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chavlin517
member
Intro and question
chavlin517
member
Hi,
My son was born in July and at 4 weeks old he presented that something was wrong by grunting and labored breathing. It turned out he had coarctation of his aorta and this ended up leading to a massive intracranial hemmorage. He had his coarctation repaired and had a clot the size of an apricot removed back in August. He also had external ventricular drains for 5 weeks out of our 6 week hospital stay.
Last week he ended up getting a shunt put in as his ventricles has grown larger and our neurosurgeon did not want to push it and end up putting it in emergently. His brain has quite a bit of damage, but he's been doing quite well despite that. He eats, breathes, and babbles. We are also fortunate enough to take him to PT and OT everyday. He is otherwise pretty far behind especially with his vision and he doesn't smile.
He started having seizures around Thanksgiving and was already on Keppra, but we recently added Trileptal and they seem worse. Has anyone experienced this? Also, how long did it take or how many meds did it take to get them under control?
Thank you!
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Re: Intro and question
first, congrats on your son!
seizures are different in everyone so it all depends on the kind of seizures he's having and what course the doctor's prefer to take. my son has had complex partial seizures since birth and has always been on keppra. we had a course of trileptal that really didn't help. a year ago we added phenobarb. while he is not completely seizure free he is well managed (he has a genetic syndrome in which seizures are a component of and his seizures usually happen when he is tired so we "know" them). i would just keep your neuro in the loop and definitely let them know if you see a change in frequency/duration/presentation of the seizures. no one likes to see seizures but sometimes it takes a lot of trial and error with meds to get to a good place.
hope that helps some!
My DS has complex partial seizures with no known cause. He was on Keppra alone for 5 months, then had a few severe breakthrough seizures and we've since added Tegretol (Carbamazepine) and, like PP's DD, he isn't seizure free, but they are mostly controlled and generally mild when they happen. Its hard trying new meds and dosages, hopefully you are able to get a good handle on it for your DS!