[Nevada Jen]

My DD (who is not adopted so I always feel like a fraud posting about her on here) just started having seizures. Siezures have always been part of her disorder but she has only had giant life threatening ones and it was only when something was desperately wrong (really high temp, brain bleeds etc. . .) now she is having petit mal and what I would call absence seizures. And episodes of really heavy breathing. I am kind of freaking out. Any one familiar with these little seizures who can dish out some advice about what it feels like, how long the after effects last, if the heavy breathing is part of it? The seizures themselves only bug me a little but what they might signify has me pretty close to freak out level!

[kakuehl]

Do you have an appointment scheduled for her? I have a friend who has mostly petit mal seizures (he's 50); he is often tired when they end and has some memory problems afterward. He has suffered from them since he was a small child. Medicine has made a lot of advances when it comes to epilepsy.

[devildogwife]

My older sister has epilepsy and seems to only have seizures now when she has periods of extreme stress. She gets a little warning before hand (an aura) and is able to communicate that normally before something happens. One day though, she just laid down on the kitchen floor and had a seizure. She tried quite a few different meds (depakoke, tegratol, and phenobarb that I can remember) and had horrible side effects like hair loss and extreme mood swings. She was really out of it (super tired) the rest of the day after seizing.

Sorry I can't help more. Beyond my sister and a friend, I have little experience.

[Nevada Jen]

She had an appointment with nuero yesterday (after I took he to the hospital on saturday for them) and they raised her dose of meds. They also raised it on Saturday. Even after the raised dose on saturday she was still was having very small ones (like just a flicker) and then she had one 10 second one.

She has now had two even higher doses of the meds so hopefully DH will tell me she had none today. I am just worried because the never had them at all before while on meds and its not like she has grown and now the meds aren't working. I guess it could be because she is going through puberty.

ETA: Just talked to DH. No seizures today. Keep your fingers crossed!

[Nevada Jen]

Kathy, can you ask your friend if he has headaches after them? And for how long after one he feels a little messed up? THis is one of those times when I wish my daughter could talk!

[Withay]

Puberty can set off seizures. Another time to watch is when she gives birth (hopefully many years from now).

My son had breakthrough seizures while on his meds (Topamax) until we got the dose tweaked just right. He actually had 30 seizures in 4 hours one day before we got his meds right.

He has not had any seizures since last December - thank you Lord - and is doing great. The doctor told me in May that if he remains seizure free for 2 more years then we can wean him off his meds.

When he had 'travelers' (most likely what you call absence) seizures they were very short in duration, 10 - 15 seconds and left him tired for a few hours afterward.

[Nevada Jen]

Well I have been home for less than an hour and I have already seen 2. I think my hubby just doesn't know how to identify them! I hope they can get it tweaked.

I hope you can get off the meds Withay! I was honestly just getting ready to ask to wean off. So much for that!

[athikers]

My son has successfully been weaned of his seizure meds, but he's much younger and we THINK the seizures were related to his brain injury and recovery. However, the prevalence of seizures with autistic children is quite high, so we will be on the look out. He also had mostly petit mal seizures.

[Nevada Jen]

She had 3 yesterday and the higher dose of meds should be kicking in. I think if she has any today we will know we need to do something else. Of course that problem is that my husband is being pissy today because he lost his comb (yes, you read that right.) which is somehow my fault, so I am sure he will not be diligent in watching her and will forget to tell school to watch.

[mylovebug]

I'm not too familiar with dealing with seizures so this is all new to me too. Our fs who just turned 2 has had two, and I am clueless. The only thing I do know is that they have been triggered by him holding his breath. The first was back in dec. he had a bad coughing spell and couldn't catch his breath. By the time I got him out of the crib(luckily i was listening closely) he was turning blue around his lips, his hands were drawing up, his eyes were rolled into the back of his head and he was shing only a little bit. Afterwards when he was breathing again and stable he was VERY pale, lathargic and fussy/whiney/clingy like never before for atleast an hour and then he worked his way back to normal. The sacond time my husband was playing with him and he was laughing like crazy then he went straight from laughing to crying without a breath in between. He started turning blue again and his fists were drawing up, eyes rolled back and about the same afterwards, pale, lethargic clingy and fussy. EEG came out normal and we go to the nuerologist at the end of oct. We do have meds to use on him if he goes into another one. It is very scary when you are not familiar with it. You feel helpless, like they are going to have brain damage from lack of oxygen and there is nothing you can do about it. hope things get better for you.

[evansmum]

Can you maybe ask about trying Clobozam? We have had wonderful success with it with our AS who has tonic-clonic (Grand Mal) seizures. He has idiopathic epilepsy (no explanation - his MRI was normal) with nocturnal seizures, and we have been playing with dosages for the past year. He is now almost 6 months seizure-free with a 10mg dose of Apo-clobozam daily.

The neuro was hoping that he would outgrow it as well, but whenever we drop below 10mg, the seizures start again, so it will likely be lifelong for him. She told us that puberty will make/break it. He could either outgrow them completely or they could get much worse. BUT, "lucky" for us, nocturnal seizures will rarely manifest into daytime seizure activity -- something to do with brain activity in his sleep.

When we were looking into the possibility of petit mal seizures with him (zoning out during access visits and other stressful activities), the research I did said that they will usually just space for 5-30 seconds and then just "come back". I don't recall there being a recovery period for petit mal seizures.

I will suggest though - get a medic alert bracelet for her. She may seize at such a moment that she could really put herself in danger --- on a swing, on her bike, etc. It would be good for someone there to know what happened if she can't tell them herself. Best $80 and $40/year I've ever spent. Usually you can get them for free if you go through the child's school.

GL! It can be sooooo scary when you don't know what's going on with your child. M had had a few febrile seizures when he was very little, but nothing major manifested until last summer, and he had a G/M seizure lasting over 7 minutes! The good mom I am, I didn't panic until after we got home from the ER! Then I thought I was going to be sick!!

[Nevada Jen]

She has been seizure free all day today. Hopefully we have found the magic number. We are waiting for an EEG to be scheduled. They have always been normal so I am not sure how much help that will be but maybe is will catch the zoning out kind.

Its hard to find a med for her because she is so small (40 pounds) and she already has liver issues. Those two things rule out most good meds.

No medic alert bracelet necessary. This is not some kid who is going to surprise people with her disabilities. They are pretty dang obvious!

Thank you all for the support. This is the first time in a long time I have been worried about her making it to the morning. It helps to get on here and see all the replies!

[evansmum]

Do they just "happen" or are there triggers, like stress, smells, lack of sleep, etc?

An EEG will only show the activity it records, it won't show you something that happened 20 minutes ago, or what will happen in 1/2 hour, y'know? Ours were always normal, too, until we did a sleep-deprived EEG which went crazy.

[millie58]

I have petit mal seizures although my last one was 15 years ago. I take a muscle relaxant for it (neurologist prescribes it). I fall; things fall out of my hands. Never go the whole night without sleeping. Also try and see if your child is anxious about anything. PM me if you need more info.

[Nevada Jen]

Seizure free yesterday. If there are none today I might be able to exhale!