So many challenges for a little boy and family

Discussion in 'General Parenting' started by tkjfamily, Sep 8, 2008.

  1. tkjfamily

    tkjfamily New Member

    I'm SO EXCITED to find this site. I have felt very alone in the world. None of my friends have children with these issues!!

    We have had so many ups and downs with our son over the past several years. We have had many different opinions and several approaches. All of the excitement (slight sarcasm) began in his kindergarten year yet he is now in 7th grade. It seems to have gotten worse each year. Over the past year or two, things have gotten much worse with school. Surprisingly, sports (which historically have been REALLY bad) have gotten somewhat better.

    Last year, in addition to blurting out and arguing he slept approximately 4-5 hours in class each day. At the time his excessive sleeping was one of the teachers' biggest complaints. This year, however, I think they wish he was sleeping again.:redface:

    He has been seeing a psychiatrist and psychologist for approximately 4 years and has been on a multiplicity of medications trying to find the right combination. Earlier this year, we took him to a neuropsychologist at a very good children's hospital. Additionally, we had a sleep study performed because of his excessive sleeping in class. Based on the neuropsychologist exam, we took him to another specialist. This week, we took him to a psychiatrist who specializes in Tourette's and Obsessive Compulsive Disorder (OCD). We now have diagnosis that I have faith is taking us the right direction.

    We have had several suggestions over the years... ADHD, Obsessive Compulsive Disorder (OCD), Tourette's, ODD, bipolar, Anxiety Disorder, etc. Based upon the latest evaluation, he has been diagnosed with Tourette's, significant ADHD, ODD and possible anxiety disorder. To us, this seems to be the most accurate thus far.

    The doctor told us that we definitely have an uphill trip as we learn to help him. Unfortunately, she indicated that he has significant ADHD traits which have often been confused with various other possible situations. Additionally, the ODD is becoming stronger and stronger, which we now need to learn how to modify. She has ruled out the Obsessive Compulsive Disorder (OCD), and told us that his behavior was actually ADHD traits.

    Next steps, she is changing his medications, in conjunction with the local
    doctors. Additionally, she has given us two books (well, actually we paid for them) to help us understand and hopefully shape his ODD. She has recommended an additional medicine that will help with the ADHD and improve his Tourette's symptoms. With the removal of another medicine she is hoping his tremors will improve. He has been on depakote, zoloft, concerta, abilify and melatonin. She is removing depakote. Additionally she is recommending to his local psychiatrist that he remove the zoloft, increase the abilify and concerta and add tenex. We have an appointment with his psychiatrist later this month.

    She also is referring us to a neurologist to evaluate if there are neurological issues contributing to the various behaviors.

    We are working very closely with the school. This is challenging each and every day. I do think the teachers are trying but the reality is that most of them do not have the training or understanding to successfully help him. School has been in session 4 weeks. Already, 8 days he has been removed from at least one class. I've gotten lots of emails and phone calls.

    Academically he has always done very well. His standardized testing is always in the upper 95%. BUT, the last two years have seen a significant decrease in his grades. Unfortunately, this pattern seems to be continuing this year already.

    And, of course, he has the added pressure of three older siblings who have done very good academically. We try VERY hard not to add any pressure like this to him but I know it is there.

    The one thing that we have learned over the last several years is to never pass judgement on someone that you see in the community without knowing the WHOLE story. If I had seen my son 10 years ago, not knowing the family I would have thought -- boy, that kid needs discipline, his parents must not make him behave, he is spoiled rotten, they must spare the rod, why don't they get control over him and so on and so on. We face these stares and whispers every day it seems from the ball field to the school to church. We are constantly defending while at the same time understanding where they are coming from....begging people to
    please give him a chance and try to understand. We have several times discussed that it might have been easier if he had a visible handicap rather than appearing to be 'normal' (what is normal in today's world?) yet having several special needs that we must learn to address.
  2. susiestar

    susiestar Roll With It

    WElcome. I am sorry your son is battling all of that. It certainly makes the road rough for all of you.

    It is good you pushed and got thorough evaluations. With the tourette's syndrome I STRONGLY encourage you to have a pediatric neurologist oversee ALL medications. At least get his opinion. That is a neurological disorder, NOT a psychiatric one. It has substantial psychiatric implications, but at the root is a neurological disorder and should be handled by a neurologist.

    I ahve a child with epilepsy. Everyone thought she was developing inattentive ADHD. Thanks to a mom here I insisted on seeing a neuro and having a sleep deprived EEG done before we did ANY medications for ADHD. It was a smart call, because seh has absence epilepsy - she "blanks out" rather than having the stereotypical seizures. If we had a psychiatrist handle this it would not be under control and she would have been on medications that make the seizures worse.

    with tourettes it is similar. husband has a coworker who takes her sons to the same pediatrician neuro we see - and he has made HUGE strides helping her son. He has the kind of tourettes where he blurts out curse words and other less than pleasant things, but it is not under his control with-o medication.

    Anyway, it really sounds like your son has a great advocate in you. We encourage moms to do that, and we know how hard it is. So keep up the good work.

    What books did the doctor have you buy? We strongly encourage the book" The Explosive Child" by Ross Greene. It has differnt, collaborative parenting strategies. Many of us have found that we can make real progress with our kids using the methods in the book.

    Enough from me, Welcome to our forum, have a great night, and glad you are here!
  3. Andy

    Andy Active Member


    I can so understand those judgmental looks. My difficult child was so out of control last year and because I am not the best disciplinarian, neither is husband, I did feel the, "Why don't they make that kids behave?" They just did not understand - even those who felt sorry for me did not understand that difficult child was not in control of his environment.

    I am very sure that it was the Clonazepam that made my difficult child so disrespectful to teachers and others but he needed it to control his anxiety. Now that he is off of it, he is back to his old self.

    The right medications or lack there of is so important in helping difficult children gain control. When I see someone behaving like that, I usually feel that they are asking for help - they are trying to push away the confusion they are facing. They feel like things are coming at them too fast and they are not given enough time to respond correctly. I wish I could go up and give them a hug and take them to a quiet place to "regroup". Life expects too much of kids.

    You will find lots of support here. I may not be much help myself, but I do care and I definetly have felt the "bad mom" attitudes in regard to my difficult child.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi and welcome. I agree--have a pediataric neurologist oversee the medications, since he has Tourettes. I don't know much about Tourettes, but I do know that it can cause some atypical behavioral issues.
    I agree about "invisible disabilities." Nobody gets it (sigh).
  5. Christy

    Christy New Member

    I hope the new information and medication change is helpful. You are fortunate that at least your son is doing well academically. Do you think the sleeping was due to medication issues or boredom with school? Would a more challenging curriculumn motivate him?

    You make a great point about not judging and that special needs are not always visable or obvious to an outsider. I also find that schools, even though they are aware of the diagnosis and have things like ieps/bips, and even specialized programs, tend to expect all children to behave in a typical fashion and do not get that it is often more than simply bad behavor.

  6. tkjfamily

    tkjfamily New Member

    We were directed to the Explosive Child and The Difiant Child by Douglas Riley. Although difficult child has historically done well academically, his grades are definitely plummetting now.

    And, we received a call from school yesterday and an email today due to behavior!! :whiteflag:

    I really appreciate everyone's thoughts/ideas. No doubt that I will be taking these ideas with me for his next visit.

    This is such a great site -- wish I had found it years ago!!
  7. 4sumrzn

    4sumrzn New Member

    I want to add my welcome!!! You have found a wonderful place. It sounds as if you are going in the right direction to get the best help for your difficult child & your family. One day at a time is all we can do. You will get the best advice, information & suggestions around here :) Along with knowing you are NOT alone.
  8. trinityroyal

    trinityroyal Well-Known Member

    You've already received some great advice from others. I just want to add my welcome!
    Glad you found us.