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Something bizarre happened (Read 3712 times)
Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Something bizarre happened
Jan 23rd, 2009 at 8:13am
 
My daughter had her surgeries Nov 5 and Nov 18th. Last night i helped her start her bath water to take a bath then left the bathroom. When she didn't come out of the bathroom in about 45 minutes i went to check on her. She was sitting in the bath tub and water was flooded the floor, even went through the vent and flooded the basement. I asked her why she ran the water over and she said "well what was i suppose to do"? I said to her "shut the water off" and she said "i did". I watched her continue and she would stare as if she didn't know what to do next. I could barely get her up out of the tub.
I had noticed at supper, her hands were shaky. Could she be having a seizure or TIA. She has been taking baths without problems. She has cognitive defecits from her strokes during surgeries. Her BP after the incidents was 123/68. She is on BP meds to keep it up. I have tried to wean her BP med down some because it was over 148/100 at times. Maybe she didn't get good blood perfusion last night! I am not sure what happened but it scares me.  has this happened to anyone, just weird things. I will call the dr today and we are going to get bloodwork done this morning so we will know if her seizure med is therapeutic. Embarrassed
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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Becky
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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female
Re: Something bizarre happened
Reply #1 - Jan 23rd, 2009 at 12:46pm
 
I would not call a doctor I would go to the ER ASAP!!!!!!!! That sound like she might have had an episode so to make sure she is realy okay. I would drop everything and go!!! I will pray for your daughter.
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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Mar
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Re: Something bizarre happened
Reply #2 - Jan 23rd, 2009 at 1:40pm
 
My niece had a similar incident that scared us. About a year or two after her surgeries, she was doing great, but her Mom went in to check on her one morning and she was sitting on the floor staring. Her eyes were open and dilated, and totally unresponsive at first, then she starting slurring her words, and they had a hard time getting her up, they said she was like a rag doll, but then she fell asleep and when she woke up she didn’t remember anything or what happened and seemed better. Her parents took her to the local hospital, but were not at all comfortable with not having any answers as to why or what happened, so they flew to CA to see Dr. Steinberg, her surgeon. After all the appropriate tests, they said it was a seizure, and put her on additional seizure meds, and to my knowledge she hasn’t had any seizures since, but staring alone can be a seizure and you can have them in your sleep, so I guess you never really know how many seizures a MM patient has had, but for some reason MM patients are sensitive and do have seizures after surgery.

I’d certainly wants some answers too.

Mar
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Michele
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I love YaBB 1G - SP1!

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Yankton, USA, SD, South_Dakota
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Re: Something bizarre happened
Reply #3 - Jan 23rd, 2009 at 5:53pm
 
I would of course still get her checked!  If my BP was that low I would probably pass out, but then I haven't had surgery either!
Still praying for you all!
Michele
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Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Re: Something bizarre happened
Reply #4 - Jan 24th, 2009 at 10:57am
 
Amy seemed to be doing much better yesterday. Talked to 3 different drs. All seem to refer to a neurologist. Amy has not seen a neurologist since her release from rehab jan. 2 so we have an appt monday am. All seem to think she might have been having seizures. She is on the maximum dose of keppra so had a keppra level done friday. Not heard back yet. They must not be too worried about it because i have not got the results back even though i was told i would get them by the end of the day yesterday. Well i guess we will know more monday. Thank you for all the prayers and suggestions.
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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leemyd
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Daughter: STA-MCA Bypass
at age of 9 in 2007

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Herndon, USA, VA, Virginia
Gender: male
Re: Something bizarre happened
Reply #5 - Jun 3rd, 2009 at 11:04pm
 
My daughter had surgery with Dr. Steinberg in August of 2007.  All post surgery tests indicate that the surgery was success.  However, she continued to have what initially appeared to be TIAs, once or twice a month.  After many trips to the emergency room, MRIs, MRAs, SPECTs, angio, EEGs, and even therapy with a child psychiatrist, we've found no clear answers.  Our local Neurologists recommended Keppra, an anti seizure medicine.  Although this appeared to work for a brief period, her symptoms have returned.  In fact, her last episode lasted about 30 minutes and didn't stop until she got the emergency room.  Symptoms start with numbness in the hands, arms and travels to her face and tongue accompanied by a migrane headache.  Neurologists recently suggested that the numbness may have been caused by migranes as opposed to a TIA or a seizure.  We're thinking of taking a trip to Stanford prior to our 3 year post surgery follow up visit but don't have high confidence that we'll find a clear answer.  Other than these episodes, she's a perfect 10 year old daughter.  Does great in school and one of the stronger swimmers in her swim team.  She's learning to manage, a real trooper, but still frightening not knowing the cause.  Sorry I don't have answers but hope my sharing provides some comfort.      
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PaulaMart
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I Love MM.com!

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Spain
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Re: Something bizarre happened
Reply #6 - Jun 10th, 2009 at 5:42am
 
Michael,

I sent you a personal message last week, did you see it?
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