Zoe Episode 3

These are a couple of non-typical looks at the behavior of our daughter Zoe at 4 months. Initially diagnosed with Sandifer's Syndrome, now almost a year later, they're unsure what to really call her symptoms since they're atypical and they change over time. While most of her episodes look exactly like seizures (and were wrongly treated as such by several hospitals and Neurologists - see Zoe Episode 1 and Zoe Episode 2), over the course of a year, we've seen things that are also quite different.

Here you see a unique episode where she cuts in and out of the trance-like state to scream. That is followed by a brief clip of what we call "aftershocks". Aftershocks occasionally come following an episode after Zoe falls asleep. She'll wake herself up every 15 seconds or so with a motion just like you see here. While these clips are a bit horrifying to look at (especially the first part), this video helped doctors see past their initial (wrong) gut-reaction diagnosis of epilepsy and led them to a Sandifer's-like reaction which would normally be treated just like any other Acid Reflux / GERD infant. However, in our case, GERD treatments have been completely ineffective. We continue to search for medicine, a special diet, or any treatment that will help Zoe. (We have 2 Gastro doctors as well as a Nutritionist working with us on this.)

It is probably also important to note that, now at 14 months of age, Zoe is extremely developmentally delayed. We are also without a diagnosis for this condition, despite searching every field of medicine (from Genetics/Metabolics to Neurology to Autism experts, no one has a clue what's going on.)

Category:

Education

Tags:

• Acid
• Epilepsy
• episodes
• GERD
• Infant
• Reflux
• Sandifer's
• Seizures
• Syndrome
• Metabolic
• Autism
• Undiagnosed
• trance-like

[jayel71]

I am wondering if this is what my 6 week old daughter has but milder? I am posting a video . plz tell me what you think. Thank you

[dirtyelectronic]

@jayel71 I watched your videos. I don't see any movements here that look anywhere near as severe as what we were seeing with Zoe at the same age. My gut instinct is that everything you're seeing is just distress/pain related to reflux. If you're not already, I strongly recommend max doses of Prevacid. Over time, this helped Zoe's reflux tremendously. Oh, and be sure to obey the 30 minute wait after giving the Prevacid before feeding. Very important. It didn't work for us 'til we did this.

[anaisgh12]

The same happened to my son, he started doing weird movement a month ago that we thought were normal but became more frequent and severe, so I told the doctor & he said that it looked like IS, he got an EEG done & it came back abnormal, however the particual patter/wave that forms in the EGG was still not showing, but due to the fact that the movement looked exactly like Infantiles Spasms, the doctors decided to start the ACTH shots, which seem to be working now, he's on the 2nd week now

[dirtyelectronic]

@anaisgh12 I consider you quite lucky that the doctors identified it and began treatment anyway. Our doctors did nothing for over a year, and once Zoe was eventually diagnosed with Infantile Spasms, the unchecked seizure activity had already done untold damage to her brain and completely halted her development. I know ACTH is extremely trying due to the side-effects, but it often works. I wish you all the best. If ACTH doesn't hold, try the Ketogenic diet. It is working for Zoe right now.

[dirtyelectronic]

@anaisgh12 I hope the ACTH is working well for you, without the difficult side-effects that are often associated. We have friends that have had a lot of success with it (though they have had the side-effects). After completely failing with Sabril/Vigabatrin, we have found success with Zoe's IS using the Ketogenic Diet. As long as it continues to work, we'll definitely stick with it. Good luck in the future. I hope both of our children have perfect EEGs in the very near future. :-)

[giaafterdark]

my son does this and has been diagnosed with west syndrome epilepsy

[dirtyelectronic]

@giaafterdark Yes, we now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to meds. Why it did not show up as spasms sooner, we may never know.

[Stephoodlee]

Please don't vaccinate this beautiful child for fear of causing more neurological damage.

[tegskkace]

I hope you got the diagnoses of infantile seizures?! Look it up on YouTube, it is VERY SERIOUS!

[jayel71]

@dirtyelectronic thank you for taking a look and for your honest advice. I took my daughter to see a doctor yesterday and they ran some tests, took an x ray and everything seems ok ... no specific findings other than a mild case of acid reflux. They did prescribe prevacid and thankfully its working for her. I hope Zoe is doing well. Thanks again!!!