Hi,
Reglan is associated with extrapyramidal symptoms, such as dystonic reactions, muscle spasms, involuntary muscle movements, facial grimacing, etc. These symptoms usually start within 48 hours of starting the drug. You can also have Parkinsonian type symptoms within 6 months of starting the drug.
So, Pam, you are right about the weird movements... it is hard to differentiate between seizures and the adverse reactions of reglan. And some studies have shown that reglan can lower the seizure threshold, making it a bit easier for a child to seize with a history of epilepsy.
In my opinion, Ricki, your daughter should be trialed off of reglan as she has the nissen surgery. If she starts having reflux symptoms again, then either the nissen has loosened and needs to be addressed. The nissen is the treatment of GERD after medical therapy had been used and anti-reflux measures initiated.
I work in the pediatric ICU with sick kids who have poor GI function (related to acute illness). I usually place kids on anti-reflux meds of Zantac, lansoprazole (cheaper than the omeprazole), or pantoprazole (used last since it is more expensive and not more effective unless the other meds have failed or you have pre-existing GI issues). I can count on my hand the number of times I have ordered reglan (besides the one time dosing for NJ tube placements). The side effects are not worth just broadly administering it to all PICU patients. Kids with pre-existing GI issues (significant motility issues with or without Nissen) sometimes are on it when they come in so that is when we continue it. One GI physician said that after a few weeks you develop less response to the drug.
So, I would talk to your CF team and perhaps get a GI consult. I am surprised you don't have a GI physician given your daughter's significant GI issues. Anyone who has a gtube with nissen has a GI physician... As much as your CF team is educated, it is important to have a specialist to deal with the GI issues and the medications that are commonly used with that specialist team.
Do not feel bad in asking for a specialist. You are the consumer and are paying for these services. From what you both are saying, you are not asking for unreasonable things. If your child was just having some minor reflux (without the above mentioned procedures), getting a GI consult would be a bit early. But you both have children with complex GI issues that need follow-up at least 2-3 times per year to make sure your children are thriving from a nutritional and GI aspect.
Good luck!
Jenn
30 yo cf