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December 7th, 2007


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starskye
09:24 am - Hello Everyone!
Hello everyone. I hope this community is still active, I know it's been a while since anyone posted anything. I can't believe I didn't think to come looking for a place like this sooner.
My story- (I will try to make this as short as possible, although that's going to be tough)
I had never even heard of Turner Syndrome until I met my fiance. He has three children from a previous marriage. Two girls and a boy. The middle girl, age 10, has turners. Discovered when she was 4 or 5. First sign of a problem was When she was an infant. she never slept, just cried constantly and ate constantly. My fiance said that he thought something was wrong with her right away. He thought her heart rate was too high for a baby. Anyway, for a few weeks he and his ex wife thought she was just colicky. Then they realized something more serious was going on so they brought her in for testing. They then discovered that she had a serious thyroid problem and a heart valve problem (something about having the same valve instead of two different ones) Basically, her thyroid was completely out of control and could go up or down in the blink of an eye. So for the first few years of her life, they were trying to deal with this thyroid problem, and basically, it was the worst thyroid problem anyone had ever seen. Eventually, when things just weren't getting any better, they started going to a special children's hospital in Philadelpia, where they did more extensive studies. That's when they found the turner syndrome. My fiance and his ex wife both had their genetics tested and from what they were told, the gene for turners was carried by his ex wife. My fiance's genes were fine. (I don't know much about the genetics aspect of it but they have one other daughter and one son who are healthy as can be. No one else in her family ever had it, either) So, then she started on growth hormone, weekly blood draws, and whatever else. So, as a result of the turner syndrome she has graves disease, hashimoto(sp?) something, a heart valve problem, stunted growth, and she will probably have kidney problems and non working ovaries. She is a little shorter and chubbier than most children her age, but she does not have a webbed neck. These things are not even the biggest problem though. The biggest problem is her behavior. She has serious behavioral problems that no one can figure out. First off, it appears she has something like adhd and bipolar disorder combined. At first they thought that this was the result of the thyroid activity (as in her being hyper when the thyroid was working overtime and her being sluggish when the thyroid was slower) but now they have pretty well stabilized the thyroid with medication and the behaviors persist, so they have ruled that out. She is a slow learner and needs special ed when it comes to math and reading. She cannot focus on one thing for too long. But worst of all are the temper tantrums. She has them when she does not get her way. For example, if you are in a store and she asks you to buy her something and you say no, she does the whole throwing herself around like a 2 or 3 year old would do. There are a slew of other behaviors but to put it bluntly she has what looks like a severe case of bipolar and is on a bunch of medication for that, as well as the synthroid and injections. She goes to children's hopsital at least weekly for visits from everyone from the heart specialist to the endocrinologist to the psychiatrist. Her parents and the doctors have been trying in vain to help her for years. Very recently, her bahavior has become so out of control that her mother had to have her admitted to a children's psych hospital where they basically took her off of all her psych meds and slowly adjusted them and studied her and the only conclusion they came to is that the behaviors are not out of her control, as we all thought they were. The doctors there say that she must be acting this way on purpose, as there is no outstanding clinical reason why she can't control her temper to a reasonable degree. When she was at the clinic she was sweet as pie and they were ready to discharge her early. So then they started having these therapists coming to her house to observe her interacting with her mother and siblings, and when they were there she was fine. She behaves better when she is at our house than she does when she is at her mother's house, but I think that's because she's only with us every other weekend, and when she's here, we do a pretty good job of keeping her entertained because it's the weekend. Basically, to put it bluntly, between her mother, her father, and the various doctors and hospitals, THEY HAVE TRIED EVERYTHING and nothing has been successful as far as her behavioral problems. I suppose the only thing they could do is medicate her into submission, but obviously that is not the kind of thing we're after. While she was at this clinic they mentioned the thought of her having some type of non verbal learning disability which means that she cannot read tone and inflection in voices, and that basically, when you tell her no, she cannot have something, she understands that as "no one loves me" and that's why she has fits. And now her mother wants to take her all the way to vermont to meet this one and only doctor who deals with this...if you ask me, all this new stuff seems like doctors just grasping at straws here. My feeling is that maybe she has some sort of deep rooted anger at the fact that she has turners and is "different" from other children. I mean, these doctors test her for everything under the sun and moon and back, and I understand and admire that but really I think it's more simple. So I guess at the end of this long winded "essay" I am just wondering if maybe anyone can shed some light? I think her behaviors come from nothing more than her maybe just feeling different from other kids and her maybe having some self esteem issues and whatnot. You would think with all the psychotherapy she's been through that they would have covered that base but it seems to me that the more everyone digs deeper in to her and medicates her with this or that that it just makes things worse. I am fearful that one or both of her parents (not to mention her brother and sister) are on the verge of a nervous breakdown and they basically just feel hopeless at this point. In reading these entries I see mentions of a camp for girls with turner syndrome. What was that about? did that help you come to terms with your condition? was it helpful meeting other people with turners? I would love to hear from anyone who has turners. All I want is the best for my fiance's daughter and I hate to see her in and out of psych units as I'm sure it's tough enough having to deal with the turners alone. (Although there was really no choice but to send her there this past time, as she was a threat to herself and her siblings and her mother was only doing what she felt was best for her daughter and other kids.)
Maybe the camp might be a positive resource for her in the future? Maybe she's having trouble with self esteem? Again, I thought this would have been covered already as the entire family and added on family has been in counseling over numerous issues ranging from her health to the divorce. Anyone kind of help at all would be appreciated as we all just want her to grow into a healthy, well adjusted adult :)

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[User Picture]
From:starskye
Date:December 8th, 2007 02:34 am (UTC)
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Thank you for everything! I had no idea that this behavior problem is common! Just hearing that made me feel 100% better. And the way you describe your daughter fits my step daughter to a tee! She does not get the brush offs or body cues either. However, she is not shy, will talk to absolutely anyone, and she is totally clueless when it comes to things that other kids pick on each other about (physical traits, who is wearing cool sneakers and who is not, etc.) she talks to kids the same way she talks to adults. She will play with the two and three year olds, but at the same time she will have just as much fun talking to the elderly couple sitting on the bench.
You are lucky that you can homeschool. Unfortunately her mom cannot do that. She is in special programs at school though, but who knows how much that really helps, as they probably just group all the kids with learning problems together, even though they each may have different issues. I will tell her mom about the Turner Syndrome Society. I'm not sure if she's ever gotten ahold of them but I do know that she has many many doctors at the childrens hospital working with her. And she's recently been in contact with a specialist who deals with this non verbal learning disorder, so hopefully that will be beneficial. I am just so surprised to hear that it goes hand in hand with turners. It seems to me that what we need is just more education about turners and this non verbal learning disorder. There have been so many different things that these doctors have thought, though that it's like you don't know what to focus on, but since you say that nearly all turners girls and women have this to a degree then it seems we should focus energy there. I've always just assumed that the doctors she was working with were turners specialists, but maybe not. I try not to question things, because since her mom is the primary caretaker, we just sort of trust her judgement in doctors and we just sort of go along with what she reccommends because she's the one who goes to the majority of the appointments. We just sort of try to be as helpful as possible, but maybe it's worth mentioning that she should find out just how much these doctors actually know about turner syndrome. At any rate, Thank you very much. as a side note, I don't know what happened when they were told about the genetic aspect of it. Maybe it was just the way my fiance explained it to me. I think the point he was trying to get across was that there is no particular problem with his DNA, as in, if we ever had a child, he was not a known carrier for anything specific. (Although we will not have children of our own for a long while, if ever.) And for that matter, I've never had MY genes tested so who knows? I may have interpreted him wrong at that time, who knows.
[User Picture]
From:melw0103
Date:December 8th, 2007 03:26 am (UTC)
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We joke that my daughter has never met a stranger. She talks and talks to everyone!! It is very nice to see her play with everyone, but at the same time it makes me sad sometimes to see her try and play with all the kids and get brushed off. It normally doesn't "click" with her that they don't want to play till they come out and say "go away". Then she is heartbroken :(
Gluten is a huge trigger in kids, especially those that have "something" else going on. I have quite a few friends that have gone gluten-free and we may have to eventually with my son who may be on the aspergers spectrum. The changes that happen when they get something with gluten in it are very visible and very quick. It's like indigestion in the brain. The gluten (and sometimes casein aka milk) triggers something in the body that changes their whole behavior.
Most people, even doctors know very little about Turner's. Especially since there are so many ways that it can manifest in a girl. My daughter has no physical characteristics at all, except being on the short side, although she is growing wonderfully with growth hormone. No heart or kidney problems either, but certainly the NLD and math problems.
[User Picture]
From:starskye
Date:December 9th, 2007 02:52 am (UTC)
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We joke that my daughter has never met a stranger. She talks and talks to everyone!! It is very nice to see her play with everyone, but at the same time it makes me sad sometimes to see her try and play with all the kids and get brushed off. It normally doesn't "click" with her that they don't want to play till they come out and say "go away". Then she is heartbroken
This describes her to a tee! In fact, she actually went over to a girl at school's house who "does not like her". The girl never came out a told her she didn't like her, but she obviously did not get the "brushing off" that must have happened at school. So, she went over there looking to play and the girl told her off and so my fiance's daughter just sort of broke down on the sidewalk and started bawling and the girl's mother had to call her mother to come and get her, and had to explain that her daughter does not like her.
She has a habit too, of getting too close to people she barely knows. One time we were out somewhere, and she met a little boy and they played for a little while. Then she gave him a big hug and a kiss, and the little boy was like "ewww, you don't have to HUG me" and she was hurt. It's like polar opposites. She can be EXTREMELY sweet (almost too much) but then when she's having her tantrums she is anything but. The sweetness shines through, though. She's sweet more often than she acts up. I'm sure that the tantrums will subside once she can understand her emotions. She gets a little better with each year she gets older, but she's not cured of them yet.
She does not have many outward physical problems, either. I looked at her more closely today (the kids are here this weekend) and I still don't think she has a webbed neck. In looking carefully I can see that she has the bowed elbows I read about, but not the broad chest. She's also a little shorter than most ten year olds but nothing that would make anyone look twice. She's a little chubby, but nothing out of the ordinary. According to the doctors, the growth hormone is working well and she's growing fine :)
She has the heart problem, but the only way it affects her is that before she goes to the dentist she must take an antibiotic. Other then that it does not manifest. No kidney problems, but she does have the graves disease (thyroid).

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