The trouble with meds

So, my son has been on meds for maybe a year now? "Jack" started off on Focalin, which the psychiatrist has recently informed me is form of Ritalin. Nice.. well, when he was first on Focalin, at 5mg, I believe (the starting dose, if I can recall correctly), it seemed to work ok. Then we noticed that it wasn't working quite as well- Jack's focus wasn't as good, he was more easily upset, and things of that nature. We could definitely tell when it had worn off after school. When we bumped up to the next dose, immediately he became a mad person. Not angry, although yes, he was angry. I mean insane. I was called to the school to find my son cornered in the board room where I've spent all of my IEP meetings with the staff. He didn't want to leave, but he clearly couldn't stay. I was attempting to get him to come with me, and the school principal was making sure he couldn't leave the other way. Jack was pushing chairs in front of him, growling, yelling.. it all ended up with me getting the car, and the principal carrying Jack out of the school and putting him into the backseat. On the way home, Jack was back there red and a rooster, with his fists and teeth clenched, and trying (I think) to keep himself together. I was just absolutely flabbergasted. I called his pediatrician right away- we hadn't even gotten home yet, and we only live a couple of blocks from school- and just said there is no way we're sticking with this medication. We needed something else ASAP.

That afternoon, I filled a prescription for Concerta (18mg I believe was the starting dose). I kept Jack home that next day and he was perfectly fine. He seemed do do fairly well on this medication, we kept him on this through to the end of 2nd grade, and over the summer. We had the choice of not giving him anything over the summer, but I was afraid that stopping it and then starting it might not be good for his body. Just before the start of 3rd grade, I took Jack to the doctor for a med check, and told the pediatrician that he seemed to be doing well, and that I hadn't noticed any real changes in the evenings, when the medication was supposed to wear off. Because of that and the fact that Jack had put on a couple of pounds over the summer, the doctor felt this meant the medication was no longer effective, and we should try the next dose, at 27mg.

I pretty much started noticing this dose wasn't doing much good, right away. I was also concerned that I was seeing more anger- not just more anger, but when Jack was angry, the way he showed it was explosive and (I felt) detrimental to his emotional and physical well-being. Also, if you look at the facts for both Focalin and Concerta, it says that neither of these medications should be given to people with a "personal or family history of mental illness, psychotic disorder, bipolar illness, depression, or suicide attempt". Jack has always had a temper- even before we knew he had ADHD or Autism. It's been one of those things with him. So to read that, I started wondering how much damage these stimulant medications were doing. I mentioned this to the pediatrician, who then put him on Intuniv.

Things had really gotten pretty bad at school by this point. Jack was suspended for threatening another student on the playground, which created a nightmare in terms of dealing with the school. Up to this year, I think they tried very hard to see Jack as a kid with special needs. This year, clearly I feel he's become a "problem" child to them. The teacher that the principal chose to give him this year has not been a good fit at all, and my husband felt the need to step in and tell the principal what a cluster-f*ck he's created. (Not just that, but sticking up for me in front of the principal and superintendent, about how hard I bust my ass to make sure that Jack is getting the support he needs... and about how much the stress is hurting me and our family because of how they're handling things at school).

I ended up finding a psychiatrist for Jack, in case we needed to deal with other mental issues which required drugs that the pediatrician couldn't dispense. So we did the 1st week of 1mg Intuniv, and Jack was a dream child according to the school. He was very tired and falling asleep in class, but everyone said he was a model student. The second week was 2mg, and it wasn't as perfect as 1mg, but pretty darn close. He stayed on that dose for a month, but honestly, I don't think the 2mg worked as well. He was having difficulty sleeping, and since taking him off the Clonidine once he started the Intuniv (since the Intuniv would make him sleepy as it was), I opted for Melatonin. Mid November, Jack had his first visit with the psychiatrist, who decided it might be worth trying Vyvanse, along with the Intuniv, even though I had said I wanted to stay away from stimulants. His behavior got progressively worse, he had more trouble sleeping than ever, he had itchy skin.. he was only one that drug for 1 week before I took him off of it. I told the psychiatrist that I am just not willing to do any stimulant medication again. I don't know what is wrong with my son, but these drugs cause more harm than good, and it's just not worth it.

After a week of that, I had the pediatrician bump Jack up to 3mg of Intuniv. There were some bad days here and there, little things setting him off, getting somewhat emotional.. There were days when he was super at school (cheery, even!), but at home he was a mess. That was really one of the first times we've seen that, as normally it's the other way around. We were thinking of seeing how 4mg would work, but decided over winter break to keep him on 3. His vacation was great, really. Only a couple moments here and there where he "lost it", but for the most part, all was well. I just knew, however, that going back to school would see a change for the worse. Sure enough, that's what happened. He was overly sensitive about everything, I was called to the school because he got into it with the lunch lady, and threw his lunch bag at her, after which he tried to leave the building.

I have to say that I think a lot of his problems are triggered by the way people deal with him at school. The other kids either aren't very nice, or the teacher doesn't know how to deal with him, etc. The Special Education director went to the school multiple times to observe him (as did the County service coordinator), and every time they observed, he was fine. When they weren't there, that is when problems arose. I honestly believe that the students and teacher acted differently (ie., better) when they were being observed. Jack may not have know why those adults were there, but a kid with Autism isn't going to change how he behaves just to look good. That's not my kid, and never has been. I've just had it up to here with the lot of them, to be honest. We've since taken a tour of a different school in the district that has an Autism program, and I plan to put in a transfer request first thing tomorrow morning (the first date the form becomes available). I'm hoping that a new environment is just the thing he needs. It's not a cure-all, and I don't expect miracles, but I don't see how things could be any worse than they are. Jack got detention last week for drawing a threatening picture to a student who didn't like that Jack was being "affectionate" with him (by touching his face).

We're on 4mg of Intuniv now, and as the last week has definitely seen a downhill slide, I'm not willing to give my kid a higher dose of his medication. Honestly, it might already be too high, but this medication, when it's worked, has been the best thing we've seen him on yet. He's actually started to put on some weight. He's now up to 71 lbs at 9 1/2 yrs old! But as the behavior gets worse, the psychiatrist is suggesting anti-psychotic medications, and I'm not willing to go there just yet. He instead prescribed Zoloft, but honestly I'm leery of that, too. With the side effects my son has been experiencing since he's been on 3mg of Intuniv (frequent stomach issues, pain in his legs), I want to see what else could be going on from a medical standpoint before I put him on anything else. He has an appointment on Thursday, and I'm going to ask the dr to do some blood work. One of my concerns is pediatric hyperthyroidism, and as his cousin has similar issues from being on a 425+mg of thyroid medication, I want to see if Jack's thyroid is working overtime. I'm also planning to find another psychiatrist, and possibly even another pediatrician at this point. I'm just so tired of all this nonsense.