Norrah's Grizwalds

***UPDATE 1/26/09 - Diagnosed as Benign Myoclonus of Infancy by Ped. Neurologist after 3 EEGs (2 of which she had episodes, MRI and physical exam as well as review of her videos.)***

Norrah has been doing these strange movements that appear to be seizures since 4.5 months old. We have had two normal EEGs (20 min and 24 hour)one of which she did these movements during the EEG and all appeared normal. We call the episodes "Grizwalds" because no one knows what they are at this point. The episode starts about 8 seconds into the video. You can see that she is still coherent and even follows her sister with her eyes and head as her sister comes over (on her right side) for a kiss. I am proclaiming Grizwald in the background as is customary in our house when one of these episodes happen. Usually dad comes running to see and to comfort. If you have any insight please fill us in. To learn more about Norrah check out knowingnorrah.blogspot.com

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Tags:

• infant seizures
• baby twitches
• shakes
• spasms
• sandifers
• syndrome
• undiagnosed
• benign
• myoclonus
• of
• infancy

[alisonamsb]

that's such a great update! You must be relieved to have an answer.

[KenandLuPlus2]

Yes, we are relieved and it seems to be the best possible diagnosis we could have received. Norrah seems to be having these episodes less often lately. YIPEE!!

[majaken4]

Is Norrah taking Zantac or Prevacid for the reflux?

[KenandLuPlus2]

Actually - BOTH. She has a history of throwing up full meals daily (projectile). Zantac helped but then Norrah got worse, then prevacid (better than worse), then both and now after a month of being well she is throwing up daily again.

[KenandLuPlus2]

MRI (with and without contrast) and EEGs all normal. No other tests have been done at this point. Norrah also has pretty severe GERD.  I started noticing her episodes around 4.5 months. It seems she was doing it before but less often. Orginally discounted it as GERD related.

[majaken4]

I am curious to see how the MRI went? What other tests have been done? Has she had a PET scan? Did her seizure-like activity begin at 4.5 months? This would indicate an age-dependent form of epilepsy.

[KenandLuPlus2]

When I told her sister to give the kiss she walks around (slowly) on the left of the screen and then kisses Norrah after the episode. By the way - Thanks so much for your help and for caring about this. I am finding out some pretty good info already. Maybe it is Sandifer's?

[alisonamsb]

I just listened to the audio portion - you said nothing sparked the episode but just before it happened, she accidentally hit at the hanging toy, which could have caused a startle. Also, you told the older sister to give her a kiss - it's not seen in the video whether the sister reacted quickly, which could have caused the startle.

[alisonamsb]

the other thing to look at is sandifer's syndrome - which is related to the GERD she is experiencing. Her spasms aren't typical of Sandifer's but it can present in many different ways ans it appears that she does an initial back arch in the beginning and seems to gag at the end of it - it could be part of the reflux issues.

[alisonamsb]

I read parts of your blog - definitely try to keep the MRI. Hopefully it will show nothing. That will give you piece of mind. If she is alert during the episodes and the eegs are normal, then they likely aren't seizures. It could be a hyper-startle, particularly since you said it it happens during startle times. There is a condition called hyperreflexia that looks similar to what your dd is doing. You may want to do a bit of reading on it to see if the description fits her symptoms.