ADVERTISEMENT
fastjim

autism and now siezures?

I emailed the website already but wanted to post too.  I take care of an adult with moderate autism, who now we suspect is having siezures.  So far ive seen her whole body drop completely, her head drop, seen her whole arms and/or legs stiffen up, seen her jump her arms or swing them up in the air randomly, seen rapid jerking, seen just also random jerking, eyes rolling back, whole body jerking, mouth drooling, staring off into space then jerking, and so much more(none are diagnosed yet, we called the neurologist, waiting to get back from them).  Shes been drooling more and more, and is constantly tired, on top of that, lately shes been feeling sick to her stomach, losing her breath and having a hard time breathing, having mini faint spells, dizzy spells, she threw up the other day, and having lots of gas too.  She is also having we assume siezures in the night, she woke up with her tongue swollen, bit, bloody, with a pillow half way down her throat, choking on her drool, etc.  I honestly don't know what to do with her.  Are these siezures? she is now having a lot of problems breathing, like catching her breath, out of breath, etc, are those related to siezures? 

She is verbal to a point, has her days, but uses more sign to communicate, so I'm going mostly from what I see.  I honestly think the whatever she is having started becoming more frequent, which i am sure at least 50 times a day, at least, due to severe head-banging(we have been working on her head-banging for years, she has got a lot better then she was as a child).  She has been head-banging since she was a child, would that play a role in siezures too?  I apologize if i seem sort of lost or dumb-founded, but she already has so many differculties with autism, that we never thought we add siezures to the mix, so now I'm at a loss for answers, please help?

 JIM

Comments

Re: autism and now siezures?

well those sound exactly like seizures, my son who is autistic has intractable seizures, he was diagnosed at the age of three that came with a fever, he is ten now but at the level of 3 years old. He also have dystonia a movement disorder so he takes a handful of pills daily to combat his seizures, behavior and movement disorder. call his or her neurologist or go through the emergency room that's how my son got into the neurology department. because the frequent that person suffers a seizures it can have a long lasting consequences, my son now has permanent brain damage from all his seizures that is what lead to his movement and behavior problem.

Re: autism and now siezures?

thank you for replying, i am no doubt sure she has some sort or form of brain damage just from head-banging.  Is it true she can get brain damage for the amount of siezures she is having? she had an open mri once but that was it, because she'll rip anything that goes around her head completely off, so its so hard.  I'm glad to also hear you have an autistic son, so you can relate.  Another thing we are worried about, any type of medication, she is allergic to, doesnt matter the medication or what its for.  She gets extremely angry, uncontrollable mood swings, and either makes her even more tired or extremely hyper, so we dont know what will happen with the medications if and when she is diagnosed with siezures.  Have you ever had a problem with that? if so how did you manage that?

She siezes a lot, and is constantly hitting her head, so if siezures cause brain damage, and her slamming her head into hard objects like marble sinks, i honestly dont know how she still functions, but to my amazement is still doing going strong.  Is there something I can look for to tell if she does have brain damage? thank you.

JIM

Re: autism and now siezures?

well my son functions are at a 2 year old he still wears pull ups, his fine motor gross is extremely weak. He drools alot at times, his speech is so delayed that it hardly understandable.  she should have a helmet to wear my son have multiple seizures all the times, he has the vns inplanted in him three years ago did well for a long time up until now.  His school Hillcrest have been a god send to me and my family, he have speec, physical, and ot at school, he have a team of doctors on top of his medical crisis, he started having seizures in his sleep now, so he sleeps with me . talk to your doctor about the frequency of her seizures and how long they last each

Re: autism and now siezures?

How exactly do you know he has siezures at night? what signs should i notice? i sleep on the floor next to her bed because of her self injurious behaviors, she may wake up attacking herself for no apparent reason.  I usually fall asleep quick so i never notice she has siezures at night but when she does wake up, i have to quickly act before she destroys everything in her path or herself or worse even me.  She functions cognitively around 8-10years old, and she'll be 25 in a couple months.  Her family has tried helmets before, she either eats them, breaks through them, or rips them in tiny pieces.  What is a vns implant?  We're still waiting for the neurologist to get back to us, this is like her 100th neurologist she has seen, its hard to find some who will work with her.  Is there any advice you can give me on how to handle these siezures? with her being autistic she'll sieze then attack herself unless we redirect her.  Again thank you.

JIM

Re: autism and now siezures?

well, my son usually is agitated more after waking up, his muscle is extremely sore and he be soaking wet from head to toe, he's usually stiffening up at night to the point it wakes him up and he can't get back to sleep. We recently did a 48 hour EEG at the university of Chicago and it showed him having seizure activity while he's asleep, before he goes to sleep and some throughout the day. Get her a good Neurologist to start with give them every piece of information you have, do lots and lots of research I am on the computer 8 or 9 hours a day. I had to drop out of school because of his declining health.  Have she had any EEG's ?  the vagus nerve stimulator is like a pace maker for seizures, it is placed on the side of the chest with a wire inplanted on the side of the neck that send signals to help reduce the severity of seizures. He had it done in late 2006 it worked to help reduced the severity of his seizures, his grand-mal isn't as bad as it used to be. My son behavior was and is tough to deal with, they prescribed risperdol and clondine to help with his behavior. don't give up, I had to go to alot of hospital before finding the right one that actually wanted to see him get better, the previous hospital just gave up on him. wow she is delayed get her into a program immediately , have you heard of respite care? that works wonders for the parents and the child . She needs have an EEG pronto a Veeg is the best way to go and the proper treatment should make a difference with everything she is going through. it's always going to be a trial and error with medication but eventually they will stumble on the right one that works