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pts3308 10-30-2008 08:35 AM

It started at 16
I have a 31 year old Downs daughter, who when she was 16 started talking to herself (silently), rocking back and forth and twitching her hands, and basically stopped talking spontaneously. She would answer questions sometimes, but only talk occasionally. Before 16 there was none of this behavior, and she was mainstreamed in several classes. At 17 she started on medication which caused her to gain 45 pounds and made her drowsy all the time. It did stop most of the above symptoms, but did not give me back the very normal acting, social daughter who had very good speech. She still has good speech on the rare occasion when she says something. She was on medication for 5 years, and has been off for about 8 years. Yes, the symptoms have been there all along, but lately they have gotten worse. I am thinking this could be attributed to the fact that the restaurant she worked for for over three years closed, and she lost her job. Her original diagnosis was "phycosis undiagnosed". I just took her to a new phychiatrist, who seems to think there may be some autistic symptoms. He thinks because she was calm, quiet and well behaved for 16 years, that maybe I just didn't notice these autistic charactistics, which is of course rediculous. She is still calm, quiet, and well behaved, but pretty much doesn't interact with her peers or me. She goes to many social activities and bowls on a league, but no interaction there either. I even had friends, when it started, ask me if I had noticed the rocking and twitching. Then this same doctor mentioned turrets syndrome. I have never heard of someone developing turrets 16 years into their life. This doctor has started her on a new medication which she has taken for 5 days, and it takes two-three weeks to take effect. I wonder if anyone else has a child with these same symptoms.

Bubbasmommy 11-05-2008 04:24 PM

Re: It started at 16
I'm not quite sure if this is the same or not, but I'm going to tell you my story and see if it has some related meaning. I have an 11 yr old son w/ds. He was happy, outgoing, loving, loved being the center of attention. He used to play video games, and just plain thrived in life. About 6-8 wks ago he started to change. I'm not say that it was overnight, but it might as well have been. He just completely did a 180. He still enjoys his TV, but everything else I can't seem to get a reaction out of him. It's almost like he has no drive at all. He quit running and jumping, or riding his bike. He quit his video games. At school, he started to regress badly. I took him to the doctor and they tested for everything under the sun.(Diabetes, Thyroid, ALL, Celiac, etc....) They did MRI, EEG and a spinal tap. All tests came back normal. Now he is having a relapse with the bathroom issues. I have him in pull ups due to the number of "accidents" that he has. He also has a hard time going to sleep at night. I'm really at a loss of what to do next. I've searched the internet for answers and can't seem to find any. Does this sound the same as your situation?

pts3308 11-06-2008 08:29 AM

Re: It started at 16
Thank you so much for replying. Yes, it was a 180 degree turn in personality for my daugther also. She has seen several doctors and even friends said maybe it was tied to puberty. Well, in her case I doubt it, since she started her period a month before she turned 11, and this didn't start until 16. Although your son is 11, so close to puberty. There are some similarities and some differences. My daughter didn't have any problem with bathroom issues. She played Special Olympics sports, softball, and basketball from the age of 12. She was excellent at throwing baskets, (and still is), but basically, after this started she just started standing in the middle of the court seeming not to know what to do. Shooting baskets she can do, what she should do in the game seemed to be lost. This is not to say that she exactly knew all the rules before, but there seemed to be total confusion as to what was going on, and what she should do, and she had been playing for about 5 years. Needless to say we quit basketball. She still plays softball which she loves the most, and hits the ball every time she comes to bat, but there is a lot of hesitation after she hits it before she runs, or if the ball is hit near her in her left field position. She has been playing softball since 1990, so it would seem that she would know by now to run immediately after hitting the ball. It is rare for her to smile now, (part of the lack of emotion) and when she does, I always make a big deal about it and tell her I love her smile. I think I forgot to mention in my first posting that I have found her crying several times in her room in the last few months. Who knows how often that happens when I am at work that I don't know about. She either can't or won't tell me why, and says nothing is wrong. I think she just doesn't know why. She used to watch sports on TV, but lost interest in that also. She listens to music in her room and flips a hard cover book back and forth for hours, from one hand to the other. Or when she is watching TV, she lays on the floor and plays her version of solitare with cards. I haven't done the extensive medical tests you had, except diabetes and thyroid, both normal, but she was tested by the school phycologist and three private phychiatrists, with no real conclusions. I don't know if this is helpful or not, but I just want back the daughter I had before 16.

Karren26 11-29-2008 10:27 AM

Re: It started at 16
Hi, I posted a reply earlier but I have no idea where it went. So, if shows up that is why there may be two.

My daughter is 13yrs old and when she was 12, May 2007 she got her first period. That summer she was very moody, figured it was teenage years starting. She has always been high functioning, outgoing, smart. Loved tv and music. She has not watched tv since March, she can not focus, to much going on in her head.

Well, long story short by the time Feb.this year came her pretend friends she created from High School Musical which Troy was her boyfriend and still is, took over. She was so inside her head she would not respond to us. She talked so articulate when she was in her room, the conversations were just like you and I. So, much drama she does not have these two way conversations with live people. She is controlling both sides of the conversation with the make believe.

Anyway, she stopped sleeping, obsessing over a baby doll and whispering to it all night. She still stays up 36 hours at times. Before this she would sleep 12 hours. She was always tired school mornings, I now wonder is she had been up all night and I did not know. They think it is bipolar, she laughs one minute, cries the next. Talks to her "friends" anywhere now. She is homebound and has been since March 1st. She is antisocial to all kids and most adults. Even when she speaks it is limited. Again, when she is in her room she talks and laughs from the minute she gets up until bed. Alot of anxiety now, she does rock when she is listening to her ipod she just started this constant rocking. She started Seasonique to stop the hormone flucuations, the week before her period she is really in her head and you can not get response from her, manic, hypersexual. Once I find her period has started, she is back to the way she was the week before. Puberty and hormones have alot to do with this increase in anxiety, psychosis. But, all the docs have no ideas how to treat her. All meds so far have made really bad hallucinations. :confused:

pts3308 12-01-2008 07:56 AM

Re: It started at 16
Hi, My daughter has now been on Abilify (2mg) for a little over 5 weeks. I notice a slight change in the hand motion and rocking, but not much else has changed. I don't think she talks any more, or that her relating to other people is any better. We go back to the phychiatrist Dec. 5th, and I think I will ask him to increase the dosage. We spent Thanksgiving out of town with family and got back Sunday evening. She immediately went in her room and started flipping the book back and forth, then came out in the den and sat down. I was unpacking, and I asked her if she wanted to watch a CD, and she said no, she wanted to go to her room. Don't know why she was sitting in the den. So she went back to her room, and a little while later I went in there and she was crying. She couldn't tell me why. As I have said, this change didn't occur until 5 years after her period started, so I don't think it is connected with puberty. She also started taking birth control pills at about 13 because her periods were so heavy they were impossible to manage. She has been on a generic of Seasonal for about 2-3 years. This weekend I received the newsletter from our local Down Syndrome parent group, and there are two upcoming meetings which I am planning on attending. One is on sleep apnea, and the articles mentions that if it is bad enough, it can cause phycotic episodes. My father and my brother-in-law have it and use the machines, and I have never heard about phycosis being a result of having it. When I go to my son's house, my daughter and I sleep in the same bed, and I dont' think she has it, but who knows. The other meeting is going to be about Autisim and says it is about 11% in Downs people. The phychiatrist mentioned Autism, but since none of this behavior was happening before 16, I don't see how it could be that. Autism is usually diagnosed at around 3 or 4 or even younger. He says maybe I didn't notice it. I was a stay at home mom, and only went to work when she was about 24so I believe I would have noticed all this if it had been happening. The article lists 18 things associated with autism, and says if someone has half of them, then it could be Autism. I can only find three that I think apply to my daughter.

Karren26 12-02-2008 04:01 AM

Re: It started at 16
Wow, she sounds alot like Hailey. I do see some improvement, not alot on day 6 of the Seasonique. Her sleep is not consistant, she feel asleep last night at 9 and I heard her on the baby monitor at 2:30 and she has been up since. They gave me an appt. tomorrow with the sleep doc that did her sleep study for apnea. Which she has mild apnea. She is to unstable now to use the machine. The Down Syndrome Specialist in Baltimore said just to wait until she is stable. He called me from Baltimore the other day and said the more he looked at the study she does not get REM sleep or not enough. Which in turn you get psychosis. Same as bad sleep apnea. Hailey slept with me in the beginning of this mess due to not know what she would do in the middle of the night. Then I heard her stop breathing every few breaths for a few seconds and then breath fine and then stop like she was holding her breath.
Does she seem like she is hallucinating? The last Psychiatrist we had told me that when she is quiet and her eyes bead back and forth or she turns her head like she is responding to something she is hallucinating. Now I know exactly when she is playing or hallucinating on most occasions.

So, once the BC pills level out we can see where she is, then figure out if it is bipolar, scizoeffective disorder or scizophrenia. And just mixed mood disorder like they originally said. She rapid cycles with fine one minute crying the next. Never has told me once why she is crying, when she gets gitty she can't stop, she just then says she can not help it. Since scizophrenia is something that happens after 20 or so with some of our kids, they do not want to rule the fact that kids in general get scizophrenia. I have no idea.
So frustrating, hang in there an hopefully the doctor at this weeks appointment can figure something out. Possibly a change in BC or up the dosage could help, hormones change all the time they told me, that is why they never really test them. She could have to much or not enough of another. Let me know what happens. Maybe we will help each other out in the end. :)

Kay3282 12-02-2008 02:45 PM

Re: It started at 16
I have DS Son who is 23 years old but I also voulenteer a Easter Seals, allot of then including my son have a pretend friend, I feel that they have a hard time communicating with others and that could be the reason. There pretend friend gives them a sense of security and there pretend friend understands them. It's hard for them to go threw life not understanding allot of things that go on , they become scared and insecure, The smallest thing can make them insecure, such as a new teacher or new kids in there class room, a new school can turn there world unside down and right side up, they don't like change nor do they adjust well to change. My son had a very difficult time during his High School years, part of it was hormones, not understanding what his body was going threw and he was tempermental at times, We had a hard time with our daughter during her teen years and she was not DS, so what dose that tell you. Hormonal years are tough. When I look at how my son was back then verse's what he is like now, there's a big difference, he is much more pleasant now. I hope things work our for all of you who posted, some of these DS stages are tough.

Karren26 12-03-2008 03:31 AM

Re: It started at 16
Hi Kay,
Thanks for your response. It is reassuring to have someone that has gotten to the other side of puberty. I would not mind a pretend friend, it gets to the point though that she prefers the pretend friends over everything and everyone else.

Again, the auditory hallucinations are a problem. But they generally are the friends talking to her. Very tangled up mess. I do feel some of it is that her mind it going a hundred miles an hour, which mine does all the time as well.
With the mind racing I believe some of the answering "what"? and making little comments are her over active mind at times. I read that scizophrenia patients will listen to headsets with ipods to drown out the auditory hallucinations and she still responds even with that. So her I believe some of that is her.

I am weaning her off the Effexor to see what the BC pills by themselves will do for her. She finally slept all night. Yeah. Because when she does not sleep neither do I. Off to the sleep specialist today. See what he says about this REM sleep issue. Have a great day all.

Kay3282 12-03-2008 06:55 AM

Re: It started at 16
Hi Karren,
I totally understand your daughter has other heath problems and I hope they get to the bottom of this soon. It's stressful and scary for you. The teen age years are tough, I'm glad we are past that, When ever you have a specail needs child you worry more, every decission you make for them is a hard, emotional and a times stressful. Pat yourself on your shoulder, your a good parent, many specail needs are not so lucky. My son is 23 years old, he is a fun, sweet guy, He's funny and yes he has a pretend friend. That one day he was in the kithchen talking to his pretend friend and getting himself a soda-He asked his pretend friend if he wanted a Pepsi? I almost died laughing, don't worry, he only poured himself one. I also understand the comment you made about not going to sleep until your daughter dose, I do the same with my son, who know what they are going to get into.

pts3308 12-03-2008 07:13 AM

Re: It started at 16
I hope this is going to the right person as a reply. My e-mail is titled, "It started at 16", but she is now 31, and seems to be getting worse. The crying is something relatively new as far as I know. I have only seen it in about the last two or three months. She was laid off from her job of over 3 years in July due to the restaurant closing, so I don't know if she is sad about that or what the reason is for it, as she can't tell me. I don't know if she has an imaginary friend, as her talking has always been silent. She never utters a word, just moves her mouth like she is carrying on a conversation, sometimes she throws her head back like she is laughing at something so funny, but no sound comes out. Once when I was helping her with her reading homework about a year ago, she was having a terrible time concentrating, and I said to her, "don't you wish that guy would stop talking, and she said, yes." It seems to really frustrate her. I have been reading about sleep apnea causing phychosis, and that is her diagnosis from about 14 years ago - phychosis undiagnosed. I never heard that before this week when I read it in our local parent support group newsletter. It does run in my family. So, now we are both crying, because I am so upset about this.

pts3308 12-03-2008 07:24 AM

Re: It started at 16
She has taken about 6 different kinds of BC over the years, but for the last 4 or so years has taken the kind that you only have a period every three months. The last time I went the pharmacy changed from one generic she had taken for about a year to a different generic. Who knows how they are different, but I think that is probably a small part if any of her problems. I think I will check into the sleep apnea as soon as I can, because until this week I never heard that it could cause phycosis, and that was her diagnosis 14 years ago - phycosis undiagnosed. But then, I have never thought she had a sleeping problem. I try to keep her on a schedule during the week in case she gets a new job, but on Saturday if I let her, she would sleep until noon, and she always goes right to sleep at night, so I never in a million years have thought of sleep apnea as a problem. I am definitely going to bring it up to the phychiatrist this Friday when we see him, and ask who I should see about it.

Karren26 12-05-2008 03:44 AM

Re: It started at 16
Yes, sleep apnea disturbs sleep to take a deep breath, cough, and gasp for air. They never fully wake though. Hailey in her sleep study has alot of limb movement, restless in an hours time. They count everything when the study is done. I forget right now how many movements it was like 13 or somewhere close per hour. This is not good either they said. The Down Syndrome Doc in Baltimore , Dr. Capone said this is know to happen in our kids. The sleep doc here saw Hailey Wed. he gave her Rozerom for sleep. It is not hypnotic, like Lunesta and the others, this one works more like melatonin in fixing sleep patterns. It is non addictive and can be take long term. Last night was second night. Yesterday she was mentally better and alert from sleeping better the first night on it. She is still asleep so I do not know how she is today. She still did her laughing and some talking but I do not know if this will ever go away. I believe the pretend friend is here to stay for now. Just have to figure out away so it is not 24/7.

She went to her homebound teacher at the school yesterday. We are trying to get her used to the new school. So she goes there twice a week from 3:30 to 4:30. That way the kids are gone. They had a school dance until 5. The classroom teacher took her into the gym, she wanted to go. They said she danced for a little bit then shut down and fixated on a piece of tape on the floor and stepped on it as she rocked back and forth for 15 min. she was right up in the middle of the crowd. I went in and she wanted to stay, so I figured it was her way of dealing and the exposer to the kids and all was good as long as she wanted to stay. It was heart breaking, because a year ago she would have been running around, laughing and dancing. The over stimulating got the best of her I guess. But, she dealt with it and kept her self there instead of running away which is great.

Hailey also does the mouth movement like she is talking, usually when I tell her to leave her friends in the car while we shop or tell her it is not time to play with her friends it is time to eat. I see her secretly talking or laughing.
It has taken me a very long time to find people on message boards that have these things going on. Glad I found all of you.

Suzann 01-16-2009 01:32 PM

Re: It started at 16
My daughter is twenty-seven years old. She functioned much as any child up until she started her periods, at eleven -then things changed..once outgoing, a chatterbox, she withdrew, little by little into her own world. My daughter now has her imaginary friends that she continuously talks to, sometimes non-stop. She interacts with few people, and has a very short attention span. She will laugh and talk, sometimes all night long. I have also noticed that lately when she is involved with her talking, she seems to tune everyone out...including me!
I had wondered so many times down through the years if other children did this. Now I know they do.

pts3308 01-19-2009 06:56 AM

Re: It started at 16
[QUOTE=Suzann;3851727]My daughter is twenty-seven years old. She functioned much as any child up until she started her periods, at eleven -then things changed..once outgoing, a chatterbox, she withdrew, little by little into her own world. My daughter now has her imaginary friends that she continuously talks to, sometimes non-stop. She interacts with few people, and has a very short attention span. She will laugh and talk, sometimes all night long. I have also noticed that lately when she is involved with her talking, she seems to tune everyone out...including me!
I had wondered so many times down through the years if other children did this. Now I know they do.[/QUOTE]
The latest thing I have checked into is the dual diagnosis of Autism and Down's. I had never heard of this until our local parent group put out an article and had a meeting about it. I have attended one meeting with our local Down's Syndrome Guild group. All the parent's had children under 10 except one man whose son was 21. All the parents of the younger children already had the dual diagnosis of Autism and Down's. On the list of characteristics for autism, I would say out of about 15 listed, my daughter would only have maybe three, but the withdrawal from reality, which is definitely a characteristic of autism from the beginning, is what happened to my daughter at 16. Before that she was as normal as you can imagine for a Down's child. Happy, outgoing, talked spontaneously, (and her speech, when she talks is very good), participated in lots of activities, did well in school, etc. Since this happened, she still goes to activities, but I wouldn't say she actually participates. She is just there, and things are happening around her, most of which she doesn't react to very much. I am taking her to a new phychiatrist next Monday as I was not happy at all with the first one. Our supposed 50 minute appointment lasted 10 minutes. He did suggest that maybe she was Austistic, but couldn't answer the question I asked him of ever hearing of someone developing Autism at 16. He said maybe I just didn't notice these strange symptoms for the first 16 years. How rediculous is that? I was a stay at home mom, I would have noticed!!! I even had many friends and relatives ask me what was going on with her when this first started at 16. If friends and relatives never noticed anything, nor did I, before 16, then I am pretty sure it isn't Autism, but I am checking out all avenues. I am still going to persue the sleep apnea thing, and hope to have the sleep test for her early next month.

Suzann 01-19-2009 08:36 AM

Re: It started at 16
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.

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