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2 yr. old with leg spasms
2 yr. old granddaughter started having leg spasms in April , 2007. She lies down, rigidly extends her legs and twists her feet up and back. She may not do this for 1-2 days, and then may do it 18 times within the hour, then, do it 24 times a day.. for days.
It fatigues her.
She can often be distracted from it with your voice, or touch, or rubbing her legs. But, she may go right back into it again. Occurs in highchair, and recently during nap. While spasms happen, she is alert, watching TV or sister, or patiently waiting for this 'demon' to release her. She does eye contact during. Lately though, she has been frightened by it, running to us to be held just before or after it happens. She will grab her foot and say that it hurts. Mother had a difficult pregnancy..hernia-gallbladder surgery immediately after birthing.
Baby's development was normal: she walks, runs, dances tippy-toes, crawls, climbs without any indication of a problem...for hours. Always going... like the "Energy Bunny".
As a pre-school teacher, I can see that she is quite intelligent: singing countless songs, talking, naming, pointing, relating,etc.... learning sign language as well as Spanish and French.
Her family physician referred us to a Neurologist, who watched the DVD of her spasms and immediately diagnosed it as Dystonia. EEG results were normal. MRI results were normal, but for a thickening prominent sinus and a straight durl-venus (?).She said, due to allergies ,probably. Blood test shows low levels of copper, and something said about ceruloplasmin protein in blood..
Otherwise no result to be concerned with in regard to seizure or spasms causes.
Doctor discounted Dystonia, is through with testing, basically released her, but wants to put her on Trileptal.
Our fear is that if we quit the testing, and just medicate, we'll find out months or years later that if we had done 'something' sooner, we could have saved her from a painful future. What should our next step be?
Answer:
2 yr. old with leg spasms
Hi camilla,
Sorry to hear of your granddaughters spasms. This must be painful for her needless to say scarey. After reading of this condition and the neuro previously diagnosed as such, I was wondering why now she says no. There is research going on for the exact causes, there are different kinds etc. Link included.
The trileptal is often used in children with seizures, which dr. says not to be concerned??? I also realize such medications can be used for different symptoms then the norm. You can search this drug via the search tool too.
I guess I would persue a diagnosis even a second opinion. Ask this Dr. why the seizure medication. All tests are negative so far for seizures??? Also ask neuro if there is any other testing she would recommend. If no further testing by this neuro get yourself another, one you can communicate with and work through this for a proper diagnosis. Good Luck and sorry I can't be more help.
Look for research being done and clinical trials also but first you will need a diagnosis.
Purple98Lady:smile: