Posted By Posting
Jul 24, 2009
nadinelk
Reflux with Seizures?? Not Sandifer's
Hi there. My son Henry is almost 11 months. He went through a 14-week treatment of prednisolone for his facial hemangioma. 4 weeks of that were a weaning off period. While he was on the prednisolone, he took zantac (ranitidine) to counter act the medicine so he wouldn't get ulcers. He is also on propranolol for his hemangioma as well. Prior to this he had no feeding problems (we used to give him mylicon in his bottles as an infant). About 1 week into the weaning of the steroids, henry starting gagging all the time, like he was going to throw up and then sometimes he would throw up. This was off and on, but mostly gagging for 3 weeks straight. This started the week of June 15th. We went to a GI doc who advised us to up his dose of Zantac, that it had worn off thus causing reflux. We didn't start right away because he only seemed to be gagging for a few days straight. Last week was particularly bad. He started projectile vomiting and went up to 2x a day. We upped his dose of Zantac last monday.. We brought him to the doctor to make sure he was not dehydrated. We had to drive from Las Vegas to San Diego for his hemagioma doctor's appt. (he's a specialist, so we make the drive 1/8 weeks). He agreed that the vomiting was due to reflux. On the way home, something scary happened. Henry's eyes rolled back in his head and he was unresponsive, and had vomit around his mouth. We called for an ambulance who brought us to the hospital. They said he must have fallen asleep, vomited, and choked a little on his vomit. They doctor there also said reflux, and gave us a prescription for prevacid to replace the zantac. We didn't start it at that time. Then the next night, we had a real nightmare. Henry had a seizure at home. We called another ambulance and he was brought to a different hospital. There, again, he had a seizure (the 2nd one was more stress-related though). It was very scary. After doing every test in the world (MRI, EEG, CT SCAN) and keeping him overnight, they determined that everything was normal. He is now on anti-seizure medication for the time being just in case. We have now switched him to the prevacid. Yesterday was the first day in weeks where he did not gag once. They said at the hospital that the seizures and the reflux were not related but I find that so hard to believe. I know about sandifers, but the seizures were textbook seizures, not what I believe to be sandifers. The reflux started when he started to be weaned off the steroids. Do you know of any other cases of what I am describing?? We are so frightened for our sweet little boy.
Jul 24, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i do know a few little ones that have reflux and have seizures. i am pretty sure that none of their reflux episodes are related to or are caused by seizures and vice versa. steroids can do some crazy things to the body, i would almost bet (check with your dr about this for sure) that it takes a while to get the steroids out of his system, about 2 weeks maybe longer. his reflux might quite down around then.

if it were me i would see a neurologist to evaluate the seizures maybe have longer eeg and maybe a GI to get a endoscopy of his throat done to check out damage and talk about the effects of steroids on his GI symptoms.

check out marcikids.com and it explains the difference between seizures and sandifers. there are ever youtube.com videos of sandifers that you can compare it to. i know you said he really had seizures and know what sandifers is, but you should really talk to his pedi or neurologist to have him evaluated.
Jul 24, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
oh i am sorry! welcome, *hugs* :)
Jul 25, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i've been thinking about you a lot actually. there has been some recent debate that emily might be having seizures. I was looking it up online- b/c that's what i do and i came across Infantile Spasms. Now I do not want to scare you but it might be something you want to look into or ask about, just because of his age and your experience. *hugs* again
Jul 27, 2009
nadinelk
Thank you so much for the response.

Henry is seeing the neurologist for a follow-up in about a week. I'm hoping he will take him off the anti-seizure meds.

I have seen the youtube videos of sandifers and can definitely see the difference to what Henry had. He definitely had a full-blown seizure. In fact, when I see the Sandifer's kids, I don't even see a slight resemblance to a seizure. I didn't really know what I supposed to be looking at.

Anyway, the working theory now is that because of the reflux brought on by the Steroids, Henry was throwing up quite a bit and his little body just couldn't take it anymore, so he had the seizure and had to shut down.

Now that he is on the prevacid, the reflux is doing really well. He is not throwing up and hardly gagging. Of course, we are keeping him from too much activity and keeping him propped up when he has just eaten.

Check with your
doctor first!