Re: Operation to Seal of Reflux Question /medications

[Guest guest]

Hi Rosy

They have tried thickening agents to prevent the reflux. He never used to suffer from reflux which was why they didn't do it when the G-tube was fitted. But lately that has changed...they have only been wanting to do it as a last resort but they feel that it has been reached.

Unfortunately with Connor he can't sit or lie by himself while awake. If we leave him he arches himself back so much that the back of his head almost touches his feet (okay probally not quite so bad) and he starts having muscle spasms. If he is in our arms he does the same thing but if we rock from side to side (sometimes quite vigorously) he relaxes completely. I presume it has something to do with the movement disorder that he has picked up since his first "episode). As a result this is certainly not helping the reflux especially after meals.

As a matter of info Connor is on the following medication daily:

Rivotol

Halyperidol - not sure what they will be called where you are.

They have helped greatly in calming him down and has helped settle him neurologically, he is a much happier child than he was without them. But I believe they do speed up the muscle wastage. Unfortunately we have tried to lower thedosage and each time we do the result is not good. Does anyone use this combination or know of any reasons why they should not be used.

Re: Operation to Seal of Reflux Question

like was said before, every child is different. Have they tried medication first or do they want to do the surgery right away....because they have been expecting to have reflux for so long....Also, I am sure you have tried this, but since it was not mentioned I thought I just do. Something that helps somewhat with reflux is to have Connor sit and lay always at an angle. Never ever flat. Specially after meals and whenever he goes to sleep. There some great websites available by doing a search on GERD. Sorry I do not have them handy anymore. I specially remember one for kids. A different question. Is there any way for your medical team is willing to connect with some of the specialists in the world to get second opinions or simply brainstorm and get input from a mito specialist. I realize not all doctors are open to that. Keep us posted.rosy, mom to max, nearly 6caringbridge.org/ca/mandcPlease contact mito-owner with any problems or questions.