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Posts (3)

Jun 6, 2016 · NF1 and Epilepsy related in Epilepsy & Seizures

started if with atonic seizures, with jerking of the arms (generalized).
At times now with the medication we still notice some forms of absence seizures and simple partial seizures…

I was told that to ensure her learning development is not affected, her seizures have to stop,,,,

Jun 4, 2016 · NF1 and Epilepsy related in Epilepsy & Seizures

Thanks so much for the reply. Regards the nf1.
With regards to further tests we have carried out the following and obtained the following results: –

EGG – Sibclinical seizure
MRI – Negative
CT Scan – negative
Blood test – Negative
URINE – ok

Just these weeks, we have notice a few form of minor and subtle seizures.

Would like to seek advice on the following: –

1) was told that if stay seizure free for 2 years, she van slowly tail off her medication. How as parents can we help her grow our off seizure

2) will she grow out of it?

3) as nf1 is a progressive disorder, is this linked with her epilepsy?


Jun 4, 2016 · NF1 and Epilepsy related in Epilepsy & Seizures

My baby girl (now 7 months) has been diagnosed with epilepsy at the age of 5 months. She is currently on sodium vaporate and clomozapame. It seems to control her jerking seizure quite OK but at times we notice that she still has some form of complex partial seizures..
In addition to this, we strongly believe she has neurofibromtosis due to her cafe olio spots on her body and also I believe she inherited the spots from me.

Anyone can help with the above mentioned?