OP back to update. We had success with an ADHD med for a couple of weeks and then - they discontuinted that dose. ARGH. We are doing the higher dose and it is a disaster. Problems again across the board. Aggressive at home, probably at school although they don't report it (? I wish they would. It is so frustrating. And I ask.)

Just a difficult, noncompliant, defiant, sensory seeking, dysregulated, hyper, impulsive, emotional, angry mess, no matter how much OT, ABA, time in, loving up, attention giving, cuddling, medication, agonizing, you name it, we try. I am so discouraged. I truly am. I think I have hit the point where I no longer believe things are going to be okay and I have to just know he is severely disabled in terms of behavior and work my way to acceptance.

Adderall chamged DS's. everything improved. It was the third med we tried as the non stimulant Mesa did not work well.

I'm better, as the parent, because I'm taking medication. As DD gets older (9) and she is more aware of herself - with therapy.

Anonymous wrote:
I agree with others that at such a young age, labels can be wrong. We were told my son absolutely did not have ASD, but clearly at 11, the tendencies are there, besides his severe inattentive ADHD.

You have to keep trying meds, therapies and behavior modifications of your own, and in a few years, things will become much clearer. Hang in there!

One interesting book I'm reading right now is the classic "The Motivation Breakthrough" from Richard Lavoie. Perhaps it could help you too.

Thank you! I am not even worried about labels at this point, I just want help. And I think we are doing everything that would be done if he had asd, ABA, OT and speech. Right? So, I am just going to let that one unravel itself. I just want to know what I can do to get some relief here.

Anonymous wrote:What drug are you trying? Is it a starter dose?

we tried starter doses of qullivant and focalin, both made him more emotional, weepy, and agressive. Major rebound for hours.

I agree with others that at such a young age, labels can be wrong. We were told my son absolutely did not have ASD, but clearly at 11, the tendencies are there, besides his severe inattentive ADHD.

You have to keep trying meds, therapies and behavior modifications of your own, and in a few years, things will become much clearer. Hang in there!

One interesting book I'm reading right now is the classic "The Motivation Breakthrough" from Richard Lavoie. Perhaps it could help you too.

Hi all - OP here again. So, I think we have concluded that neither focalin or quilliavnt XR are going to work. Both at small doses made my son even MORE emotional and weepy and the rebound from quillivant was horrible and went on for hours. I shudder just thinking about it. Complaints from school, nanny, and ABA therapist and just crazy awful behavior. We are headed back to the neuro this week. I am truly worried that we are missing a much more serious seizure issue so I am pushing to do another long EEG. We shall see. Hoping for some respite soon. I just dread the future. If he is this difficult at just 5, I just don't know what it looks like for him. Thank you all again.

Op here - thank you all so much for providing me some hope to push on. Sorry for not responding - I have been really down and the slog of appointments is killing me with work and the other kid and blah blah. Nothing you don't all already know about. We do aba now and I'm ramping it up. We are also adding a tutor to work on basic school stuff to hopefully make k a bit better. We do OT twice a week, and speech twice a week, and pep every day. So it's a lot. But I don't think I can really cut any of it right now. It's just draining for all of us and sometimes I feel like nothing at all is helping.

I'm kind of hanging on to the hope that the mess will help. But I know there are people who don't successfully medicate until later so I have to be realistic.

Thank you all so much again. I'm so glad for this community.

OP, I don't want to be hard on you, but it feels like people have gone out of their way to give you success stories, and you have kind of disappeared. Is that your depression or are you just not getting what you want here?

Here's a success story. We had a very difficult son, diagnosed with ADHD. At 5, He threw tantrums, refused to leave the house and get into the car, hit me and other children, etc. When he started school we learned suprisingly that he was able to control his behavior at school, and was a very energetic learner. He would fall apart when he got home and cry and have tantrums, but next morning he's be happy to go off to school. Because school was OK we decided not to medicate, but kept that option open. Gradually he turned into a very good, self disciplined, and outspoken student. He became a great public speaker and debater. By high school he asked for medication to help him study and take tests. So we got meds, but he decides when to use them. In high school he kept up a strong academic schedule, played a sport, and did every extracurricular activity he could. He needs very little sleep. He is now a freshman at a top twenty university and is doing well. He has amazing energy and is very self-motivated. He still demands a lot of attention from us and lets us know if he doesn't think we are doing what he thinks we ought to do, but is able to interact with professors, peers, and other family members successfully and is doing well socially and academically at college.

My kiddo is 10. Even though things could be better, we've been through some stuff. For many years we could only go to playgrounds that were fenced in. He is my only one but if the playground was not fenced in we'd be running all over the place, including into the street.

Also, educations work differently for each person. One of the previous posters mentioned what mess she had been through. She didn't like risprodril but likes Zoloft. Zoloft wasn't good for my kid So work closely with your doctor.

Things do get better with maturity.

Have you read Kazdin?

Anonymous wrote:What drug are you trying? Is it a starter dose?

Yes, it is. We are working with a neuro because we have other issues. I think that makes it all very complicated. Behavior could be attributable to the other issues also. But we still have to deal with it.

We've also found that things got better at ages 8, 9, 10 . . . DS really needed to mature, which allows him to better understand and control his emotional regulation. It is not perfect, but at least he understands himself better, we can have a dialog and he can work with his therapist.

Also, my parenting of him, for who he is, improved over time. I think that's really important. Differently wired kids aren't easy to parent and you often have to throw out the traditional rule books to do it right. And change your perspective so you're working with them instead of against them. I think Dan Shaprio's class really helped, if you're in the area.

Just anecdotally I think five is the worst of things. I have seen two nephews come through the thick of ADHD and now one is 10 and one is 13. At 5 it looked pretty much like what you described -- with episodes like taking apart the television, physical acting out in bizarre ways including spitting, a lot of fighting in school. We really felt like these kids would have life long issues.

Now the thirteen year old is a virtuoso instrument player who is a first chair in a youth orchestra. Nicest kid ever. 10 year old is a consummate athlete. Both do well in school, great kids. No more medications.

Time is on your side, OP. I know life is very hard right now. Hang in there.