Autism Spectrum Disorders (ASD) & medication question

Discussion in 'General Parenting' started by fiendish, Jun 20, 2008.

  1. fiendish

    fiendish New Member

    I posted a few weeks about about my difficult child (5, HF autism with anxiety/Obsessive Compulsive Disorder (OCD)/ADHD) who is having open heart surgery in 3 weeks (we do have a date now, July 7). His behavior has been escalating for a few months now (he's in his bad cycle) and I finally got his pediatrician to consider medications. He's never been on anything before and they were really reluctant to give him anything because of his heart condition.

    So he started seroquel (12.5mg at bedtime) earlier this week. While he is going to sleep more easily (it used to take 2-3 hours of mania/thrashing around/flopping/talking/melting down etc., now only 45min-1hr; and yes we have a solid early bedtime routine we've worked out with a therapist), I haven't noticed any change in his behavior during the day. He still has semi-OK days and really bad days. (Today is a REALLY bad day.) I'm kind of shocked he can stay awake that long and still be so hyped up the next day because I've taken seroquel before for sleep (I'm BiPolar (BP) II with long time insomnia) and I took 25mg at bedtime and was a zombie for 18 hours. I don't take it anymore for that reason. He only weighs 41lbs???!!! :confused:

    His main issues are anxiety about sensory stuff (clothes, food), inflexibility, and his "superstitions" (Obsessive Compulsive Disorder (OCD)-like rituals and fears, like crumbs of food getting near him, flies, and dogs). He is just high anxiety all the time and has massive meltdowns several times a day. His doctor (who consulted with a child psychiatric) said seroquel would be better than risperdal because he's not really aggressive or combative, not physically at least, and that seroquel was better for anxiety. At first they wanted to try an anti anxiety medication like klonopin but when I reminded him about the insane sleep issues he said seroquel would be better.

    How long until we know whether it's working? I'm concerned because we only have a few weeks until this surgery and if he's freaking out this much about his shirt, we're not going to make it through the surgery. I am not sure if this is the right medication. I'm supposed to call the pediatrician on Monday with a report.

    (For reference, we do explosive child, we've seen therapists, we do charts & social stories, we're trying desperately to get Occupational Therapist (OT) but there is a huge waiting list, we do sensory diet stuff at home. I'm not sure what else we can do as parents without medications, esp. with this surgery coming up. He's going to be in the hospital hooked up to countless machines and in pain for a week, minimum. My own therapist is going to give me some xanax for the surgery...the doctor joked that they could hook me up to a versed drip LOL. I'm kind of wishing it wasn't a joke.)
  2. SRL

    SRL Active Member

    Parents who have used this medication can guide you on that but I am wondering if you've tried Melatonin? It's a natural product that many parents here have used with success and little to no side effects.
  3. fiendish

    fiendish New Member

    Yes, we tried melatonin for several months about a year ago. It worked well at first to get him to sleep but he was really restless all night afterwards, and it stopped working after a while and increasing the dose didn't help.

    I think the reasoning behind seroquel is that it would both help him sleep and reduce his anxiety during the day. It's the anxiety during the day that is causing us the most difficulty right now.
  4. smallworld

    smallworld Moderator

    My son has been taking Seroquel since December for anxiety, depression and mania. Your difficult child is on a very low dose. The dose range for anxiety is 25 to 200 mg. The dose range for mania is 300 to 600 mg (and even higher). I'm guessing your difficult child's dose is just not high enough to see any effect.

    You should also be aware that kids tend to metabolize medications faster than adults. So while 25 mg makes you a zombie, it's very likely that your difficult child's liver is burning up 12.5 mg pretty darn quick.

    I'd recommend a call to the doctor about what you're observing. by the way, you might want to arrange a consult with a child psychiatrist. Peds aren't trained a whole lot in psychiatric medications.
  5. SRL

    SRL Active Member

    Fiendish, I know this doesn't help you short term but have you ever had a sleep study done on him? I recently developed Restless Leg Syndrome and one of the things I realized is how disruptive to sleep and keeping still it would be for a child.

    Does he respond well to pressure? I've been using a weighted blanket at night since the RLS started and it's been calming for me.
  6. fiendish

    fiendish New Member

    thanks-that is what I was wondering, whether the dose was enough. The pediatrician did consult with a child psychiatric and we will be seeing the psychiatric in person after the surgery to discuss longer term options.
  7. fiendish

    fiendish New Member

    we haven't had a sleep study done but I think it is a good idea. he has been like this since birth (he was in NICU and had 2 surgeries as a baby.) I made him a weighted blanket a year or so ago and he HATED it. we tried several times over a month or so and if I could even get it on him he threw it across the room in the night. (I spent a lot of time making it too..)

    Now he sleeps with a body pillow (and his dad -that's the other problem--he is terrified of being alone in a room.) That has helped a bit.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm just wondering if this child is getting early education interventions for his High-Functioning Autism (HFA). No matter how high functioning a child is, if they are on the spectrum in my opinion interventions work better than any medications and give the child the best possible outcome. My son was in school by now, getting all the help he could. Now he is almost fifteen and can pass for normal (although he is still Autism Spectrum Disorders (ASD)). He is also not on medications. Talk therapy doesn't work as well with Autism Spectrum Disorders (ASD) kids as getting help for the autism issues, and I'd demand them if I were you.
    My son also had heart surgery. Did you have a genetics test done to make sure he doesn't have some sort of identifiable syndrome?
    My son was on tons of medications. None helped. The interventions did.
    Good luck.
  9. fiendish

    fiendish New Member

    We are waiting on genetic testing results. They suspect diGeorge.

    Yes, he is in school. He has an old IEP from before we moved here (another state) and we are working on a new IEP.

    We are just trying to get him through this surgery. We will discuss after the surgery whether he needs medications longer term. How old was your son when he had surgery?
  10. Marguerite

    Marguerite Active Member

    You might need to do as much lateral thinking as you can, to find ways to help him settle that go beyond medications.

    We found in general with difficult child 3 - keeping him intellectually challenged seemed to help settle him, especially some subjects like maths. If we didn't have maths work sheets from his teachers I would buy some maths texts that were also puzzle-type books. At 5, mazes were big with him, too. ANYTHING!

    How is his language?

    The reason for this, is that because language was delayed, he has stored the information in his head in bits and pieces, not as well connected as with other people, in odd areas. It's like a computer that needs de-fragging. So getting him to talk about things in such a connected way works to help put in more mental connections between the bits of information, and thus improves his use of language and his recall of information.

    difficult child 3 by this stage would have tested out within normal range for all his language areas, but there are still even mow gaps in his sub-scores which indicate splinter skills even in the areas of language.

    Then we discovered that the 20Q does this exercise for us.
    It's based on the old game "animal, vegetable or mineral" which is also known in some areas as "twenty questions". With the hand-held game, it's a marvellous example of detailed programming, with vocabulary and forks all programmed in. The hand-held game already has the programming we want our kids' brains to develop.

    You begin by switching it on (press button for 'new game'). The message scrolls across the single line screen, "I know what you're thinking... Ready?"
    Once you press "Yes" it starts to ask you questions about the item you are thinking about, so you must have something in mind at this point. Generally the first series of questions is, "is it an animal? Vegetable? Mineral? Other?"
    You select yes or no, depending on what you feel is the correct category.
    More questions follow, some seeming quite random, such as "is it bigger than a pound of butter?"

    If you wait too long, it switches off the display. HOwever, it usually just pausess with display off, if it's mid-game.

    This has been really good for difficult child 3 to play with, to help "de-frag" his brain. Sometimes we need to suggest something for him to think of, and sometimes we have to help him with answers, but as long as he is thinking about them enough, the memory paths are being laid down.

    You may find other things, but if you can think of anything that he can play with (puzzle cubes with little balls, tilt trays etc; lava lamp; plasma ball; lego; maze puzzles; crosswords; sudoku and related puzzles - these all interest difficult child 3) then maybe you have something that could take his mind off a stressful situation.

    Something else that has worked for us - music. An iPod or CD player, with music we've chosen with difficult child 3 (for preference) often helps calm him especially if there are unusual or too many noises around.

    As far as medications go, I really can't help. Every kid is different. Even within our family - difficult child 3 could take a large dose of risperdal for his age and weight; difficult child 1, older and heavier, couldn't take even a quarter the amount of risperdal without gaining a lot of weight and being sedated.
    difficult child 1 takes Zoloft. difficult child 3 gets insomnia with Zoloft.
    Both take dexamphetamine with great results in terms of their ability to stay on task, stay focussed and keep self-control.

    But every kid is different.

    I hope the surgery etc goes well. I would be working that brain of his to keep him mentally occupied, while the doctors work on the medical side of things.

  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son had surgery at 10 weeks. He's been fine, no medications even, no restrictions. I hope it goes as well for you precious child.
  12. SRL

    SRL Active Member

    fiendish, does he have a handheld game system like a Nintendo DS yet? They can really be helpful in providing some regulation for an obsessive type kid.
  13. Sara PA

    Sara PA New Member

    Your son's doctor is aware, of course, that Seroquel has warnings about being taken by people with known cardiovascular disease including heart failure or conduction abnormalities. It can cause hypotension and syncope as well as heart rate increase. That may be why the starting dose is half the normal one.
  14. fiendish

    fiendish New Member

    Yes, I totally agree he needs therapy and coping strategies rather than medications. I don't really want him on medications long term.

    I am sure they know about the cardio interactions and that is why he is on such a low dose. His docs are pretty good. I trust them.

    He had a really fantastic day on Saturday (best day he's had in a long while) and the other days have been mixed, one really bad, the rest pretty typical for now. His doctor wants us to add another 7mg or so in the AM.

    I'm not sure how he'd do with a nintendo. He has a couple of computer games on the web that he loves to play (he's obsessed with space right now). His fine motor skills are really delayed, and he gets very frustrated with the computer. His language is pretty good, but he has a lot of trouble with understanding and expressing emotion. He does have an ipod and that is really helpful. He uses that a lot. He doesn't read yet.

    He has some daily charts but they were old, so we made some new ones and today I'm making a new cool down chart. He has a lot of trouble with coping skills. I will try that describe game with him. (Describe Jupiter...his favorite planet!) He responds really well to visual prompts but when he's having a sensory meltdown he can't cope at all. That's what I really want medications to do--to lessen the anxiety threshhold just a bit so we can work on his coping skills during a crisis.
  15. susiestar

    susiestar Roll With It

    Hi fiendish, sorry to hear about your child's upcoming surgery need. VERY glad they can help him.

    I have some aspie traits as do many of my family members. I spoke with another board member quite some time back about the fact that people with autistic spectrum disorders may not process medications in the standard way other people do. for ME, narcotics do NOT sedate me. This may be part of why your little guy is able to cope while on the medications in ways you can't. I have health issues, and need more pain medications than many other people, just because my body seems to handle them differently. Going back through many family members, we all have our differences in how we handle pain medications. The more "Aspie" we are, the less any pain medication fazes us. Same for other medications, though I don't have first hand knowledge of seroquel in anyone in the family.

    Just an idea as to why your son seems to be reacting differently.

    Of course, each person reacts differently to ANY medicine.

    Hugs adn prayers for your difficult child and entire family,

  16. fiendish

    fiendish New Member

    Hmmm, that's interesting. My brother is also aspie and has always had strange reactions to medications. It has to be neurological.

    We've been doing 12.5 in evening and 7 (quarter tab) in the AM and it is definitely helping him sleep, though I can't really tell if it's doing anything during the day.

    He's gone into total hyper manic mode lately too--he's being really defiant and he really hasn't done that before, at least not to this extent. He gets really ramped up and races around slamming himself into the wall and giggling and screaming No! and I'm not going to! and just laughing, but it's really bizarre. I've had to lie down on him to get him to calm down.

    Needless to say, he cannot slam himself into the wall and I cannot lie down on him after open heart surgery. I've talked to some people at the hospital and some other moms whose kids have conduct issues and they got ativan when they were out of control, so that's what we'll be doing through the hospitalization.

    He's taking it pretty well on the surface (we've done all kinds of prep, slowly, this week) but I'm sure the manic behavior is how he reacts. Also, he's basically stopped eating. He eats two bites of things and is down to about 3 foods. He's going to be hellishly skinny when this is all done :(

    I even got him some pickle pops (he does like pickles, strong flavors: here's the link: and he ate half of one, at least.

    We are leaving on Sunday and the pre-op is monday.