hope yr both ok

sarah293 Fri 05-Jun-09 13:47:13

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meltedmarsbars Fri 05-Jun-09 14:04:59

Dd2 has had ph study, barium videofluroscopy, then gastrostomy without fundoplication (sp?)because they reckoned she didn't need it. She is still sick frequently (eg two baths last night!) has ranitidine, now they think it might be lung collapses and sticky mucous causing the sick.

Have they tested what bacteria was in the pnemonia - can that tell them if its' food causing the lung infections?

feelingbetter Fri 05-Jun-09 20:32:03

Hello all,
DS is near to, but not at max dose of ranitidine, so we have a little bit in reserve. Paed reg refused to give domperidone (well, refused DP who took him to the appointment - I'll be on the phone next week to sort her out, bloody registrars!)

We already do a lot of tilting and propping up and use baby rice to thicken his food, tho he isn't eating solids well at the moment sad

He had a GA for MRI scan yesterday and they suctioned a bit of mucous for testing, and some saliva and snivvle too. Not sure what it'll tell us though.

I think I will try adding some gaviscon to his milk aswell. He has switched to Nutramigen 1 now due to lactose intolerance (they think!) and it is very watery (and smells of vegetables). Now that he has found his feet again, he has taken to bouncing and jumping, rather than just weightbearing with the odd marching session thrown in. Can't be helping things.
He is getting a standing frame from physio on the 16th bloody ugly thing - don't know where its going to go. But at least it'll stop him jumping and give my poor arms a rest!

Thanks for replying, I guess there's not much else we can do but wait for the tests.

Riven if you are reading this, things OK, bit more settled now DS out of hospital for a whole month now! He has learned to roll over and is using his hands well. Has had a few more seizures - mostly illness related, but still on Epilim and controlled quite well at the mo. Have had the dreaded MRI finally. Seeing neuro July 1st for results. Can't wait and feckin' terrified at the same time. Glad to hear things coming tegether a bit for you and DD. Hope she enjoys her new space and bath - FINALLY. Yay grin

Woooozle100 Fri 05-Jun-09 21:11:33

maybe ask about thickening the milk? That helped us loads. Twas always liquids dd struggled with. Carobel helps loads. I was pretty suprised that we still have to use it now its going straight through gastro but guess it keeps it down in the stomach. Proves it isn't all about cack swallowing

He sounds like he's coming on grand

Talking of bouncing - you don't fancy one of these do you? My mate reckoned it was great for her daughter (similar sn to mine) but alas my dd has never shown any ounce of bounce so not much good to us. Tis in good nick in the box if you want - just the postage costs

Its not small tho so maybe a bit much with standing frame as well

glitteryb6 Fri 05-Jun-09 21:24:53

latest idea on ds is that its a trigger in his brain making him sick as it only happens in spells, he's fine for weeks or even months then we get a spell of puking 2 or 3 times a day.

found this on the net so they may not be talking shit/clutching at straws?

"Vomiting is controlled by an area of the brain called the vomiting centre. The vomiting centre is responsible for causing feelings of sickness (nausea) and for the vomiting reflex. It is activated when it receives nerve messages from another area of the brain called the chemoreceptor trigger zone (CTZ) and when it receives nerve messages from the gut."

so next thing they want to try when we go back in 2 months is an anti-emetic (Ondansetron i think?) but we're back on Omeprazole for the moment

feelingbetter Fri 05-Jun-09 21:39:16

Pixie, thank you, but he already has one (see profile pics). Trouble is he's getting a bit too ......ahem......fat chubby for it now!
Will definitely ask about thickening his milk, this new stuff really is like water.

Glittery, does your DS feel OK with the omeprazole ? When my DS had it (to prevent stomach bleed when having steroids for IS) I felt quite sure it made him worse. Seemed to be getting cramps/trapped wind, even when the steroids were weaned. Could have been an after effect of them, or just coincidence, I suppose.

glitteryb6 Fri 05-Jun-09 21:59:33

he had it years ago and it made him worse, i felt he was quite unsettled with it and when it was dissolved the granules made him vomit which kinda defeated the purpose
doc did say it upsetted a lot of kids
this time its going straight down his tube, hes only been back on it 4 days and so far he hasnt been sick

sarah293 Sat 06-Jun-09 08:28:22

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meltedmarsbars Sat 06-Jun-09 10:58:29

We had the monkey frame too!! Kept stubbing my toes on it. We had a giraffe chair too.

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