Update on Josh...

Kris · 05-26-2007, 12:40 AM

It's been rough going, ladies.

I don't really recall the last update I gave you (and I'm not going to look for it

) but, I wanted to let y'all know what was going on - and ask that you keep him in your thoughts and prayers.

While the meltdowns have become less frequent, they've become more intense - so much so that his psychologist insisted we see a psychiatrist. We did that, 3 weeks ago. He was put on medication that quite often helps children with Asperger's / Autism - and he's been doing *great* with it. While we were at that appointment, we were asked why Joshua has never seen a Neurologist. We were informed that his "full panel evaluation" was incomplete without a neurology consult. I asked if it was really necessary - he said yes. He also said that a high number of kids "on the spectrum" have seizure disorders.... and he wanted Josh checked out.

Well, I told him that I'm certain that if he'd ever had a seizure, I'd certainly know it. I assured him that he doesn't have any issues with seizures. But, I had NO idea that staring blankly into space while "tuning others out" was a type of seizure. Josh has *always* done this... and I've always assumed it was a selective issue and a conscious choice. Now, I'm not so sure.

We saw his pediatrician today, after observing him over the last three weeks, and consulting with his teacher. His teacher has noticed that he has periods where he seems to be staring through the room and he doesn't seem to hear what is being said at all - and then he shivers... and is then confused about what is going on around him. She said that this has happened twice, and both times it was during a test... and on both tests, he didn't do as well as he normally does. He's a straight A student, who is all of a sudden getting high 70's - low 80's on tests covering materials that he'd know in his sleep.

I took this information with me... and his pediatrician agreed that he NEEDS to have a consult with a Neurologist. They are sending him for an EEG in the near future. In fact, as soon as they are able to get it scheduled. The bad thing is that it will have to be done while he's sleep deprived, which means that they'll have us wake him in the middle of the morning... and force him to stay awake until the tests are over.

His pediatrician believes that he could be having absence seizures - since he seems to lose touch with reality for a few seconds at a time, and when it's regained... he's confused about what's going on around him. He said that this COULD be attributing to the meltdowns growing in intensity. The meltdowns themselves COULD be a stress reaction from a seizure!

I'm actually freaking out a bit. The thought of my child having seizures, his whole life, and me not having ANY clue really makes me feel like I am most deserving of the Terrible mom of the Year award. Though, I was assured that a lot of kids who have this type of seizure disorder go under the radar until their grades mysteriously start slipping - but there are no "real" accompanying (additional) behavioral issues.

So, for the time being.... we just have to sit and wait for an appointment for the EEG. I should have the date/time by Wednesday. And, we just have to watch him carefully and make sure he doesn't get hurt while "blacking out." I saw him do it again in the car this evening... I saw his eyes blinking rapidly and his pupils rolling up in his head. I was about ready to have Adam pull over when I saw the "shiver" - and he smiled... and said, "What's wrong mom?" He had no clue what had just happened.

It only lasted a couple seconds... I had just turned around to ask him a question, it looked as if he was staring at the back of his seat.... but, the stare was so vacant - like he wasn't even there.

In other news... my "little big guy" gained 6 lbs in 2 months!! That's GREAT for him. He really needs to put on some weight. And, he'll be NINE years old on Sunday. *OMG!!* =)

Koloe · 05-26-2007, 01:05 AM

That's great about the weight gain. I'm sorry abou the siezures - if it is seizures - don't let hime take baths unsupervised.

Lisa · 05-26-2007, 01:12 AM

Ohh Kris you are not a bad mom, you are so proactive with your kids and you really deserve an award for that.
Yes the seizures are scary. I for one definetly know that....yes the eye rolling and blinking are things we look for in Kate because now that she has had seizures she could end up having them again. Also watch for twitches, in his hands or face, because those can be a indicator that he is going to have one, is having one or just had one. The neuro is really a good thing to have him go to...we have been to one numerous times, but the good news is that the EEG that they will give him to check for seizure activity isnt painfull and it is over pretty quickly. Because of his age there are lots of meds out there that will work for him with the seizures that dont have alot of side affects...unfortunately the only one for newborns(and that kate was on from the day after she was born till she was 10 months old is horrible, but they dont use it on older kids because of the side affects). You just have to make sure you are on top of him taking them at roughly the same time every day to keep the level consistent. That is very important. Please keep us update on Josh...

Kris · 05-26-2007, 01:13 AM

Ohhh, don't worry about that. My sensory defensive son would rather eat rocks than take a bath. It's difficult enough to get him in the shower.

Lisa · 05-26-2007, 01:15 AM

Quote:

Originally Posted by Kris

Ohhh, don't worry about that. My sensory defensive son would rather eat rocks than take a bath. It's difficult enough to get him in the shower.

well rocks are good fiber mom, of course he would rather eat those.

Amanda05 · 05-26-2007, 01:24 AM

Sorry Kris

It is so scary when you learn about som,ething like that. You are handling everything really well. Unless you have delt with seizures or read about them, how would you have known?

jillian1527 · 05-26-2007, 12:01 PM

I am so sorry Kris. you have been in my prayers since your last post. like Lisa said its great your being so proactive and getting him all the help he needs. You didn't know what to look for in seizers. I always thought that they were full blown muscles spasms until a few years ago.
I will continue to keep you guys in my prayers.

Pautzie · 05-26-2007, 12:19 PM

Kris, you deserve the Mother of the Year award. You are an incredible mother who would do anything for them. The seizures aren't something that you would of even known about. Now that you know, look...you are so on top of it.

We are here for you and keep us updated.