"Reflux" and CP - Anyone got any advice?

[yomellamoHelly]

Just a quick question to see if anyone has experience of this.
Ds2 has no stopping mechanism and will eat until you take away the food or it's gone and never refuses anything. As a consequence he'll be sick after a meal if you move him too quickly.
He also sicks up when he's getting tired (usually not very much) and needs to change position / stop trying to do whatever it is.
It's more likely to happen as the day progresses and he gets more tired.
I would have said this was all a part of how CP works (he's very floppy). He's not in the slightest bit bothered by it and it has improved has his level of co-ordination / control has improved.
Following a case review yesterday the four (!) paediatricians and GP were united in insisting that he has reflux and needs medication to stop it.
I'm reluctant to give him medication if he doesn't need it and am happy to leave things as they are. My (limited) understanding from mn generally is that diagnosis of reflux involves a hospital stay and various tests to confirm / rule out its existance and that medication causes a huge change. I don't feel any drugs will change the situation. And if they do "work" it will disguise when his body is telling us when he's tired and needs a break (iyswim).

Has anyone got any experience they can add to this to change my mind / reinforce my doubts? (Ds2 is 2.1 btw.)

Hmmmm. Not CP (Well not yet anyway!) but DS is almost always sick after eating. I suspect he doesn't know when to stop either, especially since steroid treatment. Like your DS he was never bothered by it (still isn't) and when I say sick - it's usually a mouthful or 2, not his entire meal!

He did develop reflux for about 2 weeks just before his IS started and it was completely different. Wouldn't eat at all, screaming and arching with pain. He could vomit 4 or 5 times during a feed and I constantly smelt of sick. We were lucky in that Gaviscon worked for him - it is fairly inert stuff, so may be worth a try?

I think (from what I've read, here mostly) that low tone and sickness go together. And if he is eating past his capacity - its got to go somewhere!

I agree with you, if he hadn't have been so distressed I wouldn't have done anything. he is still sick now (overeating and tiredness) and it doesn't bother him at all and he hasn't had any Gaviscon for weeks and weeks now. In fact, quite the reverse, seems much more comfortable after it.

I think the PH test done in hosp is very quick and easy. I think rivens daughter had it, so she can tell you more.

No experience of this (my dd had CP and seems to exist on no food whatsoever.....) but am sure someone will have some thoughts based on their dcs. Good luck.

DS also has low tone & reflux. When he was smaller, he was on a large mix of meds to help with the pain from the reflux, but it didn't really ever control the vomiting. We've weaned him off all the meds recently, but found the best way of dealing with the reflux was to limit drinks and meals to small and often. For ds that meant drinks of 30ml at a time over the course of the day and night, and even now he only manages a 'large' drink of 120ml at a time (mostly much smaller than that.

He also doesn't have a 'hunger' feature! He doesn't request food, or cry because he's hungry, and equally he eats however much we give him! So we just cut down his meal size until he had less spitting up.

I think most of his therapists said it would get better when he was more upright. He just started to crawl (more like bunny hopping about!) last month, and he's still got the reflux, and does gag quite easily.

My ds also gets worse as the day goes on and he is more tired. The physio thought that as he gets tired, his tone gets lower, and that goes for the tone inside as well... so the stomach valve, etc... so the reflux comes back later in the day. ??? I really don't understand all the ins and outs of these things!

Sorry this is going on a bit, but my advice would be to use meds sparingly, and try to control it by other ways first. DS also has constipation which we are only now starting to get a firm handle on (he's been on laxatives since he was tiny!)... this has helped the reflux to no end! I always find it very hard to see the whole picture when there are so many things going on!! If I could do it all over again though, I would have been stronger with not accepting so much medication for it.

BTW, he did get meds before all the hospital tests for reflux (he went on to have a barium swallow & an upper endoscopy).

Thanks for your replies. I've been trawling the internet for information too. (Not that great a source tbh.) It seems to be linked to pain and discomfort, failure to thrive, anaemia and tooth decay. Obviously he's not concerned by it at all, he's actually just over the healthy BMI (so quite sturdy), his blood tests were all fine and his teeth are apparently in good nick (HV). Am wondering if I ought to just take 'scrip' and not give it to him or if I should be straight with them. Don't want to antagonise unnecessarily.

Came back on to respond coz I had a thought after posting about silent reflux have a looky here, where there may be no pain. That page also goes through the tests to diagnose too.
HTH x

My DD has CP and has reflux, she has two meds and we add gaviscon on occassion. She gets very upset by her reflux though. Before she got the PEG it was so severe I had to have her near a sink or basin when she was being fed. My life was really misserable, buy the time I had cleared and washed everything she was needing fed to spew again.

I have never had her tested, they have just gone by what I have said. She gets Ranitidine and Donperridon(sp) she was on Imiprasol but that gave her severe tummy pain.

Surely there is a better way to tell if you LO is tired of had enough food other than leaving him till he is sick? In away its probably like morning sickness you get used to it but doesnt mean you like it

However I have to say my dd would probably go all day without being fed.

i would ask them to do silent reflux tests (think they are ph tests etc) if he is not in any pain. if they don't come back as showing that stomach acid is being refluxed (ie there is so sign of habitual reflux but rahter the problem is literally that at 'full' the muscle at the top of the stomach gives way and it's hello dinner) then i would decline the reflux med but ask if there are meds that can help tighten the sphincter muscle - i vaguely recall there is something they can do but have no idea what it is... (that's not helpful is it lol)
they can also have a look to see if there is any scarring etc i think (which would prove reflux related)
not v scientific and a bit wishy washy - we went through the initial gaviscon thing but dd's problems were mostly fluctuating tone and a general inability to chew or swallow in the right order. the slightest miscalculation meant the whole lot went into spasm and regurged...
that said - we managed to teach dd2 not to vomit... i know that sounds weird, but it almost became habitual, and there were a few cues (a heave or two lol) at which point we could 'talk her down' and she gradually learnt to take control over the muscles and keep her dinner inside her... (only if during mealtimes etc lol - she is allowed to throw up if she's poorly ) - and no, no chest infections lol...

still rofl at 4 paeds btw. where on earth did you dig them all up from?

Thanks all. Have looked at the silent reflux link thanks FB. Still remain unconvinced this is an issue. MWitA some interesting points though that you raise. Don't especially want to volunteer ds2 for any more unnecessary tests. Feels like we've wasted too much time at the hospital jumping through various hoops for the paeds already. Will speak to dh tonight too.

the pH test is the one that can involve the hospital and madswoman is referring to a fundoplication which is an operation to tighten the top of the stomach.
although none of these would be done till they had tried the usual route of reflux drugs, gaviscon, omeprazole, ranitidine, domperidone. to be honest the minute you mention puking they will say its reflux as it is very common but in ds case its looking more like dystonic spasms.

I've had problems with the acid reflux also. My reflux has been lasting for at least a month. I went to the Dr. and he tested me for this virus (that I can't remeber the name of)it was negative. I was on aciphex for a while and prilosec. The prilosec was working, just not completely. I went back to the Dr. this past Friday and he put me on Protonix, which is not working as well as the prilosec. He told me to get a Barium swallow test done, which will be this coming Monday. I asked him what a Hiatal Hernia is, he told me, and I swear the symptoms that I have sound just like that. My chest is very painful and as well as my throat. I've been on a very bland diet and lost 25 pounds this past month. It all started about a week before Columbus day. I've been in pain ever since.
I found couple interesting tips for treating silent reflux at silentreflux.net and i'm feeling better now.

Ds2 nt has silent reflux he had probe in overnight did not enjoy having out in said felt very scratchy in his case the reflux was causing him to aspirate into his lungs

Ooo. Funny this came up again.
FWIW we won this battle whenever it was and ds went medication-free. It almost disappeared.
But ... Ds has had another growth spurt and so his new school/ss spent a chunk of the assessment meeting discussing it.

Hiya, my son has CP low tone and has suffered with chronic reflux. An initial PH study showed no reflux and against my better judgement we accepted that but a year on the vomitting was happening up to 30 times a day (many only possett type) and his teeth had decayed and he had become thin and dehydrated.

All this time it didn't seem to actually bother him but was an awful experience for us. Eventually after a second PH study, endoscopy, barium and milk study he was prescribed meds which didn't stop the sickness but I hope may have made him more comfortable.

We were told that CP and his low muscle tone probably were causing the sickness as the gut is essentially made of muscle and the endocoscopy showed the sphincter of his stomach was gaping causing the food to flow back out.

He had a fundoplication op in October and we haven't looked back the results were great and he has rarely been sick since.