neonatal refractory epilepsy

Dear Doctor
I am a mother very worried for her son. I am living in Montreal -
Canada now. I am writing to comment you the case of my baby who only
is 4 months years old. I had good health in my pregnancy. My baby
was born in October 9 last year, at birth he never had any health
problem. When he was 2 month started the seizures. Their are
generalized tonic- clonics more tonics than clonics, duration
approximate from 20 seconds to 2 minutes. He had been studied in the
Hospital St Justine in Montreal – Canada. The screening for genetics,
metabolics and infectious diseases is normal. The neurologist hadn't
found nothing, only the EEG shows epileptic activity in both occipital
lobes. The first evocades potencial ofthalmologic exam is normal. My
baby had been hospitalized for 2 month because the seizures are
difficult to control. Now he is taking 6 medications : phenobarbital
15 mg BID , sabril 250 mg am y 500 mg pm, keppra 500 mg BID,
topiramato 12 mg am y 18 mg pm, piridoxal fosfato 100 mg TID and when
he has many seizures I give him ativan 0.5 mg, howewer my baby
continues with the seizures, although his development until now is
normal. The neuropediatricians had told me that my baby has refractory
epilepsy but I want to know if I can do something to control the
seizures. I hope you can help me or advise me. My husband and me will
do whatever' s necessary. Thanks very much to pay attention.

Isabel Cristina Cardenas Moreno

[dollyn]

Hi  I am not a Doctor but a mother with two children now having Seizures.\

I understand you and your husband being scared and worried abut your little baby boy.
I worry everyday.My son to is on a lot of medicines to try and stop the Seizures and still every day has Seizures..

Make sure the Doctors keep an eye on your son blood levels for his medicines and that the medicine is not hurting anything else in his little body.

It is not easy because it can take time to try and find the right medicines and I have dealing with this since 2006.

I pray a lot and think that with out my faith in god I would be a lot worse than I am.coming to places like this helps to talk about what you are feeling and going threw.I also ended up going to see a Councilor to try and help deal with this all.

God please bless  this little baby boy and others who are going threw the same things and that some day they will find a way to help everyone who has Seizures.God please help the Doctors to help heal this little boy and others and there family's to deal with all the things they are going threw with this there loved ones being sick.Amen