Possible seizures
 

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! :p

It sounds like possible seizure to me. Since she has a LOT of the criteria for possible seizure (CP, head trauma, etc) I would ask for an EEG "just to set your mind at ease"

This has happened more than once, it does NOT sound like GERD to me....sure kids with all her issues can DROOP a lot, but this is NOT normal for HER and it alarms YOU.....ask for an EEG to see if there is something NEW going on...

Hang in there

Ginny

I also just found your post in post concussion syndrome and posted a response there too. And I'm glad that someone has posted here.

Donna

Hi,
What you are describing sounds a lot like a complex partial seizure. I have them and I start to get a muscle spasm around my mouth, see colors flashing back and forth in my eyes and then I blank out often I will wander around not realizing what I'm doing until after the seizure is over and then I feel tired and confused for a few seconds.
If I may ask: Have these problems happened with your daughter when she first goes to bed or a little while after she has gotten up in the morning? If they have it could be a myoclonic seizure she is possibly having. If you're interested you can check out these websites for more info.

http:// www.emedicine.com/neuro/index.shtml#seizures

www.epilepsy.com

Here's wishing you and your daughter only the best of luck. May God Bless You Both!

Sue

Umm...who is this guy?? He's a first rate moron! GERD does NOT cause slurred speech!! :mad: Please find another neuro right away, and while you're at it, tell the nsg, too. If this is a new development, the shunt may be the culprit. Are you on any hydro forums? I'd ask them, too, including the one here:

http://neurotalk.psychcentral.com/forum14.html


:hug: :hug: :hug: and good luck!

LIZARD :)

I agree that it sounds like a complex partial seizure to me. When I have cp's I am able to speak as well although it is strained and not always clear (I can generally only say a word or two- like water, yes, no, help etc).
I'm not sure what GERD is, but this definitely sounds like a cp to me.

Dear Mom,
Yes, this sounds like a seizure to me also. My youngest sister had some of these very same symptoms when she was just a toddler. She was put on phenobarb for a few years, and then allowed to wean from the med. She has had no further seizures that we are aware of. She is now in her early 20's.

Keep a close watch, and write down how many times she has an episode. You may want to look into another neurologist.

Best wishes, Dodi

Hi everybody, thanks for all of your help.

I had my last straw with this neuro. See, we see the neurologists at Barrow Neurological Institute in Phoenix and I have faith in their reputation but some are a little too, well, shall I say confident. I fired him and moved over to another neurologist and she was absolutely wonderful. She decided not to order another EEG. Won't help. We are already know she has tons of seizure activity. She ordered levels to be drawn and her tegretol was low, once again. We upped her dose another 5 ml. Gave me some Klonipin wafers and we are good to go. She was an absolutely amazing doctor. She stated that if Emma has another seizure, she is changing meds.

Also, get this, she actually spent 45 minutes sitting with me and reviewing my daughter's MRI imaging WITH me.

I know somebody asked in the other forum (this was originally under the TBI thread but a mod moved it) when she gets them. She has only had these early in the morning. Sigh. My poor baby.

Happy to hear you found another neuro. Seems as though you found one that is there for Emma, and youself. I sure is hard on a mom when her little ones come up sick and some doctors don't seem to trying.

You and Emma are in my thoughts and prayers.

Darlene:hug: