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Discussion in 'General Parenting' started by Lost_in_BC, Jan 6, 2009.

  1. Lost_in_BC

    Lost_in_BC New Member

    Hello everyone.

    Hoping I will be able to find some info and support here.

    I have a 10yr old son who was diagnosed with ODD and learning disorders not otherwise specified. He is currently taking Strattera 40mg in the AM and Seroquel 25mg in the evenings. The Seroquel is being bumped up to 50mg XL tomorrow to prevent peaks and low periods.

    His schooling is suffering greatly. Our home life is a mess. We have to other children, boy 8, and girl 3. He is constantly aggresive towards them and ppl at school. When he was first diagnosed our support systems were awesome. Now that time has gone on supports are less and less consistent. We are from a small town in Northern BC and I don't know anyone else who is going through this.

    Candace
     
  2. Steely

    Steely Active Member

    Welcome........

    You will find a plethora of support and advice here. We all have walked in your shoes, regardless of us being from all four corners of the earth.

    I think it is probably wise that the Seroquel is being increased. You might see a tremendous benefit from that.

    Has he had a NeuroPysch exam? Who is currently administering his medications?

    You might pick up a copy of The Explosive Child by Ross Greene. One of the best books on kids like ours out there.

    Again, welcome.
     
  3. Nancy423

    Nancy423 do I have to be the mom?

    Hi and Welcome!
     
  4. Lost_in_BC

    Lost_in_BC New Member

    I'm not sure if I like the Seroquel being increased actually. He was on 50mg normal seroquel around the begining of the school year and he was very tired in school and even more irratable. With the lower dose he hasn't been as irratable or tired. On the other hand is a violent boy and we need to change this.

    I'm not sure if he has had a NeuroPysch exam. I'm not familiar with the term anyways. Last summer we spent 2 weeks in Vancouver as he was admitted to BC Childrens Hospital for an evaluation in the child psychiatric unit. That was one of the hardest things I have had to do.

    The Dr from Vancouver has been consulting our team up here. That team consists of us(husband and I),Our family Dr, Our Child and youth mental health worker, My sons principle and teacher, and a worker who has been giving my husband and I some parenting strategies. He makes the final call in medications and our family Dr writes up the prescription.

    I have a copy of the book. We are trying to stick to the strategies we are being taught through our worker. Lately though it seems like all our lovely supports are crumbling to the ground. There is major lack of commitment and communication.
     
  5. Marguerite

    Marguerite Active Member

    How long has he been on the Strattera? We found it was a problem with difficult child 3, but we saw the problems quickly, it was as if the Strattera reduced his ability to cope emotionally.

    Mind you, not everyone has problems. it's just my caution.

    There can be so many reasons a child can have this sort of problem. Read the book, It should help. It's not full of charts, graphs, stickers, etc. We found it made our job easier, at a time when I felt too overwhelmed to face yet another "brilliant scheme". But it was good, I felt relieved the more I read.

    If you have someone wanting you to try a differnet approach then at least read the book through, think about it and discuss it with the worker. Maybewith the worker's support and monitoring, you could try something, especially if nothing else seems to be working.

    We're here. Vent away when you need to.

    Marg
     
  6. Lost_in_BC

    Lost_in_BC New Member

    He has been on Strattera since we were in Vancouver. Before that they were giving him Ritilan. Ritalin was like a fuel for his behaviors.

    When in Vancouver they removed him of ALL medications. Once they did the tests and evaluation on him they introduced the Strattera and we have seen improvement. During spring break last year they tried him on concerta and we found that was a week from hell. Strattera has been the only thing we have tried that gives him focus and helps with his outbursts as well as the displays of aggression.

    Today when we go to the Dr. I am going to ask for an anti depressant for myself. My husband works alot and the stresses are just building up. I find myself feuling him unintentionally of course but still not good. I have been very blah and snappy lately. I love my son dearly but it is so hard to live with him. Our good days are far and few between and our bad are horrible.

    Thank you for this forum. So glad to not feel alone.
     
  7. robinm1922

    robinm1922 One day at a time

    Hi,
    I am still fairly new to the board and so very happy I found it! Until I came here I felt so alone and was tired, angry, lost, guilty all those things and more! I was so glad to find that not only was I not alone but there were people that could offer advice that have been here. All my friends are saying just put your foot down be strict be this be that but they don't live it. The members here have lived it and know where we are coming from.

    I know you will get all the love and support here that you need to get you through this. I went to a support group last month and the first thing they asked me about was counseling. I told them my difficult child was not into the thought right now and she looked at me and said I was talking about you!

    We live what our kids go through without the ability to really "fix" things. There are no boo boo's to kiss or band aides to apply just our love and support. As hard as that is at times!!!

    I am glad to hear your difficult child does well on Strattera because my difficult child maybe put on it the end of this month. She needs a non stimulant ADD medication and one that doesn't have a negative impact on Celexa.

    Best of luck remember one day at a time and bubble baths and most important take care of yourself!
     
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm not real familiar with the Canadian health care system, but can you see a neuropsychologist? Do you think that your child has been diagnosed correctly? Do you think it could be something else?
     
  9. Lost_in_BC

    Lost_in_BC New Member

    The only evaluation he has had done was at BC Childrens hospital. It is called a Multidisciplinary Integrated Assessment Report. I will quote afew of the things mentioned below.


    Quote
    Braxton is a sociable boy has a complex developmental profile that suggests severe neurobehavioral deficets related to probable central nervous system dysfunction according to criteria delined by Chudley et al. (2005). He thus meets the criteria for a complex developmental behavior condition, and can be expected to need considerable supports in all contexts for the forseeable future.

    There is evidence of severe dysfunction across a number of neurbehavioral domains inculding,

    Cognition: Although his cognitive abilities are generally in the low average range, He showed a significant and unusual subtest discrepency that is found in less than %2 of the population. He also a statistically significant difference between the 2 subtests of the Working Memory Index of the WISC-IV, although this degree of discrepency is less rare.

    Communication: Braxtons core language abilities were in the average to high range, but his receptive language abilities were more than a standard deviation lower than his expressive language abilities, suggesting that he probably says more than he knows. His phonological memory was below average, more than two standard deviations below his core language score. He thus showed significant between-domain discrepencies in his language function. Braxton experiences more difficulty with more abstract language for both comprehension and expression. His ability to formulate a cohersive story was significantly lower than his expressive core language skills on the CELF-4.

    Academic Achievement: Braxton has global delays in his academic skills, with his written Language and Total Composite Scores falling more than 2 standard deviations below what would be predicted by his Vocal Comprehension Index Score on the WISC-IV and more than 2 standard deviations below the mean for his age. There was also significant difference in between hismath reasoning skills and his numerical operations.

    Memory: Braxtons memory abilities are generally in the average range, but his auditory rote memory is sigificantly weaker (in keeping with his phonological memory).

    Executive function: On tests of executive function, Braxton had difficulty both maintaining and shifting cognitive set. He also has difficulties with verbal abstraction that was evident in both cognitive and language testing.

    Attention Deficet/ Hyperactivity: Braxton has longstanding difficulties with attention, concentration and impulse control, in keeping with his diagnosis of ADHD.

    Discharge Diagnosis: These include ADHA combined type, Oppositional Defiant Disorder, Learning Disorder not otherwise specified.


    I have no reason to think the diagnosis was incorect. I have no experience with this other than my day to day life with him. There is depression and anxiety on both sides of the family and that has been noted. No other history of mental illness in the family.
     
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Wow. I'd REALLY be wondering about Autism Spectrum Disorders (ASD) after that assessment. I wasn't thinking about mental illness. Autism Spectrum Disorders (ASD) is neurological...sort of ADHD plus plus plus.Most Autism Spectrum Disorders (ASD) kids are first dxd. with ADHD. You may want to do this online Pervasive Developmental Disorder (PDD) assessment test to see where your son falls. I hear it's pretty accurate if you are honest in your responses. Here goes:

    http://www.childbrain.com/pddassess.html
     
  11. Lost_in_BC

    Lost_in_BC New Member

    Why do you think that? I have a visit with my family doctor in 2.5 hours. Like I said I am not familiar with alot of this. Any help is appreciated.
     
  12. Lost_in_BC

    Lost_in_BC New Member

    I just did the questionaire and it says.

    The score may suggest severe Pervasive Developmental Disorder (PDD). Total score 167

    Now my question would be. What is Pervasive Developmental Disorder (PDD)?
     
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son is on the spectrum and his report sounds a lot like my son's did. We were told things like "Oh, no, he's too friendly" "his eye cotact is too good" yada, yada, yada. But he finally got the diagnosis. (it usually takes time) and he really took off after the diagnosis. He got the right type of interventions in school that really helped him and frankly the medications didn't help him that much, although a lot of Autism Spectrum Disorders (ASD) kids are on medications.
    Try the assessment scale and see. If it's positive bring it to your doctor, however most regular pediatricians don't know a whole lot about Autism Spectrum Disorders (ASD). Good luck :)
    For the record, my son's first diagnosis. were: ADHD/ODD/cognitive disorderNOS/language disorder (This was when he was 3 or 4). He outgrew the language deficit, but still had trouble holding give-and-take conversations. Can your son hold a give-and-take conversation beyond "yes" and "no?" Does he understand social skills and social norms? Has he ever played inappropriately with toys--taken them apart or lined them up or just throw them rather than use them the way they are supposed to be used? Can he make good eye contact with strangers? Does he have any strange behaviors such as making mouth sounds, smacking his lips, high pitch vocalizations, arm flapping, spinning, repeititious flipping on and off lights? Does he seem "out of it" at times, especially not at home, but more "with it" at home and you think "I swear there's NOTHING wrong" and then you go out again and you think, "Ok, he was so normal just five minutes ago..." Can he transition from one activity to another without raging? Does he have any obsessive interests that he likes to talk about and that nobody else cares about, but he talks about them to death anyways? Is he very high anxiety in new situations? Sensitive to loud noise, lights, crowds? These are just some symptoms of Autism Spectrum Disorders (ASD). A great rote memory is another symtpom. No Autism Spectrum Disorders (ASD) child has ALL the symptoms.
     
  14. Marguerite

    Marguerite Active Member

    If you printed out the results, it would be worth taking the printout to the doctor. Pervasive Developmental Disorder (PDD) is Pervasive developmental disorder and is an umbrella which includes autism and Asperger's. This is not necessarily bad news - those with Pervasive Developmental Disorder (PDD) think and learn a different way, that's all. But this often means they need to be handled a different way and taught a different way. They may have problems but they also have gifts. even if your Pervasive Developmental Disorder (PDD) child is not the sharpest tool in the shed (and a lot of them are), you have a person who is likely to be intensely loyal, loving, basically more honest than most (other than "I didn't do it" kind of lies) and generally law-abiding. Often they have areas of capability beyond other people's, although it can be in something seemingly useless, like lining up toy cares in a row. Mind you, especially if you have one obsessed with numbers and letters (hyperlexia) you have a potentially brilliant librarian!

    ON the cognition front, Pervasive Developmental Disorder (PDD) kids are very difficult to assess. difficult child 3 "failed" his first psychometric assessment. So did difficult child 1. I was told, with both of them, that they are "retarded" (a term no longer used). At a later stage (not a lot later, with difficult child 1) further assessment showed IQ so high in some areas that it couldn't be assessed. Both have since scored between 120 & 145. The trouble with IQ testing is, it was never designed to accurately pinpoint the capability of someone way outside the norm. The further your child is from the original test group, the more ulikely the test is to have given useful or meaningful results.

    So don't sweat the low numbers, but use them to your child's advantage. Don't look at the fial number if the subscores show wide discrepancies.

    Looking at Braxton's language area, for example, they said his receptive language was a school district lower than his expressive. This sounds like pure nonsense - how on earth can a child SAY more than he KNOWS? I'm not saying they scored him wrong, but for Braxton to have got a score like that should have set up a big red flag for a more detailed Speech pathology assessment, with aview to identifying the problem.

    Language isn't just about speech (or shouldn't be), it's about what words the child understands. It's about communication. A child we knew well, former neighbour, was not quite three years old and bilingual, Spanish-English. The child was in a drowning accident and brain-injured, he lost his English. He also lost his ability to speak and as far as we know, has never regained it. But if you said to him in Spanish, "Touch your nose", then the only thing stopping him was physical inability. If you said to him in Spanish, "Your father looks silly when he crosses his eyes and pokes out his tongue," the boy would laugh while looking at his father. Good receptive language, good sense of humour, interacting well. But difficult child 3, at the same age, was very different. You could say to him, "Your father looks silly when he crosses his eyes and pokes out his tongue and difficult child 3 might look at him calmly and say, "Yes." But not laugh, because he didn't 'get' the humour of the situation.

    difficult child 3 had good expressive language but poor receptive language, if you counted the movie scripts he could recite from memory. But did he have understanding?

    Technically, the testing should distinguish between the echolalia (repeating strings of sounds which may or may not happen to be words heard either recently or some time earlier) and language with comprehension. But often it doesn't. Because often, the tsts applied are not designed to assess kids with problems. They're designed to scale "normal" kids.

    Go back in your own memory, to the time Braxton was tested. What can you remember about the way he spoke? I do wonder how much he was simply repeating what he heard, perhaps singing along to the radio (and again, without the radio, like your own portable tape recorder). "Light's on but nobody's home" kind of thing (it's OK, they do get better - this is the way a Pervasive Developmental Disorder (PDD) kid practices concepts like speech and language).

    Now, I haven't gone to much trouble with looking at the rest of the test because, frankly, applying a psychometric test like this to a kid whose receptive language scores are so low, is pointless. The kid will score badly across the board, BECAUSE HE DIDN'T UNDERSTAND THE QUESTIONS well enough.

    I saw this happen, with both my boys. I was present for the assessment on difficult child 3, but difficult child 1 was tested without my knowledge or permission. He was extremely anxious, knew somehow he was in trouble and felt like a criminal, because his teacher was mishandling the situation. The school counsellor had been called in but wouldn't speak to me until our appointment (made for me by the school). It was only at that appointment that I was given the news that he had failed his IQ test (because he was too anxious to complete it, it turned out). I got sandbagged thoroughly, which I strongly believe was the aim of the school counsellor and the teacher. I later got on better with them, but at the time they felt they needed to teach me a lesson. Long story, not appropriate here. But watch for that phenomoneon; teachers, school counsellors, psychologists are human too. Often the first case they try to make with achild like this, is that you are neglecting your child. How could you have fialed to notice that there is a problem? What they don't often accept, is that WE have been trying to tell people there is a problem, but we keep getting told to stop fussing. If we keep fussing, then we're over-anxious pressure-cooking parents. If we do what we're told and back off, we're neglectful and complacent. And the child risks getting lost in the blame game.

    OK, I was curious, I did go back and have a longer look at the other tests. They describe his cognition subtests as being unsual in pattern - again, worthy of further examination. "Something curious here" in a child who is clearly under-performing; so go find out! (I address this to the tester). But the testing as a whole - a classic example of precise, but inaccurate. They measured him in great detail, but what they measured is meaningless, considering he probably wasn't fully understanding what they said to him. "Draw a line here" with a poor result, COULD mean he doesn't know how to draw a line, or it could mean he hasn't got the physical skill to draw a line, or it could mean he didn't understand the instruction. Or he could have a hearing problem (do make sure it's been checked) which is a common cause of language delay. A kid shouldn't be classified as "slow" if he didn't hear the instruction in the first place!

    The first adjective of the report is where you've been snookered - they describe him as "sociable". This stops people considering Pervasive Developmental Disorder (PDD), because too many people view autism as the kid being socially withdrawn, not making eye contact, sitting in a corner banging his head on the wall.

    That is te old, classic view and again, it is a narrow concept no longer widely applicable.
    difficult child 1 was withdrawn, to be sure. But he had friends at school that he played with, he made eye contact with us his family, he was fine until you made him the centre of attention (such as sining Happy Birthday to him). Then he would curl up in a ball on te floor and not come out until all chance of being looked at was gone. It could take hours.

    difficult child 3 - none of that. Never shy, socially outgoing, but would have gone home with a total stranger. He didn't distinguish between family, and strangers. He loved everybody. He still does - he knows who we are now (it took until he was about 3 or 4) but will talk about intimate detailed stuff with a person he's just walked up to and introduced himself to.
    I told difficult child 3 to not talk to strangers. Some new people were staying in a house up the street and we really were worried about them - loud parties, bottles msashed inthe street, vandalism, swearing at people as they walked past - they were not nice people. I knew better than to tell difficult child 3 that they were not nice people because he would have told them what I said and it would have caused more trouble, so I just said, "They are strangers; stay away." But as he rode his bike past, he introduced himself. They exchanged names. Therefore they are now no longer strangers (mods - we need an icon for smacking your forehead in exasperation).

    What I'm trying to say here - a kid can be socially outgoing, but still inappropriate with it. Autism is about being inappropriate, rather than merely withdrawn. Being withdrawn is ONE way of being socially inept. Talking incessantly to every person you meet, is another way.

    I do think it would be good to get another assessment done. If you can, get copies of the subscores of the original tests. If tey won't let you have them, then make an appointment with another neuropsychologist and get copies of the original subscores faxed to the new person. It really helps to have the older data, to see the pattern.

    YOu can use the pattern of the subscores to pinpoint areas to work on. For example, the poor receptive language - you can actively work to biuld his receptive vocabulary. I found the way for difficult child 3 was to put it in writing. That's what really worked - for him. Every kid is different. But chances are, what will work is a multi-pronged approach, where he experiences the word, he hears the word, he sees the word and sees it in context so he gets a 'feel' for its meaning, all at once. it requires formal teaching of this, you have to do it (it's cheaper) but if he is brighter than they tested him as (and I think it's highly likely) then he will learn new words FAST.

    Meanwhile, let him watch movies on DVD with subtitles on. Make sure they're only in English - one language to begin with is probably all he can handle. Let him control the action - when they continually rewind/replay the same bit over and over, you should let them. It's rehearsal. In his own mind, it makes sense. If you try to control it, you will trigger a rage.

    Read "Explosive Child". It will help you cope now. Because of the language issues it could take a little longer and a lot more patience, but there are other factors in his own make-up that will step in to compensate.

    There is hope. There is help. And there can be really good news. If only you could meet my boys, and see where they've come from, you would rejoice.

    Marg
     
  15. TerryJ2

    TerryJ2 Well-Known Member

    Wow! Does he sound like my son!
    I just finished typing another note where I said my son fakes it a lot.
    He could talk his way out of a paper bag.
    I would be leery of the Seroquel. in my humble opinion. I don't know anything about Strattera.
    I'd suggest a copy of Asperger Syndrome, Difficult Moments. I bought it before my son was diagnosis'd and it has great ideas for all kids.
    I really had some "Aha!" moments about rages and triggers.
    [ame="http://www.amazon.com/Asperger-Syndrome-Difficult-Moments-Practical/dp/1931282706/ref=sr_1_1?ie=UTF8&s=books&qid=1231378724&sr=1-1"]Amazon.com: Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdowns: Brenda Smith Myles; Jack Southwick: Books[/ame]

    Best of luck.
     
  16. Lost_in_BC

    Lost_in_BC New Member

    I did print out the questionaire to take to the Dr with me. My family Dr told me that it had been considered. She also told me to stop worrying over WHAT it was. She said that we are trying to get Braxton to succeed in life no matter what. We work on and treat what is presented to us. The school has made leaps and bounds to help him, Not because of his diagnosis but because they want to see him be successful. She told me the actual diagnosis(which she thinks is correct) is not as important as the love and support that he is being given.

    I am comfortable with what she told me and I trust her. It feels like the very beginging when I first started feeling that something was not right. I want to get passed all the insecurities and the unknowns and work on the knowns.

    I did relay my concerns to her that our team seems to really be lacking in the communication department and she is going to help me get us all working together again. She is also going to look into respite for us affew times a week. My other children need this badly. I also have an appointment next week for me. The stress has really been getting to me lately and I have been too short. I realize this and have asked her for some help.

    I guess thats all for now. Just thought I would give the dr update.
     
  17. TerryJ2

    TerryJ2 Well-Known Member

    Respite is great!
     
  18. Lost_in_BC

    Lost_in_BC New Member

    We have had respite in the past. I was very nervous about sending him but once I got over that and saw how much better things were around here I grew to love it too. He really enjoys going. We have a group home here called pathways. It is for children with Mental illness's. They do lots of outings and fun things. Braxton now knows that it is a break for him too, not just for us.
     
  19. Marguerite

    Marguerite Active Member

    It's always good to double-check the diagnosis and to accasionally revisit te topic. If, after all your questions and digging the doctor still says, "I stand by the diagnosis," then that is good, it was still worth the effort. It's a lot better than wondering somewhere deep down.

    I understand your reservations over respite, I'm glad you could overcome them. I couldn't. But then, we are in a different situation. I'm glad you and Braxton have had positive experiences of it all.

    Marg
     
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