Hello, I'm new here, trying my best to learn how to handle my son's diagnosis. He's almost 6, a (formerly! new guy is 1 week old) only child who can be very hard to handle (ie control and contain) but also very sweet, inquisitive, and bright. At home we saw more maturity in the past feew years in that he listened better, and responded more quickly to us, but when he started kindergarten he fell apart. It was like sensory overload, he just couldn't follow the rest of the class.

So we had him evaluated and he's "ADHD combined-plus", the plus being in our case PDD (like very mild autism). For him it's the social aspects--no respect for personal space, poor to fair eye contact, self-stimulatory behaviors (like making faces). So in addition to having a poor attention span during school, he additionally just tunes everyone out. But when he does that he also tends to pester the other kids.

After reading a bunch of studies that documented that stimulants and behav mod have the most effect on ADHD, we have started him on Metadate CD, 10mg every morning. This is in addition to the social skills class he takes and our consultation with a behaviorist. At home we've tried to implement the behav mod, but he's in a gen ed class and really getting no support at school.

Day 1 on Metadate he calmed and hyperfocused on crafts and Legos, was much more compliant with directives and stayed on task. Rebound he started whining more, and was anxious. We're now day 4 and we only see him after the crash. He's more anxious, more OCD about his favorite books and toys, and is less responsive to our voices and directives. I feel like all the progress we made in getting him to respond to us is just wiped out, and like the PDD aspects are getting amplified. Are stimulants really a good idea when you have PDD in the picture?

Any thoughts, suggestion, ideas would be wonderful. I pushed the idea of medication onto my husband after seeing the studies and now I'm really second-guessing myself. :(

Not everyone reacts the same to medications, and sometimes it can take time until you find the right one, and the right dosage. We went through three, before the fourth was a hit. For us, the medication is a great help. He also does play therapy, and has just started a group therapy with other kids who have behavioral issues.

We also tried the behavior modification first, before trying medication. It didn't work. And while the medication helped, it's not enough on its own. For us the combo has been a blessing, but it takes time for that all to sink in.

I'd suggest talking to his doc about the medication. There are other options out there besides the one. :)

He's more anxious, more OCD about his favorite books and toys, and is less responsive to our voices and directives. I feel like all the progress we made in getting him to respond to us is just wiped out, and like the PDD aspects are getting amplified. Are stimulants really a good idea when you have PDD in the picture?Could it be that you are noticing the Pervasive Developmental Disorder symptoms more because the ADHD symptoms have decreased? Is this a fairly recent diagnosis?

Lady Lark-- thank you for the positive story. Last night he seemed more like himself, did great on his homework, ate and slept well. He is crying a lot more, tho, about random things (a tower of blocks fell, his team lost a game, etc). He also reported a burning throat yesterday that went away after drinking water. Did you see a gradual leveling of side effects like this or did they get worse?

We decided to try meds when I realized that at a certain level he just couldn't absorb the behav mod, his impulsivity was constantly derailing him. What seems a good idea in theory tho is soooo much more difficult in practice.

Imnapl-- A relatively new dx but not a surprise to us. My brother is undiagnosed PDDNOS, and I have two 1st cousins with classic autism. For a while I thought he was fine but his triggers are large group situations, where he just feels out of place. Thus a large Kindergarten class where he didn't know anyone triggered all this strange behavior. Now that he's more comfortable, he's better but the ADHD is still a problem. And when you already have problems focusing on verbal cues, it gets worse when you add the distractibility component.

So we're trying the Metadate CD. The previous two nights it was like he was drugged. For our son, he's always had problems attending to anyone, altho I can usually direct his attention (ex "Grandma is asking you a question" etc), but after the rebound he couldn't even focus on me. We've worked on this for so long and he was doing so much better, it's especially frustrating to see him backslide. Yesterday was better, tho--we saw the calm without the space cadet effect. And I haven't seen any facial grimaces (his self-stimulatory behavior) since he started it.

I guess we have to give it time....

As you are already aware, medication treatment for PDD-NOS has not been as successful as it has for ADHD/ADD. I guess you will have to decide if the benefits at school are worth more difficulty at home. Perhaps your son's doctor can suggest something to make the evenings less difficult? We should also remember that school takes a lot out of our kids. People think I'm joking when I tell them my very ADHD son never slept the night through until he started kindergarten. He would actually fall asleep at the dinner table so we had to change our schedule. I did not know he had ADHD, but mentioned my concerns to his teacher. She laughed and told me that kindergarten was hard work.

School is hard, even for NT's. It's no wonder after being as well behaved as they can for eight hours, they come home and turn into little monsters. I've been trying to accommodate for that, and let him have some burn off time.
Did you see a gradual leveling of side effects like this or did they get worse?
Leveling like what? Sorry, it's been a crazy busy week, and my brain function is starting to slide a bit. :)

For us, I think the reason that the combo seems to be working is that the meds give him the ability to focus better, so he can pay more attention to his therapy, and his actions. I really feel that's why things failed before meds. But ADHD, plus PDD NOS (Asperger's), plus being highly gifted (just found that out) doesn't help sometimes. That's a lot of quirks to give a kids, and then expect that the other kids won't notice. :p

Before he starts 1st grade, see if you can arrange for him to see the class room, meet the teacher, all that fun stuff that will allow him to have a better idea of what's coming. Also talk to his teacher before school starts so she knows what coming. That's another thing that I feel made this school year so much better then last.

Imnapl-- thanks, we weren't sure what to expect. We were told it might be better or not help, but we felt it was worth a try. Today he also seems more like himself, but better focus and responsiveness. Still some zoning, though. He never seemed too tired at home, tho, I think when he's tired he just detaches rather than working harder.

Lady Lark-- leveling out in the sense that he doesn't crash so hard at home. Day 2 and 3 were really bad, Day 4 was good, we'll see how day 5 winds up. Good to know you felt he really improved with both. We have the same hope, and with a special ed teacher this fall maybe he can stay on track. He's bright, too, but doesn't test well.

Can you ask the school for an IEP to help him cope, get him some support during difficult situations?


Individual Education Program

*light bulb*
Oh, OK. Yeah, after a while he would crash less hard. So things did level out. Course, we had issues with the medication being less effective over time, which is why we went through four different ones.

Now he's on Strattera and Tenex, and it's working well.
*knock on wood*

Lunacie-- we are in the process of scheduling our 2nd iep mtg soon. Our 1st was just a placeholder, so to speak. The school psycholog and social worker were wanting him in a 12:1:1 right away (all spec ed kids) but our nuerolog and psycholog said he was too smart for that and we should mainstream him. We only specified counselling 2X per week. But mainstream he's getting lost, 0 behav interventions. So I think next year we'll move him to an inclusion class (mixed general + spec ed). In the meantime I have to get educated about ieps really fast.

Lunacie-- we are in the process of scheduling our 2nd iep mtg soon. Our 1st was just a placeholder, so to speak. The school psycholog and social worker were wanting him in a 12:1:1 right away (all spec ed kids) but our nuerolog and psycholog said he was too smart for that and we should mainstream him. We only specified counselling 2X per week. But mainstream he's getting lost, 0 behav interventions. So I think next year we'll move him to an inclusion class (mixed general + spec ed). In the meantime I have to get educated about ieps really fast.

Sounds like you're working with the school and educating yourself, so Kudos to you! Our school doesn't have a mixed class situation, we live in a suburb of a city but just across the county line so many of the services like that aren't available to us. They haven't offered any counseling for our little one through the school, but we are lucky in that the government health insurance has been paying for her to see a family therapist weekly.

Here in Kansas we have a group called "Families Together" that is very helpful in learning about issues like IEPs and dealing with the school. Maybe there is a similar organization in your area that would be helpful?

Sounds like you're working with the school and educating yourself, so Kudos to you! Our school doesn't have a mixed class situation, we live in a suburb of a city but just across the county line so many of the services like that aren't available to us. They haven't offered any counseling for our little one through the school, but we are lucky in that the government health insurance has been paying for her to see a family therapist weekly.

Here in Kansas we have a group called "Families Together" that is very helpful in learning about issues like IEPs and dealing with the school. Maybe there is a similar organization in your area that would be helpful?
That must be so frustrating for you!! We're in nyc, so we do have services but it can require a fight to get them. That's what I'm getting ready for now. We also have to attend a different school to utilize the inclusion class, since our zoned school doesn't offer that. The problem is, they only finally decide where those classes will be at the end of the year, so we can't make any definite decisions until then.

*light bulb*
Oh, OK. Yeah, after a while he would crash less hard. So things did level out. Course, we had issues with the medication being less effective over time, which is why we went through four different ones.

Now he's on Strattera and Tenex, and it's working well.
*knock on wood*

So we had him on the metadate all weekend, but Sat he spilled some and we don't know how much he got. Generally, though, we saw a continuation of the increased focus and attentiveness. Today (Mon, day 8) he's very unfocused again, VERY hyper, and increasingly OCD about superheroes and his Star Wars gameboy game. Also some anxiety again. Any input about your own experiences would be great...when did you decide that meds 1-3 weren't working?

I have to admit, I don't have experience with the comorbid situation. But the PDD situation may or may not be related to meds.
LadyLark's advice always seems to be dead on (maybe I just like to stalk other AS parents, lol), and she's right about having to hold it together during school. There's a link somewhere... aha!
http://www.assew.org/articles/balancing_the_tray.htm
My kid is the perfect little robot in school, but he's gone from 8am to 4:15ish and just lets loose after that! Not pretty. Understandable, but it still takes a big effort not to strangle him!

Also, going with an inclusion class has it's pros and cons, but it sounds like you're probably up on those. In the meantime, there's no real reason why they should be denying accomodations in a mainstreamed classroom, just because there's no inclusion spot available. Their current options, or lack there of, don't override FAPE or IDEA. I would definitely suggest getting a meeting and putting suports in place for the rest of the year.

I'd look up the guidelines if I didn't feel guilty about procrastinating on dinner, but they have to schedule a meeting within x days of your request, and put the supports into place within y days of that meeting. But the closer you get to the end of the year, the closer you get to the point where they don't have to impliment the plan until the fall. I *think that's 30 school days before the last day of the year, but I'm not certain on that.

Hi Jarleigannor--I wish our kid could hold it together in school. Ours is the reverse, wild in school and OK at home. I think it relates to overstimulation and no consequences in school for bad behavior (unless he's really acting out).

The truth is, gen ed teachers are not able to provide the behav mod my son needs, and a para (or shadow) was vetoed in our first iep meeting. The only option we were given was spec ed 12:1:1, which we turned down. We didn't know enough yet about our options. We can fight for a para, but at this point I think they would just delay until next year. I'm hoping and praying we can get him into the right environment, he's a bright kid but too ADHD to focus and too impulsive to stick with activities that he doesn't like (ie writing).

Just want him to succeed the way I know he can.....

Hi Jarleigannor--I wish our kid could hold it together in school. Ours is the reverse, wild in school and OK at home. I think it relates to overstimulation and no consequences in school for bad behavior (unless he's really acting out).

The truth is, gen ed teachers are not able to provide the behav mod my son needs, and a para (or shadow) was vetoed in our first iep meeting. The only option we were given was spec ed 12:1:1, which we turned down. We didn't know enough yet about our options. We can fight for a para, but at this point I think they would just delay until next year. I'm hoping and praying we can get him into the right environment, he's a bright kid but too ADHD to focus and too impulsive to stick with activities that he doesn't like (ie writing).

Just want him to succeed the way I know he can.....

From what I hear, it's definitely more common for the trouble to be in school than at home. I've got to admit, I get a bit jealous on that front, lol. The grass is always greener!

It took me several years to have a firm grasp on education laws, and that's just specific to my state and my child. You may want to look into professional or volunteer advocates in your area. A pro on your side is almost certain to grab the school's attention, but there's also a lot to learn from the parents who have travelled that road in your state, county and, the jackpot of all jackpots, your own district. With a gazillion autism websites and their listings for support groups and message boards, there's a good chance you can find some tips specific to your location and situation.

They're simply not allowed to say that they can't provide behavior mods or a para. They can try to claim he doesn't *need either, and then you're stuck debating need. But, if they're arguing logistics rather than need, they don't have much of a leg to stand on.
I'm puzzled as to what their reasoning would be for being 'unable' to do behavior modifications in a regular classroom, unless you've proposed he have a throne to sit on, a candy dispenser beside him, and a disco ball above him in order to keep him content. ;)

So we had him on the metadate all weekend, but Sat he spilled some and we don't know how much he got. Generally, though, we saw a continuation of the increased focus and attentiveness. Today (Mon, day 8) he's very unfocused again, VERY hyper, and increasingly OCD about superheroes and his Star Wars gameboy game. Also some anxiety again. Any input about your own experiences would be great...when did you decide that meds 1-3 weren't working?

Let's see....
We started on Concerta, and it was wonderful. The first day I didn't have to bug him at all about finishing his lunch, he just did it, got up and put his plate in the sink. I wanted to go look for the pod. :p After a while it seemed to be loosing it's effectiveness. More spacing out, more hyper activity, etc. We upped the dosage several times until we reached the max for his weight without any real improvement. If I'm remembering right, he was on that 5-6 months.

Then came Adderal XR. That never seemed to work at all. We upped the dosage once, but with no effect so we dropped it. That was a couple of months.

Then realizing that this doesn't really seem to be just ADHD (we were pushing a year from the 1st diagnosis here), I started looking into other options. Found a psyc, saw him twice (didn't like him at all), and Steven was put on Ddaytrana briefly. It also didn't seem to help, and he hated it from the get go.

So we dropped everything, found another psyc, and discovered in the moth med free that while we thought the medication wasn't helping at all, it really was, just not a lot. Boy was that kid hyper! And my, at the beginning reluctant to medicate husband was yelling at me for throwing away Steven's left over Adderall when we switched to Daytrana, cause he wanted to give the boy something bad! :p

Like I said, now it's Strattera and Tenex and it seems to be working well. The one thing I found out that I needed to remember was that everyone has good and bad days, regardless of anything else.

Some days he's better then others, and I'm realizing that even his bad days are still better then they were. No more hour plus long meltdowns. No more weekly calls from the school Even the VP mentioned that yes, we still have the occasional problem with Steven, he's no worse then any other kid now. And he's had a much better year then last. :D

(maybe I just like to stalk other AS parents, lol)
Cool. I've never had a stalker before. :)

Thanks so much, Lady Lark, for keeping this thread going! I have a newborn in the house and get to check it only when he permits :) It seems like your decisions to change meds were mainly b/c they stopped working, not that they caused side effects (except for the daytrana?). It's dispiriting to see that you had to wait months to really see a lack of effect, though.

Well, days 8 and 9 on Metadate were scary again. He just looks more autistic--increase in stimming movements, decreased eye contact, more humming, etc. This from a kid that would be considered borderline or that expresses the symptoms when he's overstimulated, not all the time. That and he's more spaced out than he should be and we don't see the focus that we see on the good days. But a few more questions for you if you're still here:

Do you think the meds could increase the PDD? it seems to in our son, definitely increased anxiety and OCD but also stims etc

You mentioned that there are still good and bad days, is it also related to fatigue/poor eating? The past couple of days he hasn't slept as much as he should (getting to bed too late) and didn't eat well at his afterschool program but did eat well at home. I've been trying to get him to drink juice in the afternoon to even him out, but I'm not sure it's helping that much.

How much anxiety/OCD is too much and does it get worse? I'm inclined to just take him off completely tomorrow, but that's only day 11 and we were told to give it 2 weeks.

Do you think he could be chewing the Metadate pellets and getting a hyper dose in the AM and then crashing early in the afternoon? Would that make him hyper?

Thanks again for your advice and wisdom. This is turning into a real rollercoaster ride and it's just the first med, first dose!

We never really had side effects (thankfully). He's been a poor eater for years, and the meds don't change that. He's also gained weight, so it seems to be going good.

The Daytrana is the patch medication. Steven never liked it, even before he ever put it on. I know some kids have had issues with it causing a rash, but he didn't. I don't think he liked the feel of it on his skin. He's not really fond of band aids either. :rolleyes:

Metadate is a new one to me. Is that a stimulant? if it is, I can see how it could make his AS symptoms worse. You should bring that up with the doctor when you next talk. If your son is chewing the pills, that's never good. He'll get too much medication at first, and then crash like you said. Have you asked him if he is?

Some days Steven will eat more, but for the most part his appetite is the same as it's been for years, both before and after medication. He'll have sleep issues occasionally, but not always. I'm thinking at this point it's more just his normal cycle, then any medication or AS issues. Heck, I have times when I sleep worse then normal too.

Metadate is a new one to me. Is that a stimulant? if it is, I can see how it could make his AS symptoms worse. You should bring that up with the doctor when you next talk. If your son is chewing the pills, that's never good. He'll get too much medication at first, and then crash like you said. Have you asked him if he is?

Yes, it's an extended release stimulant form that is little pellets. We've been giving it to him w/chocolate milk but that wasn't a good idea (we were told to put it over applesauce but he hates applesauce). Today I put it in yogurt and he got all of it, no chewing. Yesterday he had a good day and night, we'll see how today goes! So maybe the problem was bad mommy-judgement on how to give the meds...:o

Glad to hear that your son had so few problems on the meds. So many posts detail how horrible the side effects are it made me wonder if anyone had a good experience!

Oh, and I know all about the reluctant hubby. Somehow I see warning flags all the time in my son's behavior but mention PDD to my husband and he goes off the rails. Lately though he hasn't been contradicting me...

So we had him evaluated and he's "ADHD combined-plus", the plus being in our case PDD (like very mild autism).

Hi Teritaki,

First of all -- congratulations about the little one!

Second -- and very important -- when we had our second last year, our firstborn (who was then just a bit over five) went through a very difficult phase for a while. So some of the behaviors you see might be as much related to "sibling rivalry" as to medications.

Our son was intermittently unruly and unresponsive. Of course I'm not saying your son does not have PDD-NOS at all, it's just that the unwanted behaviors might have escalated because of the little one.

Can you write more about his IEP? What is he getting and how often?