Update on eeg

[RockerMama]

My daughter had her eeg and then her neurologist appt today. I was soooooo not impressed with the neurologist we saw. The eeg was a sleep deprivation one, and according to the Neurologist, the preliminary report looked totally normal. She said that her issues don't sound like they are migraines, especially with how rare her headaches have been. But she said they definitely didn't fit being seizures. I read a lot about the simple partial seizures and how they can be totally sensory. But they completely dismissed everything. Not migraines, not seizures, pay your copay, see ya.

This neurologist is in the only pediatric neurology practice. We saw a different Dr from the same practice for my son(his febrile seizures weren't the typical ones you would expect, so we saw her as a precaution), and she flat out said that my son wouldn't qualify for Early Intervention, but when we had him evaluated he was significantly delayed.

So, no clue why she is having these episodes. The eeg was so short, about 40 minutes, and that included strobe light, "hyperventilating" for 3 minutes, and 20 minutes of sleep. If her symptoms are random sensory ones, 40 minutes seems like such a short time to pick up on anything.

Anyways, thank you so much for all the help!

[RockerMama]

Oh, the weird thing I was wondering though... What does XL Spike mean on the eeg? I went to use the bathroom, and saw she had a lot of those.

[travel bug]

How frustrating it must be for you. I don't blame you for not being impressed with the neurologist. It may well be that the doctor was right, but it certainly isn't helpful of her not to try to investigate further to find some answers. Also, the sad truth is, many neuros really aren't that familiar with all the forms epilepsy and/or migraines take. It sometimes takes several visits to different doctors to find one who finally identifies what's going on.

Again, maybe she's right about it not being epilepsy or migraines, but either way, I'd get a copy of the EEG (you have a right to your medical records though there may be a small fee to get them), or at least the EEG report, and find another neurologist or general pediatrician and get a second opinion.

BTW, here's a link to an overview of EEG's. It talks about spikes at the bottom of the second paragraph under the examples of EEG readings. Spikes can be an indication of seizure activity.

http://epilepsy.med.nyu.edu/diagnosi...encephalograpy

All the best to you and your daughter

[RockerMama]

Thank you for that link! My sister has MS and sees a VERY good neurologist, so I think we are going to try to see if he will see my daughter. My husband and I both agree that the neurologist we saw was just too quick to dismiss such unusual symptoms in a 6 year old. We definitely felt like she thought it was all in our daughter's imagination. It isn't. Sigh. We will be getting a copy of the EEG, thank you!

[travel bug]

Hope you have better luck with this neurologist. Keep us posted

Best wishes!

[donnajane]

Hope you can sort out what is happening with your daughter. My 1 yr old is in a similar dilema. He has now had 4 EEG's. His first at around 6 months was clear, the did an 2nd a few weeks later it lasted 24hrs and he had his Shudders but nothing came up on EEG so we were told he has "Shudder Syndrome" its "nothing". Then he started to have events where he vagues out and falls to the side or front, then came the arms spasming upwards without his control, next came events where he vagues out and then his arms and legs "twitch/spasm" first Nureo said no he just has "Shudder Syndrome" and didn't even want to see him or I could go back to the ED and they would decide if it was worth him comming down. Found a private Paedetric Nureo he took one look at the footage and said you sons not right and they look like epileptic events. He even showed it to his associate who, without knowing the history, said they look like epileptic events. He ordered an EEG that day, it was clear. Had another EEG a month ago and at first he said their were small increase but then almost dismissed what he and said and said no its all clear. Since then my 1 yr old now has added another weird quirk into the mix, his head goes sideways and his shoulder spasms up towards it. He had 30 in 5 minutes on the weekend. I will tell our Nureo but in our weekly email but all I seem to get back is we don't know why he is doing it, some kids just do it but nothing becomes of it. My husband and I keep wondering what is comming next. Our 1 yr old hasn't had any day for the last 6months where we haven't seen several events. The thing we can say which has improved though is his Shudder Syndrome has dropped from 150 a day down to a handful which has mean't he has started to develop again after being on "pause" for months. Oops sorry for the long post. I just get so annoyed when Dr's tell you there is nothing wrong when as parents in general you know your child isn't right. They only see them for such a short time where as as parents we seem them all the time.

Donnajane