10 month old having head nodding episodes - i think these are some kind of seizure

[TRYER25]

Hows the your kid doing now and what was the outcome?

[jegspillerpiano]

The trouble is modern medicine tries to 'box' things into a condition. 'He has a normal EEG therefore it's not infantile spasms etc. If my own son has taught me anything, it's that every case is completely individual, and may have shades of one condition or another. Officialyl my son has Downs syndrome with Wests Syndrome (infantile spasms) but his spasms are not like many others with the so-called condition, and they are indivisable part of him as a DS human.

[iAREanthonyyy]

maybe a mild form of Tourette?

[aryannaweis]

he's cute and smart and too much into the movie when he should be eating dinner ?

[PetitMalSeizure]

have you looked into Paroxysmal Tonic Upgaze (PTU)?

[KaDaMiFam]

Hi, this video of your child is exactly the same as many I have of my child. Your child's movements are identical to what my child started doing at 8month old. My daughter has had 2 eegs- both came back normal and she actually had one of these movements during one of the eeg's. She's also had an mri which also has come back clear. Neurologist mentioned stereotypy movements- was this mentioned to you- we have an appointment next week and any info you have would be helpful as this is so similar.

[NukedKittie]

my son shakes his head too. We saw a neurologist who said she thinks it congenital nystagmus...which is genetic...could this be what your son has

[cpohlweary]

I don't have any answers about the head nodding - but we were concerned enough that we went to a 2nd neurologist for 2nd opinion. This neurologist guaranteed they weren't seizures but he thought our son looked like he might have a genetic syndrome.  genetics did find a congenital genetic condition - so now we're on a whole new can of worms medically. good luck and if you aren't confident of the medical answers you're getting keep pushing for answers.

[DrDNAcy]

Thanks for your reply. We have a neurologist eeg appointment on Monday. I have studied the GLUT1 deficiency syndrome. Do you have diabetes or insulin resistance running in the family?

[DrDNAcy]

@cpohlweary what kind of congenital genetic condition? is it the 7q duplications thing? what test did you do?

[ntrance12]

@cpohlweary . This video is a year old. How is he now? It does indeed look like h'es having a seizure. There was another case of a teen I saw years ago in a documentary. He's eyes too had that upgaze & his body muscles became useless for that time (a few secs.) Thus he wasn't allowed to cross the road alone. After the siezure is over, the boy had no recollection he just had a seizure & had to be told.

It took years for him to realize this was happening to him. Your boy knows something's up.

[ntrance12]

@cpohlweary. Though this is a year old, looking at it, I will speak from the point of view of a certified Hypnotherapist & energy healer. Yes, you DO need to have him wear an EEG unit to catch the crazy neural firing he's going through. Also, that baby chair needs to lean back a bit. I also recommend weekly energy healing (which negotiates or solves myriad problems that Docs don't catch.) Poor kid, hug him for me & let me know how he is now. Thanks. -K

[DrDNAcy]

my son does the same. pls help me what should i do? what happened with your little one?

[cpohlweary]

Please note as I have had several questions - in the background is playing a Shrek movie.

[cpohlweary]

Today we see a 2nd neurologist at McMaster Children's Hospital. Hopefully we will get some more answers.

I contacted a practicing neurologist and professor in New York last night, and he kindly responded very quickly.

[cpohlweary]

Here are his comments:

"I did look at the video of your son. He seems to have what i would say are head drops (subtle loss of head tone and posture). I can understand your concern about epilepsy. The thing we have to rule out is this some kind of atonic seizure. They do not look like infantile spasms. Also infantile spasms have a characteristic EEG signature and would have been picked up on the EEG done at the Hospital for Sick Children...

[cpohlweary]

...This is what I advise. A video-EEG study shall be the best way to characterize these typical events. If they are atonic seizures, they shall respond to anti-convulsant therapy." I don't want to post his name as he communicated via private email with me, but I can pass his info along if you contact me and leave me an email address...

I really hope the neurologist today is sympathetic and is able to provide the video EEG, or at least explain a plan of action if not...

[elastimum]

Hi there,

My 10 month old baby is doing this exact same thing and its freaking me out. He does it mainly when he is excited. He also do it a lot faster than your little boy and does 3 or 4 in row. Did you ever get any answers as to what this may be? I have an appointment with a specialist but it is not until May 2010. I dont think I can wait that long.

[Gretchenfan76]

Ask for a sleep deprived EEG if that wasn't what you had, the nex step after that would be to ask to be admitted for a few days for A VEEG so you can capture an episode on EEG and video so the neuro can see more of what is going on. Best of luck to you and follow your gut feeling.