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My daughter is now 17 years old.
She was a preemie (born at 32 weeks, weighing 2 1/2 pounds). She had cerebral palsy (not that they used that phrase to me, in case I would sue), and was paralyzed on one side.
I quit my job to care for her. We did extensive physical and occupational therapy, and my daughter was able to gain function and was pretty much "caught up" by age 4 (although drastically delayed).
Then in 2nd grade, she developed PANDAS (Pediatric Autoimmune Neurological Disorder Associated with Strep), which, if anyone wants more info on, I'll be happy to discuss.
We started her on all kinds of meds. Zoloft. Strattera. Even a hypertension med that was used off-patent. Oxybutinin (for nighttime enuresis). She was also diagnosed with ADD, inattentive type, among other things.
She is bright, but has not been successful in school, so was classified, and put in special program (for smart kids with "emotional" problems, although most of her issues were neurologic rather than behavioral...sometimes it's hard to tell which things she can control, and which things she can't).
After a bout with an atypical eating disorder, we got a new psychiatrist, who recommended a 1 hour EEG, which turned out to be abnormal.
Turns out that what we thought was "inattentive type" ADD, was probably due to seizures. Mild, localized seizures would expain everything from her "zoning out," memory lapses, and even bed-wetting (which at almost 17 years old, still happens almost nightly) as seizure activity could be tightening/relaxing her bladder. It's like a unified theory of every issue that my kid deals with. For the first time in a long time, I feel a ray of hope.
We've only begun testing. MRI coming up, and then a 72-hour video EEG (and fast-wean off of the meds she's been on).
She was started on topomax, and it's absolutely SEDATING. She's sleeping constantly. Falling asleep in school. Coming home from school and sleeping until morning. The psychiatrist said that it isn't a typical side-effect, but can't say how the topomax is interacting with her other meds. Even with an extremely low dose (25 mg), she's like sleeping beauty (and irritable when awake).
I feel like I don't know anything, and most importantly, don't know what questions to ask, or where to start.
So, :hello: hi. I'm looking forward to your guidance, help and friendship.
She was a preemie (born at 32 weeks, weighing 2 1/2 pounds). She had cerebral palsy (not that they used that phrase to me, in case I would sue), and was paralyzed on one side.
I quit my job to care for her. We did extensive physical and occupational therapy, and my daughter was able to gain function and was pretty much "caught up" by age 4 (although drastically delayed).
Then in 2nd grade, she developed PANDAS (Pediatric Autoimmune Neurological Disorder Associated with Strep), which, if anyone wants more info on, I'll be happy to discuss.
We started her on all kinds of meds. Zoloft. Strattera. Even a hypertension med that was used off-patent. Oxybutinin (for nighttime enuresis). She was also diagnosed with ADD, inattentive type, among other things.
She is bright, but has not been successful in school, so was classified, and put in special program (for smart kids with "emotional" problems, although most of her issues were neurologic rather than behavioral...sometimes it's hard to tell which things she can control, and which things she can't).
After a bout with an atypical eating disorder, we got a new psychiatrist, who recommended a 1 hour EEG, which turned out to be abnormal.
Turns out that what we thought was "inattentive type" ADD, was probably due to seizures. Mild, localized seizures would expain everything from her "zoning out," memory lapses, and even bed-wetting (which at almost 17 years old, still happens almost nightly) as seizure activity could be tightening/relaxing her bladder. It's like a unified theory of every issue that my kid deals with. For the first time in a long time, I feel a ray of hope.
We've only begun testing. MRI coming up, and then a 72-hour video EEG (and fast-wean off of the meds she's been on).
She was started on topomax, and it's absolutely SEDATING. She's sleeping constantly. Falling asleep in school. Coming home from school and sleeping until morning. The psychiatrist said that it isn't a typical side-effect, but can't say how the topomax is interacting with her other meds. Even with an extremely low dose (25 mg), she's like sleeping beauty (and irritable when awake).
I feel like I don't know anything, and most importantly, don't know what questions to ask, or where to start.
So, :hello: hi. I'm looking forward to your guidance, help and friendship.
, but I have a twin who has hydrocephely and we were born 2 and a half months premature, My twin weighing 2lbs 4ozs, and I was 1lb 8ozs, we were in intensive care for 3 months until the doctors felt we could go home.