11 Year Old Son with Seizures

CDC funded page

Not a CDC funded Page

Hi, I am new to all of this and looking for some help, advice. Long story, so please bear with me. My son is 11 years old and has been very healthy. Thanksgiving week 2017 he fell down a flight of stairs and was out of it. Always complained about his right leg getting stuck/stiff/tingling on him. That ER trip was just observation. two weeks later, he was coming down stairs again and screamed for Help. He then rolled down a few steps and was having a seizure. Lasted less than a minute, but he was so out of it and would not really respond to us, eyes open and just a stare. Took a good 20-30 mins for him to fully come to. ER ran CT Scans, Blood work, all normal. Couple of weeks later, he had another episode. Same situation, leg was locked up and he fell backwards down 2 steps, seizure. CT Scan, Bloodwork all good. Initial EEG all good. Seen cardiologist and wore the heart monitor, all clear. Seen Neurologist in Houston, physical exam all good, referred to ortho for evaluation, thinking it was mechanical issue. Ortho checked all fine. He had a seizure one sunday morning in our bed, so we were then convinced this is seizures causing the entire situations. Seen another neurologist. He started him on Keppra, increased to 2000MG. Still having some issues, now almost every night, middle of sleep, he will grab one of us and start breathing real hard, heart racing, and will stiffen up a few times and then he's good. Only lasts 5-10 secs. Some nights it's 4-5 times a night. Others its like numerous times 15-20. We did an overnight EEG last week and they were able to find some abnormalities and said this is part of Focal Seizures. They have now added a Zonisamide along with Keppra. Been on both over a week now and still having issues at night. This has been very stressful, frustrating. Dr says that Hormones would have nothing to do with all this. Any Advice? Why all of a sudden he started having all this?

Comments

relax and research. Do follow

Submitted by just_joe on Mon, 2018-02-19 - 19:01

relax and research. Do follow the neurologists and give him the dosages as required. Understand too that if the seizures are shorter then they are controlling them better then before. I know about focal seizures and do know I had been having them before ever having the grand mal seizure which started the testing I went thru. For all you know he could have been having them during his sleep at night because they can last a second or 2. Mime last about that long now and if I an in conversation with someone they know nothing bout my seizure. All I know is I had it because my right hand felt numb. You are looking at a 3 month period of time with dosage changes and an additional medication added. It takes 4-6 weeks for the medication to build in his body to the therapeutic levels the neurologist want. The addition needs about another 2 weeks. That therapeutic level is there to stop breakthrough seizures from happening in the case a dose is taken late or even missed. So if meds are to be taken 2 times a day those times need to be as close to 12 hours apart. Unless the neurologist said otherwise. Both of the medications he is taking are good. I was on Zonisimide which helped reduce mine. We changed from it to see about a different medication and procedure that might help[ more. I started taking Keppra about 15 years ago and it has been the best seizure medication I have ever used. We coupled that with vimpat and that is where I am today, I'll take a seizure every 8-14 days that no one knows about over the partial seizures I was having years ago. I know what the doctors say about hormones/ I also know what I went thru when I changed from a kid to a teen. Some of that was hormones but at that same time there is a lot of growth. My dosages needed to be increased about 5 times in about 16 months. I grew at least 10 inches in height and gained about 50 lbs. Dosages need adjusting with the changes in the body and that much growth needs adjustments Those adjustments kept me from having seizures because the therapeutic levels were there to stop the seizures. Dosages are generally set with the weight and size of the body.I hope this helps and he gets the assistance he needsJoe

relax and research. Do follow the neurologists and give him the dosages as required. Understand too that if the seizures are shorter then they are controlling them better then before. I know about focal seizures and do know I had been having them before ever having the grand mal seizure which started the testing I went thru. For all you know he could have been having them during his sleep at night because they can last a second or 2. Mime last about that long now and if I an in  conversation with someone they know nothing bout my seizure. All I know is I had it because my right hand felt  numb. You are looking at a 3 month period of time with dosage changes and an additional medication added. It takes 4-6 weeks for the medication to build in his body to the therapeutic levels the neurologist want. The addition needs about another 2 weeks. That therapeutic level is there to stop breakthrough seizures from happening in the case a dose is taken late or even missed. So if meds are to be taken 2 times a day those times need to be as close to 12 hours apart. Unless the neurologist said otherwise. Both of the medications he is taking are good. I was on Zonisimide which helped reduce mine. We changed from it to see about a different medication and procedure that might help[ more. I started taking Keppra about 15 years ago and it has been the best seizure medication I have ever used. We coupled that with vimpat and that is where I am today, I'll take a seizure every 8-14 days that no one knows about over the partial seizures I was having years ago. I know what the doctors say about hormones/ I also know what I went thru when I changed from a kid to a teen. Some of that was hormones but at that same time there is a lot of growth. My dosages needed to be increased about 5 times in about 16 months. I grew at least 10 inches in height and gained about 50 lbs. Dosages need adjusting with the changes in the body and that much growth needs adjustments Those adjustments kept me from having seizures because the therapeutic levels were there to stop the seizures. Dosages are generally set with the weight and size of the body.I hope this helps and he gets the assistance he needsJoe

relax and research. Do follow the neurologists and give him the dosages as required. Understand too that if the seizures are shorter then they are controlling them better then before. I know about focal seizures and do know I had been having them before ever having the grand mal seizure which started the testing I went thru. For all you know he could have been having them during his sleep at night because they can last a second or 2. Mime last about that long now and if I an in conversation with someone they know nothing bout my seizure. All I know is I had it because my right hand felt numb. You are looking at a 3 month period of time with dosage changes and an additional medication added. It takes 4-6 weeks for the medication to build in his body to the therapeutic levels the neurologist want. The addition needs about another 2 weeks. That therapeutic level is there to stop breakthrough seizures from happening in the case a dose is taken late or even missed. So if meds are to be taken 2 times a day those times need to be as close to 12 hours apart. Unless the neurologist said otherwise. Both of the medications he is taking are good. I was on Zonisimide which helped reduce mine. We changed from it to see about a different medication and procedure that might help[ more. I started taking Keppra about 15 years ago and it has been the best seizure medication I have ever used. We coupled that with vimpat and that is where I am today, I'll take a seizure every 8-14 days that no one knows about over the partial seizures I was having years ago. I know what the doctors say about hormones/ I also know what I went thru when I changed from a kid to a teen. Some of that was hormones but at that same time there is a lot of growth. My dosages needed to be increased about 5 times in about 16 months. I grew at least 10 inches in height and gained about 50 lbs. Dosages need adjusting with the changes in the body and that much growth needs adjustments Those adjustments kept me from having seizures because the therapeutic levels were there to stop the seizures. Dosages are generally set with the weight and size of the body.I hope this helps and he gets the assistance he needsJoe

hormones can affect seizures

Submitted by Amy Jo on Wed, 2018-02-21 - 00:48

hormones can affect seizures but that seems to be reported more by women. many kids have a change in seizures around puberty (so, yeah, hormones but other brain changes could matter as well, the point is that no one really understands all the issues around epilepsy). for some seizures start around puberty, for others it is when seizures hopefully go away, but that depends more on the type of epilepsy. sometimes things just get worse around puberty (so get noted) where the previous milder seizures were missed.but it seems to be a disconcerting issue, so many people mention how the person was "completely healthy" before seizures. guessing that happens in other conditions but since less is understood about epilepsy, there's some additional cultural baggage there somewhere. there's no fairness in life with respect to health conditions (that's why I favor universal health coverage because there are a lot of conditions which are not from poor lifestyle choices and I would not wish inability to get care on anyone). some epilepsy is genetic, some is from damage. genetic forms start at different ages depending on the kind and things may look completely fine before that. for epilepsy that results from an injury, there's often a delay of years between the injury and the start of seizures. for many people, they just never figure out why someone has seizures.

There are epilepsy syndromes

Submitted by mereloaded on Fri, 2018-02-23 - 18:53

There are epilepsy syndromes that start around puberty (JME for example). The puberty itself doesn’t cause epilepsy so the neurologist is correct, but it is true that the changes caused by puberty hormones can trigger seizures. My son started at 15 years of age after being the picture of health. He got diagnosed with JME. He is much better now that he is out of puberty (he will turn 20 next week). My husband’s cousin (unrelated to my son) has epilepsy and she had it really bad in her teenage years. She has been stable since her twenties.The advice I have is to find patience somewhere. Finding the correct treatment can take time to achieve. Full fat diets, fish oil supplements helps.