Sleep seizures 11 yr old daughter. Scared!

[LisaBee]

Hi! New here. My daughter who is 11 started having weird "episodes" in her sleep. Usually shortly after falling asleep. She would make a facial grimace, her feet would extend forward, open her eyes mumbling or grunting (sometimes sounds like laughing), make bizarre hand/arm movements (like she was directing an orchestra, rolling something between her fingertips, pointing), eyes twitching at times, they lasted for about 15-20 seconds and she would seem to be awake and respond if I asked her something, reposition and go back to sleep. These would happen 1-5 times a night. Took her to Ped they set up sleep study. Sleep study/Neuro called said they didnt think she needed one and to bring her in. Saw the Neuro he said he thought she was having Parasomnias. I didnt agree. So I started video taping the "episodes". On June 9 I woke up to her having a full blown Grand Mal seizure in her sleep. Called 911. All tests came back normal. EEG, CT, MRI, bloodwork. They started her on generic Keppra and ordered sleep EEG. Still waiting on those results. Meds not helping much. I watch her sleep and am driving myself crazy. Any input will help. I just feel so alone and scared. Thanks!

 

[Abynorml]

Your not alone. This is a great place for info. It's not surprising the EEG results and tests came back normal, that happens alot. Best advice is to try to keep calm, and to write everything your daughter does in a journal, diet, amount of sleep, and any changes in her life like menstrual cycles if she's old enough to have started that, the more info you have the better you and your doctors will be able to track down what's happening. Good luck to both of you.

 

[nicholas:)]

Hi! I've been experiencing nocturnal seizure for a couple of years. Just as you explained them really - just before falling into sleep, 10 - 60 mins as dosing before I could fall asleep. My mri and eeg's came back as normal and I was told it was stress related. Got a second opinion and was eventually put on tegretol 800mg and clomazepam 5.5mg and my seizures dropped from 109 a month to 5 a month.

 

[LisaBee]

Thank you both so much for your replies! Im so thankful someone reached out to me. I have so much to learn and I'm very glad I found this site!

 

[Fedup]

LisaBee

Your in the right place, here people will listen. Remember what was said, keeping a journal, writing everything down, its not easy what you are going through, but keep at what your doing, it will pay off in the end

 

[LisaBee]

Nicholas, are your seizures strictly nocturnal? Have you ever had one during the day? Im terrified she will have one during the day at school when Im not there. I hope we can get a correct diagnosis and treatment before school starts. Thank you Fedup for the welcome!

 

[nicholas:)]

Hi! Mine are strictly nocturnal - day time if I'm dosing into sleep but yes, classed as nocturnal seizures

 

[KarenB]

Our son had mostly nocturnal seizures from age 1 to now. He usually had them around 2 or 3 in the morning, or around 6 in the morning, just as he awakens. Keppra did not help him. He did have seizure control with Topamax for 3 1/2 years, but then stopped working. Trileptal did not help -- but caused terrible side effects. Depakote did not help, but caused liver problems. Finally put him on Ketogenic diet, and after the first 6 weeks, he became seizure free for 11 months. Then he had a bad illness, which caused some setbacks. Trying to get that control back. Right now, I'm sleeping in his room with him. In the past, we put a baby monitor in his room, but this week he's been having a seizure almost every night. Often his nightime seizures are preceded by hyperactive behavior or autistic like behavior prior to going to bed.

 

[LisaBee]

Hi KarenB!! Thank you so much for the reply!! We are on Keppra now with not much luck either. We drew labs today to check levels and so now I wait until Monday for the next step. Im hoping a new med, since this one isnt very helpful with control. My daughters seizures are alot like yours time wise. Is he off all meds now and just the Keto diet? What kind of seizures was he diagnosed with? We have no official diagnosis yet. Very frustrating!

 

[KarenB]

He never had an official diagnosis like Dravet Syndrome or anything like that -- just "Intractible Epilepsy." He had tonic clonic (Grand Mal) seizures that lasted several minutes -- almost always at night and upon awakening in the morning. However, in the 6 months prior to initiating the diet, he started having a 2nd kind of seizure -- I guess you'd call it a partial -- he would scream out, and then have a fixed stare, and sometimes, if he were standing, he would collapse (but not lose consciousness). He did have these in the daytime, and they only lasted about 10 seconds at most. After he started the diet, and was seizure free for about 4 months, his neurologist began a very slow wean off his meds, because they were causing liver damage, and also problems with his blood cells. So, he's been completely off meds for about 6 months now, and only on the Keto diet.

 

[nicholas:)]

I too had the vocalizations, the scream outs whilst conscious - they come with an 'electric' buzz in the head, sometimes with other symptoms. Mine are controlled with Tegretol and Pregbalain. I was having up to 100 a day before I Started the meds last year, now I'm down to 5 a month. I hope things work out for him and yourselfs as parents.

 

[KarenB]

Nicolas, that's interesting. Our little guy is now non-verbal, so we don't really know what he's feeling or experiencing when he's having the seizure.

One interesting point -- when he was on an EEG, the screaming part didn't register as a seizure on the EEG -- but the fixed stare part did -- the neurologist said the spikes or whatever on the EEG didn't start until after the screaming stopped. So...they seem very involuntary, but are apparently a precursor to the actual seizure (he usually does the screaming thing right before having a Grand Mal as well)

 

[LisaBee]

Karen, my daughters "crying" episodes (2x) was picked up on EEG as more Parasomnia like no clear epiletiform during study. This precedes her events also. Very interesting.

 

[soehls]

Lisa, how is your daughter doing? Night seizures sound so scary, I really feel for you.

 

[LisaBee]

Hi Soehls!! She is about the same, however we started to see a Pediatric Neuro Wednesday so Im confident she can help us. My Pediatrician and local Neuro werent helping much. We checked the blood levels of her Keppra Friday so hopefully tomorrow we can change or up some meds. We have a sleep deprived EEG scheduled for the 17th. Im still a wreck, cant sleep much. Taking it day by day

Nicholas, Im hoping Tegretal is something the Dr gives my girl. Seems it is most useful with nocturnal events. What side effects have you noticed with that med?

 

[soehls]

Lisa, glad u are seeing a different neurologist. Im a huge believer in getting care for the our kids based on what we know about them ( who knows them better than their parents right) and being adament about getting their issues taken care of. Your doing good, keep on kepping on!:rock:

 

[KarenB]

Yes, yes, you definitely want to see a Pediatric Neurologist -- hopefully one connected with a good children's hospital. And when you see him/her, bring up the Ketogenic Diet. It's usually used with younger children, because they haven't such established eating patterns, but I am a big proponent of the diet as a firstline therapy. You'd definitely want to do it if a 2nd med fails, because chances of other meds working begin to get very low. The diet bought us 11 months of seizure free, which the meds weren't able to accomplish.

 

[soehls]

Karen, will you tell me a little about the diet you mentioned? Any good website you recommend?

 

[KarenB]

The best website is Charlie Foundation -- just type that into your search engine and it'll pop up. The Ketogenic Diet has severely restricted carbohydrates, adequate protein and lots of fat. Somehow, it works to stop seizures (or reduce considerably) in children in at least 50% of those studied -- and these are kids who have been on at least 3 or 5 different medications without any help -- it's used a lot at Johns Hopkins, and at all the other major children's hospitals or research hospitals. If it is so successful with children who have already "failed" multiple medications, then why not use it with kids just starting out? It's not nearly as dangerous as most of the seizure meds out there -- all of which have grave side effects. To initiate the diet, you have to work with a nutritionist experienced in the diet, and your daughter will be admitted to the hospital for about 2 to 4 days for the initiation and to train you.

Your neurologist will no doubt tell you that it's a huge lifestyle change, and this is, indeed, true. But personally, I would rather spend an extra 30 to 45 minutes in the kitchen each day than to watch my precious little boy lose all his language, develop severe autistic traits, be in a cognitive fog, suffer liver damage - all of which happened to him when he was on meds (which weren't working to stop the seizures either)