Thanks Everybody for Helping to Save My My Daughter' s Life!

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I have wanted to write this for a long time. At around the same time last year, my wife and I were getting very worried about our autistic daughter who was having more and more severe tantrums.

Little did I know in the next 6 months, we were go to through an absolute nightmare. At the urging of the special school that she was atteding, she was put on increasing amoungs of an anti-psychotic drug callsed risperidone. The dose went from 1mg to 2mg per day. During this time, her tantrums just worse and worse.

In November, a member of staff at her school sprained her wrist whilst helping out during a tantrum. My wife and I were then called to see her headmaster and were threatened with expulsion/suspension. She was not allowed to take the school bus and was not allowed to attend school until after 10.30am. Morover, she was no longer to attend normal classes but was isolated in a tutorial room. Sometime when she had a severe tantrum. they would take her up to a padded isolation room (similar to what you would see in films) as a punishment. The worse came in Dec/Jan when she was having more than 10 severe unexplained tantrums per day.

The above was a video taken during that period. She was having these horrific backflips. At one stage, she was twisting her neck at the same time and tried to jump headfirst from the sofa to the floor. I was seriously concerned that she may break her neck and be paralysed. From the video, you can also see some terror in he eyes. It was as we were watching a scene of demonic possession from the "Exocist"

At that point, I have had enought and decided to seek a second opinion from a private child psyhiatrist. He said that the dose of rispiridone was too high and suggested cutting it from 2mg to 1mg. In any case, an EEG carried out on her a few weeks earlier was indeterminate for temperal lobe epilepsy, and rispiridone was complete inapproriate for that. The results were just unbelievably dramatic. Her tantrums suddenly dropped off after the first week. Now we have removed all her medications altogether.

Because the special she was attending played such a large part in making her tantrums worse, we have switched her to a new school and she is coping much better. She is now alllowed to attend normal classes. While she is not free of tantrums, they are much less severe and predictable now. As to how rispiridone could have caused this I do not know. After all, it was supposed to prevent tantrums in the first place. My feeling is that it was causing some sort of intense physial discomfort and Kristi was unable to communiate this to us.

At least, things are looking much better for us now. Just several months ago, we were completely scared of taking it now. I would like to thank for the advice, encouragement that you gave us. I would like to thank Patrician for suggesting that we rule out any physical illenss. I insisted that took an EEG as a result that provided some cover for cutting down the drug. I would also like to than Dave Patterson and Donna for suggesting alternative drug treatments, and of course to everybody else for your advice.

If there is a take home message from our ordeal, it would be that we should extremely careful with drugs in people who could communicate back to us normally.

Best Wishes

  • Profile picture of the author Tina Golden
    I'm glad to hear that things are better, Derek. It's such a frustrating place to be, when you have to fight everyone, it seems, just to help your child.

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  • Profile picture of the author myeanne
    This is sad Derek.

    I hope everything will get better and better. Let's just pray.
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    • Profile picture of the author Kay King
      Derek -

      So happy to hear things are better. That period was so hard for you - and for her. I hope the improvements continue.

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  • Profile picture of the author HeySal
    So glad to hear she is better -- both for her and for you and your wife. That must have been an excruciating ordeal.

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  • Profile picture of the author Patrician
    Hi Derek - Thank God! I am just whooping and hollering inside from joy! Thank you so much for making my day!

    Interesting I just saw a great program on a health cable TV program that reminded me so much of your horrible nightmare with Kristi.

    The kid had OCD symptoms - doing crazy things repeatedly and looked like somebody from the Exorcist too. The parents took him to several psychologists, psychiatrists, MDs and for all the tests and drug therapies. Nothing worked - kept getting worse and worse for two years.

    The child was completely incapacitated by the OCD behaviors. Finally somebody told them about this doctor - a neurologist.

    Big clue why none of the OCD drugs worked: Turned out that a small percentage of children have a reaction to STREP as in plain old strep throat and that was what was bothering him for all that time. They put him on ANTIBIOTICS (hello) and within a few months his symptoms were completely gone - no other drugs.

    He is an articulate, very bright guy and they had him on the program. Man, it was dramatic. He still has to watch out even in adult life that if he ever gets a strep throat he could regress back into the OCD behaviors. But hey, they know what to do!

    Most reactions would be why in the hell didn't any of those doctors have a clue? Because it is rare - whatever.

    Anyway, God bless you and your little family and I hope that everything will continue to improve - who knows she might even "grow out of" all of it! Please give her a little hug from me.
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    • Profile picture of the author Steven Wagenheim
      There is absolutely nothing worse than seeing your child suffer...nothing.

      I am glad she is doing better and you will have my continued prayers.

      I'm a father...and I understand.
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  • Profile picture of the author Kurt
    I'm not a father, but still think this is the best post of the summer...It's nice to hear some good news.

    Hey Derek...Hopefully things will continue to get better.
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  • Profile picture of the author derekwong28
    Thanks for your kind words. Staff from her new school paid a home visit the day before and we showed them the video. Just looking at it gave us the shivers. It is incredible how Kristi has progressed since she was taken off the drugs in January. Now we no longer need to have soft mats in the living room because there is now little danger of Kristi injuring herself. At one point, my mother was insistent on requesting a Catholic priest to carry out an exorcism.

    I keep on kicking myself for not spotting this earlier, despite having misgivings about the drug since last Summer. The big issue for me was that I could not find any reports of Rispiridone causing tantrums directly. Rispiridone is the only drug approved by the FDA for the treatment of autism related behavioral problems. I found it extremely difficult to go againt the advice of a specialist in another medical specialty. The equivocal EEG provided me gave me cover to insist on stopping the drug. Sometimes, you just cannot rely too much on scientific evidence but should trust your instincts instead.

    We were very unhappy about her old school. When they learnt that we have sought a second psychiatric opinion, they told us that they could only accept it on an emergency basis only as they only trusted the first psychiatrist. When Kristi showed a distinct improvement at her old school. It appeared that all the staff were given a gag order so that they were not allowed to talk about Kristi's condition at her school. This is when we decided to change schools. Luckily we were able to do it quickly because of a loophole in the system. Otherwise, we would have to wait for at least 6 months and we would probably have filed a formal complaint then.


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    • Profile picture of the author QuickSurf
      I just watched a lil special on Autism few weeks ago, where they actually were doing methods and not just prescribing drugs and it was working. Like the one kid they had on, started normal then just got worse and worse to where he was diagnosed with severe Autism. Eventually they started testing out these new methods that they were hoping would teach him motor skills again, responses etc. Now he's 13 I think and basically normal.

      See if you can research what the methods were as I can't recall, it was a bunch of stuff from starting off easy (getting a response), to learning their name, and going from there.
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