I don't know whether to scream or cry!!!

[RockerMama]

The neurologist called my husband back today. He had called first thing in the AM, per the pediatrician's instructions, about my 6 year old being temporarily unable to move her arm(TWICE!), and then opening her mouth to speak(she was playing with Barbies, and trying to make the 'teacher' one talk) and was unable to get words to come out.

The eeg came back normal. No change at all during these events. I just do not get it.

After the eeg was off, she was working on a project for school. She was trying to put stickers on to something, got that "weird" feeling like she has to squeeze her hands. I SAW her shaking. I SAW her struggle to get the sticker on to the box, and saw her legs shaking, until she squeezed her hands.

My husband talked to the neurologist who said it isn't neurological. When he asked her how the heck a 6 year old could be experiencing these things is "normal", she said that my daughter was lying for attention, and should see a therapist. I am just FLOORED that that is what they are sticking to. It isn't like she was answering "Yes" to everything they asked. It isn't like her story is changing, at all! I just can't believe it.

 

[Endless]

Do both. Scream AND cry. I'm so sorry about the run around you are getting.

About half of all people with seizures have an eeg that's read as normal. The neurologist should be making the diagnosis based on other information, too, most notably symptoms and what other people observe.

http://www.epilepsy.com/epilepsy/eeg_normal

It may be time for a second opinion for your daughter. Taking her to a specialist (epi) would provide a neurologist with more knowlege about epilepsy.

Hugs to her, okay?

 

[brendlm]

I am so sorry! What the heck! You defiantly need to find another doctor. Really I think that is a very unprofessional answer. Parents know their children. You need someone who listen and believe you.

 

[seizurrific]

Find a new neurologist who can legitimately do his job- that is absolutely ridiculous! Go ahead and do both; scream and cry and I recommend throwing something breakable too haha

 

[hootie]

Did she have strep in the last year or so? Is it possible she has post-strep chorea?

My son had involuntary hand movements and facial movements post-strep that eventually
cleared up...the movements were NOT non-stop like many you may hear described or see
on you tube. It seemed to bother him more when he was stressed or tired (or ate something
with artificial flavors/colors).

 

[RockerMama]

Did she have strep in the last year or so? Is it possible she has post-strep chorea?

My son had involuntary hand movements and facial movements post-strep that eventually
cleared up...the movements were NOT non-stop like many you may hear described or see
on you tube. It seemed to bother him more when he was stressed or tired (or ate something
with artificial flavors/colors).

Nope, no strep at all.

 

[RockerMama]

THANK you everyone! I talked to her pediatrician today, who said it is either neurological or psychological. She said that there is a BIG difference between the possibility that my daughter is subconsciously feeling upset, and that these feelings are the way that she is manifesting her feelings, and the other Dr flat out calling her a liar. But she is recommending we get a second opinion from a new neurologist. It also happens to be one that I have been calling for the past week that my sister sees for her MS. Hopefully I will hear something back soon.

 

[Nakamova]

As Endless said above, EEGs are only sometimes accurate, and they are notably inaccurate with children and with seizures that don't involve full loss of consciousness. It's distressing/offensive/unprofessional/just plain wrong when a doctor insists that a negative EEG automatically means someone is lying. Definitely worth finding a new neurologist (or two). I hope the next one is more skilled and empathetic.

 

[donnajane]

HUGS!!!!!! Your poor family. It is so frustrating. Glad my sons nureo isn't saying things like that to us but he's only 1. We had a similar thing happen with him at child care on Friday. First he was just lying on the floor playing then his eyes rolled back a few times then they said his arm was over his eye and he couldn't move it he had to get his other arm to move it off his face!! Thankfully we had his Nureo appointment that morning and when I showed him what the Child Care staff had written re the event that morning plus after he observed my son he has now booked him another EEG, for 4 weeks time, and put him on a list for an MRI at the childrens hospital, which he hopes to get done in 6months.
Believe me I have screamed and cryed over what is going on with my little man especially early on when I was told by his GP he was just doing it for attention!!!!!!!!
Take Care
Donna

 

[RockerMama]

She had a few of these episodes while the eeg was going. So I think that must mean that it isn't seizures. We are seeing a new neurologist in a couple weeks. Hopefully we get more of an answer than what we have been.

 

[epileric]

She had a few of these episodes while the eeg was going. So I think that must mean that it isn't seizures. We are seeing a new neurologist in a couple weeks. Hopefully we get more of an answer than what we have been.

Actually that's great. The EEG measures brain waves so it's not going to prevent seizures. If they are seizures (& they sure sound like them to me) hopefully they will have registered on the EEG during her episodes so that there is no question as to what it is.

 

[Ruth]

Sometimes, when I cannot move my arms, I do aeorbic exercises. That works for my arms.

I do not blame you for being frustrated. I am glad that you are here. You will get a lot of information.

 

[acpollard2010]

my doctor is doin the same thing but adding that to my epilepsy.they call them non-epileptic events caused by stress or makin yourself have seizures none of this i believe at all been through testing and still not much.