cf and epilepsy

[anonymous]

Hi
My friend has twin boys, one a carrier and one with CF. I can't remember the name of one gene as the consultant said it was the most common CF gene but the other is C886 which apparent is rarer. He is doing OK with his physio and antibiotic though has had terrible constipation problems since he was born. The hospital seem to ignore his Mum's worries though have now reluctantly given him lactulose which seems to make little difference.

My main reason for posting however is because he has started having what appear to be fits. His colour drains, his lips go blue and he falls to the floor with all his limbs shaking. He begins investigation on Wednesday but all signs point to epilepsy. He is not quite 2 yrs old yet. I was wondering if there was any connection with cystic fibrosis and epilepsy. Also he spends an awful lot of time hitting his own head, which indicates that he is possibly in pain.

Any advice or pointers to research particularly would be gratefully received.

thank you

Jacqui

 

[anonymous]

Hi
My friend has twin boys, one a carrier and one with CF. I can't remember the name of one gene as the consultant said it was the most common CF gene but the other is C886 which apparent is rarer. He is doing OK with his physio and antibiotic though has had terrible constipation problems since he was born. The hospital seem to ignore his Mum's worries though have now reluctantly given him lactulose which seems to make little difference.

My main reason for posting however is because he has started having what appear to be fits. His colour drains, his lips go blue and he falls to the floor with all his limbs shaking. He begins investigation on Wednesday but all signs point to epilepsy. He is not quite 2 yrs old yet. I was wondering if there was any connection with cystic fibrosis and epilepsy. Also he spends an awful lot of time hitting his own head, which indicates that he is possibly in pain.

Any advice or pointers to research particularly would be gratefully received.

thank you

Jacqui

 

[JazzysMom]

I also have Epilepsy. I had my first grand mal seizure about 1 1/2 years after my CF diagnosis. Around 8 I guess my first seizure was. As long as I take my meds I have no "known" seizures. When they do testing my little brain still shows epileptic activity. I havent had any head trauma, high fevers etci known to normally to cause this. My doctors (all of them) have always told me there is no connection between my CF & my Epilepsy & that it was just bad timing so to speak. One of my nephews had 3 seizures right before hitting puberty & went on meds until he was thru puberty. He went off the meds & has been fine since. He is currently serving in the U.S. Army in Iraq. I personally always thought maybe it was the meds or something, but never knew anyone else with CF that had Epilepsy to prove a connection.

 

[JazzysMom]

I also have Epilepsy. I had my first grand mal seizure about 1 1/2 years after my CF diagnosis. Around 8 I guess my first seizure was. As long as I take my meds I have no "known" seizures. When they do testing my little brain still shows epileptic activity. I havent had any head trauma, high fevers etci known to normally to cause this. My doctors (all of them) have always told me there is no connection between my CF & my Epilepsy & that it was just bad timing so to speak. One of my nephews had 3 seizures right before hitting puberty & went on meds until he was thru puberty. He went off the meds & has been fine since. He is currently serving in the U.S. Army in Iraq. I personally always thought maybe it was the meds or something, but never knew anyone else with CF that had Epilepsy to prove a connection.