Next medication change, round.... something

Discussion in 'General Parenting' started by HaoZi, Feb 14, 2011.

  1. HaoZi

    HaoZi Guest

    OK, doctor still not really feeling the need for more testing. I ask for a full evaluation and get asked what I'm wanting. Is there some more specific name that I'm missing? I said a full psychological/neurological profile. Why? *headdesk* Let me think... because she reacts so oddly to so many classes of medications that something is being missed, that's why. doctor also still saying she can't possibly be Pervasive Developmental Disorder (PDD) because she met all her early milestones (so why do so many Aspies not get diagnosis'd until teens or later? she had no answer for that).

    She's changing the clonidine to Kapvay (same thing but in an extended release tablet). She's keeping her on the Abilify and the Topamax, but the Topamax dose is getting split into two smaller doses instead of one big dose. She also wants to add Trileptil (she wanted kiddo on Tegretal but I nixed that because of the health issues it can bring).

    Not too impressed with the Kapvay thus far this evening, it sure isn't knocking her out like the clonidine did (which was why she was on the clonidine, because without it she's nocturnal).
  2. Marguerite

    Marguerite Active Member

    "doctor, I want my child given a proper neuropsychologist evaluation. I want to properly identify her strengths and weaknesses so we can actively target any problem areas with behavioural management and intervention, while at the same time supporting her and encouraging her in her high skill areas. As things stand right now, we're limited to just guessing. I have asked for this before, but you seem reluctant. Do you have a problem with my child having a neuropsychologist referral?"

    Go for it.

  3. HaoZi

    HaoZi Guest

    This doctor is a neuropsychiatrist. She's not wanting to send her to the psychologist and neurologist for add'l testing. Keeps asking for specifics I'm looking for. She also thinks we live too far for her to properly manage her medication *headdesk*. The one doctor that comes down our way is the one I stopped taking kiddo to because he spent minimal time with us and wasn't helping.
  4. Marguerite

    Marguerite Active Member

    Modify what I said, then. And point out, "Yes, we do live a fair way away, but we haven't got a lot of options. It's you or somebody even further afield."

    Repeat the request - "We ant to identify her strengths and weaknesses so we are better equipped to give her as much help as possible in every form, including coaching in problem subject areas as well as extension and encouragement in talented areas. Right now we are shooting blind, hit-and-miss and possibly putting too many eggs in the medication basket. Let's give her as much other help, as an adjunct to what you're already doing."

    Sounds to me like this neuropsychologist doesn't play well with others.

  5. HaoZi

    HaoZi Guest

    Right about now I'M not playing well with others. And this kid is STILL WIDE AWAKE. Extended release stuff not looking like a wonderful idea right now. It's 11:30 at night and she's up, cranky, not tired or wanting to try to sleep, and creeping her way towards the throwing things stage. And we now have complaints about knee joint pains. Tranq guns should be issued with these kids. When I finally get some insurance for me I'm going to see if I can get ME tested and tranq'd.
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I feel for you. with-o medications my difficult child is also wide awake till all hours and then up very early. I'd be putting in a call to the psychiatrist this morning! Hugs.
  7. Jena

    Jena New Member


    i'm sorry i've been down the i cant' sleep road for far too long since birth it's 12 years of non sleep and witchy me!! :)

    is her sleep issues any worse now do you think since adding in all these medications? also why change the clonidine if it's working? also why add yet another medication that's ridiculous i'm sorry this doctor sounds like he needs as boot up his you know what. i got so mad just reading that. yes i know i have anger issues lol

    so listen my thought write a letter requesting a neuropyschological evaluation. i'lm going to look for mine tmrw so i can pull out all the specific test names so you can list them to this idiot. i wouldnt' add in another medication. how are you going to tell what's going on now???

    bare with-me ppl have done same with-our sleep issues. what's the bedtime ritual? can you make it do step1 2 3 than bed and keep it same each night barring any huge thing you have to do? what do you do when she throws junk?

    i've taken this whole new approach to difficult child sleep issues and well it's seeming to work. she's done the flipping out thing i simply walk away. i used to leave door open on a crack to make sure she didn't break anything. now i just remove myself entirely i'm like your going to be 12 deal with it just like i have the nights i cant' sleep. she loses me her audience adn she's been giving up after trying to break bunkbed for 20 min. it may take till 1 yet she's going down. for us that's improvement kid used to sit up till 5 a.m. each night.

    (((Hugs))) sorry i rambled just this doctor sounds like a jerk. i'd write a letter requesting it now let him see your removing the verbal requests. who is he to tell you what you can and can't have for your kid?
  8. HaoZi

    HaoZi Guest

    Be glad, new doctor originally suggested Tegretol, but with kiddo's hx of reacting atypically to medications and the health risks involved with that one I refused and said I'd consider Trileptal instead. I have heard a lot of good things about it in areas in which she needs add'l help and it has a much lower side effect profile than most medications. Haven't started her on it yet. Haven't even picked it up from the pharmacy yet. When she starts a new medication I tend to do it on weekends so I can keep a close eye on her for the first couple of days.
    I left a note for her school counselor to forward the letter requesting testing she wrote to prior doctor to this new doctor, and I've got an email in to someone in our area that does preliminary Autism Spectrum Disorders (ASD) testing to see if she can point us in some helpful direction.
  9. Marguerite

    Marguerite Active Member

    When difficult child 3 was a toddler and we were beginning to realise there was a problem, we had two GPs. I needed to get a GP referral to a specialist in order to get difficult child 3 assessed. My main GP was away, I had to see the junior partner who didn't like me and was, frankly, a problem. He did not want to write the referral, so I said, "If you're right and I am wrong, this doctor will quickly tell me so. But if there is something wrong, the sooner we identify what it is, the sooner this kid gets the help he may be needing. So if you're right - the specialist will back you up. You win. If I'm right - your patient gets help. You win. Let's do it."

    He wrote the referral, possibly just to shut me up, and the rest is history. Interestingly, a few months after the diagnosis I had to take difficult child 3 back to this jerk because the kid was running a very high fever. I asked the GP to check his ears and throat as well, the doctor said there was no point. "If he was in pain, he would let you know," the doctor said.
    I said, "No, he doesn't react to pain that way. He carries on as normal even if he has tonsillitis or middle ear infection."
    The doctor kept arguing (would have been quicker to have a look, frankly) and I finally had to say, "His responses to pain are different, he has a diagnosis of autism."
    The doctor then threw me out of the room and while he was standing at the door holding it open, he said (in front of a waiting room full of patients), "Stop trying to find things wrong with your kid!"
    I quietly replied, "You wrote the referral to the specialist who made the diagnosis. Ring him up and argue with him, I'm just repeating what I was told."
    That night we had difficult child 3 at the hospital - croup, tonsillitis and middle ear infection.

    When dealing with doctors who "know better", sometimes you have to give them what sells. Stroke their egos. And never say, "My child has X." Instead you say, "My child has a diagnosis of X." That way if the doctor begins to argue with you and say, "That's ridiculous!" then you simply respond with, "I didn't diagnose him. Argue with the doctor who did."

    With people in general, the higher the intelligence, the higher the mental instability, quite often. Not always. So professions where they have to be really smart, they often can be really unstable, or sensitive, or whatever. Go gently with them to get what you want out of the situation. But never forget - YOU are the customer, hiring their services. You can always sack your employees.

  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi, hon. Do you NEED a referral? All insurance is different, I know. I'm fortunate that I can take kids away from one doctor and to another one (even the same kind) if I want another opinion and I don't need the doctor's okay. And we're on Medicaid! You may want to check. You may have the option without needing her approval. Sadly, many medical personnel are very full of themselves and believe that only THEY can be right, but psychiatry and some neurological disorders are gray areas because there are no blood tests.
    When we want another opinion, we just get one and don't even tell the other doctor and it's still covered. It's a sad day indeed in Medicaid offers more than private insurance.
  11. HaoZi

    HaoZi Guest

    It's a form of Medicaid, yes. I tried one doctor that wouldn't see her without another doctor's referral - even the referral from the insurance company wasn't enough to get a phone call back from them!
  12. smallworld

    smallworld Moderator

    Can you travel to a children's or university teaching hospital? I don't think you would need a referral to see a neuropsychologist there.
  13. HaoZi

    HaoZi Guest

    Nearest one is about two hours away, barring an emergency it's not a viable option for us.
  14. smallworld

    smallworld Moderator

    Have you asked your pediatrician for a referral?