I am waiting on a call back after nurse talks to neuro. Will see
if we can up the trileptal anymore. I'm also hoping to just continue
going down on one of the other two meds.

I also know that we have to do something about the appetite.

Donan

What is going on Donna? Is Derrick having more seizures>I know that waiting for those phone calls is always so hard! Hope you hear back soon!

What is wrong with his appetite?

Hugs, Ginny

YEs he has been having more seizures for a few weeks now.

And his appetite nothing taste good. This has been going on for quite a while now. As in for at least all summer and into the fall.
He is the one that this is bothering the most. Well it bothers me because
I know he isn't eating like I would like him too at home and out.

But I do know that at school most of the time he can find things he will eat.
He has always been somewhat of a picky eater, but now even those things
he ate he can't or they don't taste good.

Were not sure if its got to do with the taking away of seroquel. I believe it
started happening about the same time, but I'm not positive it hadn't started before so its posible it started with the reduction too.

Donna

Well with dropping the seroquel, could it be depression based as well? This can also be a sign of this. I forget why you needed to stop that medication. I know that you posted a behavior problem,but do not remember what it was....

Sorry he is having seizures. Did the neuro nurse get back to you yet?

Sounds like he is not loosing weight, since you have not mentioned that, just that things are not tasting good....It might just be from having the seizures too. When you have a lot of seizures you are often not as hungry to....unless they are just the being off ones? Even that, he might just not be feeling too well from that....

I hope that you hear back from the nurse for help soon.

Ginny

Not positive either way on the weight lose. He is maybe down another
5 pounds. But that is not a bad or good thing. Remember he is 6 foot
and now weighs 130 lbs. But he gets as soon as it comes in next
month the flu shot. And I will have his pediatrician weigh him again.

Then I will know exactly what to think. He goes to the psychiatrist
and psychologist next month too. And they will weigh him too. And
the psychiatrist watches his weight a lot too. I'm not sure she will
like how much he has gone down and not gained any of it back since
his illness 2 years ago by then. And then lost about another 7 to 10
pounds if I'm right. She will then weigh this with the decision to
do meds or not. The main reason he went off zoloft two years ago
was because of the amount of weight he was gaining in a time frame,
it was concerning her that the medicines not sure which one was
making him gain. So she chose to take the zoloft away, with the
thought it could go back if needed.

She really has wanted to take the seroquel for a long time. It was me
that didn't want to go down or off it. I was not comfortable. I allowed
the 25 reduction from 75 to 50 back a while ago, not sure when. It
went fine. But the next 25 I wouldn't allow for almost 2 years I'm sure.
Because we tried to go down 25 and he had to many meltdowns.

And so when the psychiatrist tried almost 1 1/2 years ago, he was still
having weeping problems, and I wasn't ready. So we waited, then I chose
to suggest about 1 year ago, to try the 25 reduction, but we always
go 1/2 of that then if I think its okay we go the other 1/2 2 months later.
But that is for me.

I wanted to do that in may, but she said, it wouldn't make a difference.
So I chose to take her word, but maybe I should have listened to my inner
thoughts on this. And waited on the other 1/2 for at least one month, which would have been about the 1st of July. Right after summer school was over.

Any way, I heard back from the nurse. I'm not sure I am ready for the
answer, but I've emailed her back. Because i missed the phone call. Which
I'm glad I did. Because its for a 1 or 2 day VEEG again. Hmmm, I am not
sure it will work. It hasn't yet. But I'm willing if we can do it a little different
than we ever have. I want to reduce at least the medicines. And I would
like to change them when we leave. I am hoping she wont think its to much to ask.

I can dream at least. The other reason I had to email and not call was I had
too many dates it can't be because of medical appointments for me. I refuse to put my health second. And I did explain that because I have no other person to help. They will have to help with finding ways to get him out of bed this time. Because if he is confined to bed only, it wont work. And if the playstation and other things don't work, it wont help. Because he needs to be stimulated to do the things too.

Donna

ok, Sorry you have to do more VEEG< but it is important to switch meds since that is what you want.


YOu did post when school was starting that he was weepy again, was that when you stopped the Seroquel? I know you talked then about calling the psych or thinking it was hormones or what it might be....I am confused.

I hope you can get the veeg done soon. I know you have a lot going on with everything.

I know for our veeg they want sam out of bed some in a chair and painting. Since Derrick can paint now and draw, maybe they can have a volunteer come in more and help you more since your health is so bad?

Hugs,
ginny

Seroquel was stopped in May right before school ended. About one week before. The weepy started about the middle of june. And the bossy,
started during summer school, but I learned about the summer school
part of it the first week of august from the teacher. I thought what
we were getting at home, was him and dad mainly. Just trying
to say I want to be taken seriously and respected kind of.

But its not completely. He is now been in seizure and was very mad
and I mean gave me the attitude and look. That had never happened.
And it probably will again in seizrue.

Its just so many things that he never has done. I don't know how
to post it at times, so I didn't.

Donna

OH ok, now I understand.

I tried to reply to your email, but it just bounced back< SOrry!

I can sure understand your frustrations! Having been doubted by neuros before and the VEEG's and all his medication, I would want something more to come from the testing as well. I think you are right in voicing that to the doctor before agreeing to go in.

I do not think that is being a baby at all I think it is perfectly normal to feel totally overwhelmed by it all between the seizures, this new behavior and everthing.

The anger and things sounds like it might be normal frustration and teen things, maybe some depression with it all. He might need to go back to some kind of anti depressant. The seroquel was an antipsycotic and not really an anti depressant so he might need something again for depression maybe. ZOnegran can sometimes make kids depressed.

More seizures can also make kids more depressed.

I hope you can get this figured out.

GInny

Since I see the anger and odd behaviour which I saw with the seizure
on wednesday night that the magnet gave a good reaction too 15 minutes
or less after usage. I am positive that it was a seizure.

It was very definate that this particular one was a one time only thing.
I've never seen him like this. And I hope I never see that look in his eyes
again. I'm honestly not sure he had a clue how angry he was at me for
making him swipe his magnet. I've also never had him yelling no at me
for no reason about swiping his magnet.

And then he got up and swiped. But it was a really odd thing.

So I know he wasn't with me.

Most of the time now, he has no anger. Its mainly in a seizure or off moment.
So I'm just about positive its there. I'm just trying to prove it. I've taken
to writing very detailed emails or at least trying to.

Donna