My son has had pretty bad reflux from the beginning. He started having Infantile Spasms (basically, seizures) at 5 months old and they were misdiagnosed for a good month and a half as Sandifer's. Now my son is on steroid meds for his spams as well as Prevacid. Our GI doc does not seem concerned about his reflux nor is he being proactive to see is he is having other digestive issues. His father and I are very upset and are seeking a second opinion on our son.

Our son seems very uncomfortable all of the time and when he is held upright he reswallows over and over and over (almost sounds like he is gasping for air too) and then he gets upset and has a seizure usually. He throws himself backwards all the time and hates sitting up at 8 months old. He hates to be held close and acts miserable and uncomfortable when he is moved or held. He gets constipated easily and is always very gassy.

I am concerned that his reflux is causing discomfort and maybe making his seizures worse than they have to be. Have any of you ever heard of such a thing with reflux babies? We really want a GOOD second opinion and maybe some tests or something run. We are willing to travel at this point.

Wow! Sounds like you are having a tough time! I hope things get better!

If you are not getting the support you need from your GI, you should certainly look elsewhere! There is a section on this forum called Good Doctors. You might find someone in your area that way!

Keep us posted!

Where are you? Are you happy with your neurologist? I'm concerned about seizures as well...can you describe your son's seizures? Has he had an MRI or EEG? Has he improved since being on the meds? My gastroenterologist is in Los Angeles at Cedar Sinai. We love him. We're seeing a new neurologist next week who is also at Cedars and came highly recommended. Good luck.
My doc told us to use mylanta in addition to prevacid to help with discomfort.

My son's spasms are a little better with the meds. He used to have clusters of spasms, like 7-10 at a time, but now he just has maybe 5-10 random ones on a good day, and when his reflux isnt going crazy he maybe has 10-20. When they are bad his head and limbs buck forward and his stomach goes backwards, kind of looks like he is being punched in the stomach. When they arent bad, they are more of just a quick eye blink and he stops for a second then keeps going. They are very quick usually.

They did an EEG on him to find out he had the spams. He is very developmentally delayed at this point, and we are hoping he will feel better soon so he can catch up a bit. His reflux is making everything worse it seems like.

We are looking into going to Cinncinati for his reflux right now.

also meant to say, We are in Atlanta our neurologist is pretty decent, although she is very hard to get ahold of and with all the meds he is on, it would be nice to be able to contact her easier. He did have an MRI as well and that turned up ok.

What med is he on for the spasms? And if it is a steroid I wonder why that and not an anticonvulsant? Is he on any reflux meds at all? What did they think the cause of the seizures or spams were?

He is on ACTH (steroid injections), Keppra, and Klonopin for his seizures. He was on Topamax but that really doped him up all the time so we took him off of it. Unfortunately, I think his spasms are getting worse again without the Topamax. ACTH is supposed to be the wonder drug for spasms, but we are up and down with the results with it. It is very frusterating.

He is on Prevacid solutabs for his reflux. As far as stopping acid in the re-swallowing, it seems to be working because theres no blood in his stools or anything. As far as helping his reflux problem it does nothing. He probably re-swallows 50+ times a day, and when he is held upright or gets upset, it makes everything worse and then he ends up having more spasms.

Our GI doc is very arrogant and basically doesnt want to run any tests on him because of the meds he is on. I am thinking he has an overall digestive system issue in addition to his reflux because he is always gassy and constipated too. We are seeking a second opinion.

They have not found a cause for his spasms yet. They have ruled out brain damage, tumors, chromosonal issues, and most other causes. We are still waiting on the metabolic results. It is acutally a good thing when they cant find a cause, it makes the prognosis better. For someone whos tests are all coming back normal, he sure has a lot of problems and is so miserable.

I really wish there was something I could do to fix my baby. I have never ever seen a baby cry and scream so much, and it has been going on since day one.

I'm so sorry your GI is such a pill! I would DEFINITELY go see someone else, if for no other reason than to get a second opinion! Have you talked to your neuro about a ketogenic diet or B-6 supplements to help with spasms? I don't know how this would affect the reflux. Are you a member of any infantile spasms suport groups? I know of a good one...

In the meantime, there's been some discussion of using prevacid in combo with zantac - also my ped suggested I give Katie mylanta in addition to prevacid if she seemed uncomfortable.

Your poor little baby, I hope he gets some relief soon. Isn't the ACTH supposed to make them super grumpy and uncomfortable too? Sorry you both are having to go through this.

I was going to suggest Cincinatti Childrens--they are supposed to be one of the best in the nation--if not the best!

I have read before about seizures and reflux but cant remember exactly what it was. I know that the vagus nerve is the biggest nerve in the body and goes from the brain right into the gut. I remember when I was reading about it, it mentioned seizures and digestive problems, including reflux and motility problems (like constipation). Let me see if I can find what I was reading and I will get back to you.

Sorry you are going through this. My husband has had a few grand mal seizures and they are just awful. I think my daughter had a mild one in her sleep a month ago, but because we haven't seen it again, we wont pursue anything. I really empathize with you on the frustration of GI's blowing your kids off. I wouldn't stop until you get to someone that really cares. We are at UCLA now and have a wonderful GI there. Let me know if you want his name.

Take Care!

Hi!
I don't know if this will help any, but my son was put on reflux meds early (Prevacid and Pepcid) by the time he was 3 months old. When he was about 7 months old the specialist wanted me to take him off the Prevacid and just keep the Pepcid. That night he woke screaming and having spasms (seemed like about every 30 seconds he'd tense up & arch) for about 10 min's or so (hard to gauge in the middle of the night). Next day I put him back on the Prevacid and he hasn't had any since. Coincidence? -I don' think so! I know you said the current dosage/meds don't seem to be helping much, but keep the hope that maybe once you find the right combo of reflux meds for your baby the spasms might be alleviated too - good luck w/ your search for answers!!

Hi!
I don't know if this will help any, but my son was put on reflux meds early (Prevacid and Pepcid) by the time he was 3 months old. When he was about 7 months old the specialist wanted me to take him off the Prevacid and just keep the Pepcid. That night he woke screaming and having spasms (seemed like about every 30 seconds he'd tense up & arch) for about 10 min's or so (hard to gauge in the middle of the night). Next day I put him back on the Prevacid and he hasn't had any since. Coincidence? -I don' think so! I know you said the current dosage/meds don't seem to be helping much, but keep the hope that maybe once you find the right combo of reflux meds for your baby the spasms might be alleviated too - good luck w/ your search for answers!!

I don't know if you realize that the original poster is talking about seizures when she says spasms.

I don't know if you realize that the original poster is talking about seizures when she says spasms.

-Sorry! I certainly didn't mean to trivialize her problem -ad

Our son seems very uncomfortable all of the time and when he is held upright he reswallows over and over and over (almost sounds like he is gasping for air too) and then he gets upset and has a seizure usually. He throws himself backwards all the time and hates sitting up at 8 months old. He hates to be held close and acts miserable and uncomfortable when he is moved or held. He gets constipated easily and is always very gassy.


Are you involved with the Early Intervention program in your area? (Sorry if I missed this somewhere else) I'm wondering about sensory issues...does he get OT or PT at all? Seems like he'd be eligible for services. Just a thought.