Discussions By Condition: I cannot get a diagnosis.

Help my daughter...she's nine and having seizure like activity..but NOT seizures!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: junebugboo
  • October 29, 2006
  • 04:00 PM

I am wondering if anyone has had a similar experience....

My daughter is nine and has ADHD and anxiety. She was diagnosed with ADHD at age 3 but did not start meds (concerta) until she was in kindergarten. She has also been diagnosed as having a coordination disorder and a processing problem early in her educational years.

Now the real problem. Last November 2005, I received a call that 911 had been called to school for Mik. I rushed to school and found her face down in her classroom, coherrent, but having jerking movements that were intermintnet. First her left arm would raise and ***k (similar to what happens right before you fall asleep however longer and much more exxagerated). Then it would stop and in about 15 to 30 seconds maybe her left leg would start. There was no pattern to the jerking and it affected all limbs and her head. She kept saying that she really felt weird and hoped the ambulance would get there soon because she felt like she was going to die. She kept begging me not to let her die. Finally, after the ambulance arrived (it took 35 minutes for them to get there five blocks!), the found that her heart rate was 145 and her blood ox level was 72%. She was blue around the mouth and very pale. She kept complaining she was cold although she felt very warm to the touch. After Oxygen was administer she got very cold.

Once the ambulance drivers gave her Oxygen, the jerking movements stopped and she complained of an intense pain in her head (directly above the nose in the forehead region). She had never had headaches before so this was something new. The ER did a EKG, EEG. and found abnormal rythems for both. The ped neuro felt that she was having seizures. We started her on seizure meds. She wore a halter monitor for the heart but the doc felt it was normal. She regressed in school and needed to be retaught many of the lessons she had mastered (although she picked up the info 2X as fast this time).

The Ped Neuro did a 4 hour EEG and found that she was having spikes in her brain wave all the time and her waves only were normal when she hyperfocused on things like video games or movies. Her spikes increased with eyes closed or sleeping. CT scans and MRI and MRI with contrast look normal.

In February 2006, she had another one of these episodes in school. This time heart rate at rest was 140-149 and blood ox was around 75%. Again, oxygen seemed to stop jerking movements. One of the ambulance drivers had seen her first episode and now this one and told me this did not appear as seizures to him. Once in ER she said mom I need to sleep and immediately dozed--tilted head to side and was out--weird. The jerking movements started again and ER Ped said it seemed to be neuro but NOT siezure. Called for Ped NEURO but by time he arrived the jerking stopped.

Mik had 48 hour video-taped EEG and neuro said same things as before. She was checked for Batton's disease--came back negative. Wanted to do a PET scan but insurance...argggg. Did another MRI with contrast--negative. Neuro said it may take 7-10 years to diagnose however, I want to be proactive not reactive. Neuro stopped anti-seizure meds said it did nothing for seizure.

Mik began having short (30 sec to 5 min) intense headaches in July 2006. She was put on Neuronton for migranes and maybe seizures. (mom has migranes)...This has helped some for headaches but not alot. Don't know how it has worked with the spikes.

Anyone had experience with something of this nature? Any suggestions on what we should do?

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1 Replies:

  • http://heart.bmjjournals.com/cgi/content/full/89/3/353 Have a cardiologist do complete workup on her, echo, stress, everything. Holter monitors often miss stuff that occurs with transient espisodes like this.
    hsbrown 1 Replies
    • October 29, 2006
    • 09:59 PM
    • 0
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