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Lennox-Gastaut Syndrome - our son may have it. Help.
Tue, 02/01/2005 - 21:24Hi,
My husband and I have a 28 month old son (Rylan) who has been experiencing seizures since Nov 14, 2004. He has 8-12 episodes in a 24 hour period where his eyes deviate up to 20+ times in a five minute span, body tenses, sometimes loses balance. He had an EEG on Nov 19 which had more abnormal activity than the doctor was expecting. After having a pediatric neurologist look at the results they are considering the diagonosis of Lennox-Gastuat Syndrome. Rylan was started on Valproic Acid on Nov 20 and was increased today to 3 ml-150 mg/3 x day. The doctor would like to try to get his seizures under control asap.
Rylan does not have any of the pre-existing condtions or problems typically associated with LGS. Is there anyone else out there with similiar circumstances?
We are waiting to see the pediatric neurologist (hopefully within the month). So far the only tests that have been done are the EEG and bloodwork (liver function, CBC, Valproic Acid Level). Are there other test that should be done?
Has anyone else experienced biting with the onset of an episode. I realize he is 2 years old but he never was a biter until September (about the same time we first noticed that he would stare at one of us long enough to make us feel weird and then he would have a little pee-shiver and break out of it).
We live in Regina, Saskatchewan, Canada.
Any information, thoughts, advice, suggestions, whatever and especially prayers would be most welcome.
Thank you,
Jacqui
Comments
RE: RE: Lennox-Gastaut Syndrome - our son may have it. Help.
Submitted by Ted_Jacqui on Wed, 2004-12-08 - 14:13
Wendy,
Thank you so much for your response. As you know it helps tremendously when you can talk to someone in a situation even remotely similar to your own. Thank you for the info about the drug your son takes, I will mention it to Rylan's doctor.
When you say his eyes deviate 20+ times, I'm not sure what you mean by that. What happens is that his eyes involuntarily roll up, back and to the right during a seizure. Each eye roll last for 1-2 seconds and it happens over a five minute period.
I have been babysitting a little 16 month old girl since June and last night I had to tell her mom and dad that I can't look after her anymore as I need to be able to focus on Rylan. It was hard to do but just before he has a seizure he gets more active and usually takes it out on her (agressive hugging, head holding and sometimes biting). So it wasn't being fair to either one of the kids to keep going on like that.
Thanks again,
Jacqui
Wendy,
Thank you so much for your response. As you know it helps tremendously when you can talk to someone in a situation even remotely similar to your own. Thank you for the info about the drug your son takes, I will mention it to Rylan's doctor.
When you say his eyes deviate 20+ times, I'm not sure what you mean by that. What happens is that his eyes involuntarily roll up, back and to the right during a seizure. Each eye roll last for 1-2 seconds and it happens over a five minute period.
I have been babysitting a little 16 month old girl since June and last night I had to tell her mom and dad that I can't look after her anymore as I need to be able to focus on Rylan. It was hard to do but just before he has a seizure he gets more active and usually takes it out on her (agressive hugging, head holding and sometimes biting). So it wasn't being fair to either one of the kids to keep going on like that.
Thanks again,
Jacqui
RE: Lennox-Gastaut Syndrome - our son may have it. Help.
Submitted by wendymartinez on Tue, 2004-12-07 - 10:48
Hi,
My son was diagnosed with Generalized Epilepsy about 2-3 months ago. He just turned 4 and was having absence seizures (where he stares off for a few seconds, it was hard to figure out they were seizures at first). He had an MRI and EEG and actually had a seizure during the EEG. I don't have much knowledge about Lennox-Gastaut Syndrome (maybe someone on this site has more info), but it sounds a lot like my son. When you say his eyes deviate 20+ times, I'm not sure what you mean by that sometimes my son would look up during the seizure and a couple of times he would move his arm repetativly or blink his eyes and sometimes looses bladder control if his bladder is real full. Anyway, he has been put on Lamictal and so far has worked real well and the only reason I bring this up is that on the label of Lamictal, it stresses that its primary purpose is for Lennox-Gastaut Syndrome, maybe something to try if this current med doesn't control the seizures. The major side effect of Lamictal is a very bad rash that can become very serious in a very small amount of people, but apparently if you start very slow and up very slowly it minimizez the chance of development.
I really don't have a lot of info for you, but wanted to tell you about my experience, as it sounds a lot like yours. I think a second opinion is always a smart move, especially since you feel he doesn't have the prexisting sypmtoms typical of LGS so maybe you'll get some more info from the Neurologist. My prayers are with you and your family. I know this is so hard waiting for answers and waiting to see if medicine is going to work without any side effects. Take care and feel free to contact me if you need someone to talk to.
Wendy
Hi,
My son was diagnosed with Generalized Epilepsy about 2-3 months ago. He just turned 4 and was having absence seizures (where he stares off for a few seconds, it was hard to figure out they were seizures at first). He had an MRI and EEG and actually had a seizure during the EEG. I don't have much knowledge about Lennox-Gastaut Syndrome (maybe someone on this site has more info), but it sounds a lot like my son. When you say his eyes deviate 20+ times, I'm not sure what you mean by that sometimes my son would look up during the seizure and a couple of times he would move his arm repetativly or blink his eyes and sometimes looses bladder control if his bladder is real full. Anyway, he has been put on Lamictal and so far has worked real well and the only reason I bring this up is that on the label of Lamictal, it stresses that its primary purpose is for Lennox-Gastaut Syndrome, maybe something to try if this current med doesn't control the seizures. The major side effect of Lamictal is a very bad rash that can become very serious in a very small amount of people, but apparently if you start very slow and up very slowly it minimizez the chance of development.
I really don't have a lot of info for you, but wanted to tell you about my experience, as it sounds a lot like yours. I think a second opinion is always a smart move, especially since you feel he doesn't have the prexisting sypmtoms typical of LGS so maybe you'll get some more info from the Neurologist. My prayers are with you and your family. I know this is so hard waiting for answers and waiting to see if medicine is going to work without any side effects. Take care and feel free to contact me if you need someone to talk to.
Wendy