Hi everyone.
I am the mother of a pretty tough 3 year old kid with Epilepsy. He is one of triplets and was born at 34 weeks. He was the first one out and had no complications whatsoever.
My son has his first seizure a year ago, a febrile seizure. The following June he had 2 seizures in one week and since then it has been a real roller coaster.
He started out with partial seizures, an arm jerk. He would cry and pull at his arm, clearly indicating there was some sort of sensation he was not happy about. His arm would be numb or paralyzed for some time afterwards. Within a week of those starting he started having tonic clonic seizures. He suffers from Todd's Paralysis. He gets temporary paralysis on his left side.
From June 2009 - December 2009 he had daily seizures. I am sure there was days when he had a 100 seizures. He had a mixture of tonic clonic, partial seizures, atonic seizures and myoclonic jerks. His neurologist believes he started with simple partial and tonic clonic and somewhere along the way the partial seizures stopped and the myoclonic started.
He started out on Tegetrol and they added Clobazam in August. About once every week or two they would increase the Tegetol and then things would get worse and they would up it again. Repeat many times.
He has had an MRI, 3 EEGS and a video EEG since June. The MRI came back normal, they want to repeat it in another year because they think we was too small and they suspect they might see more in a year or so. The latest video EEG confirmed the myoclonic jerks.
In November his Dr discovered his liver was enlarged. They started to suspect he had a metabolic disorder. He was sent for a million tests and so far everything has come back normal - thank god! He still have to have a retina examination and a few more tests have to come back but they are now pretty confident that he does not have a metabolic disorder.
He has been seeing a neurologist almost monthly since June. The last appointment they said they are just going to assume he has Epilepsy. Once we got the confirmation of the myoclonic seizures we immediately began to wean him off Tegretol and as soon as he took his last dose we started to see improvement. They added Keppra, so he is currently taking Clobazam and Keppre.
He still has a few seizures a week but things are so much better than the last 8 months!
As a result of all the seizures he now requires speech and physical therapy. I am amazed at how tough this kid is, I can think of many adults I know who would not be able to cope with this and he just takes it all in stride. He is a superstar.
I feel so overwhelmed and helpless sometimes, mostly because he doesn't communicate a lot about what he is feeling. The only thing he really says is that is arm is "jerking" or "jumping" and sometimes when he is having clusters he complains about his stomach hurting. He has also mentioned many times that he has a bee in his ear. Aside from this I have no clue what he is going through, memory loss? Confusion? I wish I knew so I could help him.
So where is my award for longest introduction post ever?
ANY insight would be welcomed. I am hoping I will find someone who is going through something similar, it is tough when you don't have anyone else to relate to. I want to make sure I am doing everything possible to help him cope with this.
Thanks!
edited to add.....One more thing! His EEG results show that he has interictal activity. I have a general understanding of what this is but would love to hear from someone with first hand experience with this, wondering if this impacts him on a daily basis, even when he is not having seizures.
I am the mother of a pretty tough 3 year old kid with Epilepsy. He is one of triplets and was born at 34 weeks. He was the first one out and had no complications whatsoever.
My son has his first seizure a year ago, a febrile seizure. The following June he had 2 seizures in one week and since then it has been a real roller coaster.
He started out with partial seizures, an arm jerk. He would cry and pull at his arm, clearly indicating there was some sort of sensation he was not happy about. His arm would be numb or paralyzed for some time afterwards. Within a week of those starting he started having tonic clonic seizures. He suffers from Todd's Paralysis. He gets temporary paralysis on his left side.
From June 2009 - December 2009 he had daily seizures. I am sure there was days when he had a 100 seizures. He had a mixture of tonic clonic, partial seizures, atonic seizures and myoclonic jerks. His neurologist believes he started with simple partial and tonic clonic and somewhere along the way the partial seizures stopped and the myoclonic started.
He started out on Tegetrol and they added Clobazam in August. About once every week or two they would increase the Tegetol and then things would get worse and they would up it again. Repeat many times.
He has had an MRI, 3 EEGS and a video EEG since June. The MRI came back normal, they want to repeat it in another year because they think we was too small and they suspect they might see more in a year or so. The latest video EEG confirmed the myoclonic jerks.
In November his Dr discovered his liver was enlarged. They started to suspect he had a metabolic disorder. He was sent for a million tests and so far everything has come back normal - thank god! He still have to have a retina examination and a few more tests have to come back but they are now pretty confident that he does not have a metabolic disorder.
He has been seeing a neurologist almost monthly since June. The last appointment they said they are just going to assume he has Epilepsy. Once we got the confirmation of the myoclonic seizures we immediately began to wean him off Tegretol and as soon as he took his last dose we started to see improvement. They added Keppra, so he is currently taking Clobazam and Keppre.
He still has a few seizures a week but things are so much better than the last 8 months!
As a result of all the seizures he now requires speech and physical therapy. I am amazed at how tough this kid is, I can think of many adults I know who would not be able to cope with this and he just takes it all in stride. He is a superstar.
I feel so overwhelmed and helpless sometimes, mostly because he doesn't communicate a lot about what he is feeling. The only thing he really says is that is arm is "jerking" or "jumping" and sometimes when he is having clusters he complains about his stomach hurting. He has also mentioned many times that he has a bee in his ear. Aside from this I have no clue what he is going through, memory loss? Confusion? I wish I knew so I could help him.
So where is my award for longest introduction post ever?
ANY insight would be welcomed. I am hoping I will find someone who is going through something similar, it is tough when you don't have anyone else to relate to. I want to make sure I am doing everything possible to help him cope with this.
Thanks!
edited to add.....One more thing! His EEG results show that he has interictal activity. I have a general understanding of what this is but would love to hear from someone with first hand experience with this, wondering if this impacts him on a daily basis, even when he is not having seizures.
Last edited:
