Hi! I am new to this forum.

I am a 30 year old single mother raising a 4 (almost 5) year old daughter.

When my daughter was 11 months old, she suffered a severe closed head trauma which caused her to have a stroke, subdural hematomas, and required removal of her right frontal and right parietal lobes. She had a portion of her skull removed (which is still gone and she wears a helmet for protection) and she has a right VP shunt due to the trauma induced hydrocephalus. She was in the hospital for over 2 months. Her first 2 weeks in the ICU, she was in a coma, during the comatose time she suffered through multiple break through seizures. For a while, she stabilized. Last June she had her first seizure since getting out of the hospital. This one was a full grand mal seizure and she became unconscious and was taken to the hospital via ambulance. She coded and then was stabilized. Oh, she is also on 3ml of tegretol 3 times a day. Her levels were checked and she was down to a 1.1 and her meds were increased to 3.5mls.

Let me also add, she has a left sided hemiplegic cerebral palsy, left visual neglect, cortical visual impairment, the right side of her face is droopy, she has low tone in her mouth and has speech delays.

So, about 2 weeks after the seizure I described in June, she had a weird "thing" happen. I heard her making a clicking, grinding noise and I saw drool just POURING out of her mouth. She was moving around normally and then it ended very quickly. I called the neurologist and he said it sounded like GERD. Hmmmm. Ok. Bought it that time. However, last Wednesday (4/2) she had another attack very similar. She was making a clicking noise, and a gurgling sound and had massive amounts of drool coming out of her mouth and she could hear me and TRY to respond. She would nod her head when I asked a question. Her eyes were huge out of fear, then her mouth started twitching uncontrollably and she was putting her hand on her mouth trying to make it stop. Finally about 45 seconds later, she was trying to speak and she was slurring. Horribly. It took her another 3 minutes before her speech was clear enough for me to understand her. She said "Look Emma can talk". So she was completely aware that something was wrong. She hung on to me crying. She had another one of these episodes this morning (4/8) on the bus to school. The bus aide described the same thing. Her slurring, the excessive drool.

I told the neurologist AGAIN and he is claiming GERD. I said I have GERD, and GERD does not cause what she is going through. I am afraid that this may happen in her sleep and have her aspirate.

Am I being paranoid (which by the way, I am not a parent that jumps the gun over every little thing. I work in the oncology field doing PET scans as a Nuclear Medical Tech) or does this sound to YOU like she is having seizures of her face? I know you can have seizures and be completely aware.

Thanks for your input and the patience to read such a long post!

Hi momofastar
so sorry to hear what is happening.

I have also copied your post to our epilepsy forum

here is the link to it there so you can check for replies
http://neurotalk.psychcentral.com/sh...ad.php?t=43253

Momofastar

Yes, they sound like complex partial seizures. And I would be getting her
to her pediatrician. Explaining everything to him, exactly the same why
you have here. I would also contact the Epilepsy Foundation either
national or a local affliliate if there is one in the state you live in.

But yes it definately sounds like seizures, and you need a new neurologist.

Donna

I think as a mother you know best. Go to another doctor.