meltdowns - were ADHD and probably epilepsy

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Hi there!
I've been posting about my son's horendous meltdowns, and wanted to tell you all how it is going. First: we stopped zypreza and started ritalin EUREKA it was a miracle. His behavior at the hospital (he is in hospital because he suddenly started having really violent meltdowns) was as normal as it gets, and 4 hours later, as the ritalin wore off, he was back at his worse. (Dr. Jekyl and Mr. Hyde - no joke).
Second he was an absolute angel when he had an EEG done- I knew he would be, but they were SO surprised at the ward, they thought it would be impossible. The EEG showed severely abnormal spikes in the right temporal region, especially during sleep. But the neurologist was curiously calm about it all. They aren't calling it epilepsy, which kind of surprizes me. I guess we'll have to go for more tests. Anyone who can fill me in on what abnormal spikes actually are, would be doing me a huge favour!
So, although I guess it isn't good news, it is an unbelievable relief to be getting some answers!

I'm glad there is some good news in that. I wouldn't know about the spikes though I had never have one done on me.

That suprises me that they are not calling the spikes epilepsy. My son goes to Stanford and sees a neurologist who is a specialist within neurology. (You have to fail 4 different medications to be able to see him).

He has spikes in the behaviorial part of his brain and his been on seizure medication since he was 2. More that 14 seizures, I think actually 20 in the first 24 hours. I have lost trrack. It was 4 1/2 years ago. They have him on medication for epilepsy as well as Metadate (Same as Ritalin) and Daytrana, a new metadate patch that he wears for 9 hours. They work great, but you are right when they ware off forget it. The problem we had with Ritalin is exactally the same we got about 2-3 hours out of it. The Metadate works longer and the Daytrana is the best. It is brand new. When it is out of their system they can be terrors. I had bruises up and down my arms when my son started having meltdowns, until we figured out what was going on and changed his medications. HE still has a few here and there. They are more cxontrolled and we can see them coming on and remove him from anywhere where he can hurt himself or others.

I would tell the doctor to fully explain why the spikes are not epilepsy. I made it my mission when my son was born at 32 weeks that if I did not understand something, the doctor was going to explain it to me until I did. You can't help your son if you don't know what is going on.

Good luck and keep us all posted on the test results. Demand they do them soon so you can help your son.

Thanks for the info.
Ajpmom it sounds like your son has a lot of the same problems as mine. The pedriatric psychiatrist was worried about ritalin and epilepsy, but it sounds as if your son is doing fine, which is reassuring.
So far, I have only talked to my son's psychiatrist, who was worried and didn't understand why spikes weren't epilepsy, either. She phoned the neurologist a dozen times. You are right that we need to see the neurologist ourselves, and demand a thorough program to find out what is actually going on.

I will ask about the daytrana. Do you think the meltdowns are related to epilepsy, ADHD or a combination? I have a suspision that epilepsy symptoms could be freaking my son out, and the ADHD making him react with these big meltdowns.
Do the epilepsy meds have a lot of side effects?

My son has been on epilepsy meds since he was 2. Once you find the right one for him they work great and very few side effects. My son was on Lamictal for 2 years and it worked great until he developed a rash. Unknown if it was from the meds or a bug going around. But as soon as they have a rash no more Lamictal. From what I was told it can lead to a dangerous condition, so they automatically stop the meds and he can never have them again. After a few other meds we found Zonegran, he has been on this for 2-3 years. With no side effects that we know of.

The neurologist is the one who insisted to put him on ADHD meds and said we need to see a child psyc when the pediatrician could not handle all his behavioral changes. We could not find anyone in Northern California so he set us up with someone at Stanford. It works, because he has access to all test results, notes and charts because they are all on their network and available to him. This is where his neurologist is as well,

My son had no problem with the Ritalin and the epilepsy meds. In fact the neurologist said if we did not control the ADHD it would make the epilepsy worse because his brain would go into overload. His seizures are located in the behavioral part of the brain. We have no way of knowing if the meltdowns are related to the epilepsy or the AS. He was just diagnosed a week ago. I can say the meltdowns increased drastically when he started school. Preschool was not a problem (but he had family there). Kindergarten was a waste. The first part of first was as well. We changed schools at Thanksgiving and started going to the child psyc at the same time. Between the change of meds and the change of environment (the new school is very loving and understanding) he has blossomed and the meltdowns have decreased. HE has a wonderful RS teacher and he is in general ed for the majority of his day. He is given attention and they do not punish him when he does something “weird.” He is also not getting beat up by other kids. The supervision is great there.

I just found out this week that the RS teacher had him on an autism program for the last month without us knowing. She said she was just waiting for the diagnosis from the psyc. Actually it did not change his program much with her, she just rewards him for all his behavior all over campus. He earns "school money" everywhere, other kids only earn in her classroom. At the end of the week he gets to purchase items from her "store." This teaches them about money, and makes him accountable for everything he does. When he is good all day he gests money, has no accidents, share his things with others, stops to help someone who needs help, etc. This has made him more aware of what he does. She said they have 3 kids on campus with Autism; they are all general ed with support from staff.

I would make an appointment with the neurologist ASAP. If he is having spikes they need to be addressed. ADHD meds and epilepsy meds are safe if they are used correctly is what I have been told. I trust my sons neuro. HE is the best they have at Stanford. All he does is epilepsy and reads EEG's all day as the director of the lab.

We are starting a stronger Daytrana patch today, we went to the 30mg. So we will see how it works this weekend. He is finally sleeping again. So we are all happy. He did not sleep for 3 days, but this is what led to the AS diagnosis. So I guess in the long run it was worth the agony of no sleep.

Sorry so long, but as a side note, I was shocked this week. His teacher was sick, he made her a get well card while he was at school and told her she was invited to his birthday party. (his birthday is not until May). He actually took time to make something for someone who he knew did not feel good. IT was not all centered around him. We are making great progress and this is a public school with 120 kids, K-8. He has a teacher, a classroom aid (this is for the entire class, not just him) for a class of 14 kid’s total. He only goes to RS for 4 hours a week. Does your son have any services at school?

Keep me posted as to how things turn out. Good luck.

That is so sweet of your son!
Thanks for the info - it is really helpfull. I have a whole lot of questions !
Are your son's problems related to being premature?
My son goes to a school for kids with Aspergers/HFA. His behaviour has at times been very difficult, and at his normal kindergarten the other kids (and their parents) were very hard to deal with.
Where is the behavioural part of the brain? Is it in the frontal lobe? I have been doing a little reading on epilepsy. Does the epileptic activity spread from that area to the rest of the brain?
My son has been taking ritalin for less than a week. He had it twice on friday - the second time at 3 o'clock (not 12, as planned) because his psychiatrist wanted to be sure it was OK to give him ritalin. He didn't sleep until 11 o'clock that night. It sounds as if you have had the same experience. How is he sleeping now?
Anyway, thanks again.

No one knows if the preemie in him is what has caused any of his medical problems. He only stayed in the NICU for 2 weeks, did not use any oxygen or anything else, just needed time to grow and regulate his temperature. So as far as a 32 weeker goes his was wonderful. He always had a low immune system, was the only sign other than his small size that anyone saw.

As far as sleep goes, we have to make sure that he does not get any stimulants after 5:30 pm and then that they are a very small dose. Enough to make it through the evening, but not enough to keep him aware. Somedays it is a difficult balance. I usually try to error on the side of the meds wearing off faster than when he goes to bed. In the long run it is easier on all of us.

I do not remember exactly what lobe his seizures are in. It's been too long ago with all the other issues to remember what his dr said as to exactly what location they are. I do not think they can travel, but I am by no means an expert on epilepsy. I do know that my son's have stayed in the same location and even if the epilepsy is genetic, like they believe his are, they are not usually in the same location in the brain as the relatives.

I would get into see a neurologist ASAP.

I do not think there are any special schools around here for AS. I do know that I found a wonderful public school for him. His teachers are great. We travel 25 miles each way to take him there, BUT EVERY MILE IS WORTH IT, WHEN HE IS HAPPY ! !! ! And when he is happy everyone is happy. I trust the education that he is getting and the people who take care of him each day. He willing goes to school each day and is happy. Before, it was a daily chore to get him to go to school and then to get out of the car when we got there. Now he can’t wait and he runs to his classroom each day.

I hope you have an easy time in determining the correct does for your son. Once you get is remotely figured out a little tweaking is all it takes and you have a new child that is eager to please, at least that is what I have when his meds are working correctly.

Good Luck and keep me posted.

I do not know anything about this and did some searching I came across this lady with
a simular problem with her child:

http://www.medhelp.org/forums/ChildBeha ... 32813.html

Thanks to both of you! It was a good link, I'll use a lot of time on.
I agree that if my son is happy , so are the rest of us!
I saw a very good child psychiatrist today ("the best" in my neck of the woods.) He referred me to a very good neurologist, and ordered an MR scan.
The possibilities are: 1. that the EEG changes are related to autism and have no clinical significance i.e no epilepsy (like in the link). 2. temporal epilepsy, which actually fits in with the weird symptoms my son has been showing - anger, fear, perception and behavior changes ect. 3. a brain tumor, which is not likely, as he has autism, but in a "normal" kid it would be the most probable cause.
He agreed with your neurologist, ajpmom, that ritalin was fine and actually be good for the epilepsy (if he has got it, which I by now think he must have). The dose goes up on Thursday. The one problem is a rebound affect when it wears off: half an hour when he is worse than ever, but then he settles down and is fine.

glad to hear you're finally getting some answers

thanks

That was the same problem we had with the Ritalin. The metadate was better and the daytrana patch is the best so far. When the meds wear off, it is ten times worse than before you gave him the meds. Good luck with the new doctor and keep us posted.

My son who is 8 and has aspergers also had 2 eeg,s and like you said was a complete angel then we went to the mall wasnt an angel there. Anyway my sons eeg show brain wave abnormalities, he has sleep seizures, where he awakes well (his eyes open), and he is in this weird state where he cant talk, his eyes are wandering, he vomits and sometimes urinates, sometimes he becomes very stiff with some jerking of his fingers and hands. He is not responsive for a t least 10 to 15 minutes. It usually takes the good out of him if he has one in the morning, he usually vomits all day and just lays around feeling very sluggish(can't eat). he is also on 2 forms of Ritalin like you said he is fine when he takes it but it wears off very quickly and you can tell. Just like Dr. Jeckyl and Mr. Hyde. He is on Methylphenidate and Risperdone. Even on these meds he sometimes has a great deal of aggression and major meltdowns just yesterdaty i thought he was going to kick his bedroom door down he kicked it so hard.

Take care everyone and feel free to ask me any questions on this or anything.

I wonder about EEGs, autism and just how expert neurologists really are on epilepsy. I had an EEG last week and had a seizure on the table yet it went unnoticed. Actually I had 3 seizures on the table and one seemed fairly pronounced to me, but I think it would fall under a myoclonic seizure so maybe those just aren't considered worrisome.