Today's appointment

Discussion in 'General Parenting' started by HaoZi, Jan 21, 2011.

  1. HaoZi

    HaoZi Guest

    Well, the doctor is a neuropsychiatrist. No testing was done, mostly a consultation. The tests that would show if kiddo is Autism Spectrum Disorders (ASD), etc., still have to be done by someone else. Wants to know why SpEd isn't testing for it when SpEd is doing the IEP on emotional disorder. SpEd suggested I get full evaluation for anything outside of IEP that could be added in later. *headdesk*

    I will say she listened to kiddo a lot more, asked her a lot more, we spent more than an hour with her. She added Topamax and Intuniv, to be tritated up slowly for her ADHD and anxiety.

    She'll refer us to the psychologist for further testing, and (just what kiddo wanted to hear) wants a blood draw to get baseline readings.

    Feel like I'm running in circles now, but I do think she's an improvement over the other psychiatrist even if it means a 60 mile round trip every month (ouch).

    Opinions? Experience with these medications?
  2. smallworld

    smallworld Moderator

    Topamax is an odd choice. It is FDA-approved for seizures and migraines. It is used off-label for bipolar disorder, although clinical studies have shown that it's not all that effective. It's also used to combat medication-induced weight gain.

    Intuniv is long-acting Tenex, Clonidine's cousin. Both are blood-pressure medications so you need to be careful that your daughter's blood pressure doesn't get too low. I've heard mixed reviews about Intuniv -- some say it's helpful with hyperactivity and some say it makes their kids aggressive and agitated.

    My rule of thumb is that you only introduce one medication at a time so that you know beyond a doubt whether it's helping or hurting.
  3. HaoZi

    HaoZi Guest

    She added the Topamax for anxiety and the weight gain issues. I'm rather leery of starting two at same time myself considering her past reactions to medications. Pharmacist also said she sees this mix a lot with a good degree of success. I'll be edgy until I see how she does. I'm just wondering how many hoops I have to jump to get this kid properly tested for Autism Spectrum Disorders (ASD) and whatnot. She said since kiddo hit all language and motor skill milestones as a baby/toddler she doesn't think Pervasive Developmental Disorder (PDD) but won't rule out a spectrum disorder. Which makes sense but doesn't make sense to me, since Autism Spectrum Disorders (ASD) is a Pervasive Developmental Disorder (PDD), right?
  4. smallworld

    smallworld Moderator

    My son has mild Pervasive Developmental Disorder (PDD), which means he's on high-functioning end of the spectrum. He doesn't meet all the criteria for Aspergers, but hit all of his language and developmental milestones on time. I'm not really sure what the doctor you saw meant.

    by the way, I take Topamax for migraines, and I honestly have never noticed that it helped with anxiety (and I have a fair amount of stress in my life).
  5. HaoZi

    HaoZi Guest

    She's high-functioning for sure, but there are certain things that scream Aspie to me and to other parents with Autism Spectrum Disorders (ASD) kids, but the docs don't see it or think it's something else. Don't know which of us is right. None of these docs (to my knowledge) work with a lot of Autism Spectrum Disorders (ASD) kids. Pretty much all the literature in this doctor's waiting room was bipolar with some ADHD thrown in. She said "This child is in pain and (other doctor) should have seen that." She and her office also didn't get why other psychiatrist wouldn't send her for testing.
  6. smallworld

    smallworld Moderator

    If it gives you any comfort, my son didn't get his Pervasive Developmental Disorder (PDD) diagnosis until age 17 (last May), and he had previous neuropsychologist testing at age 9 and at age 14. He's a pretty complicated kid who a lot of docs couldn't figure out. It's one of the reasons he ended up in an Residential Treatment Center (RTC).
  7. HaoZi

    HaoZi Guest

    I sure hope it doesn't take an Residential Treatment Center (RTC) to get it figured out! There are times it wouldn't surprise me, though. I think we're going to skip the clonidine tonight and see how she does on the Topamax alone. If she doesn't get tired by a reasonable hour then I'll give her the clonidine.
  8. Jena

    Jena New Member


    i'm so sorry your going thru the medication thing and i feel as small does adding two new medications at once is a bit of concern for me too only because how will you know which one is doing what?? i wouldn't add the clonidine tongiht with those in her, just me.

    i used clonidine for years also. wishing you luck with it all. remember breath it's all going to come together sometimes it just takes a while. your doing great.
  9. HaoZi

    HaoZi Guest

    Gave her the Topamax. Over an hour later she was still bouncing and wide awake. So much for it knocking her out! Ended up giving her the clonidine, too, which always knocks her out. She finally fell asleep about 11pm.
  10. pepperidge

    pepperidge New Member

    Topamax didn't really have any major sedative effect on my kid. Not much of an effect at all, really.
  11. HaoZi

    HaoZi Guest

    If it does nothing more than keep her from chewing on her fingers, I'll consider it an improvement.
  12. susiestar

    susiestar Roll With It

    I took topomax on two different occasions. The first time I was on it for about 18 months for migraines and depression. It was great but there were some side effects. Drowsiness was NOT one of them. It did help depression somewhat, but more as a boost to the prozac I was on than anything it did alone. I did have problems with what I think is called aphasia. I would know what I wanted to say but could not say (or type or write) the word I wanted. I cannot imagine being a child, esp one learning vocabulary, and dealing iwth this problem. Watch her for it. I will say that it took about a month to see any effect on the depression and at least 2 weeks to see ANY effects. It was awesome for weight though. I had to stop it because I just couldn't afford it. A couple years later we tried it again and I maxed out the dosage and still didn't get enough help with the migraines. I also couldn't tolerate the word recall problem. The word recall problem didn't show up until I was on a significant amount of it, at least 2 increases in dosage.

    As for blood pressure medications, they are MUCH more likely to cause drowsiness. Usually your body will take 1-3 weeks to adjust to this and then it won't be a problem, but if it causes a lot of problems with drowsiness or sleeping too much then the dose shoudl be lowered and increased much more slowly. Often docs increase medications WAY too fast, either with too big a jump in the amount or too frequent jumps. I learned with Jess that sometimes the medication is fine but you have to go super slow (according to the doctor's schedules) or they cause problems that could be avoided. Jess had one medication that we increased one tiny jump a month and it took over 6 mos to do any significant increases. when it worked, it worked well, but when it went up too fast it was a real problem in many ways.

    For medications that are NOT time released I often start with half of whatever the doctor thinks is a 'low' dose and take longer between increases than the docs say. Can't do that with time release medications though.

    Pervasive Developmental Disorder (PDD) is one autism spectrum disorder. I get confused with the abbreviation Autism Spectrum Disorders (ASD) because some seem to mean Asperger's, which is another autism spectrum disorder. Pervasive Developmental Disorder (PDD) is often used when a child doesn't fit into any of the other categories of Autism Spectrum Disorders (ASD)'s neatly. I know kids who are low functioning and have the Pervasive Developmental Disorder (PDD) diagnosis and those who are very very high functioning and have it also. I also know kids who hit the milestones right on target and have Asperger's (Wiz is one) or other various ASDs. The neuropsychologist we have seen says that the researchers are now thinking that adhd is an autism spectrum disorder too, though he is the only one I have heard say it. He had just come from a conference on autism and adhd when he told us this.
  13. smallworld

    smallworld Moderator

    Actually, it's a little more complicated than that.

    Autism Spectrum Disorders (ASD) = Autistic Spectrum Disorders, which is essentially synonymous with
    Pervasive Developmental Disorder (PDD) = Pervasive Developmental Disorders, which in the DSM-IV includes these five disorders:
    1) autistic disorder - the severe form of the disorder, commonly referred to as "autism"
    2) Asperger's Syndrome (AS)
    3) Pervasive Developmental Disorder (PDD)-not otherwise specified - not meeting strict criteria for other Pervasive Developmental Disorder (PDD) disorders
    4) Rett's disorder
    5) childhood disintegrative disorder
  14. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I am probably the topamax queen on this board. It is rarely used for bipolar but for those who do get help from it, it works well. I happen to be one it works very well for. I have had to argue a few folks down about its ability to actually help with I have also had people tell me that I couldnt possibly take the dose I was on or I would be dead. Well...that also wasnt the truth...obviously.

    At one time I was on 1000 mgs a day. We did back down to 600 mgs a day. Mostly because when I lost insurance I couldnt get the county psychiatrist to agree to the 1000 mgs. He said he couldnt believe I was ever on that dose and it was lethal. Well...I had been on it for over 2 years at that point so I doubt it highly.

    The one thing you really do have to keep in mind with topamax is the method in which you start taking it. You start low and go slow.

    I am a very large adult woman and I started off at 25 mgs a day and stayed on that for a month. Then I added another 25 tablet at night for a month. We added a 25 mgs once a month heading up to between 150 or 200 as a target dose to see how I did but we did it very slowly and I didnt have the side effects people talk about.

    Now it did cause me to lose weight. Wish it still It made food very unappealing. It does not make me tired. No effect on sex drive. I dont have the dumbs from topamax, I have them from my various disorders. Maybe some of it is my medications, I cant say for sure considering all that I am on.
  15. susiestar

    susiestar Roll With It

    I also got up to 1000 mgs. I had docs who SWORE that 800 mgs would kill me and that I meant 100 mgs. They were shocked when I dialed my pharmacy and had them tell the doctor that I took 1000 mgs. So I know what Janet has faced with docs not believing that she could survive that high a dose. I wasn't that large when I took it, large for my lack of height, but not like I am now.

    I hope the medications help, and that the psychiatrist is as good as it sounds like she may be. I am with her in not understanding why the other docs wouldn't order the testing. I don't know why some docs refuse to order testing - it isn't like they pay for it, Know what I mean??
  16. Marguerite

    Marguerite Active Member

    Pardon me?

    Asperger's is a form of Pervasive Developmental Disorder (PDD), and one which has no language delay or physical developmental delay. A kid who reaches milestones on time (other than possibly toilet training, but it can still be within normal limits) can still very much have Asperger's.

    Girls are especially difficult to diagnose with Asperger's because it manifests differently in them.

    difficult child 1 wasn't diagnosed Aspie until he was about 14. easy child 2/difficult child 2 still doesn't have an Aspie diagnosis but increasingly most people consider she has it mildly. Currently her anxiety and Obsessive Compulsive Disorder (OCD) is runaway out of control. She's 24.

  17. HaoZi

    HaoZi Guest

    That's why I'm confused as to how she could say not Pervasive Developmental Disorder (PDD) but doesn't rule out kiddo being on spectrum.
  18. HaoZi

    HaoZi Guest

    One thing I found amusing during the appointment, every time kiddo tried to counter something I said psychiatrist told her if she wanted to argue, to go to school to be a lawyer so she could get paid for arguing. I remember many times my Dad telling me I should do that for the exact same reason. Kiddo's response was pretty similar. "I don't want to be a lawyer, I want to be a marine biologist. But I want to stay in the boat." LMAO. But kiddo did settle down a bit without getting overly defensive as I expected.
  19. Marguerite

    Marguerite Active Member

    Got to chuckle over the marine biologist who doesn't want to get wet... however, there is still a lot of scope for study. I've studied a bit of marine biology over the years, as has husband. You can do a lot, just peering down a microscope. And you can still get very wet, without leaving the boat!

    For an interesting look (fictional) at specialists who don't personally have contact with what they specialise in, read up on Asimov's Wendell Urth stories. Wendell Urth is an extraterrologist (someone who studies everything away from the earth) who is phobic about any form of transportation. If he can't walk there, he won't go.

  20. HaoZi

    HaoZi Guest

    She gets her marine biology gene from me, it was one of my first loves, but I focused mostly on sharks. She's more encompassing than I am, but I want to go cage diving.