Hypotonia and reflux

[irrum]

My 4 year old son suffers from global development delay, hypotonia and reflux. My son was very late in achieving all of his developmental milestones he is 4 and is not walking. He was diagnosed with reflux when he was 18 months and has been on medication since. Recently his consultants have decided they would like to operate on his reflux as the medication is not allieviating the problem.

Does your child suffer from hypotonia and reflux as well? If so do you think the reflux is aggravated by the hypotonia? I would be very interested in your views and experiences.

Thank you.

[sbgrace]

They often go together. I think there are lots of reasons for that. Maybe the kid has weak muscle tone to hold down the food. More likely he empties slowly (weak muscles in the GI tract) and so things sit around and come back up. Often there is an underlying issue that is causing the hypotonia and those same issues have GI stuff associated as well.

Does your son have any constipation? Correcting constipation helped my child (mildly hyptonic, severe reflux, dev. delays and issues, failure to thrive) with his reflux. But in his case the underlying issue for both of those things (and his developmental delays too) was metabolic. You've got three metabolic markers there so I'm wondering if you've ever had metabolic (and genetic if there are other markers for that) testing? Here is a link I made about signs of metabolic stuff. Link Metabolic Information

I'm wondering about some other things as well. Which PPI's has your son tried, is he at proper doses, and is he being dosed three times per day? http://www.marci-kids.com/dosing.html It wasn't until we followed the guidelines here and switched to Zegerid that we got my son's reflux pain under control and his weight/growth stabilized as a result. Prilosec has compounding stability issues. Many of the meds are underdosed or dosed twice a day which will not help a severe refluxer.

The other possibility is eosinophilic disease. In that the child won't respond (at least not completely) to PPI's because the underlying issue is actually allergic in nature and the treatment is specific to that. My son was scoped to rule it out. http://www.apfed.org/ee.htm

[irrum]

Thanks for your reply.

My son doesnt get constipation that frequently but his bowel movements tend to be quite loose. Thanks for the links. The one on metabolic disorders was very useful I will make sure the tests are done. My son is on domperidone three times a day and lansoprazole once a day. The doctors have recently checked his doses and say they are what he should be on.

His reflux just doesn't seem to respond to medication on the whole he seems to be quite happy, he eats and drinks well. When his reflux is really bad he will go off his food for a few days. It's almost like he wants to be sick but cant. Sometimes it will get to the point where he is wretching almost forcing himself to vomit but because he wouldn't have eaten there's nothing to vomit except some phlegm and even the medicine will not help. Nothing helps.

Is surgery really the answer?

[sbgrace]

Originally Posted by irrum

Thanks for your reply.

My son doesnt get constipation that frequently but his bowel movements tend to be quite loose. Thanks for the links. The one on metabolic disorders was very useful I will make sure the tests are done. My son is on domperidone three times a day and lansoprazole once a day. The doctors have recently checked his doses and say they are what he should be on.

His reflux just doesn't seem to respond to medication on the whole he seems to be quite happy, he eats and drinks well. When his reflux is really bad he will go off his food for a few days. It's almost like he wants to be sick but cant. Sometimes it will get to the point where he is wretching almost forcing himself to vomit but because he wouldn't have eaten there's nothing to vomit except some phlegm and even the medicine will not help. Nothing helps.

Is surgery really the answer?

I would not if he were my child at this point based on what you wrote. I say that because you've not ruled out causes (treatable, like the EOS disease I linked above) that wont' be addressed with surgery. Even worse he is not being adequately dosed for his reflux with the Lansoprazole. Not even close. I'd consider a new doctor. Are these pediatric gastros suggesting surgery and prescribing these meds? Has he ever been scoped? What tests have the run?

Look at the link above for proper dosing. You can bring that in and fight for him (do it) but they have prescribing information and it's in there so I can't imagine why they are doing it once per day.
The dosing for lansoprazole for his age on that site is 1 mg/kg two or three times per day. Severe refluxers need three times. What they are doing is causing rebound acid as the dose wears off. It's worse than nothing basically.

He needs to be dosed correctly for his weight (check their figures or have a pharmacist do it for you based on his weight to make sure the dose is right) three times per day. If that doesn't fix the issue you move to scope to look for EOS. I would not do a surgery at this point unless there is a lot of stuff that they've done that I'm not aware of?

[mrsfru]

I know this was first posted over a month ago, but Mama, if you are still here...I wanted to add...food intolerances/allergies can also aggravate reflux (in addition to what the pp'ers responded with). If you eliminate certain foods from his diet, the reflux may improve. Dairy is difficult to digest, and several of the top allergens are well known for being reflux triggers. Every small step can help and may help avoid surgery.

My kids both had mild hypotonia and reflux due to prematurity (and for ds1, other so far undx'd issues).

Food eliminations for both of them helped reduce the reflux tremendously and allowed the meds to work better. My youngest was FTT due to the reflux, so it was getting pretty serious.

hths

mrsfru