(Originally written & published on April 17, 2012)
Aren’t you worried about the long term effects?”
I get asked that question often on my Autism Daddy Facebook Page & blog. I hear it when I talk about the meds that Kyle is on. I hear it when I talk about our use of melatonin. I even hear it a little when I talk about Kyle eating microwave popcorn every day.
“Aren’t you worried about the long term effects?”
And when I really think about it my honest answer is…”no, not really”. I talk a lot on here about trying as much as possible to live in the moment, live in the here & now. And I can somewhat control the here & now. I can’t really control the future.
You’ve read HERE what a nice stretch my son Kyle has been in lately. Besides his lack of appetite (and we fear he is losing weight again), he’s really been AWESOME lately.
And I give his new school a lot of the credit. I give the wife a lot of the credit. I’ll even pat myself on the back a bit.
But you know what I also give a lot of the credit too this time?
The meds & supplements he is on.
He is currently on very small doses of the prescription meds klonopin & thorazine. We also give him a fish oil pill (Costco brand), a multivitamin & a probiotic (CVS brand), and good ol’ melatonin (whatever is on sale).
He’s been on the klonopin since last July, the thorazine since last September, melatonin since 2009, and the others since December.
And I’m not worried about the long term effects…mental or physical. Because if you saw my son Kyle when he was off all meds last summer and had what I’ve termed “The Summer Of Rage” and you saw him now, you’d have to say he’s a much more relaxed kid. Not a zombie by any stretch of the imagination, but just a happy guy.
Now I know you’re thinking “how can he not be worried about the long term effects? This one study said this and this other study said that.” Just like in our autism world, all these studies are not white & black. There’s a ton of grey in there.
I am lucky enough to live in the NYC area with some of the world’s best medical minds at my disposal and we trust our pychopharmacologist who prescribed the klonopin & thorazine. She’s worked with asd kids for DECADES. And we trust our pediatrician to speak to the psychopharmacologist so that they are on the same page, and to look out for Kyle’s physical well being.
And maybe that’s naive of us, but we have to live in the here & now, and we have to deal with what we can see.
Before melatonin what we saw was my kid didn’t get to sleep til 11pm and he didn’t get enough sleep and that’s not good for growing boys. With the melatonin he’ll sleep from about 9pm-6am most nights. More sleep is good for my boy & it’s good for the wife & me.
Before klonopin & thorazine what we saw was the summer of rage. Since September, he has been doing really well.
And since the fish oil/ vitamin/ probiotic combo in December he’s been even more mellow and well behaved. Not sure if these supplements are the reason, but I see no reason to stop now.
Now, if somebody told me DEFINITIVELY that this drug is causing his lack of appetite..or that drug is messing with his liver of course we would take him off of it.
And of course, we know that he probably won’t be on this current cocktail of meds & supplements forever. Something will come along and he will probably need to come off some of these things for one reason or another. And when he does I’m CERTAIN it’s going to be AWFUL. I’ve read that coming off klonopin & thorazine can be traumatic. But we will deal with that when it comes along. I will take a GREAT 12 month stretch now and deal with the possible consequences later, and I think if my son could tell us he would choose that as well.
And I know that many people are afraid to go the prescription drug route. They are more worried about side effects or long term effects when it comes to prescription drugs. But just because something’s natural doesn’t mean it can mess you up just as much as a prescription med. Do a google search for any of the DAN dr supplements (GABA, 5-HTP) & side effects or even St Johns Wort & side effects or long term effects and the stuff you’ll read is just as scary as the prescription stuff.
I’m not saying I’m against that stuff. It may work for you. But just don’t tell me that it’s safer than my prescription because it’s “natural” or a “vitamin”
All this to say that we are not worried about the long term effects of any of the things that my son Kyle is currently on. And if in the year 2023 he does have a long term effect that we can positively pinpoint & blame on one of the meds or supplements he took then we will deal with it then… and I will CURSE the 2012 version of myself.
But for now we have a happy, healthy kid and we have to ride this out for as long as it takes us.
You all probably think I’m crazy or a bad parent, right?
Oh well…. I’m a big boy, I can take it.
THE END
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I think it is sad that those of us who choose to use medication are at times made to defend ourselves about those choices. There are so many different therapies and treatments for Autism and some work for some kids and not for others.
Because of this controversy I felt guilty when my daughter's neurologist prescribed Lamictal. He was prescribing it for a seizure disorder but it is also used to help kids with autism with behavior issues. The doctor chose this med to treat her seizures for that reason. I still felt "guilty" that I was treating her behaviors with medication. Did I feel guilty when she was put on a prescription antihistamine at age 3 for severe allergies? No, I was just happy she could get through the night without coughing, sneezing, and itching her skin off. We need to remember that Autism is not a personality trait it is a medical issue with many, many different ways to control symptoms.
So glad your good stretch continues, Autism Daddy!
Hi Autism-Daddy,
I think you are awesome.
This is a great article. Sounds like you have an amazing team. The only thing we were offered for treatment of ASD was ritalin and I had strong feelings about that (like it's not effective for treating Autism and it's not safe for kids under the age of 6) I'm going to have too keep an open mind.
oh, and I must add that since Lamictal my daughter has almost no ritualistic behaviors. She is much less rigid and she rarely exhibits self injurious behavior. It was a win win!
Whew! I'm so with you on this one! I don't know what the possible side effects of my sons meds (focalin XR and Intuniv) are long term but I do know the possible effects of our family not getting relief from his behaviors! I never doubt for a moment it's what he wants as well. He opens up willingly and swallows his handful of pills and I can see daily how much happier we ALL are. If down the road there are repercussions, then we will deal with them, just like all the many other set backs we have had with him!
Same thing here, I'll give him whatever it takes to let him have some quality of life.Last summer he flipped out and started with the self-injurious behaviors which supposedly are teenage behaviors.My son is only 11 but definietely starting to change, and from what I've heard from all the professionals,it is a difficult time for all.He is also very strong, so weve had to put him in a helmet at times.It sure beats him fracturing his skull with those too strong fists.In summation,I guess what I'm saying is as parents of ASD kids we must do what is best for our families, whatever that may be.I dont give a flyin f*** what others think,if its working for our family, then it's right.
When our son started going through puberty at about the age of 10, our lives were turned upside down! He wasn't himself anymore.I have never been so afraid for my son. He would have angry or emotional outburts that would last several hours to even days and there would be no real trigger, the episodes just came and went with no rhyme or reason and he couldn't tell us what was wrong. We were helpless. It was torture to watch him go through this and not be able to calm, comfort him or make it stop. No one warned us just how difficult puberty could be and we weren't even thinking about it much at the age of 10. We went through 3 different doctors trying to find him the help he needed. One of them tried to throw high doses of anti-psychoctics at him, to the point we ended up in ER with our son after one dose. This happened with 2 different drugs. Needless to say we moved on quickly from that doctor. I will never forget when the next doctor after ignoring my son nearly the entire appointment looked me right in the eye and said "Your son has Autism, it is time you came to terms with that and accept this is what his life is going to be. There is no cure" Gee, thanks for the newsflash. Except, I do accept him and his autism, But you cannot ask me to stand aside and watch my child suffer and know it isn't his normal and have you tell me I need to come to terms. I wasn't asking for a cure. I am well aware of what autism is, We live with it every second of every day. I just want his quality of life to be what it had been before these awful episodes began. I wanted my son to be himself...That Doctor was quickly excused as well. We finally found the right doctor and medications for our son. It took us nearly 3 years, but we finally have our boy back and he is doing wonderful again.
My point was to say that I have been there. It was difficult, but we made it through the tough time. I hope everything works out (easier) for you and your family.
Love your blog. Just wanted to pass along one tip we got from our pedi neurologist/sleep specialist (aka The Sanity Saver). He told us to look for melatonin that says it's safe for vegetarians (in the tiny print on the label). Some melatonin is made from pig brains, and it's safer not to eat brain tissue (think mad-cow disease). The inexpensive Nature's Bounty from the grocery store fills the bill.
You're a great Dad, don't ever feel bad for doing all you do.
Without a doubt, klonopin & thorazine are toxic.
I hope soon you are able to help him with cannabinoids, which will do the job of both drugs and probably replace the need for melatonin too :)
I love reading your blogs. Our daughter is high functioning, but that doesn't mean it's easy raising her. It's a day to day thing, and living in the moment is the only way one can make it through sanely. I did cry when the doctors all agreed she needed Adderall, but after six months of her on it, she's a new little girl. She's a bit happier, she can make it through the day at school with less stress, and she is now getting almost straight A's. No, it doesn't stop or ease the Autistic traits, but it takes the ADHD out of the pool, which makes her life easier. The only drawback...the weightloss. Quick fix for that...she eats what she eats and we let her have plenty of it (including microwave popcorn, which is a MUST have in our house). As for the Melatonin, I have never once heard or read anything bad about it, nor have I heard that it's habit forming. All I know is that it's a miracle drug in our house. We went from staying up for three nights straight to sleeping from 9 pm to at least 4 AM. I'll take what I can get for now and deal with the future as it comes :) Thank you for sharing your experiences with us.
You shouldn't have to defend what you do for your child to anybody. For my son he doesn't need medication; I don't look down upon it what so ever. Every child on the spectrum is different and as a parent you do the best you can to help your child!