Stephmanietta
New Member
This is my first post here. I found you guys last night while doing a "Google" search for children with developmental delays.
I have felt very isolated because of my sons issues, so it was comforting to see that I really am not all alone.
I am not really sure what I am looking for in posting here, I guess mostly advice, but maybe also in the hopes that someone else has been through something simillar and made it through.
My oldest son is 8--and-a-half. From the time he was about 2 my mother started telling me something was just a bit "off" with him. He was my first and an only child, so I attributed his lack of attention span and hyperactivity to restlesness and "Terrible Twos". As time continued to pass I could no longer deny it was more than just normal childhood rebelion.
I tried talking to the pediatrician about it, but they were not concerned and said it wasnt something they would worry about untill 1st grade. That seemed obsurd to me to wait untill he was that far behind so I persued a referal to Nuerology, since he was almost 4 at this time and everyone told me that was my only option.
Right before he turned 4 he went and saw the pediatrician. Nuerologist. The Dr. spent 10 minutes in the room with him and talked to me for maybe 15 minutes. Asking the questions that I had already done enough research to know were to decide if he was going to be catagorized under Autism or just Behavioural.
The Dr, left the room and a while later a nurse comes in and explains that they are going to start him on Risperdone for the violent behaviour and Tenex for the Hyperactivity. I ask what they are diagnosing him with and am told that at this early stage the diagnosis is unimportant, that they are concerned with treating the symptoms and not with giving him a label.
At this piont that did seem to make sense. They ask that he come back for follow up in a year.
Over the next year very little changed. I noticed drousiness shortly after taking the medications, but he was still very impulsive, violent, extremely hyperactive, and was failing to meet his develpmental milestones. He had trouble falling asleep and couldnt stay asleep. He couldnt follow simple 1 step directions without getting distracted, and had become defiant to anything I tried to get him to do.
We continued to do the follow up with the Nuerologist. The pediatrician wanted nothing more to do with him and would hardly do his checkups, they acted as if the specialist should take over primary care.
Time passed and as my frustration would grow they would "try" a different medication in what felt like an attempt to get me to stop calling them. They put him on Concerta which gave him a rash so we stopped, so the put him back on Risperdone, and changed him to Intunive, a time released version on Tenex. He was a little more grougy and slept a little better but after a few months we were right back in the same boat. He would hurt his little brother, I was afraid or him, he began hurting himself, hitting himself, banging his head on the walls and such. He seemed to be set off by almost anything. He wouldnt go to school, he just refussed, he would sit on his bed and fight me when I tried to get him dressed and make him go. He was big for his age, so even though he was only 6 he was 75 pounds and very strong.
The school refussed to put him in special needs classes, he was obviously developmentaly delayed. He was evaluated by a Phyciatrist when he was 7 and they said he was mentally processing things at the rate of a 4 year old. His logic and reasoning skills were at the same level.
The phyciatrist guessed that he had somehow mysteriously obtained a frontal lobe injury that had gone unnoticed and that it had casued damage to the logic area of his brain and that was the source of all of his problems. He was put on Adderal and Depakote, along with what he was already taking. I had serious reservations about it but decided to go along with it out of desperation really.
After 2 weeks on this combination I was considering having him addmited to the nearest hospital for a 72 hour hold. He was like the HULK, myself and his younger siblings were afraid of him, you never knew what you were going to say that was going to make him angry, or what he was going to do once angry.
One day I ask him to pick up the toys he was playing when he was done, He had a completely phycotic reaction, he began to scream and throw the toys at me. I tried to get the younger kids to saftey and he started picking up furniture and throwing it at us. The coffee table, kitchen chairs, lamps, everything he could pick up. Myslef and his 3 younger sibbling spent the next hour locked in my bedroom hidding from him while he threw everything in the house at the door trying to get in. pots, pans, knives, everything. Finally he stopped and got quiet. I came out and found him crying in his room. He was so ashamed and sorry for what he had done, he kept saying he didnt mean to.....It was like he was trapped in his body watching himslef, with no control....I stopped the Adderal and weaned the Depakote against the Dr's wishes at that point.
since then we have moved to a different state and it seems to be even harder to find anyone to treat him. Everyone wants to pass him on to someone else. pediatrician says Mental Health, they say Nuero, Nuero says Develpmental specialist.
I know this has been a long post, I am sorry, I just dont know what to do. He has only had a diagnosis of ADHD and ODD, I do beleive those are acurate but I thing they are secondary to something else.
He cannot read, He has a wonderful memory and can remember lines from a movie he saw when he was 2, or a conversation he had with someone at 3, but somehow the letter shapes and sounds just doesnt stick with him.
Socially he is an outcast, he wants more than anything to be liked and I thing to be like the other kids that he gives his classmates his things and lets them walk all over him to "be friends" but does not understand social interactions. He has an attention deficite but not so much hyperactivness anymore. He stutters and has trouble turning his thoughts into words, he is delayed in every subject, he has repeated the 1st grade but still has not mastered 1st grade material. He should be starting 3rd grade.
He is violent and Immpulsive, but he also over does the other emotions, he has huge extremes, he is either so angry he cant see straight, or so Happy he cant contain himself, or so sad he doesnt get out of bed all day, and it is not in proportion to the situation, He would take the bad news that he missed a TV show the same as he would that his best friend passed away....It is hard to explain I hope I am getting it through right.
He is a sweet boy with a huge heart, He is very loving, and when he gets manic its like someone else is doing it.
I am trying to get him an accurate diagnosis. When he was 3 and they were telling me he would just grow out of it, it may not have mattered what I called it, But now I have little faith it will just resolve one day and he will be normal. I believe he will need to be cared for his whole life, and I need to educate myself and try to prepare for that. And I need to be able to find the best treatments and therapies for him.
I have done research and I think he falls into Pervasive Developmental Disorder (PDD) for sure and I think even syndromatic mental retardation is a very good possibility.
Any impute would be appreciated and I appologise for the length and spelling errors.
I have felt very isolated because of my sons issues, so it was comforting to see that I really am not all alone.
I am not really sure what I am looking for in posting here, I guess mostly advice, but maybe also in the hopes that someone else has been through something simillar and made it through.
My oldest son is 8--and-a-half. From the time he was about 2 my mother started telling me something was just a bit "off" with him. He was my first and an only child, so I attributed his lack of attention span and hyperactivity to restlesness and "Terrible Twos". As time continued to pass I could no longer deny it was more than just normal childhood rebelion.
I tried talking to the pediatrician about it, but they were not concerned and said it wasnt something they would worry about untill 1st grade. That seemed obsurd to me to wait untill he was that far behind so I persued a referal to Nuerology, since he was almost 4 at this time and everyone told me that was my only option.
Right before he turned 4 he went and saw the pediatrician. Nuerologist. The Dr. spent 10 minutes in the room with him and talked to me for maybe 15 minutes. Asking the questions that I had already done enough research to know were to decide if he was going to be catagorized under Autism or just Behavioural.
The Dr, left the room and a while later a nurse comes in and explains that they are going to start him on Risperdone for the violent behaviour and Tenex for the Hyperactivity. I ask what they are diagnosing him with and am told that at this early stage the diagnosis is unimportant, that they are concerned with treating the symptoms and not with giving him a label.
At this piont that did seem to make sense. They ask that he come back for follow up in a year.
Over the next year very little changed. I noticed drousiness shortly after taking the medications, but he was still very impulsive, violent, extremely hyperactive, and was failing to meet his develpmental milestones. He had trouble falling asleep and couldnt stay asleep. He couldnt follow simple 1 step directions without getting distracted, and had become defiant to anything I tried to get him to do.
We continued to do the follow up with the Nuerologist. The pediatrician wanted nothing more to do with him and would hardly do his checkups, they acted as if the specialist should take over primary care.
Time passed and as my frustration would grow they would "try" a different medication in what felt like an attempt to get me to stop calling them. They put him on Concerta which gave him a rash so we stopped, so the put him back on Risperdone, and changed him to Intunive, a time released version on Tenex. He was a little more grougy and slept a little better but after a few months we were right back in the same boat. He would hurt his little brother, I was afraid or him, he began hurting himself, hitting himself, banging his head on the walls and such. He seemed to be set off by almost anything. He wouldnt go to school, he just refussed, he would sit on his bed and fight me when I tried to get him dressed and make him go. He was big for his age, so even though he was only 6 he was 75 pounds and very strong.
The school refussed to put him in special needs classes, he was obviously developmentaly delayed. He was evaluated by a Phyciatrist when he was 7 and they said he was mentally processing things at the rate of a 4 year old. His logic and reasoning skills were at the same level.
The phyciatrist guessed that he had somehow mysteriously obtained a frontal lobe injury that had gone unnoticed and that it had casued damage to the logic area of his brain and that was the source of all of his problems. He was put on Adderal and Depakote, along with what he was already taking. I had serious reservations about it but decided to go along with it out of desperation really.
After 2 weeks on this combination I was considering having him addmited to the nearest hospital for a 72 hour hold. He was like the HULK, myself and his younger siblings were afraid of him, you never knew what you were going to say that was going to make him angry, or what he was going to do once angry.
One day I ask him to pick up the toys he was playing when he was done, He had a completely phycotic reaction, he began to scream and throw the toys at me. I tried to get the younger kids to saftey and he started picking up furniture and throwing it at us. The coffee table, kitchen chairs, lamps, everything he could pick up. Myslef and his 3 younger sibbling spent the next hour locked in my bedroom hidding from him while he threw everything in the house at the door trying to get in. pots, pans, knives, everything. Finally he stopped and got quiet. I came out and found him crying in his room. He was so ashamed and sorry for what he had done, he kept saying he didnt mean to.....It was like he was trapped in his body watching himslef, with no control....I stopped the Adderal and weaned the Depakote against the Dr's wishes at that point.
since then we have moved to a different state and it seems to be even harder to find anyone to treat him. Everyone wants to pass him on to someone else. pediatrician says Mental Health, they say Nuero, Nuero says Develpmental specialist.
I know this has been a long post, I am sorry, I just dont know what to do. He has only had a diagnosis of ADHD and ODD, I do beleive those are acurate but I thing they are secondary to something else.
He cannot read, He has a wonderful memory and can remember lines from a movie he saw when he was 2, or a conversation he had with someone at 3, but somehow the letter shapes and sounds just doesnt stick with him.
Socially he is an outcast, he wants more than anything to be liked and I thing to be like the other kids that he gives his classmates his things and lets them walk all over him to "be friends" but does not understand social interactions. He has an attention deficite but not so much hyperactivness anymore. He stutters and has trouble turning his thoughts into words, he is delayed in every subject, he has repeated the 1st grade but still has not mastered 1st grade material. He should be starting 3rd grade.
He is violent and Immpulsive, but he also over does the other emotions, he has huge extremes, he is either so angry he cant see straight, or so Happy he cant contain himself, or so sad he doesnt get out of bed all day, and it is not in proportion to the situation, He would take the bad news that he missed a TV show the same as he would that his best friend passed away....It is hard to explain I hope I am getting it through right.
He is a sweet boy with a huge heart, He is very loving, and when he gets manic its like someone else is doing it.
I am trying to get him an accurate diagnosis. When he was 3 and they were telling me he would just grow out of it, it may not have mattered what I called it, But now I have little faith it will just resolve one day and he will be normal. I believe he will need to be cared for his whole life, and I need to educate myself and try to prepare for that. And I need to be able to find the best treatments and therapies for him.
I have done research and I think he falls into Pervasive Developmental Disorder (PDD) for sure and I think even syndromatic mental retardation is a very good possibility.
Any impute would be appreciated and I appologise for the length and spelling errors.
