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

[Anonymous]

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.

[Anonymous]

If he has been formally assessed by a reputable dev ped or psychologist, surely they had recommendations for your situation?

I know of two families who have decided, much against their preference, to medicate their 3 or 4 year old suffering from severe ADHD. It's a painful decision.

[Anonymous]

We medicated at 5. He is doing great in K in a mainstream school (parochial school actually). He has his days that aren't the best, but we talk through them, and his teacher is great communicating with us about any patterns or concerns she sees in his behavior.

We don't see signs of any learning disabilities yet. We are well aware that the school may not be the best fit for him long term, but our older children attend so we wanted to give it a try. I can't overstate the difference the medication made, immediately, on day 1. We've had to adjust dosage, number of doses, etc about 3 times in the 1 year he has been on the meds, but when they're working, he is, for the most part, a typical 6-year old boy.

[Anonymous]

Medicated at 6. Doing great at FCPS, in AAP. Both social interaction and academics are harder for DC than others, but DC works hard and does have friends.

[Anonymous]

My son was the same. Due to medical issues, we could not medicate until age 8. I won't sugar coat it - school is tough when you can't medicate. My son could not watch even 30 seconds of TV until he was in ES. I held my son back a year, which helped because his skills we slightly better after the extra year and so the behaviors didn't interfere quite as much. My son was most successful with teachers who didn't expect him to sit in his chair. He could walk around, lay on the floor, roll on the floor, whatever, so long as he was working. One year, he actually forward rolled through the school for almost the entire year instead of walking. But, it takes a special teacher to be successful with this type of kid. The other thing is that he got pull outs for all academic activities - this wasn't on his IEP, so I didn't know it at first - I found out when we ran into his paraeducator at Costco. Even with the extra year, he didn't know his letters or colors and couldn't count correctly past maybe 5 or 10. He couldn't focus on academics while in the classroom setting. The two things that helped were maturity and medication.

As for outside of school, I was pretty tolerant of his behavior. It drove others crazy (my family, my MIL, friends, his doctors, probably everyone who came to our house). But, I grew up with brothers with ADHD so I was kind of used to a wild house. Plus, my son was fun and sweet and the love of my life. He was exuberant and inquisitive. There were things we didn't do - like eat out unless it was at a sports bar while a big game was happening and everyone is nuts, go to movies and other activities where you have to be quiet or you will bother others.

My son is now in middle school and he's doing very well. But, none of this is by chance. I worked very hard with him on identifying and developing the skills he needed to be successful at school and both the school and I worked on them very intensely. The ES years were really important for this because once you hit MS, the expectation is greater independence and there is not staff time to help develop these sort of skills.

[Anonymous]

Anonymous wrote:My son was the same. Due to medical issues, we could not medicate until age 8. I won't sugar coat it - school is tough when you can't medicate. My son could not watch even 30 seconds of TV until he was in ES. I held my son back a year, which helped because his skills we slightly better after the extra year and so the behaviors didn't interfere quite as much. My son was most successful with teachers who didn't expect him to sit in his chair. He could walk around, lay on the floor, roll on the floor, whatever, so long as he was working. One year, he actually forward rolled through the school for almost the entire year instead of walking. But, it takes a special teacher to be successful with this type of kid. The other thing is that he got pull outs for all academic activities - this wasn't on his IEP, so I didn't know it at first - I found out when we ran into his paraeducator at Costco. Even with the extra year, he didn't know his letters or colors and couldn't count correctly past maybe 5 or 10. He couldn't focus on academics while in the classroom setting. The two things that helped were maturity and medication.

As for outside of school, I was pretty tolerant of his behavior. It drove others crazy (my family, my MIL, friends, his doctors, probably everyone who came to our house). But, I grew up with brothers with ADHD so I was kind of used to a wild house. Plus, my son was fun and sweet and the love of my life. He was exuberant and inquisitive. There were things we didn't do - like eat out unless it was at a sports bar while a big game was happening and everyone is nuts, go to movies and other activities where you have to be quiet or you will bother others.

My son is now in middle school and he's doing very well. But, none of this is by chance. I worked very hard with him on identifying and developing the skills he needed to be successful at school and both the school and I worked on them very intensely. The ES years were really important for this because once you hit MS, the expectation is greater independence and there is not staff time to help develop

these sort of skills.

You are an awesome mom. I feel so frustrated most of the time and this post is inspiring. You changed your son's life.

[Anonymous]

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)

[Anonymous]

We've gone from Focalin at a young age (5/6) to Daytrana patch (worked well but irritated skin and not realistic for long-term use, plus our insurance stopped covering it), and are now on Concerta at age 9/10, which works well. None of them are perfect, but the Concerta is good because it lasts a long time and gets him through school as well as aftercare and homework time. I give him a small booster of Focalin if he has sports practice in the evening. Recently we added the non-stimulant Intuniv (guanafacine) 2 mg, which improves bedtime slightly.

[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)

7:41 here. My DS is on Focalin XR--one in the morning and one after lunch.

[Anonymous]

9:10 here. Thank you 0:09 - that was a very nice thing to say.

We started with Focalin. Worked very well but after two weeks he had side effects. So we went to Vyvanse and he's been on it ever since. He is now at 60 mg and for medical reasons cannot go higher. He also takes adderal (not the long acting version) 7.5 mg in the evenings when he has activities where his impulsiveness would cause a safety risk.

[Anonymous]

I realize it's a very individual and personal decision but the CDC just said something about NOT medicating until 6 unless behavior therapy doesn't work.

[Anonymous]

Just a word of support. My son was diagnosed with severe ADHD at age 4. We started him on medication then. After being kicked out of 2 preschools, he had a tremendous amount of progress in 3 years at the Maddux School.

He has been in at public schools since 2nd grade. Overall things are good although we have had behavioral issues along the way. He is still medicated (and again, not always easy to figure that out).

For us, it has been so much better as he gets older. Hope things work out as well for you.

[Anonymous]

Anonymous wrote:Just a word of support. My son was diagnosed with severe ADHD at age 4. We started him on medication then. After being kicked out of 2 preschools, he had a tremendous amount of progress in 3 years at the Maddux School.

He has been in at public schools since 2nd grade. Overall things are good although we have had behavioral issues along the way. He is still medicated (and again, not always easy to figure that out).

For us, it has been so much better as he gets older. Hope things work out as well for you.

Forgot to mention that my son is now 11 and in 5th grade.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just a word of support. My son was diagnosed with severe ADHD at age 4. We started him on medication then. After being kicked out of 2 preschools, he had a tremendous amount of progress in 3 years at the Maddux School.

He has been in at public schools since 2nd grade. Overall things are good although we have had behavioral issues along the way. He is still medicated (and again, not always easy to figure that out).

For us, it has been so much better as he gets older. Hope things work out as well for you.

Forgot to mention that my son is now 11 and in 5th grade.

Thank you so much! I am so glad to hear things are going well. I feel for kids like mine so much now.

I wish we could go to Maddux, but they - while wonderful - told us it was only a possibility if we could medicate (my son is SO hyper), and we can't for medical reasons. I am hoping to go there for K and 1-2, when we can. Best to you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My son was the same. Due to medical issues, we could not medicate until age 8. I won't sugar coat it - school is tough when you can't medicate. My son could not watch even 30 seconds of TV until he was in ES. I held my son back a year, which helped because his skills we slightly better after the extra year and so the behaviors didn't interfere quite as much. My son was most successful with teachers who didn't expect him to sit in his chair. He could walk around, lay on the floor, roll on the floor, whatever, so long as he was working. One year, he actually forward rolled through the school for almost the entire year instead of walking. But, it takes a special teacher to be successful with this type of kid. The other thing is that he got pull outs for all academic activities - this wasn't on his IEP, so I didn't know it at first - I found out when we ran into his paraeducator at Costco. Even with the extra year, he didn't know his letters or colors and couldn't count correctly past maybe 5 or 10. He couldn't focus on academics while in the classroom setting. The two things that helped were maturity and medication.

As for outside of school, I was pretty tolerant of his behavior. It drove others crazy (my family, my MIL, friends, his doctors, probably everyone who came to our house). But, I grew up with brothers with ADHD so I was kind of used to a wild house. Plus, my son was fun and sweet and the love of my life. He was exuberant and inquisitive. There were things we didn't do - like eat out unless it was at a sports bar while a big game was happening and everyone is nuts, go to movies and other activities where you have to be quiet or you will bother others.

My son is now in middle school and he's doing very well. But, none of this is by chance. I worked very hard with him on identifying and developing the skills he needed to be successful at school and both the school and I worked on them very intensely. The ES years were really important for this because once you hit MS, the expectation is greater independence and there is not staff time to help develop

these sort of skills.

You are an awesome mom. I feel so frustrated most of the time and this post is inspiring. You changed your son's life.

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