Tuesday, April 17, 2012

"Aren't You Worried About The Long Term Effects of ___?" -- "No Not Really..."


(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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38 comments:

  1. 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!

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  2. Hi Autism-Daddy,

    I think you are awesome.

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  3. 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.

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  4. 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!

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  5. 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!

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  6. 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.

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    1. 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.

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  7. 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.

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  8. 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 :)

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  9. 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.

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  10. 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!

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  11. We use the natrol melatonin. I get it at Walmart. Were starting meds in a month or two. I am looking forward to a happier child who hopefully can attend a regular school ....for kindergarden. Yes I'm medicating my asd 5 year old and don't care who knows it. My mother and aunt will probably disown me but I don't care. I completely agree with your methods and think unless people have walked a mile in our cheerio filled shoes they should shut the front door....

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  12. Glad you wrote this AD. Thanks for the post!

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  13. It amazes me that even people who deal with similar situations can be critical. My son currently only need melatonin, and a iron vitamin supplement. When it comes down to it if meds are what he needs to focus then so be it that is the road we will take. The long term effect....How about making life a little easier for him? Why not explore that option and live in the here and now? I read a lot of what you post and I think you and your wife are AMAZINGLY AWESOME and such a wonderful team. You have helped me and my husband step it up a bit. Thank you so much for putting it out there and being so honest.

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  14. Mate, love the stuff you write, just wondering if you have tried, Epsom Salts in a bath for relaxation and sleep ???
    I am a single fulltime Autism Daddy and i have my little girl on Epsom salt baths 4-5 times a week. She sleeps right thru the nite 8pm - 7-8am. She is calmer and behaviour is very steady..... also showing increased appetite and is sharper and improving all the time.......... i have her on zinc, magnesium, manganese Iron + potassium ( health food product called Percy's Powder) , as well as fish oil......
    No Meds at all.............. got off track there......Epsom salts...have you tried it........i highly recommend it...........great for grown ups too, for relaxing baths, aches and pains !!!

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  15. We haven't medicated our 5yr old Autie because we simply haven't needed to yet, however reading the comments about the various meds people are using and the results is quite comforting because they sound very effective, and when he gets older I think we probably might need to use them. As for whether or not its right to use them, of course its right if they help the child and families quality of life!

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  16. Putting my daughter on meds in 3rd grade totally changed her world. The paralyzing anxiety she suffered finally eased and her world opened up. It took a long time to make the call to put her on meds and it wasn't easy. But it gave her a quality of life that we and share are thankful for each and every day. Under the proper care & supervision, with physicians that we trust, we can make well educated & thoughtful decisions on behalf of our children.

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  17. THANK YOU! Our son is on total of 6 different meds and it is the right mix. he has been on something and sometimes several things since the age of 2. do i like it no but if he was diabetic, had asthma or some other thing such as that i would give him meds. congrats to those that dont have to take meds but i think it should be per child/family. if we can help out our children and make them happier and life easier why not. no one said parenting is easy and sometimes we have to make the tough choices but that is part of being a parent. sometimes it just is. Rosemary

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  18. I am so happy you are able to enjoy your family. Please keep posting because your words and love are inspirational.

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  19. It still surprises me how everyone has to have an opinion on what we do or don't do for our son. I have had the comment more than once, that "You should be ashamed of yourselves. How could you drug a child to make YOUR life easier?" It has NEVER been about US or making OUR life easier. Our concerns have always been about our SON and HIS quality of life. What we can do to make HIS life easier. It has been extremely difficult at times to helplessly watch him go through some of the issues he has. I always think if it is this hard to watch this, It has to be a million times worse to be him and have to live it. I would do just about anything for my kids. When his doctors suggested medications, we didn't say. "It's about time! Whew! Now we can drug him into a stuppor and get on with our lives." We asked questions, did research,and weighed the pros and cons. It isn't something ANY parent does lightly. However, I have to say that the medications have made a huge impact on his quality of life. He is doing so much better! I do NOT regret our choice.
    As parents, we struggle with each difficult decision but always make our choice based on what is best for our son! It would be nice if others could understand that and even if they do not agree with our choices, at least show some respect, and let us live by our decisions.
    It's that old saying about walking in another man's shoes...

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  20. I absolutely LOVE your blogs Autism Daddy! I look forward to each and every one... I am not the parent of an ASD child but I closely know lots of them. I can confirm that each and every single one of them is different and only you as a parent know whats best for yor child! Know else should or even has a right to tell you what to do. In any aspect, but especially in the meds field. Good luck with your precious son!

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  21. Good for you Autism Daddy! You are awesome. Some of these COMMENTS are TOXIC!

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  22. Don't listen to anyone but your own heart (and god if your a believer). You have to do what you feel is right for your child. All add kids are different so no one can tell a parent what is right for their kid. To hell with them is what I say!

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  23. I love your blog, Autism Daddy, and always find myself nodding along while I'm reading. I make no apologies for medicating my 9-year-old daughter, despite the comments I've gotten.

    I can't worry about long-term effects. I have no way of knowing what her future will even hold... will she be able to live independently? Drive? Hold a job? Honestly, dreaming up reasons to fear the future seems silly when there are so many genuine, known concerns.

    Thanks for your honesty!

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  24. So envious. I would do anything to find something that would help my daughter feel better.

    Regarding natural supplements, we've been trying several of Kirkmans supplements for several months now... Super Nu Thera, GABA, DMG and all that stuff. I mean... talk about the summer of rage. Epsom salt baths.... Tried them. Seemed to work the first 2 nights. Then it was.... *itch* *itch* *scratch* *scratch* EIIGGHH!! EEEIIIIIIGGGGGHHHHH!!! It's just been a total bloody nightmare. Not saying they aren't good natural remedies (or supplements) to try. Kirkman makes some wonderful products. Also not saying they don't work for some kids. Just saying that the ones we've tried haven't been the purported miracle-in-the-making I had hoped they would be -- at least not for either one of my kids. Every child has a different set of DNA, and coupled with any given remedy, it seems anything you try will always be a shot in the dark, whether it's medication or a natural supplement.

    As a side note... The supplements I have had any measurable luck with are the same ones AD mentioned... Omega 3, probiotics and Melatonin. I have noticed some increased receptive and expressive language and eye contact from my daughter since adding the Omega 3. And she (and we) are sleeping much better with Melatonin in our lives (which was approved for use by our pediatrician btw). However, her behavior and mood swings remain pretty wild. I suspect it will require some type of medication to help that, but I'm not quite ready to go there again (we tried the medication route before and it was as big a nightmare ordeal as this past summer's supplement rage). If/when I do get brave enough to try medication again, it will be with a much better doctor, and the decision to do so will be based upon risk. In other words, there may be a long term risk from taking medication, but might there be an even bigger risk associated with her ever-increasing self-injurious behavior? Food for thought, right?

    In the end, each parent must choose the selected regimen that feels right for them. As long as they do it responsibly and knowledgeably and the result works favorably for them, then what exactly is there to judge?

    Great blog as usual. Thanks for writing it.

    Janie Ruth
    (aka Autism Momisms)

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  25. I fully believe all ASD parents do the best they can for their kids and make the best choices for their circumstance. Before ASD affected out household, I was one of "those" parents who said I would "never drug my kid". I now eat those words. My 6 year old ASD son takes a very small dose of Fluoxetene daily for anxiety. Without it he simply cannot function. He would not be in a typical classroom, would not have play dates, would not play soccer, the list is endless. He still struggles with some anxiety, but it is not debilitating. I am thankful every day for his medicine!

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  26. Thank you for approaching this topic !! I'm always interested in what other options there are , natural or narcotic, but some people are really rude and condescending. My son is the energizer bunny on crack, lol I can do thingss to keep him calm, but sooner or later I need a shower and to use the bathroom. The school used to call me everyday,is he on medicine yet ? When is his appointment ? He couldn't sit still, couldn't take your eyes off of him, there was no telling what he would get into. It wasn't a bad, loud, what a horrible kids problem, it was turn your head for a minute and he has used his school scissor to cut his shirt, or out the door because he saw a firetruck, no sense of danger or the fact that jumping off of the huge Amish swingset will indeed break your ankle and stepping into the road without looking. This was at 5yrs old. He is now 14 and we have adjusted his meds several times, because of insurance or because he became immune to it. I am doing whatever I need to so he can have some kind of life. Is he well behaved and lethargic ? Not by any means !! Some people comment on his behavoir and I think HAHAHAH ! You should of seen him without meds !! Thanks for sharing !

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  27. Amen to that! We recently started my 5 year old on zoloft for severe anxiety issues, and ocd behaviors. We've noticed a HUGE change in her. It's astounding. It was a tough decision, but it's turning out to be the best one also. The meds, coupled with vitamins, supplements, diet, school, and intensive ABA she is really starting to make progress.
    So far, it has been, without a doubt, the most effective treatment we've tried, and we've done them all...

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  28. I am a 43yold on the spectrum. I take meds. Some people have said you dont need them, I say follow me around a day off of them. It will only take a day. I will be flying high, to the point that you would say I am on illegal drugs. And, you will want me to go take my meds. I am writing this to let the parents know do what you feel is right for the child. The child will thank you later. I am also on the other side of the picture, I am a caregiver, and I have seen kids and taken care of kids, who have not had their meds before I have arived at there house. So, again I say dont let your self down. Do what you feel is right for your child to be able to enjoy his or her life.

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  29. Alot of people have been a bit judgemental of us because our twins are on ADHD meds. They take Kapvay (non-narcotic)twice a day and Vyvanse once a day. They have been on several different meds since they were almost 4. And alot of people were horrified we were medicating children so small. Hell I was horrified we had to do it too. But they were truly a danger to themselves and their younger sister unmedicated. All my husband and I were doing was yelling, screaming and chasing them down 24/7! We were exhausted and miserable and the kids felt they could do nothing right. It was a really really hard period for our family. We had to try several diff combos of meds to get it just right but once we hit the jackpot our lives improved GREATLY!! It has even helped the boys progress in school and become all around happier. They are less agressive and less frustrated. I know medicatng my children wasn't easy but it is the best option for us. So to the people that preach to us that we shouldnt medicate children I simply say "You take them for ONE DAY WITHOUT MEDS!!! You will change your tune real quick!" That usually shuts them all down!

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  30. No one walks in your shoes and every decision a parent makes is for the BENEFIT of their child. Bad parent? Nah I think youre just fine :)

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  31. Thomas is nearly 5 and has Melatonin to help with his sleep, me and his Dad have discussed other Meds when he gets older and both agree if and when the time comes we will consider using anything that will help him stay calm and Happy, stuff what other people think, your child your decision.xxx

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  32. I think you are an awesome parent - and I love reading your blog and I love your amazing positive attitude and yes, we all need to live in the moment - what else do we have?? kudos to you and your lovely family and keep on writing about your amazing and difficult life - you have a lot of people out there walking right along with you!!

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  33. Thanks for sharing your experience about meds. My 6 year old son, he is high functioning, he got PDD NOS and some signs of ADHD.. is taking melatonin suggested by doctor (I buy it at GNC as a supplemental) to help with his sleepand it's working really good. he sleeps since 8.30pm to 7 am He wake up very happy, with nice behavior. Sincé 3 months ago his neuro pediatrician prescribe Adderall 5mg only in the morning because he has low attention in class routines, didn't make the transition during activities.. he is doing very good at school, he improve his attention, working better the school activities, the teacher are really glad with this change.. So I don't know yet if he will need another medication in a future... I have to work more with him some issues with his behavior. As a Parent we have to keep in calm and always be positive...

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  34. So glad Kyle is doing Awesome!!!!! He looks so happy,you and your wife are wonderful parents!!!

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  35. we love your post i wish i could write like you do and tell you all about my son thats 14 years old and he has autism The winter Of Rage has pasted also in our home . my son loves car rides and we used them to calm him down from xmas to last week we pud 10.000 miles on are car just driveing around to keep us and him safe and we used 911 and they was nice they would help us went he was in a Rage. we was waiting for a bed at the program. and lsat week it did . we still see him every other day and he is doing well .this is the only time in 14 years he has every out of our hands. we nevery let anyone watch him in his life. just me and mom 14 years . your so lucky your son will take meds my son stoped and he is a good kid and the meds did work went he was on them .we needed more help then we could give him at this time . we now have him in a program called ( Lindens Behavioral Stabilization Program) it was hard but it was the right thing to do for him to get help we could not give him. there are only a few of program like this around this one and one in Baltimore, maryland called the Kennedy Krieger Institute for Nerobehavioral unit .we picked here. we need help to help him take meds again me and mom have done everything we could do . people do not understand the life we live with our kids we love travis more then anything in this world and we will do what every it takes to help him to move on in this life

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  36. Loving your blog! I am a mom of a 5yo non verbal low functioning son with Asd and severe anxiety. My son is on a low dose of guafacine. This need is a bp med for adults but, works wonders for anxiety for asd children. I didn't give a second thought to putting my son on medication. He was regressing in school. Would not transition at all. The therapists could not even leave the room with him. It got to the point where my mother who baby sat him everyday when I could work couldn't even stand next to him without a severe meltdown. I had to quit working because of this. Now that he's on medication he has changed back into the happy loving Lil man he once was. I feel parents are selfish if they do not use meds when it's obvious their child needs them. They claim they want to do everything to help their children. If their kids are suffering like mine was then selfish they are. My son is not a zombie, he can actually leave the classroom now. My mom can hug him again. It's our job to try to make their lives as functional as possible. If their children are so out of control etc and they refuse meds and judge others for using then as far as I'm concerned it's child abuse. They have no idea how their children feel. I saw the difference in my son and know he's much happier and functions much better on medication. Those parents who choose to let their children suffer because of their own egos are harming their kids not helping. Too all those parents using meds, you choose to help your child live and not suffer. Never feel bad about that.

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  37. Rock on you are doing what's best for your son and family:)

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