Seizures

Ashley has been having seizures since her first episode of hypoglycemia due to her MCAD. She was in a coma for a few days and they think this was the reason for the seizures. She recently was put on Phenobarb for them but when the dose was given it made her terribly moody and too hyper. The Dr changed the dosage to see if this would help with her behavior but it was not enough to control the seizures (she had one and when we tested her Phenobarb level they were low). He decided we should wean her off and start Tegretol. She had her first dose yesterday along with her 15mg of Phenobarb and she seemed fine.played hard all day (almost too hyper for my liking) and she ate a great dinner.

Shortly after dinner we went to a store and she was running and jumping with her sisters when she stopped playing all of the sudden only to start staring into space. My 5 year old came to me and said Ashley is in a daze (oh how I hate to hear that one) so I had my daughter run out to the car to get the glucometer. Her sugars were 83, which is not cause for concern. I wonder though, do their sugars read normally during a seizure or is that not an accurate reading? Do I have to wait until it is over? Also, I wondered if my glucometer was cold from being in the car and will that alter an exact reading?? Just wondered if anyone had thoughts on that. My concern now is why she is having these seizures when there is no fever present and no hypoglycemia. Has anyone had these problems and what kinds of meds seemed to work for your child? I welcome any feedback.

Lisa 

MCAD mom

Johnny was on Phenobarb when he was 3 and 4 years old and did great for the first year and then wow! He was Mr. Hyper. Never slept and became unbearable and uncontrollable. We then went to Dilantin and Tegretal. Before the Phenobarb he was on Depakote, which he couldn’t continue with because it depleted carnitine. He was also on Topamax, which didn’t work out too well at all. We are now having the most success with Primadone (Mysoline), which breaks down into 15% Phenobarb. We have always seen more seizures with the withdrawal of a drug even though we know to do it incredibly slowly. 00000 Johnny’s seizures could be triggered by lots of different things, but only the very worst ones were associated with hypoglycemia. He also always had very elevated blood sugars with a seizure so sometimes we take a blood sugar after the seizure and than 30 minutes later just to be sure the blood sugar wasn’t an issue. Hope things get better. I know how incredibly frustrating it is to try to figure out what’s going on with the seizures and the meds.

Sue 

MCAD mom

I have a 6 yr old son with an undiagnosed FOD and a seizure disorder. He was a newborn with a hypoglycemic episode 44 hrs after birth with seizures. Ryan was seizure free for 18 months after the initial episode until he had a fever. Ryan had fever-induced seizures 6 weeks apart which warranted seizure medicine. The neurological seizures were explained to me that Ryan had an irritability in his brain which probably was a result of his initial hypoglycemic episode with a blood sugar of 0. His blood sugars were always normal or high with a seizure. Ryan became hypoglycemic even with a D10 IV after a seizure because of all the glucose energy used up only once. Ryan had hypoglycemic episodes with seizures during the age of 3-4.5 yrs which came on very quickly with or without illness. When he had any seizures I had to differentiate between neuro vs FOD seizures with a blood sugar.

In reference to car vs ambulance to the hospital—I always called 911. I live 20 miles away from the hospital. My pediatrician advises it.

Tegretol and Dilantin were used in treatment of my son’s seizures. They were both effective. Tegretol was stopped for side effects. Dilantin was used for 2½ yrs until Ryan had break-through seizures. Depakene has been used for almost a year without major problems. (* Be aware that that can deplete carnitine levels so a carnitine supplement most likely will be recommended).

Maria 

Unclassified FOD