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Quillivant XR
A MyAutismTeam Member asked a question 💭

Hi we have a 12 boy with High Functioning Autism. Recently found out that he also has ADHD. Doctor is having us try Quillivant XR (methylphenidate HCI)because it is liquid and he doesn't do well with pills. Has anyone else used this? Wondering how it worked and possible side effects?

posted July 31, 2013
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A MyAutismTeam Member

Thank you everyone so much for all the help and information. Just to let you know our son is 12 and was diagnosed with High Functioning Autism at 3. We have used therapies, supplements and various biomedical treatments for the last 9 years and have seen great results. We also assumed that the ADHD behaviors were associated with ASD. In the last year we have been told by several specialists (one of which is a trusted therapist who has worked with him since he was 6 with great result) that he also has ADHD. Just so you understand we don't come to the decision to use medication lightly. Which is why I posted here to see what other parents have seen. I appreciate all the input and am so glad there is a place like this where parent advocates can discuss options. Thank you all again for your answers.

posted August 2, 2013
A MyAutismTeam Member

Ritalin (which Quillivant is just a liquid form of) has been prescribed since 1960 and has been EXTENSIVELY studied. To suggest that there isn't a lot of science behind it is entirely incorrect.

posted August 1, 2013 (edited)
A MyAutismTeam Member

It sounds like youre doing a great job figuring things out, and i hope you get as much help as you need in making your decisions. its great this forum exists. i dont know the drug in question, so i am sorry if I flew off the handle. its just that we've had a lot of drugs thrown atmour two kids and rhe science to support what the docs wanted to do just wasnt there. it ticks me off. we were giving drugs and then drugs for the side effects,and it was compromising his health long term.
i think our concerns for,psych meds is that when we've been told to " try this med" is that kids change and mature so quickly. My hitter/ runner came back from winter break as calm as a lamb --- if we had put him on Prozac, we wd have erroneously attributed it to the drug. Also, I've tried psych drugs myself and so has my husband but as adults we can evaluate what the drug is doing to us. Our jobs, marriages, lives are set and just our brain chemistry is changed. I just don't see that for young kids we have the same setup to tell if drugs work. You need to keep a very detailed behavior diary so our imperfect brains dont misremember, because our kids brains are not developed enough for them to be able to tell us. For data tracking I use autism pro app. Otherwise the science shows our own brains are unreliable at evaluating data over time without clear record keeping. Finally, the science has to be there. Many docs are prescribing things without the science behind them.

posted August 2, 2013 (edited)
A MyAutismTeam Member

Yep one of my guys takes Quillivant. It's been a huge help for him. I really like the fact that its a liquid so you can really fine tune the correct dose. My son is 5 and takes 7ml/day. Just remember during your titration process that dosing isn't related to age or weight, its based on how much improvement he experiences vs side effects.
Side effects are going to be the same as any other form of Ritalin. The ones we've experienced are decreased appetite/weight loss and he has some extra trouble falling asleep.
We give him Instant Breakfast made with whole milk along with the rest of his breakfast because its an easy way to get more calories in and out doc has told is that if necessary we can start giving him a certain antihistamine that has the side effect of making you hungry. We haven't gone this route yet because often times the side effects decrease or disappear over time but if he's still not really gaining weight in a few months we are going to try it. As far as sleep is concerned, we give him 1.5 ml of melatonin about an hour before bedtime and it helps quite a bit. Also, getting plenty of physical exercise during the day really improves his sleep.
If you have any other questions, I'm happy to help.

posted August 1, 2013 (edited)
A MyAutismTeam Member

What I like about Ritalin is that you can see the results right away, and it is very clear if it works or not. I would be cautious about med results based on general population however. For ex, SSRIsnare not effective in autism, see summary of meta analysis here http://www.medpagetoday.com/Pediatrics/Autism/3...

posted August 2, 2013 (edited)

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