8 Year old boy with Dev Delays and ADHD

Discussion in 'General Parenting' started by Stephmanietta, Jun 10, 2012.

  1. Stephmanietta

    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.
  2. TeDo

    TeDo Guest

    Welcome to our little corner of the world. Glad you found us but very sorry you needed to. You are right to search for answers. That makes you a Warrior Mom.

    First, I would find a reputable neuropsychologist. They evaluate and test everything. They look at the whole picture and are usually pretty accurate. I also think you're right about having him tested for Autism Spectrum Disorders (ASD). Your story sounds very familiar to mine. difficult child 1 has great difficulty reading and writing but his memory for certain things are tremendous. Kids on the spectrum don't typically do well on stimulants so you were right to stop them when you noticed there was a problem.

    Second, send a written request to the school district "requesting a thorough evaluation for special educations services including but not limited to thorough academic, psychological, emotional, behavioral, speech-language, and occupational, and autism evaluations". Send the request to the Superintendent AND the Director of Special Education. Make sure you send it Certified Mail with Return Receipt Requested. This starts a federal timeline for them to get the evaluations done.

    Third, you might also look into an independent Occupational Therapy evaluation. A lot of the time there are unkown sensory issues that compound the problems. They are more thorough than the one the school will do.

    Fourth, and last, get a copy of the books "The Explosive Child" by Ross Greene and "What Your Explosive Child Is Trying To Tell You" by Dr. Doug Riley. Both books will really open your eyes to different ways to look at his behavior. It usually happens for a reason and it is our job to figure out what is behind it and find ways to help him learn to deal with/correct it.

    {{{{HUGS}}}} to you.
  3. buddy

    buddy New Member

    Hi and welcome. I agree with TeDo and your thoughts too. Those symptoms could stand alone or be that bigger picture kind of thing.

    And do you mind if I put on my Speech Language Pathologist (SLP) hat for a second? Not about your child of course ...but as a special needs person.....any doctor who diamisses concerns and especially who says to wait! is very out of touch with best practices. One thing that is tried and true in the research ....early intervention is most helpful. Does it cure? No ...but can you help remediate and prevent bigger issues ...ummm that is just common sense. And for the neuro not to discuss options with you? Well ....when I meet a new doctor I ask them if they are team players? Do they personally respond to emergency calls if I request? ...I pray you can find someone like that.

    I hope you can find a neuropsychologist to do new testing. A developmental pediatrician can also have a team that is good. As tedo said a more complete Occupational Therapist (OT) evaluation would be good as well.
    I'm on my phone so will check in later. I know the feeling of having a raging child so my heart is connected to your post. Hope you come here often at least to know you are not alone.
    Last edited: Jun 10, 2012
  4. pepperidge

    pepperidge New Member

    I think you may want to evaluate medications. Tenex turned my son into a more of a physically aggressive monster. While some stimulants for ADHD can be incredibly helpful they can also make some kids more aggressive. If you havent' seen any benefits from the medications, perhaps it is time to ask the doctor for a medication wash.

    I am so sorry, it is so frustrating not to find anyone to help. You don't say where you are located. Perhaps if you give us some idea, we could send you private messages with some suggestions. There are some good clinics and teaching hospitals out there that might be of help.l
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Agree with the Autism Spectrum Disorders (ASD). In the US, we take the kids to neuropsychs.

    Where do you live? Maybe somebody from your country posts here and can help you out.

    I loathe when doctors tell you that your child will "outgrow" obvious problems. I'll bet it's 90/10 that is doesn't happen then the child has missed so many years of help (sigh).
  6. Stephmanietta

    Stephmanietta New Member

    I am in the US, NW Florida, but just resently moved from Southern California. He was seem by Loma Linda pediatrician Neurology.
    I havent been in Florida long, and my youngest son has recenly started having seizures so I have been pre-ocuppied with that. I suspect similar problems in my younger son, he shows alot of the same behaviours and lack of attenetion span. Severe Hyperactivity, and complete recklesness. Although now with the seizures I am not sure. Had an EEG that was abnormal and still awaiting results of MRI.

    I tried the Family Dr that handled the referrals for my little guy, but he just wants to send him to the Mental Health Dept.
    says that Neuro doesnt handle behavioural issues, and since they never properly assessed him for other things he just had a diagnosis of behavioural, and Dev Del. I have no idea about a NueroPhyciatrist. I was told a Developmental Pediatrician would be my best bet. But I dont thing they are going to be any more help. He needs a very thuro medical exam, not a therapist. He is delayed in every aspect of his life. They phyciatrist that I took him to last year told me that I needed to get used to the idea that he may never be a productive member of sociaty and will most likely need to live with me and be cared for his whole life......But still could not tell me what was going on with him. Told me to take him back to neuro and try to get them to do an EEG...They didnt find cause for one so I was back at square one.
  7. keista

    keista New Member


    My advice may sound off the wall, but it's advice that's been given in my real life group when moms are getting the diagnosis run around. Apply for SSI/disability. Let their doctors do all the evaluations and find the right dxes. This way you'll get the most comprehensive evaluation available at no cost to you. Then hopefully you'll be pointed in the right direction to get the assistance you need. And I would base the entire request based on that psychiatrist's statement.

    I also agree you should request complete evaluations through the school. Technically speaking, my son got his diagnosis through the school. A Dr had to sign off on it, but the school did the evaluation.
  8. buddy

    buddy New Member

    We are suggesting a neuropsychologist....not a neuropsychiatrist..... A neuropsychologist is a PhD (not a medical dr.) psychologist who has much specialized education in neurology. They look at how behavior and the brain is connected.

    I hope that helps....

    OBVIOUSLY neurologists deal with behavior because anything that affects the brain can affect behavior. My son's primary doctor is a neurologist, and they should be looking closely at the sibling similarities (you know this but I am so frustrated for you! )

    I too found some neurologists who were specialized in seizures and wanted nothing to do with Q (our neuro took a few years off to care for her own son with autism)...so so glad she is back!

    Wishing you the best...we have a seizure issue too....not fun!
  9. Stephmanietta

    Stephmanietta New Member

    He was evaluated by the school last year and after 3 months of testing I came in for the IEP hopeful that he might finally be placed in a classroom were he doesnt feel like the only kid that cant do it, only to be told that they had come to the conclusion that all of his acedemic troubles stemmed from his poor attendance. I was told that IF his attendance implroved that we could do another assesment after 6 months. I explained to them that it was a whole picture kind of thing, His behavioural problems, insomnia, medications that make him sleepy, and feeling picked on and belittled in the classroom by the teacher and other students, makes it difficult for him to have good attendance.
    They didnt seem to care though. He soon after stopped attending all together. I have tried Homeschool off and on since Kindergarden. I cannot get him interested anymore than the teachers can, but at least he is not being made fun of all day everyday!
  10. TeDo

    TeDo Guest

    All the more reason to have your own evaluations done. You can have the neuropsychologist, neurologist, Occupational Therapist (OT), and Speech Language Pathologist (SLP) evaluations done yourself. OR you can request an IEE (Indepepndent Education Evaluation) at the school's expense. That request needs to be made in writing also.

    When you had the IEP meeting, did they give you any testing results? Did they give you anything in writing denying him services and why? Do you have all the professional reports easily accessible that say he has definite developmental delays?

    Sounds like you might need an advocate. You can call your state's Department of Education and ask for names and numbers to find one. Sorry you are going through all this. As for the school, I have had a similar fight and ended up pulling my kids from public school.

    I still think you really need to find a developmental pediatrician or a neuropsychologist to get to the bottom of the issues (IF it turns out not to be seizures) so you can get the right medications (if there are any needed). You're doing an awesome job. Keep down this road and you might want to keep a journal of the before, during, and after of his behaviors. Patterns will usually emerge that you didn't realize were there.

    More supportive {{{{HUGS}}}} to you.
  11. DDD

    DDD Well-Known Member

    Welcome. My post will be brief as I'm "off my feed" lately. Since you are in NW Florida that means you are within reach of the State of Florida Dept. of Education. I did not have as many complex issues with my difficult child as you have experienced but one of the most helpful people was a random woman in the Special Education Needs section of the State office. I called the phone number. I asked for the most knowledgeable and experienced person...and I lucked out. The lady listened closely, asked questions, gave me specific guidance and encouraged me to call her back if I did not get results following her advice. She also stressed that I record every phone call I made, the date/time and the full name and title of the individual I reached. Try it and I'll keep my fingers crossed for you. Hugs DDD
  12. bigbear11

    bigbear11 Guest

    Hi... Welcome to the board. You are definately not alone and so many here can relate to having a child who rages and how hard that can be on the child and the family. I sent you a PM with some thoughts based on your geography, but just wanted to say welcome...