Confirmed She Does Have Nocturnal Epilepsy

Phoebe

I read this a few days ago but didn't have time to respond then. I have had epilepsy since childhood and have never heard of a diagnosis called sleep epilepsy. However, some do have seizures only during their sleep which is where her doc probably got the term. Mine started that way. We still have epilepsy though and not just sleep epilepsy. That leaves the door open for seizures to occur in the daytime too. My parents did not know I was having seizures in my sleep either, and thus I received no treatment. You have many more and much better options today than my parents did, and you also have the wisdom to have had it checked out. Not treating them allowed it to worsen over time as uncontrolled seizures will. In time, they appeared during the day as well. The roller coaster continued. Considering that some kids outgrow seizures, keeping them at bay is necessary to allow that to happen if it is going to. Her age is important too as is how long this has been going on. Considering all of this as well as the side effects of the meds and their effect on quality of life, please make your decisions re treatment based on all of the issues concerned. Phoebe

buliem

I agree with Phoebe. Seizures beget more seizures. My son started out with petit mal and then they progressed to grand mal or tonic clonic even while on depakote. We had to add another med to get control. Patrick usually had the big ones in the early morning while still in bed although his first was after he got up. He was on the toilet and I heard a thud. Anyway, I would really question your doctor about no meds. New research also shows that seizures can damage the brain. Shrink parts of it to be exact. They can effect behavior and learning. Of course meds do these things too. Effect behavior and learning that is. I really wouldn't risk her seizures progressing. Of course she's your child and you'll have to make the decision you feel is best for her. Good luck and my prayers are with you.

sey

OH WOW GUYS! doc told us there's no guarantees what so ever meds could make her have them more often too! also she might never have another again nobody knows this is so scary... shes very intelligent etc l dont want to mess with her brain meds can change the personality too ive also read that its better if somebody with epilepsy can do with olny one type of med rather than 2 different types as thats when problems begin this is so much to take in anybody know any good legitimate sites l could be reading? lm over whelmed

kayakmom

I am so sorry she has this DX> It can be good to be cautious as far as starting meds etc..Hang in there. It is so stressful. My son has mostly seizures in sleep. It has become clear to us when he has one. He will be hard to wake, very tired and not thinking right in the am. cannot follow simple directions, stumbly, sometimes speech is slurred or absent....he is also very clumsy....

Is there a way to video her at night to try and see the frequency? (My son is 14, we tried this at 13 and he was SO upset about being taped we had to stop)......


((((hugs)))) Do a google search on epilepsy and you will find many good places. Sadly I cannot post here what the better ones are....there are some good and accurate ones that doctors do have in put into.....

buliem

Patrick is groggy like that every morning. Mostly I think it's the meds. When he has a grand mal (tonic clonic) in is his sleep he wets the bed. That is a sure sign for us. We missed maybe two of these seizures. Still scary to realize he can have them without us knowing and his bed is just in the adjacent room. Only a few feet away from ours. You are right Kayak this is very stressful.

Niecsey, I totally understand nor wanting to use meds. I hate that Patrick has to be on them. They make him really lethargic and spacey. School is a struggle as his concentration is effected. We had to stop the petit mal seizures since he was having many,many a day. Unfortunately they progressed anyway. Sometimes I think the depakote did this. Who knows? Can't turn back now. Hang in there. Maybe it is better to be cautious in regards to meds but we had to follow doctors orders.

Take Care,
Julie

sey

Hi Kayak mam will do some searching ive thought about taping her l wouldnt let on to her though l dont want her to feel as if 'shes different at all' we see the doc again Oct 4th l dont think hes too keen either thats why he told us theres no guarantees and could actually bring more on l still have her in my room (she dont mind one bit lol) l wake to the slightest noise lm always aware lve even thought of attaching one of the door chimes to the bed so if anything should take off l will be woken if l am sleeping (good idea eh?) in the past there has been mornings where she has cried because we have woken her for school and its only now lve thought like yourself its probally cos something may of happened that l wasnt aware of l will ask the doc for some literature for me to read at my own pace thank you for reasurring me with the meds l was in torment thinking l was/could be harming my girl thank you for been there look forward to speaking to you again love niecsey

sey

Thank you to you too Julie x just realised you had posted too pleased to meet you all maybe we can all help and support each other this is a wonderful board and im glad l found it take care all xxx niecsey