Zoe Episode 1

Misdiagnosed as seizures, it took us months to discover that these episodes are actually Sandifer's Syndrome - a condition directly linked to her (very common) acid reflux/GERD problem. Zoe has one of the worst cases of Sandifer's ever seen by the specialists at the University of Michigan Hospital, and was misdiagnosed by many Pediatric Neurologists and staff at both Troy and Royal Oak (Michigan) Beaumont Hospitals and Detroit Children's Hospital. She had to undergo countless unnecessary tests and hospitalizations (including CAT, MRI and multiple PET scans, 3 EEGs, and a sleep study.)

Though I am only showing the early portion of two of Zoe's first ever episodes here, it typically takes Zoe anywhere from 1-2 minutes to come out of her trance-like state and begin to see the world around her again.

Category:

Education

Tags:

• Acid
• GERD
• Infant
• Reflux
• Sandifer's
• Seizures
• Syndrome

[Diva2be7]

My son also has had 2 similar episodes. We tried an EEG and he woke up midway, so we're trying a sedated one and MRI asap. The first episode was shaky like this video, the one today was more of a stiff position without shuttering and the eye movement. Today's was a little longer then the first. Maybe a minute. I'm not sure when it started, I caught it after it began because he was facing the tv. My neurologist suggests possible breath holding causing the episode also. He has reflux, we just can

[dirtyelectronic]

@Diva2be7 Some of your message got cut off, but I got the hang of it. I just wanted to reply and tell you that now, more than a year later, we've found out that Zoe does have Infantile Spasms - a rare epileptic disorder. It didn't show up on EEGs, MRIs, or anything for 15 months, so it went untreated. Based on this, my advice is just that, if Neuros strongly suspect epilepsy, try a medicine or two just to see if it helps. The risk is low, and if we'd done that, it could have saved her mind.

[blumoonqueen55]

Hi my son is doing somthing similar to this often during eating. We have had a normal EEG but I still feel as if somthing is not right - comming across your video is helpful and I was wonder how she is after the episode? My son falls into a deep unresponsive sleep (can't wake him) for 20-30 min then wants to finish eating & is completely normal. He has had a lot of spit up issues - more like projectile vomiting- hrs after feedings. Thanks

[sisenhoff1]

@blumoonqueen55 Did anyone ever get back with you on your question. My 9 month old has similar spasms but also has this 20-30 unresponsive sleep afterwards. Something I am not finding many mention with Sandifer.

[dirtyelectronic]

@sisenhoff1 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med just to see if it helps.

[dirtyelectronic]

@blumoonqueen55 Sorry for the wait on a reply. Our daughter used to do this exact same thing after episodes - deep sleep for 30 mins. We later found out it is indeed a characteristic symptom of seizures - they're draining and often children go to sleep after. A year after this video, our daughter was finally diagnosed with Infantile Spasms (Sandifers was a wrong guess). My advice is simply to be more diligent than we were - test and retest on EEGs. Maybe even try a med to see if it helps.

[alilbabyphat18]

Thank you SO much for posting this! My almost 6 month old has been having similar episodes, and does them only after eating or while sleeping. We are taking him to a neurologist on Monday.

[dirtyelectronic]

No, they definitely didn't associate it with reflux, and she was in several hospitals and seen by several Neurologists. VERY frustrating, because we were told to give her two very strong anti-seizure medicines for a month before they gave up chasing epilepsy as the cause, and it took us 'til she was almost 5 months old to have someone even suggest GERD as the cause. Zoe's almost 1 year old now and still does this sometimes. She's on Prevacid, but for episodes, Gaviscon is the new hero.

[starznburls]

My son also did this! He was diagnosed with reflux when he was a month old & prescribed zantac. The doctors always told me this was just a nervous disorder, and nothing needed to be done about it. I'm really surprised that they didn't associate it with the GERD! He's almost 3 now & very very rarely shakes like this anymore.

[dirtyelectronic]

It was something our Pediatrician told us to try. If they can stop, then it's probably not a seizure. Of course, this didn't prove to be a very good test in hindsight, because she couldn't really stop, but these episodes have since been proven not to be seizures.