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My 17 year old daughter is waiting for a diagnosis
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Andymjf posted:
Hi am new. My daughter is 17 years old and a few weeks ago she started having moments of staring/absences. She dosnt remember them. Then she started having severe pain in her lower back shooting down to her right leg. She would scream and cry. These attacks got more severe and she end up passing out breathing irratic. Then waking up and screaming again. One day the pain was so intensense she had a seizure and she was rushed to hospital. She was seen by 5 orthopeadics and they found nothing wrong with her spine. She even had another attack infront of the doctors. They decided it must be neurological.
Lucy had already been waiting for a MRI scan and has a neurologist. They decided that the scan should be brought forward.Now, still waiting for the scan things have got worse. Lucy no longer has these painful attacks. Out of the blue she has started having Tonic clonic seizure. They started 5 days ago and she has had 30 so far. Sometimes they can be pretty violent ones too.
We know when they are going to start (((as i am writing this lucy is restless right now...she is going to have a seizure soon))) She is restless, fidgity, coughs uncontrollably, then starts giggling sometimes turns into uncontrolled laugher. This can go on for 10 to 20 minutes.
Then she go quiet in her own world and distant. convulsions start. Sometimes shes laughing while convulsing. sometimes breathing is irratic. right leg and left arm jerks.
she wakes up screaming sometimes.crying, laughing. its different everytime. ssometimes she dosnt wake up between seizures. sometimes she grabs for things or scratches her arms. if i try stop her then she starts rubbing her feet together..
the most violent convulsions are terrifying. everything swings and kicks shes all over the room rolling over back and forth.grabbing the carpet with her fists. biting her lips...
then she calms down shes panting and her heart is pounding. she groans and is in a daze. sounds drunk and slurred. Takes her about half hour to come round. then she has to go sleep.
Its all very scary to watch and Lucy dosnt remember a thing. Just how she feels after.
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dancer86442 responded:
Hello Andy,

I'm glad you decided to join us. Your post is Much more detailed than on FB. Thank You for Sharing. Did you know that her laughing, crying, screaming mite be a seizure, also? A fav link of mine posted in Resources : Epilepsy Faqs on faqs.org has the Best descriptions of All seizures & symptoms.

You forgot to mention that You have Seizures, also. I know DRS say not all seizures are Genetic & even when family has seizures too, the cause may not be Genetic. It will be a Long Journey, but, hopefully, Soon, You & Lucy will have Answers.

I know it's not recommended to restrain a person during seizures. But, my BIL used to get behind my Sis & Spoon, thus preventing her from rolling off bed or hurting herself in other ways.

I hope you Both had a Good Nite & Hope you have an even Better Day. HUGS!

Love Candi AKA Jeanne & Dancer.
 
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dancer86442 replied to dancer86442's response:
If you read the Post/comments on teen w/ memory problems, Angie left a Link for On-Line Teen Support Groups. I would recommend Lucy join! HUGS!


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