What do i do?

Discussion in 'General Parenting' started by italiansass, Jul 9, 2007.

  1. italiansass

    italiansass New Member

    I have a 5 yr old who was diagnosed last year with ADHD. He also has CP. This past year he has been on several, about 5, medications. And he is currently on Clonidine. He takes 3 pills a day, .1mg. Today, he seen a new doctor, who basically, I felt attacked me. He went on and on about the amt of medications he has been on. And that that shouldnt have been the case, when it wasnt me prescribing the medications, it was his doctor. And his blood pressure was high today, and he suggested taking him off of the clonidine altogether. But he didnt give me any options I felt for otherwise dealing with my son. Other than saying that he was one of the most active childs hes seen in his career. I don't know what to do. I don't know what to feel. Spanking him doesnt work, time outs don't work, talking him down doesnt work. What am i to do? I feel exhausted, alone, and bewildered. Any ideas would be helpful and appreciated.
  2. SRL

    SRL Active Member

    Welcome, I'm glad that you found us.

    What is the nature of the other medications? Are they for regulating CP symptoms or other physical conditions?

    Doctors frequently don't agree and it is hard for parents to determine which course of action to take. We always urge parents to get as thorough of an evaluation as they can if their child seems to need medications to control behaviors because sometimes there are other issues at work that need different interventions. What kind of doctors diagnosed the ADHD?

    The other thing we recommend for parents is to get a copy of Ross Greene's book "The Explosive Child". There's a thread about it at the top of this board which should help you adapt it to younger children.
  3. italiansass

    italiansass New Member

    Joey has been on Risperadol, Focalin, Adderall, Daytrana, Tenex and Metadate in the past. The stimulants seem to have the opposite affect on him and seem to wire him other than calm him. The Clonidine has been the only medication that has had any effect on him long term. But now it seems as if his blood pressure is high. Today it was 130/78 I believe, but he was also fighting the machine so they aren't sure if that was an accurate reading. His primary doctor, his pediatrican, diagnosed the ADHD. After that he started to see a clinican at a Behavioral Clinic and she was the one that prescribed the medications. I'm just unsure of any other tactics to use with him. And to take him off the clonidine, which is what the doctor that I saw today, wants to do, Im completely sure I wouldn't be able to handle it. Joey hits back, talk backs, has explosive meltdowns. And like I said before I dont know what to do. I know they say to stay calm but its hard to do when your child is hitting you and talking back to you, or worse, trying to hurt themselves. And I don't have a park around nearby, and he can't go outside in the daytime until the evening, because he burns really easily. So his only other option is to stay in the house, and play and watch t.v. I just don't know what to do. And the doctor today, the only he accomplished was to make me feel worse and more depressed. To sit there and tellme that my child was one of the "worst", meaning hyper etc, he has seen, and that hes not sure he can help him, and that it will always be a struggle. I don't know. I just don't anymore.
  4. SRL

    SRL Active Member

    The day a specialist told me that my child was the worst they'd ever seen, would always be a struggle, and were not sure they could help me is the last time I'd be walking through that door. NEVER EVER give up hope on your child. Parents here have been through everything you have with your child...and some of them more.

    If your son has been brought up in a loving, stable home then it's probable that something more than ADHD is going on here and you need to find the right people to read the clues right. The two specialists that we are hearing parents report most accurate diagnoses out of are called developmental and behavioral pediatricians or pediatric neuropyschologists. There are always exceptions of course but in general these two specialty areas usually hit a lot closer to the mark. If I were in your shoes I would be making an ASAP appointment with your pediatrian to 1) redo the BiPolar (BP) reading because changing the only medication that has seemed to help is not resting well with you and 2) to see if you can get a referral to one of those two specialists. A thorough, accurate diagnosis is absolutely critical because there may be non-medication interventions that you are missing. The most hyperactive child I've ever known was helped tremendously by being allowed to keep a gel ball at his desk to channel his need for perpetual "motion". Also, some children are in constant motion because their sensory systems are off kilter so they are seeking out specific motions to help balance themselves.

    Please do pick up a copy of a book and see if you can't start making some headway in the way you handle him.
  5. italiansass

    italiansass New Member

    No its not as if I am giving up on my child. I'm just at a loss as to what to do, and it feels like he was calling me a bad mother. I mean because yes my son does watch tv a lot, but I have nothing else to do. I read to him and play with him, but he can't go outside in the daytime, so it just seemed like he was attacking me. I mean I don't do anything different with my child then hundreds of others do with theres. And Joey is brought up in a stable home now, but hes not biologically my child. We took custody of him when he was a year old from my fiances sister. And we have no idea what happened in that first year other than he was abandoned and neglected, and probably abused. And no I don't think I am going to go back to see that doctor, I personally don't think I could stand to see him on a regular basis. But my pediatrician is leaving her practice, and I live in a small town with the closest city being an hour away. And every place I call for him to see someone its live three, four months waiting period for him to be seen. And he only has 1 more refill on his prescription of the clonidine. And I am taking him to his pediatrician to be checked for his BiPolar (BP). But last night I ordered the book that you were speaking about, and I am looking online for a doctor that you suggested. I really and sincerely appreciate your feedback. Because I just felt utterly alone. I am with my child 247, no one in my family or circle of friends will even keep Joey bc he is so hyper, and all over the place. And its not like he is mean, he is a very happy child. He just is so hyper, and he can't bring himself down, and I think a lot of his meltdowns I could maybe control. But I have given in to him so often bc he gets so explosive I just can't take it nemore. But I'm hoping the book will give me some pointers. Thank you.
  6. SRL

    SRL Active Member

    Unless you live in a city, it's pretty common for parents to have to travel up to a few hours away for the kind of evaluation I think you need. (We took my son to a speech clinic 3 hours away that specialized in his condition for assessment but he had speech therapy here based on their recommendations). Children's Hospitals and university hospitals would be places to start looking. 3-4 months is a typical waiting list for this type of appointment. It usually takes that long to get all the paperwork filled out and to get records from other specialists in. There is a parent report at this link that you could start filling out that will give you a head start.


    At minimun, the evaluation you want to request should be with a developmental pediatrician or pediatric neuropsychologist plus occupational therapy, plus speech/language and if there's any sign of speech/language differences at all audiology should be included.

    What's the child's biological parents' family history like in terms of mental health, substance abuse, etc?

    Most of us wind up feeling attacked when we go to appointments like this. In fact I went head to head with a speech language pathologist during our first appointment but we later wound up on the same page. Expect some degree of disagreement.

    Is medication the reason that he burns so easily related to the medication he's on?

    I think if you have a superactive child it's very important that you find a physical outlet for him. Indoor pools, gyms, classes or camps, etc. might be places to look. We wound up building a mini gym in our basement that has a spinning swing, mini tramp, big vinyl covered foam blocks, a rocker, and a thick air filled mattress. Additionally in my difficult child's bedroom we had an old set of mattresses he could jump on anytime. This has helped a great deal.

    How has he done in group settings such as preschool/daycare/kindergarten?

    Hang in there, we'll do what we can to help get you pointed in a direction of getting the right kind of help. I remember--and so do the other moms here--what a difficult and lonely job this is. No one in your family or circle understands or has been in your shoes. But there's nothing your kid has done or said that would shock us here!
  7. italiansass

    italiansass New Member

    I believe what I am going to do is keep him on the medication that he is on and see if his pediatrician will refill it until November. I found a really good doctor, who done his residency at Johns Hopkins and whose special intrests are ADHD and devlopmental delays. But his next appointment isn't until November. Joey does see a speech therapist and an occupational and physical therapist. This is the first time I have ever felt attacked by a doctor.
    No, he burns easily because he is very fair skin. And its not like I keep him in the house all the time. We were finally able to fence in our backyard so in the evenings he gets to go outside and do whatever. He has a tree house and a pool that he absolutely loves. Its just during the midday that I don't want him out for long.
    In preschool, it was difficult, mainly I think because although he was in a class for special kids, his teacher tried to treat him like a regular child. And she really didnt tolerate a lot from him, and was always calling me to come and get him from the class. And even at one point told me that if he wasn't medicated that he couldn't come to school. He does good with other kids I believe. I mean he does like other kids, he'll snatch from them, and sometimes if they hit him he'll get out of control. But I believe because he doesn't feel pain normally that he doesn't know what he does to others hurts.
    I am anxiously awaiting the book. I am so ready to try anything that will work for him. If I could only control his outbursts and his temper tantrums, that would be good for me.
    I am asuming difficult child means your child? I'm new to this not too sure of the terminology that some of yall use.
    But thanx again for your time.
  8. SRL

    SRL Active Member

    difficult child is a shortcut for Gift From God. It's what we call our difficult kids. It helps reminds us of the good...plus helps people from using words that might really be on their minds. ;-)

    The more accurate data that you can get on him, the more able you will be to educate yourself on how to go about helping him progress. Has the school district done a reevaluation in preparation for kindergarten that included achievement and ability testing?

    Any time a child comes through here with behavioral problems plus speech and Occupational Therapist (OT) issues we encourage parents to research Autistic Spectrum Disorders. The high funtioning ASDs are extremely difficult to pick up in younger children, even more so if they are atypical in ways such as more social than you might expect. The automatic response of most parents (and often doctors) is "No way" for those kiddos. Does he do any lining up of toys or arranging them in patterns? How about unusual or obsessive interests?


    We gained HUGE ground with the book with my kiddo--enough that I cancelled the appointment to arrange a medication trial for behavioral problems.
  9. italiansass

    italiansass New Member

    As far as data if you are talking about his birth mother and family. Thats a little difficult. Although his uncle is my fiance. His birth mother doesnt know who the father is, so the paternal side I'll never know about. And his maternal grandmother was adopted so there is only so much I know about that side of the family as well. He does have regular testing at school though.

    And I have questioned him being autistic. But he doesnt present any signs of it. He doesn't line up toys, or have any unusual behaviors. Other than his fearlessness, which that I have realized is apart of his ADHD.