We've got ADHD in the family as well as autism. difficult child 1 was originally diagnosed ADHD when he was 6, was put on ritalin which helped but didn't fix it all. There were still a lot of problems. Then we found we had problems with the doctor, so we moved on - and the next doctor doubled his medications. Suddenly, big improvement. But then we began to notice rebound problems - that's when as each pill is wearing off, it's as if all the suppressed symptoms suddenly come out, all at once.
We had dosage problems too, which made for more problems (political issues with school - no long-acting medications available for us at that time). Then when difficult child 1 was about 13-14 and difficult child 3 was 3, and easy child 2/difficult child 2 was 10 - we had to change doctors again (difficult child 1's doctor could only see one child, not all three). And the new doctor diagnosed ADHD plus autism in difficult child 3; ADHDplus Asperger's in difficult child 1; ADD (inattentive type) with Asperger's traits in easy child 2/difficult child 2. The rebound problem in difficult child 1 - he switched him to dex, a different stimulant. And began dex treatment with the other two kids.
After some months on dex and finding it helped a lot (it was almost miraculous with the younger two, we already knew difficult child 1 was better with stims) the doctor put us in touch with a compounding pharmacist to get the dex made up into long-acting forms. This was even better - it meant the dosage could actually drop a little.
Some years later, and Concerta (long-acting ritalin) finally became available in Australia. difficult child 1 didn't want to change, even though the doctor said the rebound probably wouldn't be a problem with long-acting. After a longer interval, we decided to try it with difficult child 3 (from December 07). We found it didn't seem to be helping him as much and he showed some mild rebound.
When I talked to the doctor it turned out he'd written the Concerta for too low a dose (which is why it didn't seem to work as well) but at the right dose, rebound became much worse.
So we switched difficult child 3 back to his earlier dose of long-acting dex. Then we still had problems - difficult child 3's dose hadn't been increased for a number of years and he was now almost twice the weight now, so we upped the dose and again, like magic he's much better.
Rebound may not happen. Or it could happen with either stimulant. We've known kids to have no rebound on ritalin but rebound on dex. Our boys are the other way around.
We copped a lot of criticism starting difficult child 3 on dex at the age of 3. But we were desperate, so was the doctor. The difference was so dramatic that we felt justified. To keep difficult child 3 off stims entirely would have really set back his development considerably.
difficult child 3 had significant language delay and at age 3 was using single words only, usually only words he could already read. He could pick up a book and read from it fluently, but did not understand a word of what he read. When we started him on dex, easy child was away at camp for a week. She came back five days later and heard difficult child 3 talking in complete sentences for the first time. It was that amazing, that effective - and we had no doubts about doing this, for the first time.
Yes, we copped criticism, even from people who had not known about difficult child 3's extremely young age at beginning stims. I was at a school luncheon sitting with one of the many other parent contributors when she turned to me (totally unknowing of our story) and said, "So what do you think of these mothers who drug their kids into submission by giving them stimulants?"
That woman had her own vested interest - she makes a living for herself, direct marketing a dubious and expensive "natural product" around the town, using her browbeating tactics to win customers. But I won't be browbeaten. I politely told her that I AM one of those mothers who medicates her children in order to provide in their brains the trace amount of drug to stimulate brain pathways which otherwise remain dormant; the drug stimulates the inhibitory centre which in my kids does not seem to be working properly. When administered to achild in whom this inhibitory centre works properly, there whould be little to no observable change. It is when the medications work so amazingly well, as in my kids, that I feel vindicated.
Amazingly, this woman didn't know when to quit. She went on to tell me how SHE has ADHD herself (inattentive type) and refuses to use stimulants - and surely she seems normal now? "That is because I use natural stimulants," she told me. "I drink cola, it has caffeine in it. Or I take guarana. Why not try your kids on that?"
Again I explained - we HAD found, to our cost, that caffeine (and orange juice) would set off difficult child 1 and difficult child 3, in terms of rebound-type symptoms. It was nasty - at one point, unmedicated and also hopped up on caffeine, difficult child 1 smashed a bottle and went after a classmate. While stims have been carefully developed and tested as to efficacy and range of known side effects, no such studies have been done with caffeine but our own anecdotal experiences have taught us to beware. Stims are a fine-tuned medical tool - caffeine is the chemical equivalent of a blunt instrument. I know which I would rather use.
Hats off to the woman for determination and also good manners - we stayed on good terms, but she did finally realise that she should never try to sell me any of her products, ever again.
Marg
