Please tell me about your child with extremely severe ADHD and possible ld at 4. How are they doing?

[Anonymous]

DS is 9. I’m not sure that I’d classify his ADHD as “severe” but he definitely has combined type. We’ve known since he was 3 that something was going on, and he was evaluated in kindergarten. He was also a kid who could not sit down with the group for circle time and needed to be wandering the room, rolling on the floor, chewing on something, making NON-STOP noises, etc. We started medication in first grade (after his teacher said that he couldn’t sit down long enough to even write is name), and it made a world of difference. He's been on Focalin XR, as it worked for him right away. He’s finishing out 3rd grade this year, and is doing great. He still is slower than his classmates to get his work done, but it does get done. He’s an exhausting child at home, but it’s just because he has a ton of energy. The medication really made a world of difference and helped his self-esteem. I know this is overwhelming, but there really are great resources out there. We found a wonderful psychiatrist, and he’s been instrumental in helping us navigate throughout this journey. Best of luck!

[Anonymous]

Anonymous wrote:Can some of you share the medication that worked well for your child? We have tried a couple and they've done nothing for our son (guanfacine and metadate CD)

We've tried Adderal, Focalin, Concerta and Metadate. All have worked well, but with different side effects.

[Anonymous]

My son is 12 and takes 20mg of Vyvance. He is doing great in school.

[Anonymous]

Please recommend your psychiatrist if you feel comfortable doing so. Thank you.

[Anonymous]

Dear op: you are in the toughest years. It gets better. What we did - first, started with some parent coaching - really just learning how to apply evidence based positive reinforcement to our challenging areas. Learning the significance of the language we use, managing our expectations, and doubling down on quality parent/child interactions. Second, when he was old enough, we started him on individual therapy - he does well with cognitive overlay - discussing the issue with his therapist and coming up with strategies. Therapist is also able to help him get unstuck when he gets really rigid in his thinking. Third, started medication at almost 10 - it has been really helpful. Fourth, limit screens always and be very aware of media content. He can be overwhelmed emotionally by themes images above his developmental readiness. Fifth, sleep is very important - try and make bedtime a priority. Their brains need more rest. Sixth, plenty of outdoor time - mix of sports and free play. For awhile, I though team sports might never be a good fit, but we spent a lot of time working on coordination and general fitness (at first years of ot, then gymnastics). We have a rule, every season he needs at least one sport - we give him a choice of about 3 things. For ADHD kids - getting them into clinics so they can build fundamental skills before they start a team helps. My son can either focus on team dynamics/integrating into the team or basic skill but not both at the same time. There is lots of research on how activity helps the brain - I am a big believer in long walks/hikes. if you start researching how different physical activities help the brain - either through reduction of inflammation, reduction of stress hormones, encouraging neurotransmitter production, or encouraging left/right brain communication - you will make a varied physical activity diet a regular part of your game plan for your child and yourself.

Our next task is to get him a tutor to address areas of academic weakness. In public school, have 504 could not get iep and not ready to litigate it. So, spending money on therapy and fairly soon tutoring. In the future, may try academic summer camps.
Finally, listen to your gut. Some of my best ideas came from just being present for my child and sensing what he needed. Also find other parents with ADHD kids - don't worry u will be able to spot them a mile away on the playground.

[Anonymous]

Anonymous wrote:I just want some kind of understanding for the future. We are not on meds yet and can't be for the foreseeable future. My son runs everywhere. He can't focus for more than ten seconds. He wanders the room at preschools and social stuff. He hits when overwhelmed. He can't make eye contact because he is so restless. I've never seen ADHD this severe and I don't have any idea what to expect. Any experience to share? I can't imagine him at a mainstream school.

Ours had just turned five. I saw him struggling in school. Went on field trip. Observed a nightmare for all involved. Tried small dose of Focalin. It was miraculous. Child even articulated this. This small dose worked like a charm for about 6 mo. Later had to increase and then change. 4 years later he's on concerta. No behavior problems ever at school. Happy seemingly well adjusted boy. Still distractable and inattentive some. Mostly doing well. Lots of friends, plays sports, does well in most classes.