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5yo son with slow brain waves

Mon, 02/25/2019 - 11:04
Hi, everyone. I'm a new mom to epilepsy. My son just turned 5 at the end of December and had his first seizure (to our knowledge) at the end of January. It was tonic clonic, we went to the ER, and everything was normal and looked good. The next day we saw the neurologist. 8 days later he had his second, we started Keppra. He has continued having seizures, but they are apparently tonic clonic seizures that don't spread or reach the typical climax. The first 3 seizures he had were tonic clonic, always at 6:15am, he let out a loud yelp and the seizure lasted roughly 1.5-2 minutes. Now the seizures are more atonic like.....they are irregular, his head drops, his body is limp, he sort of grinds/chomps his teeth, but he is non-responsive. He frequently complains of being sleepy and his tummy hurting after the seizures. He had a normal MRI and had his EEG last week and the doctor had us come in the next day. She said she is very concerned because his brain waves are very slow. There was a lot of info given in the hour she was with us, but it was hard to process when no one predicted anything abnormal would show up. She said he does have primary generalized epilepsy (now added Onfi to the Keppra), but she's very concerned about his slow brain waves and wants us to redo the EEG in early April after he has been on new meds for a few weeks. She also believes (from the EEG) that he is most likely having Absence seizures often and regularly, but we haven't seen them except during the EEG during the hyperventilation test. She said we also need to do genetic testing to rule some big things out. After researching, I realize she's concerned about LGS. My son is very smart, advanced cognitive skills, no behavioral issues or any developmental delays. The doctor said that after spending more time with him, she completely agrees that he doesn't fit any of the "typicals" for the big concerning issues and that she guesses he probably had a seizure early that morning and we just didn't know, so the EEG was abnormal. Would a seizure cause an EEG to have such slow brain waves? I've read that kids with LGS can be completely "normal" (for lack of a better term) before the diagnosis, I just don't see how he could possibly be a candidate for LGS. Does anyone have any experience similar to this?? I also wonder how quickly do the LGS developmental delays and overall decline start happening? Should we already be seeing those? I just don't know that I can wait 6 weeks to see if the EEG is still abnormal and then wait who knows how long after we would have to wait for genetic testing. Any help or advice is greatly appreciated. I feel so lost, helpless, and terrified. I have no one around me that has been through anything like this, but I need to be able to talk through it. My husband is wonderful and we talk often about everything, but we are both blind going through this. Thanks so much!

Comments

Your doc sounds pretty

Submitted by Amy Jo on Mon, 2019-02-25 - 14:00
Your doc sounds pretty aggressive on the genetic testing side. Insurance doesn't always cover that (ours won't unless it impacts treatment and our child has what looks to be a genetic epilepsy but testing would not impact treatment, the epileptologist is certain it's genetic). However our hospital can help people with that but the wait is fairly extensive. Ask directly which epilepsies that she is looking for (better for you to know than guess). That's a good lead in to asking how tests will help them figure this out. On meds EEGs can be less helpful. Even if there's info, there's a possibility that you'll be in a form of limbo for a while, consider building a support network (have friends that can do yoga and walking with you, not everyone can do the epilepsy part) and maybe line up a therapist for yourself. Otherwise, I would consider your doc's background as not all neurologists are experienced in all epilepsies - Is your doc at a pediatric research hospital (even better if she's an epileptologist) or some tiny group that does general neurology? If you like your doc's communication style (which is a difficult line to walk with parents new to epilepsy), that's also helpful info. But if there are difficulties in diagnosis or other problems, ask your doc for a referral to see a pediatric epileptologist if she isn't one.

Thank you for your response.

Submitted by CarmelMom on Mon, 2019-02-25 - 15:22
Thank you for your response. The doctor is supposed to be one of the best pediatric neurologists at a huge research hospital in Indianapolis, near where we live. She said she had 3 other neurologists read the EEG as well because of her concern. I do not know if she is an epileptologist, but I will ask. I do think that if she's not the best doctor for us that we will refer us to another that will be. If the medication doesn't get the seizures under control very soon and she doesn't bring it up first, I will certainly ask for a referral. For the genetic testing, you are correct, it is expensive and I just got the call about cost and how it works. We aren't positive we will do it, but she felt pretty strongly that we need to.  You are correct that I need to ask what she is specifically looking for and what her concerns are. I think we will wait to see how the next EEG goes before doing the genetic testing. If it doesn't show the slow waves or abnormalities she is so concerned with, she may not think we need it and we may hold off on it. It's been a tough road and there's still a lot ahead. Thanks again for the response, I really appreciate it!

Sounds like your son's doc is

Submitted by Amy Jo on Thu, 2019-02-28 - 16:34
Sounds like your son's doc is connected to all the resources he might need for the immediate future! Our first neurologist wasn't an epileptologist but was at a pediatric research hospital and, wow, she really knew her stuff but our child's seizures never fully stopped with meds. Even the first epileptologist that wasn't a good fit was pretty amazing (was close but that was without the full story), and our current epileptologist is beyond amazing. That said, our current doc had a number of years of information gathered by the time we met and he got to see new seizure types that just weren't around when our child was tested early on (before medications so nothing was covered up). It can take time for a more complete story to come out. That can be very frustrating. The worse it is, the faster one may get answers so I remind myself of that when waiting is frustrating, helps change my perspective to something more positive.

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