We FINALLY Got A Diagnosis!!!


Roll With It
We saw J's neurologist today for the first time after the last of the EEGs today. FINALLY we have an actual diagnosis. She does NOT have Absence Epilepsy. Apparently he found a very rare spike and wave formation in her brain patterns. She has a rare type of idiopathic epilepsy. He does not think it is the answer for all of her symptoms, and I agree.

He does not want to do too much at once. He put her on an anti seizure medication and she will titrate up on that. That is all we are doing for now. It is one she took in the past and tolerated very well, one I take and tolerate well also (I take it for nerve pain).

He discussed doing Cognitive Behavior Therapy, which I have zero problems with. he will recommend someone depending on how the medication works. He did say it was a very good thing that we did not allow her to learn to drive as she could have killed herself and others. If she is seizure free and medication compliant for six months, she will be allowed to learn to drive!!!!

This is such a HUGE HUGE HUGE thing for us!!!! We went and got her medication right away, and called my parents to let them know. Then we went out to lunch to celebrate. It may seem a strange thing to celebrate, I am sure. But we have looked for an answer for so many years, and been told it was 'all in her head', or basically made up, since she was in junior high. She has done every psychiatric/psychological therapy they asked of her to the point that the therapists and shrinks couldn't figure out why she was in their office. They couldn't figure out why she wasn't treated by a neurologist, but no child neurologist would treat her. Some of you may remember that we saw every child neuro in our entire state and several in neighboring states. Then we had to wait until she was 21 to see an adult neuro because at 18 you are still a child!

So today is a day we waited a long time for!!!!! I have to do a bunch of research on this new diagnosis, but that is okay. I am just so thankful that he saw the seizures on the 3 day EEG.

New Leaf

Well-Known Member
SS, I am so very glad for you and J that after so many years you have gotten an answer. What a frustrating journey you have been on! Prayers going up that the medication works!


Well-Known Member
Susie, I am so happy for you that at long long last you have actually got a diagnosis. I hope the medication proves itself for J. As they say, from now on "onwards and upwards"!!!

Love, Esther

pigless in VA

Well-Known Member
Sounds like a fine reason to celebrate to me. I'm glad you have some answers; medical issues can be intensely frustrating.