Update doctor appointments-long

Discussion in 'General Parenting' started by firehorsewoman, Jul 6, 2012.

  1. Please forgive me if this post is not very organized. I am totally exhausted yet eager to share with you guys how the appointments with the tdocs and psychiatrists went over the past two days. Let me preface the update by saying we have been going to neurologists, psychologist, therapists and psychiatrists for the past six out of eight years of my son's life. Today was one of the VERY few appointments where I actually feel we made some progress. I am sure that most of you can relate to how I feel....there is so much frustration along the way in regards to getting a diagnosis and managing the medications...not to mention feeling heard and understood by the professionals managing the case....so, I am going to enjoy the rare feeling of hope that I left the hospital with today.

    A different psychology team from the teams that have evaluated my son previously evaluated him yesterday. They met with me separately while my son was evaluated. After that the team discussed the evaluation and parent interview while we waited, they shared their assessment with me at the end.

    I told them from the start that most pressing concerns were:
    1. Persistent suicidal thoughts and feelings
    2. Extreme daily mood swings including depression, hyperactivity, aggression
    3. Increasing severity and persistent hyper-sexuality
    Yes, there are other concerns but those were my top three that had to be addressed immediately. I also expressed that I want to find a therapy program to help my son with coping skills. I gave them extensive, detailed, examples of my top three concerns. His father was not present and did not provide me with an e-mail or written concerns to share with this group so, I provided them a copy of the e-mail that he sent me last month stating that if difficult child does not "straighten up" by the end of the summer he was going to place him in a Residential Treatment Facility (RTF) or boarding school.

    The main conclusion by the team at the end of yesterday's evaluation was that my son's behavior is not consistent with his previous primary diagnosis of ADHD. On the BASC he was scoring very low for ADHD but high for depression and mood disorder. We discussed that many of the behaviors especially the hyper-sexuality is consistent with bipolar. Their recommendation was to re-evaluation his medical therapy. Because his psychiatry appointment was for the next morning (today) it was agreed that the lead psychologist would meet with his attending psychiatrist prior to our morning appointment and we would all discuss the plan together at the appointment. difficult child's dad was to be at that appointment too. I was thrilled with the plan to have us all in the same room at the same time discussing the situation.

    As some of you know, I have never been comfortable with his ADHD diagnosis. I never thought it fit and more importantly, he has not responded to medications prescribed for the condition. If anything, he is worse after two years of different ADHD medications and doses of medications. My ex-husband has seen things differently and until recently has not admitted to there being any problems aside from attention related behaviors. The genie was let out of the bottle by him writing me the e-mail last month.

    The lead therapist told my ex-husband this am, "My expertise is ADHD and your son did not in my opinion display even the mildest of ADHD symptoms nor score high in that regard." He went on to tell him how concerned he was for a mood disorder. He does not think that it is major depressive disorder but more consistent with bi-polar. My ex-husband wanted to know if ADHD was still part of difficult child's diagnosis and of course we discussed co-morbidity as a a possibility but once again it was stressed that mood disorders in kids cause them to lose attention.

    The biggest surprise to me was that my ex admitted that the suicidal and hypersexual behaviors are occurring in his home as well. That was the first time that he has ever been in agreement with me about my son's behavior although at each appointment I have brought up the suicidal and sexual stuff (last appointment he blamed me buying sex ed book for kids.) He also agreed that there are lots of extreme mood swings. The only behavior that he does not see as consistently or severely is the aggression.

    The docs agreed that the new working diagnosis for my son is Mood Disorder-not otherwise specified. They are not ready to diagnose him with bipolar disorder just yet. Fine. I'm okay with that. Let's just move on from ADHD as the primary diagnosis. The plan when I left (I had to get to work and let before my ex did with my son) was to start difficult child on lithium and gradually discontinue with Adderall and Strattera. I liked the plan. The ex seemed to agree to it. I hope that things did not change after I left but he has not responded to my messages (yet?) asking him about that.

    I feel some hope. Not because of exactly what the diagnosis is or is not...I am not married to a particular diagnosis.....but because what we have been doing for two years is not working. We all agreed that difficult child is in a much worse state of mind than ever and we need a new plan.
    Lasted edited by : Jul 6, 2012
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad you are feeling more hopeful. I remember feeling so relieved when we received difficult child's diagnosis, it made feel that it wasn't "us" as parents but that there really was something that we could work at treating.
  3. TerryJ2

    TerryJ2 Well-Known Member

    I'm glad that you've moved onto a mood disorder and away from ADHD. I can see why you're divorced ... just saying ...
  4. confuzzled

    confuzzled Member

    sounds like you finally got someone to listen...and it does sound to me you are starting down the right path.

    i get what you are saying about enjoying the feeling of progress for a change--i'm sure it feels awesome.

    i hope the collective they will help your difficult child--it sounds to me like a reasonable conclusion and a reasonable treatment plan!!
  5. I wanted to add that they evaluated my son very late in the day (430-6pm) so that his Adderall would have for the most part been out of his system. We were told by that time of day he should have scored high for ADHD type symptoms but he scored very low.

    PS- still haven't heard back from the ex regarding whether or not he has or is going to start difficult child on the lithium nor when the follow-up appointment with psychiatrist is scheduled for.
    Lasted edited by : Jul 7, 2012
  6. kiml

    kiml New Member

    congrats on getting people to listen. I know you have struggled with people listening to you (especially your ex).
  7. Malika

    Malika Well-Known Member

    That is good news and I am glad you have a diagnosis that seems more accurate, with the treatment plan to go with it. Also that your ex-husband is being more open about disclosing the way things really are with your son. I do hope this can be the beginning of a more stable and harmonious life for your son and for you and your family.
  8. buddy

    buddy New Member

    So glad you are making progress. Your son deserves a chance and you are amazing in your advocacy for him. Do you think there's a chance ex won't allow the lithium? My son is on lithium but doesn't have bipolar. I can share that for him it caused almost immediate increase in appetite and weight. At one point he was so obsessed with food he couldn't stop talking about restaurants and any kind of food discussion. He also woke several times per night to pee. The dose was lowered and it fixed that. On it's own it didn't work for us but now he takes zyprexa and is improved and I don't know if it is the zyprexa or the combination. Since so much is going on I won't risk his going off of it. Between the two medications and puberty he has gained over 40 pounds since Oct. He has also grown several inches too though. Just sharing one experience. Terry's son is just starting it too. Others here have stories about it. Every person is so different of course. I hope this is a step in the right direction! Will be looking forward to an update from you soon! !
  9. Allan-Matlem

    Allan-Matlem Active Member

    I lost my reply to your previous post.

    I spoke previously of seeing behaviors as symptoms of a kids lagging skills and unmet concerns. We need to get an understanding of the situations and conditions which give rise to these behaviors. Now there are medical conditions like hyperactivity and mood disorders that are treated better by medication , but we still have to take a holisitc approach and see medication as scaffolding to help us start using cps and solve specific problems in a durable way.

    The ALsup list from The livesinthebalance.org site will help us identify the lagging skills and encourage us to list unsolved problems in great detail.

    Sending you positive thoughts and prayers that your kid will find the right medication for him quickly and that it will stabilize him so he can proceed and deal with his unsolved problems

    I hope this helps

  10. I was able to talk to the kids last night. My son tells me that he has started taking the lithium. He told me "I will have to update my mood chart under the medication section." : ) I think that it is a good thing that he is thinking about this! I really believe that he should be involved in the process and not just be handed pills and told to take them. He sounded very good last night. We talked about a bunch of other stuff but I really wanted to gauge how he was feeling about the doctor appointments since I had to leave before he did. As you can imagine it was a pretty intense experience for all of us and the main therapist kept reminding my ex that this little eight year old boy is dealing with some heavy stuff. My son told me about having his blood drawn for labs (he is always a champ about this for some reason, never even cries) and then I told him that I am very happy that we all came up with some new plans to help him and help understand him.

    Thanks for sharing your experience regarding lithium Buddy. I would actually welcome him being obsessed with food if the hypersexuality goes away or tones down. Him talking about restaurants vs "hot women" would be a great trade off in my opinion. His eating now is very sporadic, he never gained any weight on Risperdal but was taken off for hyperprolactin levels. So, hopefully he won't gain weight but, even if he does, but stops talking about wanting to be dead I will gladly accept that trade-off. They have started him on a very low (probably sub therapeutic) dose and are going to increase it very slowly. Their biggest concern was him becoming dehydrated in the heat and humidity especially since he plays a bunch of sports. I think we can manage it though.

    Thanks EVERYONE for your support and information. Both are invaluable. My co-workers and friends have noticed a lightness in my voice and attitude not seen before. I feel like a huge boulder was moved out of the path of me trying to help my son. Thanks for all the good wishes. I hope that I have more positive updates to come!
  11. Bunny

    Bunny Active Member

    I could not agree with you more!! He is the one who has to take the medications and I think that he needs to talked to and listened to about them.

    I think that it's FANTASTIC that you got people to really listen to what your concerns are and they are moving away from the ADHD diagnosis, and that your ex finally admitted that he is actually seeing some of the behaviors at his house that you are seeing in your own. That blows the idea that somehow this is your fault right out of the water. Hopefully, the lithium will work well for him.
  12. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    I am so relieved to hear your ex is giving your son the medications. And, I am really happy to hear about the lightness in your voice and attitude and that you feel like a huge boulder was moved out of your path, this is very good news. I hope your path continues to get easier and that you get all the support you need for your son and for yourself. HUGS TO YOU!