Thursday, February 23, 2012

Autism vs Parkinson's -- Why are drugs considered bad for one & good for the other??



(originally wtiiten & published on February 23, 2012)


I have a soon to be 9 year old son with severe / classic non-verbal autism. I've written on here countless times that he has the receptive language & expressive language of about an 18 month old and he has been for years.

And a few days ago I painfully recalled what my son used to be able to do / how his brain worked when he had mild PDD-NOS before his huge, unusual, late, slow regression. (you can read that by clicking HERE)

And now that you know that you can better understand my controversial posts a few weeks back about those who say they wouldn't change one thing about their asd kids if they could.  (you can read that HERE & the follow-up post  HERE)

One thing that came out many of the comments is that why would you want to alter your autistic kid's beautiful mind? And why would you want to change his brain?  His brain just works differently than most of ours. Not worse, just different.  And a lot of this comes up again BIG TIME when I talk about the fact that we've tried certain prescription medications on Mr. Kyle.   People write that meds are dangerous, meds have horrible side effects, pharmaceutical companies are evil, etc
I'm really curious if the people that feel this way are the people who's kids they feel were born with autism. Because if you saw your kid have a lot of skills, if you saw your kid speaking, and then saw all of that regress and fall away, regardless if you feel your child's autism was caused by something (vaccines, etc) or he just had late onset autism,  if you saw what your kid was capable of before it slipped away,  wouldn't you want to alter his mind to get it back?

I'm not writing this today because I'm looking to write another controversial post. I swear. 


I'm writing this today because I was thinking of my dad this morning. I saw my dad on Sat & Sun. He is in a nursing home with advanced Parkinson's Disease. 

If you are not familiar with Parkinson's it is what Michael J Fox and Muhammad Ali have.   Parkinson's Disease is described as "a disorder of the brain that leads to shaking (tremors) and difficulty with walking, movement, and coordination."


Symptoms include:
  • Blinking
  • Constipation
  • Difficulty swallowing
  • Drooling
  • Problems with balance and walking
  • No expression in the face (like you are wearing a mask)
  • Muscle aches and pains
  • Movement problems, which include:
    • Difficulty starting movement, such as starting to walk or getting out of a chair
    • Difficulty continuing to move
    • Slowed movements
    • Loss of small or fine hand movements; writing may become small and difficult to read; eating becomes difficults
  • Rigid or stiff muscles, often beginning in the legs
  • Shaking, called tremors
    • Usually occurs in the limbs at rest, or when the arm or leg is held out
    • Goes away when you move
    • Eventually may be seen in the head, lips, tongue, and feet
    • May be worse when tired, excited, or stressed
    • Finger-thumb rubbing (pill-rolling tremor) may be present
  • Slowed, quieter speech and monotone voice
  • Stooped position
  • Low blood pressure when getting up, sweating, drooling, lack of body temperature control. These problems are due to something called autonomic dysfunction.
Other symptoms may include:
  • Anxiety, stress, and tension
  • Confusion
  • Dementia
  • Depression
  • Fainting
  • Hallucinations
  • Memory loss

Sounds like a real picnic, huh?  Who knew the brain was responsible for so much!

 Parkinson's in a brain disorder that usually comes on after the age of 50. And comes on slowly, and slowly starts eating away at one's brain and their skills start regressing.

And what do you do when you start getting Parkinson's?  You start fighting it by taking lots & lots of drugs. Just like classic autism there is no true cure for Parkinson's.  You can hope to try different treatments/meds to lessen the symptoms and to hold on to some of your skills for a little while longer.

But I've seen first hand how adjusting my dad's drug cocktail by adding in a new med, or adjusting a dose, or even adjusting the time of day or the time between between doses can have a huge impact on his brain from one day to the next. One day I'll visit him and he'll be completely lucid and conversing and his speech can be understood and his body will seem more flexible. And another day he will be much more rigid and his voice can barely be understood and he can be hallucinating / confusing reality and his dreams.

Most of that good day vs bad day I attribute to the drugs. So if drugs can help that much with Parkinson's, a disorder that affects the way the brain works.  And if drugs are accepted and can play such a pivotal role in the treatment/ management of Parkinson's, why are so many in the autism community so against / afraid to try drugs?

When you are living a normal/ typical life and then you feel Parkinson's start to eat away at your brain and you can actually feel your functioning level start to regress and describe what it feels like to others what do you do?  You FIGHT IT TOOTH AND NAIL!  And you try every drug possible, side effects be damned!  (Read one of Michael J Fox's books and this is the vibe you will feel)

But some of our kids with autism developed normally for the first couple of years before autism set in and ate away at their functioning levels and yet we are afraid to try drugs on them. Why?!    Because they can't tell us, communicate what is happening?  If they could wouldn't you be fighting it tooth and nail?!

And I'm not talking about or looking for drugs that will cure autism.  Just like Parkinsons I'm talking about drugs that will help diminish some of the debilitating symptoms and improve one's quality of life... even if it's just for a few months.
Now if your kids are high functioning or have Aspergers I can understand being hesitant. And maybe drugs aren't necessary to truly improve their quality of life.

But I've seen first hand with my dad how drugs can have altered by dad's brain and have a HUGE impact on his functioning level, mood, happiness and general well being.

I've written about how drugs have rewired my brain and helped me IMMENSELY with my depression.
(you can read about that by clicking HERE corrected link!)

And I've written a little about some of the meds we've tried with my son. And here's a little more.  

Over the last summer Kyle was filled with RAGE. He was very violent and having multiple major meltdowns/ tantrums per day where he could be self injurious and hurt one of us. Starting in September, with the help of a psycho-pharmacologist who specialized is spectrum kids we've had him on low doses of two old school meds, 2 meds that if you use google will scare the bejesus out of you, 2 meds that were talked about in the book/movie "One Flew Over The Cuckoo's Nest, and 2 meds that have helped Kyle IMMENSELY...

The 2 meds?  Klonopin & Thorazine...

2 scary meds, in very small doses that have rewired his brain a bit and improved Kyle's quality of life and made him a much happier kid.  He is NOT a zombie in any way. He is just Kyle but without most of the meltdowns/ violence.

And I know that Kyle won't be on these meds forever.  And coming off of them will probably be pretty darn rough, but for now they are helping manage some of his symptoms the same way the Parkinson's meds manage some of their symptoms.

That's all I got. I just want to leave you with the fact that Parkinson's is hereditary and my dad has it and his dad had it, so it's probably heading ol Autism Daddy's way someday. And I will be fighting it tooth and nail. And hoping that the evil drug companies come up with a cure or at least even better drugs with fewer side effects.

But between now and then, I'll be looking to and depending on those evil drugs to manage some of Kyle's more severe debilitating autism "symptoms", the things that get in the way of him being happy or making any significant progress.

That's all folks. The end!   :-)

24 comments:

  1. Wow, you are truly an inspiration! I have 2 asd kids & 2 nt kids. One of my asd kids takes meds (mainly for severe depression) & these help his quality of life. I totally agree if something is going to make uour or your childs quality of life better then go for it!!! :)

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  2. I do understand the reluctance because some meds do alter the child/adult so much that they aren't 'themselves' anymore, but I also believe it's always worth a try. Our daughter is an Aspie, but because she's gone through ten years of being misunderstood, mistreated, and much more before we got people to listen to us, she is so full of frustration and rage, and yes, her meltdowns were epic. They would last 3 hours or more. 3 hours of not being able to reach my daughter just broke my heart. Her grades were suffering, she has no social skills (though she is improving since we've started OT and other therapies). Why wouldn't one want to improve the quality of their child's life? We made the choice to put her on some ADHD meds as a trial. We were shocked at the difference. The rage is nearly gone, the meltdowns, when they happen, only last 30 minutes and are few and far between. I hear nothing but praise from the school now, rather than daily complaint calls. No, it hasn't cured the Asperger's, yes, she still has her stimming behaviors, she still can't tell a joke from seriousness, she still speaks so literally that sometimes I want to scream, but she's happy, so I am happy too. Yes, the side effects of a few of the meds we tried scared us, but we have finally found one that works with minimal side effects. I don't judge someone who chooses not to use meds, but I ask them not to judge me either. It was a choice between seeing my daughter happy again or watching her go into such a terrible decline and suffer from depression and anxiety. These choices are never made lightly, are they? Thank you so much for sharing your blogs.

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  3. Autism Daddy, the people saying pharmaceutical companies are evil are likely using this as a reason for not medicating their children in the same say they patronized McDonald's and WalMart. Of course those companies are doing a lot of harm, but it's inconsistent and petulant to refuse their assistance in some cases (ASD kids, i.e.) and not others (chemotherapy for a parent, i.e.) If we learned of a medication that could help our son be more consistent in his levels of functionality by rewiring the way his brain has been trained to work, we would jump on it. It is heartbreaking to see a child who was capable of higher levels of thinking yesterday regress the next morning and need help putting on clothes--because HE is terrified and cannot understand why he can't do today what he could do yesterday. If there was a medication that could help him not feel so awful, you'd better believe we'd be first in line.

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  4. Good blog. Food for thought. Without speaking for the folks who say "I wouldn't change my son/daughter", I still believe a lot of that attitude is attributable to the idea that saying you want a change feels like a betrayal; like you're somehow saying "I'm not satisified with my child, give me a new one."

    And I also think (my opinion only) that the most adamant of these people are really arguing the idea of eugenics moreso than the idea of maintenance drugs.

    Anyway. . . good post.

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  5. i know i've mentioned this before also, but i see the correlation between ASD and parkinson. my mom has it and i even mentioned it to her neuro, who looked at me like i had two heads. parkinson-kyle, parkinson-ashley. how many more are out there, it can't be a fluke!

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  6. My mother has parkinson and my son has pretty severe classical autism..I wonder too if there is a link..

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  7. I agree with you, AutismDaddy. Our son isn't currently on any meds, but if his condition worsened I would certainly consider it. (For the time being, he's making good progress without meds.)
    As I've watched both my grandparents and great aunt slip away to Alzheimer's, it's incredible how that degradation is like watching Riley's recovery in reverse. The timing of my grandmother's decline has particularly mirrored Riley's progress -- almost skill for skill. My grandmother is on meds, and they have helped very much with her depression (though nothing outside of that, unfortunately). I wonder sometimes if I was able to give my grandmother the same therapy I give my son, if she'd improve at all. Unfortunately, I now live in a different country than she does, so that's not possible.
    I also just think that, in general, the less we judge the choices other Autism Mommies and Daddies make, the better. Our kids are all SO different, in symptoms, onset, progress, everything! I would never be so foolhardy to believe that what works for my son is clearly the one and only answer out there. We each have to sort out our own path, and recognize that that's what it is: OUR path.

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  8. i was on the fence about medication for my 2 sons who are on the spectrum as well. the main reason i chose to medicate are that they both have severe anxiety; and my youngest also has a mood disorder as well as the autism and anxiety....it was getting more difficult for me *as a single mother* to deal with all of the anxiety, all of the fits of rage and so on and so forth....it took me a long time to do it; but we are all moving forward together more at peace with one another....great blog!

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  9. Have you ever tried AC chelation with Kyle? This is not a suggestion but an honest question. We have been doing it for about 4 months or 18 rounds as it is referred to. My 4.5 year old has MAJOR expressive language issues and everything we have tried yeilded marginal results.
    The chelation is going pretty well except you have to get up in the middle of the night three days a week. We are definately seeing gains, it just moves really slowly and takes like 4 years or 200 rounds on average. This hardly seems a sacrifice if you can get a functionong kid out of it!!
    Just wondering if you tried this with Kyle and if there was a worsening of symptoms. I did not see you list this in any previous posts. Anyhow, chelation is my last big push ... trying to get an objective picture of the reality of whether it works as well as it is touted too.
    I apologize it this bothers some people, I know chelators are chemicals and some research does show these may be harmful.

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    1. I'd love to find out if that works for you! My ASD son is also non verbal.

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  10. I think it is a great blog indeed, its like our home to the T. What he is going through( meaning Kyle) my son is going through, but I must say my son is doing so much better off the harmful drugs now, he is just on Lexapro 30mg, and the fish oil and vitamins, doing way better than before. My son is just like Kyle in many ways and in some way even more severe at times. We found a lot had to do with the meds. Just our story, not saying Kyle should not be on meds, just our scene thats all.

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  11. If you look at the young with ASD and Sensory Processing Disorders...and then to older family memebers...there ususally is a connection in that the older generation has Altzheimers or Parkinsons. I our family SPD and Parkinsons...I believe the cause is a mitochondrial disorder....Your body can't detox toxins from the environment, drugs, vaccines, pesticides, etc. and also certain proteins, like caesin and gluten and your enzymes don't break these things down properly...what helps..detoxing the body and reinforcing the proper neurological connections with tradtional and alternatives therapies (OT, PT, ST, Vision Therapy, Theraputic Listening Program, Berard Auditory Integration Technique and more). Epsom Salt baths have helped both the young and old - they naturally detox and help modulate the brain...this is why people get made at Big Pharma...they want to put a band aide on instead of looking at the whole person...you need to seek help from a holitstic doctor, chiropractor, accupuncturist, etc. when you resolve the pain these kids are in from intestial bacteria, yeast, parasites and heal the gutt...the brain gets better and the kids/adults feel better...giving them the opportunity to show who they really are...no matter how different they may seem to be...they have many beautiful gifts and these gifts shine when their head and gutt are clear of toxins getting in the way with who they truly are...this is not changing who you think they are or should be...it is fully allowing them to Be who they were meant to be.

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  12. http://www.youtube.com/watch?v=vNZVV4Ciccg I don't know if you would have seen this video or not yet, but this girl is 12 and can now type. It is amazing what this girl has been learning over the years, but could not show her parents or the rest of the world. It may give you a glimmer of hope that some of what he learned is still in there somewhere.

    My prayers that your little man someday is able to overcome some of these behaviors so you can meet the him hiding inside.

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  13. ((hugs)) to you and your family. Thank-you for sharing this and for being so open with us here.

    As far as meds, I totally sympathize with your standpoint and can definitely see where you are coming from on it. I have to admit hough that I am scared to try them for David as of yet but my fears are mainly based on history of over senisitivities to meds that David and I seem to share. The tiniest drop can turn out to have the same results as a full dropper or worse sometimes... (I almost died during labor with my youngest due to complications in this area)

    The reason for this in me I now know is something called Ehlers Danlos Syndrome (a connective tissue disease) and I am afraid my sons' may have it too. That being said, I tend to lean more on the wait and hope other things will work side at least for now because my son wouldn't be able to tell me if something was happening that shouldn't or he was being made to feel "funny".

    If his language improves enough in the future that this is no longer a problem I might actually look into some meds to help him out. Mainly with his violent tantrums like you mentioned doing for Kyle. It tears me apart to see him going through those so often... especially when I know it's worse for him than it could ever possibly be for those of us on the outside trying to help or standing by...

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  14. How many of you are in a situation where you would be willing to try meds (in my case to manage anxiety) but your partner is solidly 'rock brain' against it?
    I would love some advice on this as it breaks my heart to see the debilitating anxiety and not to try to help him manage it...I would appreciate some advice on this front!

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    1. Many therapists will, with an adult (not under care of another) not charge headlong into MEDICATE MEDICATE MEDICATE mode if the patient doesn't want to. They will state that of course that is an option if the should want to pursue it, but really, they seem to prefer trying NON medication methods first. It would likely entail more visits, so he'd have to agree to that, but in the end, it will likely teach him better management of his own mind. In my experience with my daughter, anxiety therapy consists of teaching relaxation techniques, identifying the actual source of anxiety, and gradual exposure. I'd imagine it's different for different types of anxiety, but I'm sure it all consists of types of relaxation techniques.

      Tell him it doesn't hurt to just go see what the therapist has to offer. He has to see that the anxiety is a problem before he will do that though, and you will have to quit smoothing the way for him if he isn't seeing it yet.

      Sometimes, people don't realize that the soles are worn out of their shoes because we run ahead of them sweeping the path smooth. If we want them to get new shoes, we've got to quit sweeping the path and let them step on a few rocks.

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  15. What a well-written post! As a very well respected man once said to me...if your child needed insulin, would you not give it to him? Our kids with ASD are no different. If medication can make a difference in their every day life, why would you not try. Yes, it's not for everyone but if some choose to try...let's not judge. We made the decision to try meds for our son and it has made a noticeable difference in his quality of life.

    I wish for only good times with your dad.

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  16. Oh feck. You're really making me think now...
    I'm worried about medicating. I used anti depressants (God bless 'em) for several years, but I found their side-effects too much to justify their use. Now I manage my depression differently, but I am acutely aware that everyone's chemistry is different. Plus I worry that our kids may be unable to report side effects to us.
    I used to be a nurse, and have seen countless times how the same drug can have have widely different therapeutic and/or side effects on different people.
    That said, if I could remove my child's autism, or at least his behavioural issues, I would at least consider it.
    I'm really glad you're having some good times with your Dad. Long may they continue XXX

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  17. I say medicate away. Forget what those other people say. They don't live your life, they aren't your son's parent. We've tried many things with my son with autism. If he had cancer, we would treat him with drugs. If he had diabetes, he would get a drug. If he had cerebral palsy, we would give him anti-spasmodic medication.

    He has a medical disorder. You treat it with medication. Period.

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  18. My son has moderate autism. I don't feel the need just yet to try any meds on him but I don't judge another parent for what they do for their kids. I say bravo to you for doing what you think is right for your child and the heck with whatever anyone else says. If it makes his quality of life better for now go for it....

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  19. I am the 43 year old Mom of a 14 year old severely Autistic son. I completely understand what you are saying about meds for our kids. We have done many different meds for our son Devon. Some worked, some didn't. Some made him worse and some better and some had pretty much no affect on him at all. We had to cycle through many before we found a combo that would work for him. He was going through a very violent uncontrollable rage stage a few years ago and we had cycled through anti-psychotic meds, ADHD meds and many others and none seemed to help, most made him worse. Finally my doc looked at me and said "Let's try Prozac, it." It was awesome. It helped a lot, he calmed, he could sit and do his work at school better, at least better for him. He also takes Ativan, it also calms him. (He has been on Ativan since he was about 6 or 7) At night he takes Catapress or the generic name is Clonidine I believe. It is a blood pressure med but it helps him sleep. No, he doesn't have high blood pressure, but without the Clonidine, he won't go to sleep. He could go days without sleeping, I am sure many parents know exactly what I mean and know that I do not exaggerate. About a year ago one of my nephews called me because he had seen a story on the news about an alzheimer medication that was being tried on kids with Autism. I researched it, it is Namenda. I made an appointment with my son's doctor and talked to him about it. He talked it over with a few specialists and after about a month he decided that it would likely do no harm and that we should try it. It isn't a miracle drug, however, for Devon it made it so he could focus better. Once we got to the whole dose we realized that he was too "intuned" and getting overloaded, so we cut the dose in half and have found a happy medium. I agree with wanting back what we had when Devon was a baby. (until a few days after getting the MMR he was normal) If there is a treatment out there that won't hurt my son that we can try, I check it out. (We did Secretin infusions when he was young and he started noticing things that he had never noticed after he got the MMR) I wish there was one solid treatment plan for kids with Autism but the fact is there is no solid plan or medication that works across the boards. The saying is - "So, you've met one Autistic kid, you've met one Autistic kid." Meaning that they are all different, no two are the same, similar in many ways but not the same.
    We as parents of these kids with Autism are the pioneers of this disease. We are the ones that have to live the daily life with them, we are the ones that love them unconditionally and we are the ones that have to make the hard choices when it comes to their care, no matter if it is medication or therapy. We didn't ask for this and our kids didn't ask for it, but it is what it is and we have to deal with it daily. I learned early, back when my son was about 3 that what other people thought didn't matter. At the time for us at least, most people had no idea what Autism was unless they had seen Rain Man and even then they didn't have a clue and judgements were made instantly and people glared and even said aweful things to us. I have horror stories that I won't go into on here but know that people are much more informed now than 12 years ago when out son was diagnosed. I guess in a very long winded way my point is, do what you know in your heart is right for your child, if you feel a chance is worth the possible side effect, take it, if not then don't. You, your family and your doctor are the only ones that should have input on anything you do with your child. Advice from other parents (of kids with Autism) is great and has helped us many times but in the end what you try or don't try is your choice. We all do what we hope is the best but we are all human and all make mistakes. Who knows, maybe something you try with your child may help many others, wouldn't that be awesome?

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  20. With my older daughter, (non autism) I could hear the feedback on the ADHD meds right from the horses mouth so to speak. After reteaching her every math problem - literally EVERY. MATH. PROBLEM. from the time she started school, after a few days on her ADHD meds in fourth grade, she sat down, breezed through an entire math assignment all on her own (and it was all correct, I checked) and said; "I don't understand why this was so hard for me. I paid attention in class, and I remember what the teacher said now, and I remember how to do it, and it's not hard now...I can still take the medicine next week, can't I? I like knowing how to do math." She's getting her BA next month. And she still takes the meds for school. Her choice.

    On the fail side of trying meds, we have ALWAYS told the school when we switch doses or meds. And this saved my autistic daughter from getting expelled when she did have a bad reaction to her anti-anxiety medicine. Which was too bad, because it REALLY helped with her anxiety. She had begun going outside again and everything. And then the principal called me to pick her up because she was throwing desks. "I'm glad you said something about the medicine, because that would otherwise be grounds for expulsion." Good to know. ALWAYS keep your school informed about meds, not just because of that, but you know, how do you know about the GOOD things too? She takes them before she goes to school. It's mostly worn off when she gets home. The bulk of effect happens at school. Good, or bad.

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  21. I couldn't agree with you more ! What a great post ! My son was bouncing off the walls, literally, energizer bunny on crack, flapping, chewing on everything,spinning all at 100 miles per hour.He couldn't speak, at least nothing we understood,he was behind in everything, "a late bloomer" I knew something was wrong, okay let me re-phrase, everyone knew something was wrong, except my husband. He'll grow out of it,no son of mine is getting tested for anything, he doesn't need drugs my family doesn't believe in that etc. After seperating and getting full custody of both our sons I could have him tested. He was 5 by then. I jumped through hoops I drove him all over De. and Pa.to find help, not the cure, but help. I finally got an appointment with his current neurologist.HURRAY !! It's like running a marathon to "make things happen" then you find out it's 6months for this appointment, this doctor isn't taking new patients, this doctor only specializes in ADHD , your son is mentally slow, or mentally retarded, mentally challenged etc. By then your thinking "Hey admit me too !! " Anyway, we started with mild ADD drugs, mild change, tweeked them, changed them, had side effects with some,some foods made him sick with some drugs, etc. I don't claim to have a cure and my son is far from perfect, but it's better ! REALLY better! and outsider sees him as a "Handfull" and thinks OMG that kid needs to be medicated ! but it's better, the way he is with no meds is so horrible ! Not just for me or for school, but for him, he can't focus, sensory overload will happen so fast he will throw up or wet himself. His rage and anger sometimes is scary, I can't fault him, he can't help it. I want him to feel better, I want him to have a chance at normalcy I won't deny it ! Isn't that every parents dream ?? I love my son with all that's in me, would I change him if I could ? DAMN STRAIGHT ! It wouldn't be my job as a mother to leave him the way he is and except it ! It doesn't mean I don't except him or I think less of him ! I want more for him and the meds have helped ! If he's happy then I'm happy ! If he glows in the dark when he's 50 then so be it !! Oh, and my Nana had Parkinson's too, makes you wonder how it's all connected. Thanks again for Blogging ! (Generic Ritalin, Ambilify, and Clonidine)

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  22. OMG! I just found this blog not too long ago. We have an 11 year old autistic child like yours. He is totally non verbal. Last summer it was a summer from hell! He was having horrible fits of rage! He would attack me, bite,pinch,and scratch. Then he would punch himself in the face until his nose bled and got down on the floor and banged his head. We took him to several drs to see if maybe it was an ear infection,sinus infection,or strep. They all said he was fine. We finally decided it was time to medicate him. I just could not deal with the fits of rage all day long! I got a list of psych dr.'s from his ped. I called every single one and NONE had any openings until dec or jan. I got online and just started calling every psych dr. within a 45 mile radius that took our insurance. There were a few that did not have a wait list, but they didn't see anyone under 12. Finally I found one who had an opening on oct. 1 that took our insurance. We took it. We just had to deal with these behaviors until then. The first day of school, the teacher calls and says he had a fit and had to be restrained. His psych dr. finally put him on abilify with prozac. It seemed to help him some. The abilify made him really restless and the teachers complained that he just wanted to run all day. They said he was still really aggressive even with the meds. The psych dr. weaned him off those and put him on respidone. That was a total nightmare! So she put him on seroquil and that made his aggression 100x worse to the point it was so scary. Now, he's back on just abilify. He's still having a few fits especially when he don't get his way. Now the dr. wants us to add an adhd med called procentra. Neeedless to say I am scared to death to try it. I always wonder if it will make his aggression worse like the seroquil did.

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