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Down Syndrome Message Board

  • It started at 16

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    Old 01-09-2010, 07:52 AM   #31
    lovetoask
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    Re: It started at 16

    I am new to this site as well. I looked all over to find people who were having this problem with their child for the last two years and did not find any. My son is 17 but began these problems at age 13 or 14. At age 14, he started whispering instead of using his very articulate voice. He totally declined from there. He had changed schools from public to private with only special needs. His brothers grew up and went to college. But most importantly, we did not realize he had sleep problems. He was diagnosed with severe sleep apnea. They removed his tonsils, adenoids and performed a turbinectomy. We do not use the machine. I make sure he does not drink caffeine, and keep him on a good sleep pattern. This totally changed his behavior problems. However, it took time to get him to use his voice again. I think he did not have an adequate speech therapist. He is actually learning all over again how to use his speech, how to ask questions, etc. I also have someone who takes him on outings. She has a 5 yr. old daughter and neices and nephews he likes to hang with. It took a little time, but he loves her and it gives him a life without us. Also, he loves sports, our community has a miracle league and flag football. He does taekwondo, gymnastics and tennis with his special needs friends. I think he was depressed because his life changed. I think he is OCD and he did not like his deep voice. We tried the drugs at first, but I did not like the side effects. The antidepressants made him aggressive, the Geodon made him too complacent. He is not on any medication. I have started inviting friends over. We are making progress.
    We will see how this works out, but i am considering placing him back in the public school system to work on transitioning into adult life. I have friends with kids the same age. We are trying to plan a life for them that includes work (maybe opening some type of business), social, etc.

     
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    Old 01-10-2010, 05:43 PM   #32
    pts3308
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    Re: It started at 16

    Quote:
    Originally Posted by lovetoask View Post
    I am new to this site as well. I looked all over to find people who were having this problem with their child for the last two years and did not find any. My son is 17 but began these problems at age 13 or 14. At age 14, he started whispering instead of using his very articulate voice. He totally declined from there. He had changed schools from public to private with only special needs. His brothers grew up and went to college. But most importantly, we did not realize he had sleep problems. He was diagnosed with severe sleep apnea. They removed his tonsils, adenoids and performed a turbinectomy. We do not use the machine. I make sure he does not drink caffeine, and keep him on a good sleep pattern. This totally changed his behavior problems. However, it took time to get him to use his voice again. I think he did not have an adequate speech therapist. He is actually learning all over again how to use his speech, how to ask questions, etc. I also have someone who takes him on outings. She has a 5 yr. old daughter and neices and nephews he likes to hang with. It took a little time, but he loves her and it gives him a life without us. Also, he loves sports, our community has a miracle league and flag football. He does taekwondo, gymnastics and tennis with his special needs friends. I think he was depressed because his life changed. I think he is OCD and he did not like his deep voice. We tried the drugs at first, but I did not like the side effects. The antidepressants made him aggressive, the Geodon made him too complacent. He is not on any medication. I have started inviting friends over. We are making progress.
    We will see how this works out, but i am considering placing him back in the public school system to work on transitioning into adult life. I have friends with kids the same age. We are trying to plan a life for them that includes work (maybe opening some type of business), social, etc.
    I do think that perhaps my daughter's depression was caused by the fact that she lost her job of 3-1/2 years when the restaurant closed abruptly. She went to work one day and the next day it was closed. I don't think any amount of explanation worked, as she just didn't understand what happened when they were always telling her and me she did a great job. I will never know if in fact that was the reason she was crying frequently, because she just would always say she didn't know why she was crying, and that she wasn't sad, and nothing hurt. 10 years ago when she was on the antiphycotic drugs, they changed nothing, except a 45 pound weight gain. December of 2008 when she started Geodon again, and took it for 6 months, it did nothing once again, but I suppose that combined with the depression drug has caused her to gain 30 pounds in a year. She only weighed 135 when we started this, and has never had a weight problem except when she takes this type medication. I have recently found a special needs class at our church, and also the lady who teaches the class (a former sp. ed. teacher), has day-hab at her home on Mondays and Thursdays. They bowl, go to movies, the mall, and will soon go to the rodeo. She seems to be enjoying the outings, and it gets her out of the house and doing something instead of watching TV. I am amazed that your son can do without the sleep apnea machine. I was told about a surgery, but I just didn't want to put her through that, as she does not do well with antisetic, and the doctor said the surgery doesn't always work anyway. You know, after the first 16 years I had accepted Down's Syndrome, but I certainly did not sign up for a mental illness also.

     
    Old 01-11-2010, 07:04 AM   #33
    lovetoask
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    Re: It started at 16

    Surgery did work for us and many in my area as well. This is a common problem with down's I was told. Zach is getting much better every day and I think being active with the normal population as well as having friends in his peer group is very important to him. He loves having friends over. It is a lot of work on me, but it is worth it. As he gets in his 20's, I hope to find him a group home setting to live in. I think they like being around other people. Civitan in our area has a group home and a center the adults go to attend classes and work. There are two clients in their 50's with down syndrome that are very happy, they are in love, and enjoy life. Everyone loves them in the center. I know it is a process to find the right place, but you might consider it. Do you have a local Easter Seals or Civitan group? It might be something you can work toward.

     
    Old 02-22-2010, 04:00 AM   #34
    Karren26
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    Re: It started at 16

    It has been a long time coming but we finally truly are sure what has been wrong with Hailey. She was diagnosed three years ago with hypothyroid and blood work was done including the thyroid antibody test. The antibody test was extremely high and was not brought up at that time. As my previous posts the psychosis started about six months after she started on synthroid.

    Long story short two months ago I finally found a hormone doctor that was willing to see her at 14. Well, he did blood work with all female hormones, which we do see him today, but a month ago he said he had no idea how she had a period and that estrogen and progesterone were extremely low. I had noticed this last year breast development had stopped. She is lopsided and looks like they do when they first start growing. The major issue here is that the thyroid antibody test was done and the lab range is 0-60 and Hailey's is 4973.6!! This indicated Hashimoto's but looking into it further there is a Hashimoto's encephalopathy that is rare and causes psychosis, and or neurological problems. Please look this up. There are several cases of Down Syndome and this disease. People like us have it and are diagnosed with dementia and Alzheimers. It can be life threatening which scared me to death due to the fact that her doctor she had three years ago let the high numbers slide past and this was when she was still high functioning. It is treated with predisone. Hailey will be going to Duke University to see a doctor there that treats this and has done research on Down Syndrome with Hashimoto's Encephalopathy. Most doctors do no know anything about this, her primary is willing to learn as we move forward with this. Please read up and pass on this knowledge to you support groups.

     
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