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    Old 01-20-2009, 07:08 AM   #16
    pts3308
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    Re: It started at 16

    Quote:
    Originally Posted by Suzann View Post
    I have been to doctors who completely ignored me, or anything I had to say, pertaining to my daughter, and that can be very frustrating. I realize that I do not have the medical expertise they have, but I do have the "mommy" expertise and know that my daughter is not going to talk or relate to medical issues as most patients do. Sometimes I just want to say.."Please, don't ignore me, listen to what I'm trying to tell you about this young lady."

    I know very little about autism, but I do know that my daughter seems to have some of the traits.
    I hope to have more luck with the new phychiatrist we are seeing next Monday. What is kind of scary, is that the parents of the children with the dual diagnosis said it is hard to find a doctor that knows much about Autism. Autism occurs once in 150 births, so shouldn't doctors be more familiar with it because of the high incidence is my question? When I first took my daughter to our primary physician when she was 16 and all this started happening, he suggested she had scizophrenia. Scared me half to death. The school district phycologist and two private phychiatrists did not agree with that, but came up with the "phychosis undiagnosed" meaning as far as I am concerned, they really didn't know what the heck was going on, and 15 years later, I am no closer to an answer.

     
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    Old 02-03-2009, 04:53 AM   #17
    kmcdowell
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    Re: It started at 16

    Wow, your daughters especially Suzann, sounds identical to mine. I mean to the very last detail.
    What the heck is going on. I have the Mental Health in Down Syndrome book. It is not listed like this. I believe we need to stick together and figure this out.
    I have not been on here for a while. We have tried Hailey on Zyprexa very low dose. At first she started talking to us more, playing on the computer, watching a tiny bit of tv. We slowly upped her over three weeks to the whole pill of 2.5 mg at bedtime. With every quarter pill it pooped out really fast. Now, it does help her sleep but the laughing and talking are back. She also gained I am sure 5 pounds. So, she will be coming off of it.
    This last year since this started she has tried baby amounts of Seroquel, Abilify, and Risperdal. Due to the fact our kids metabolize meds differently, this non response has been seen in the past by Dr. Capone at Kennedy Krieder Institute. I have no idea what is next. Antidepressants make her laugh and not sleep at all. Triliptal made her hallucinate more. Just know that you are not alone in this. To have a daughter that was high functioning, get her period then disappear is so...........frustrating. Now the doctors need to see there is consistancy out there. Maybe one of us will find the answer with one of these doctors and we can all get the help we need.

    Last edited by kmcdowell; 02-03-2009 at 09:23 AM. Reason: added info

     
    Old 02-04-2009, 07:24 AM   #18
    pts3308
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    Re: It started at 16

    Quote:
    Originally Posted by kmcdowell View Post
    Wow, your daughters especially Suzann, sounds identical to mine. I mean to the very last detail.
    What the heck is going on. I have the Mental Health in Down Syndrome book. It is not listed like this. I believe we need to stick together and figure this out.
    I have not been on here for a while. We have tried Hailey on Zyprexa very low dose. At first she started talking to us more, playing on the computer, watching a tiny bit of tv. We slowly upped her over three weeks to the whole pill of 2.5 mg at bedtime. With every quarter pill it pooped out really fast. Now, it does help her sleep but the laughing and talking are back. She also gained I am sure 5 pounds. So, she will be coming off of it.
    This last year since this started she has tried baby amounts of Seroquel, Abilify, and Risperdal. Due to the fact our kids metabolize meds differently, this non response has been seen in the past by Dr. Capone at Kennedy Krieder Institute. I have no idea what is next. Antidepressants make her laugh and not sleep at all. Triliptal made her hallucinate more. Just know that you are not alone in this. To have a daughter that was high functioning, get her period then disappear is so...........frustrating. Now the doctors need to see there is consistancy out there. Maybe one of us will find the answer with one of these doctors and we can all get the help we need.
    My daughter Joy had the test for sleep apnea last Thursday. She does have it, so we go back in two weeks for another night to see what kind of breathing apparatus and the air level she does best with. Hope she tolerates the mask well at home. There were some hours where she stopped breathing or whatever they call it, up to 29 times in one hour, but he still said it is only mild to moderate. She did very well with all the wires on her, and I told her she was going to look like a robot and after she had them all on I told her I couldn't decide whether she looked like R2D2 or C3PO (the robots from Star Wars which she loves). She really laughed at that. I have great hopes that the breathing apparatus will help with the phycosis, but who knows. We have had one visit with the new phychiatrist, and I really like her. She asked many questions, (unlike the first one), and we filled out 10 pages of questions before we went. She tapered her off the Abilify, and put her on Geodon which she said is an older drug, and has less of a weight gain factor than Abilify. She has gained 5 pounds since starting Abilify, but she gained 10 pounds before she ever got on any of the medications, and I don't know why. She has weighed 135 for 9 years, and is now up to 150. For the first day or two on the Geodon, starting Friday, Jan 30th, (but she was still on 2.5 mg of the Abilify also), I thought I saw a change, more smiling, she actually clapped when we went to a play that night. Usually she doesn't clap at an event even if everyone else does. Now the last two days, that seems to have gone away and she seems pretty much the same as always, maybe even more subdood. We go back to the phychiatrist next Monday. She gave me samples of the Geodon that are 40, 60 and 80 mg, so I don't know why that is so much higher than the Abilify which she started at 2 mg and then went up to 5 mg. Just to throw another monkey wrench into the fire, I have a friend whose daughter is close to 40, and this happened to her. It is much more severe than my daughter, and she pretty much won't talk at all, at least not to me if I ask her a question, doesn't make any eye contact, (and my daughter does), and I have known her for 18 years. She took her to every kind of doctor imaginable and had every test you can think of, maybe 7 years ago, and all they could come up with was maybe early onset Alzeheimers. I know our kids are prone to early Alzeheimers, (and what a bummer that is), but I think 16 is a little too early for me to think that is the problem with my daughter, or your daughter at 11, and her daughter was in her early to mid 30s.

     
    Old 02-04-2009, 08:13 AM   #19
    kmcdowell
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    Re: It started at 16

    Like I said the Zeprexa worked on the psychosis at first then it is like it breaks through. The problem with Hailey is that everyone of these drugs we have tried, by the time we get to the dose she needs severe side effects start and she has to stop.

    Talked to her psychiatrist today and we are stopping it due to the diabetes risk with the rapid weight gain over the last three weeks. Plus, she is restless at 2.5 and less stopped working. He is going to try a new drug Monday. All drugs start at different mg. the newer ones start them at 2.5 which could be the same active ingrediant as starting another drug at that drugs starting amount which may be a pill of 20mg. Thats all I know. Hope we can all figure this out. It is so frustrating and sad.
    I did run across a old book on line on psychology and DS, the did research in the 30's and 70's and came to the conclusion that brain at the cellular level and start deteriating at birth into late childhood. They had seen this deteration in a 7 yr old patient at that time. This was a little over my head in med terms but it was mainly about dementia and personality changes as a whole in DS patients. I just have found that all the mothers on the internet over this last few months have said there kids were high functioning and outgoing. Then it was gone. I really hope there is a fix and this is not just a early decline. I can not find a nerologist to see Hailey, and can they see things in a scan at the cellular level I wonder. I am going to find one to see her if I have to drive 10 hours away again. Ugh!

     
    Old 02-05-2009, 06:25 AM   #20
    pts3308
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    Re: It started at 16

    Quote:
    Originally Posted by kmcdowell View Post
    Like I said the Zeprexa worked on the psychosis at first then it is like it breaks through. The problem with Hailey is that everyone of these drugs we have tried, by the time we get to the dose she needs severe side effects start and she has to stop.

    Talked to her psychiatrist today and we are stopping it due to the diabetes risk with the rapid weight gain over the last three weeks. Plus, she is restless at 2.5 and less stopped working. He is going to try a new drug Monday. All drugs start at different mg. the newer ones start them at 2.5 which could be the same active ingrediant as starting another drug at that drugs starting amount which may be a pill of 20mg. Thats all I know. Hope we can all figure this out. It is so frustrating and sad.
    I did run across a old book on line on psychology and DS, the did research in the 30's and 70's and came to the conclusion that brain at the cellular level and start deteriating at birth into late childhood. They had seen this deteration in a 7 yr old patient at that time. This was a little over my head in med terms but it was mainly about dementia and personality changes as a whole in DS patients. I just have found that all the mothers on the internet over this last few months have said there kids were high functioning and outgoing. Then it was gone. I really hope there is a fix and this is not just a early decline. I can not find a nerologist to see Hailey, and can they see things in a scan at the cellular level I wonder. I am going to find one to see her if I have to drive 10 hours away again. Ugh!
    Yes, the medication mg are confusing. She was taking Abilify 2 mg, then went to 5mg, and the new phychiatrist, tapered her off the Abilify and has started her on the Geodon at 40 mg, and now she is at 60 mg, and we are to keep going up to 80 mg and maybe 120 mg, if I see an improvement. I plan to ask her on Monday when we go, why this is so much higher than the Abilify was, as I think they are relatively the same type of drug, although she said the Geodon is an older drug, with less of a weight gain factor. When my daughter took meds starting at 17 for 5 years, she gained 45 pounds. She is 5 feet tall and she weighed 175, while taking them. That really concerned me, and was one of the reasons I decided to stop the meds. I didn't think it was good for her heart, but I guess I didn't think about diabetes, but physicals never showed any. And the meds weren't really doing much except masking the symptoms, of the rocking, hand movements, and self talking, probably about 90%, but did nothing for the personality change.

     
    Old 02-05-2009, 06:46 AM   #21
    kmcdowell
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    Re: It started at 16

    The antipsychotic drugs all can cause diabetes. Zeprexa which is a newer drug like Geodon is the worse to make a persons insulin sky rocket. Hailey is 4ft 7 and was 100 pounds. My scale is broke but not being able to button some pants and her belly is sticking pretty far out,and her face is alot fuller. I bet she gained 10 pounds this last 3 weeks. I can not see giving the meds if she is not getting back to the way she was, I surely do not want her to live the rest of her life with a sugar problem due to a med that did not even help her. So scary. I just do not know what to do anymore. We will see what her doctor says Monday. I will keep you posted and let us know how you make out Monday. Geodon do you see a change in her at all?

     
    Old 09-14-2009, 03:52 PM   #22
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    Re: It started at 16

    Thank you for telling the story of your daughter. It is always good to know when others may be experiencing the same issues with their DS daughters.
    My daughter is 21. The month after turning 21, she starting have these exact same issues your daughter is experiencing. She was taking vidoes that she watched and made them into real life. They are stuck with her, and causing her to constantly think on them and it is very hard to get through to her. She was very involved in Special Olympics, very athletic. She loved school, she loved doing math sheets witht the calculator, loved coloring by number, wonderful colorer. Enjoyed washing clothes, folding clothes, hated to shop, loved watching videos, and kept her room very neat and tidy. The month after she turned 21 she made what some say an 180 degree change. She is no longer sleeping, and doing none of the things she loved to do. It is a chore to get her to school. We have been giving her 10mg of Lexapro, and she is taking ambien to get her to sleep. Bendryl did the opposite. The l/2 dose of ambien helps calm her to sleep but then is up during the night just as you had stated, and I am just realizing that may be why she is sleeping at school. We are going to wein her off Lexapro and go the hormonal route also. Once she is off the Lexapro the gynecologist will see her and probably begin something with her. We have had the MRI, EKG, EEG, hypo glycemia test, the 5 hour blood test, a chest xray, an abdominal xray, and lots of blood work. Her hormones were fine, but we are leaning toward it being something with that as I am seeing her touch more in her privates and crunching a pillow. I was told to let them do this. I don't know if this helps any, just knowing there are others out there going through the same thing, but I will be back online if we find anything which may help someone else.
    We thought also she was having seizures because of her staring, but test are negative. She is also rocking with and without music which she has never done in the past. So, same symptons, just no answers. Will continue to pray for our special dear ones. By the way, she likes to go shopping. She wants to go all the time. Figure that.

     
    Old 09-16-2009, 07:31 AM   #23
    pts3308
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    Re: It started at 16

    Thank you for your reply. My daughter has always slept very well, or so I thought. Some mothers have said their children are up all night. This was never the case with her. This past December she was diagnosed with sleep apnea, which is very common in Down's, since their nasal passages are so small, so she has been using a CPAP machine since then. There is some talk that sleep apnea can cause phycosis, (her diagnosis at 17 was, phycosis undiagnosed), so I hoped, along with the Prozac, that there would be a change, but there has been none. She also took Geodon, an antiphycotic drug for 5 months, and I saw no change with it either. Nothing seems to work, although I haven't found her crying as much, which started last fall, since being on the Prozac. She just shut down at 16, and nothing has changed. A friend who was a mental health nurse said that mental illness happening in the teenage years. to any child, is quite common, and I suppose just because our children are mentally retarded doesn't keep them from developing it, although the double wammy certainly seems grossly unfair. I have just retired and moved back to my home town, so I am having great difficulty finding another phychiatrist. I got a list from my insurance company, and have called about 25 and either they aren't taking new patients, have no openings until November, only take Medicare or only take private insurance. I am currently trying to get my daughter on Medicare, but the first papers I sent in February were apparently lost, (our government at work), so I have to fill them out again. If I start her at a doctor who takes private insurance, then when she got Medicare, I would have to change to another doctor. This, is a large city of about 1.5 million, so I can't believe it is so difficult to find a doctor.

     
    Old 10-20-2009, 06:59 AM   #24
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    Re: It started at 16

    It has been awhile, I checked in several times and there were no updated posts. Glad some of you are back. Well, Hailey has only been on Seasonique birth control for the last. 6 months. She is better than when she started this mess 2 years ago this fall. She will now be 15 this March.

    Anyway, she still does not sleep the week before the full moon, and really this happens like clock work. She is up laughing and talking. And her sleeping is still in not great at times. Took her off the pill for a month and she was a mess.
    So, I know the pill is helping her some, she also was constantly grinding herself into her bed, acting and talking to her pillow like she was having sex with someone. I know one of you said the masturbating was starting. Now, on the pill a month it has stopped. She also had started this last time, touching herself even in front of company. Like I said the pill has stopped this.

    Now, in June we found her esophagus had closed shut due to a pill burning it and causing scar tissue. Long story short she could not eat much over the entire summer due to the fact the doc had to dilate it several times to get it open and stay open. She was eating Hebrew National hotdogs processed up or cut real small, ground down or cut up hamburger and smashed up peas, ect. all natural stuff. She actually was very close most days at being her old self. I have said all along that she has become sensitive to preservatives and additives just all the junk in our food and drinks. If she drinks a Sprite just half of it she will cry for no reason, every single time. I can see her change from talking a little more to me on any day to her lips moving quietly and giggling just by giving her a vitamin. She has become very sensitive to everything. I did run across a website on Down Syndrome and food sensitivities, google that. It is just hard to limit her food for more than two weeks. Try it. See if it helps. I know it helps her, people will even comment on how good she is doing then give her meds or food with msg or something else that is crap and she goes back into her own world again. Like she is lost in her own head. Today she is great, back to hamburger and plain fruit and vegs. chicken with no hormones etc... I had given her nitequil for sleep over the weekend only 2 teaspoons, the second night I did it she was a mess for two days, I could not even take her grocery shopping without literally dragging her around. Sorry, I am rambling. Last thing she now is rubbing her hands together alot, these are tics, she rubs her legs on the bed when in it. Giggling is a tic. Bad food or drinks make this constant almost. Also, OCD is now worse at times and her new doc says that OCD will cause the tics and the anxiety. Anxiety is bad enough for us, our kids do not know how to handle this constant reved up feeling so they shut down. I will stop for now. let me know if any of this sounds helps. Gluten will affect autism and also effects Hailey. I am all over the place with this, but after two years I am trying to just put it all together. < edited >

    Last edited by hb-mod; 10-20-2009 at 10:23 AM. Reason: Please don't post personal information, or email address, per Posting Policy. Thanks!

     
    Old 10-20-2009, 10:40 PM   #25
    pts3308
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    Re: It started at 16

    My daughter started taking birth control pills at about 13 because her period was so heavy it was just unmanagable. I doubt that it was a hormone problem since the phycosis didn't begin until she was 16, almost 17, and her period started a month before she turned 11. She has put on at least 15 lbs. and probably more since she started these meds in December. I haven't weighed her in a while. Once again the Geodon for the phycosis that she took for about 4 months earlier this year, didn't do anything, just as the same type of drug that she took starting at 17 for 5 years didn't do anything then either. Our move to another city and her losing her job in the summer of 2008, that she had had for 3-1/2 years, I am sure didn't help with her depression. It seems we all have similar problems and there are no answers. It isn't enough that when our children are born we morn the loss of the perfect child we expected, go on with our lives and love them, and some years later have to morn the loss of the child we had again as that child goes away again.

     
    Old 10-21-2009, 04:13 AM   #26
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    Re: It started at 16

    I know this is just very sad. She was high functioning and we just knew she would live on her own at some point. Which now that is impossible unless things change. She still is very smart and now on a good day she does respond, if she wants to. Two years ago she did not speak at all. When I look back to when it started she is better. But, far from who she was.

    Like I said the sensitivities to chemicals and the ton of food allergies we found out she had I really think is a big major part. Why all of a sudden I have no idea. Maybe the chemicals when digested amp up anxiety and then she can not handle it.

    I did go to a neurologist in late winter and he told me it was just her mind was going toward alzheimers and it was starting already. I am not buying it. Not when I see some days she now can almost be back to herself and it is all based on if she has slept and what she has been eating.

     
    Old 10-22-2009, 06:56 AM   #27
    pts3308
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    Re: It started at 16

    Yes, I had another friend whose daughter was probably 30 when she took her to every kind of doctor you can imagine, and the conclusion of the neurologist was early Alzeheimers. She didn't buy that and neither do I. I know our children have a predisposition to early Alzeheimers, but 30??? or 17 in my daughter's case, I just don't buy that, and think that is what the doctors say when they don't know what the problem is. After all my daughter's diagnosis is "phycosis undiagnosed" and my question to the doctor was, "does that mean you don't know what the heck is wrong with her," and he said basicially yes. As with your daughter, she has her good moments, but most are not good. Once in a great while she will say something that is so intelligent, that it tells me there is a lot more in there than comes out. It is usually out of the blue and totally unexpected. A few months ago she used a word (wish I could remember it), which I had no idea that she knew what it meant, and she used it in the right context. I was amazed.

     
    Old 11-22-2009, 06:40 AM   #28
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    Re: It started at 16

    Have you noticed her behaviors getting worse when she has drank or ate any certain food? I am really picking up on foods that have preservatives, dyes, etc...making her worse.

     
    Old 11-23-2009, 06:59 AM   #29
    pts3308
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    Re: It started at 16

    I can't say that I have noticed any difference in her behavior. She does usually have one diet Pepsi a day, and I sometimes wonder about that. My mother has celiac disease (can't eat wheat or gluten), and Down's are very prone to having it. I have never had her tested, but she does love bread in any form. I do know another child who was very hyper for many years, and he was found to have Celiac, and is a different person now. Being hyper is not a problem with my daughter. I only wish she were, as she hardly every says anything or reacts to anything since the phycosis happened.

     
    Old 12-13-2009, 04:41 PM   #30
    FiddlerJo
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    Re: It started at 16

    Hi,
    I'm new to this site....actually signed up to health boards because I broke my heel this summer and wanted info from fellow heelies.

    I have a 24 year old daughter with DS. She is/was/can be very high functioniing, but has always had autistic like tendencies. I think they are just part of the DS spectrum and not something different. The talking to herself has gone on for as long as I can remember. First it was an imaginary friend, then it was just voices in her head and now she knows she is acting out her thoughts (silently), and mouthing and acting out CDs such as the 3 High School Musical and Hanna Montana stuff. (Of course I'm constantly having to astop her from getting too worked up in public!0. Talking to themselves is considered a normal coping skill in people with DS, so that part of her behaviors doesn't bother me. She is generally not very social, has never been one to initiate a conservation unless it's with someone she is extremely comfortable with, but has become more reclusive and less adaptable in the last two to three years. She's always danced with people at the bowling parties etc...This year she danced around by herself...in her own little world. She also gets angry more often and "blows up" over practically nothing..

    I personally think she is depressed because she knows she is different from her three sisters and also isn't doing all she is capable of. She's in a very boring sheltered workshop because there is nothing else in our area and she isn't challenged. The alternative is sitting in her room watching more TV. Of course, she'd see no problem with that! I'm trying to find other alternatives..

    I really think this problem is worse with the higher functioning people with DS. I'd probably escape into an imaginary world too if I thought I had no control over my life or that I was not able to get married, drive, live on my own etc....like other people....

    I don't know what the solution is, but I do know that our kids are usually doing fine at 22 when they leave the school system and that there are not any programs for them after that or job opportunities or other ways they van feel "normal".

    Sorry to be such a "downer", but I really don't think drugs are the answer. I think looking at the world through our kids' eyes and trying to figure out how to improve situations for them is they key.

    Joanna

     
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