Mom of 17 year old, who was just diagnosed

[LifeIsInteresting]

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, hi. I'm looking forward to your guidance, help and friendship.

[seizuregirl]

Hello there, My name is Ali, and I can understand what she's going through.
Although i'm 31, I deal with loss of bladder control when I have my seizures, not all of them, although that is when I know I've had one. My many doctors I've have/had for the past 7yrs or so haven't actually 'verified' the type I have, except for the 1 or 2 grand mals I've had, which is frustrating. I've had EEG's, EKG's, CAT scans, and others over the years which I can't remember.
I've been on MANY different medications and alot of them really do make you extremely tired, but they made me irritable which is frustrating when all I wanted to be was alert and happy, but I couldn't stop it, because I wasn't aware that I was being rude.
I'm not trying to depress you, I'm just hoping that telling you what I've been through, and reading what others may have, may help you at some point in the future or now.

[seizuregirl]

And I apologize, I had meant to say, and no, I'm not making this up , 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.

[RobinN]

I agree... Life is Interesting... Welcome

My daughter began having seizures at the age of 14. She did not have any severe medical issues before, though she did have speech and language issues and processing problems. She was a happy child and developed normally overall.

You can read her story which is linked below in my signature.

Long story short... after trying meds, and going the conventional route, my first instincts were correct. Following a very careful nutritional plan, and cleaning up her diet, my daughter is remaining seizure free. You mention an eating disorder.. which calls out a red flag to me. There are many causes within the digestive system that will cause the symptom known as seizures. It is something to consider. I know families that deal with PANDAS also are using a nutritional approach.
Perhaps you have already gone this route, though you didn't mention it. All I can say is that it has turned my daughters life around, and she is able to now consider a life without seizures.

Again, welcome to CWE. I hope you find the support you are looking for here.

[Nakamova]

Hi LifeIsInteresting, welcome to CWE!

Topomax is known as "Dopomax" -- so yes, it can be s bit of a knock-out med. And despite what your daughter's psychiatrist said, fatigue is one of the most common Topomax side effects. If the side effects are problematic there are other meds to consider, as well as the nutritional approach Robin mentions above.

Best,
Nakamova