We have a 9 year old DS with ADHD who was medicated for about seven months. We started on very low but progressively greater dosages of Biphentin and then when that stopped working he was switched to Adderall. He had a definite increase in tics while on the medications - his psychiatrist said it could be the meds or maybe just 8 yr old boy tics. By the third dosage increase he began having what we called psychotic episodes - not professionally diagnosed as such. He was suicidal, threatened both his sister and I and really was not "there" when we tried to talk him through it. DH and I were terrified. We pulled him from the meds completely and have not looked back in the past eight months. His tics disappeared off meds as well.
We have our son back. He is happy, sunny, funny (and hyper
) but HIM again. On the meds, he really wasn't "there". Yes, it was easier for the school to handle him, but he had stopped eating and growing and was in our terms - zombie boy.
Since getting off the drugs he has shot up two inches and eats like a horse. It's so amazing to see him eating again. Life is much more chaotic, but "normal" for us.
I know, absolutely that the medications are a godsend for many, but for our family, it was the worst possible experience.
Now we turn ourselves to working very closely with the learning services coordinator, making sure his ILP covers ALL accomodations. We had sort of let the school take the lead on this the past two years since his diagnosis, but it has become clear after his final report for this year that much more needs to be done for him. This year I will squeak!
I think some of the issue may have been that he came into the year medicated and no issue to be managed in class, but in December when we quit the meds, things got much more difficult to manage by comparison. There are several kids like my son in his grade and they all seemed to end up in one class together. Again, by comparison, his focus decreased and keeping him on task became much more challenging. He is now behind in math, his reading is average but his writing output is very low. Verbally he is great, so oral testing will have to be more of a component etc.
It's been a huge two year learning curve for us. Initially we relied on the "professionals" to guide us, but we have learned the hard way, that WE have to become the professionals with regards to our child/ren. You're absolutely right that choosing whether or not to use medication is a HUGE decision. We feel like we were "guided" into the Rx route by the school initially - to "help" him, and then got into the "wheel" of busy docs that prescribe but don't properly follow up.
The night of DS's final episode, when he begged me to "please, please hide the kinves because he wanted to run himself onto one" we put in a frantic emergency call to his psychiatrist. No response. The next morning we had decided to pull him off the meds we called again and his receptionist said he was out of the office and only available for emergencies. I told her the circumstances and said in my opinion it was an emergency. She said she'd let him know when he called in and if he felt it was important he would call back. We have NEVER heard from him. At that point we went to the family doc, told him what had happened and what we were doing and that was that with they psychiatrist for us. NEVER in the eight months since have we had a follow up.
Oh, we did get a fundraising brochure from his office about three months ago.
*Sigh* yes. I got one of those little backpack animal harnesses...no go. I even got him his own cute little backpack to see if he might like that but he still doesn't understand "carrying his own stuff" and how great that could be...for mom. 
He does like the brushing therapy but that's about it. 
), so following directions is almost nil ATM. So then I tried a wristband and he ripped that thing off lickety split. Just like w/ the shoe situtation, we're having him try things for just a few seconds at a time. that worked for a rocking horse and the swing to get him to sit in it and be OK. We're able to at least get both shoes on (some days) and count one-two-three and he rips them off. So far there isn't much of a span of time between the counting but getting them ON as huge. One baby step at a time.
Sometimes he doesn't even want a shirt on but he doens't seem to have a sensativity to the cloth or tags. THANKS! I'll give that a whirl tomorrow. 
Tames the jungle eyebrows. 
And that was just because of his head being wrapped w/ gauze. I'm not optimistic about getting a harness on him for our WDW trip, but has anyone ever used something like a Kinderkord or a retractable dog leash and attached it to a belt loop or around the waist? He's getting so he doesn't want to be in his stroller as much anymore but if I put him down to roam he'll take off.
) We used the overalls trick, too.
I'm sorry I haven't posted lately; we went to WDW in June (still thinking about a trip report; not sure if it's a good idea or not
) and then it was back into work at an insane pace. We're working with a new therapist for DD, so we'll just have to see how it goes. Switched to a new church, and WOW- is it awesome for our kids. They provided DD w/ a 1:1 volunteer and she wears her ear protectors; she's loving it and doing sooooo well. They have a well developed and growing special needs ministry for kids and adults, so I'm starting to help out with that.
It makes me so sad to think about still doing this in 2, 5, 10 years. 
Then, I get a snuggle and a kiss and a beaming "Mom" when I get home from work and I am so grateful for what I never dared to dream for! Hang in there and don't get down for a perfectly normal feeling, the main thing is you're not getting stuck in your grief. 
Is it wrong to lie to a 5 year old? 
