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December 7th, 2007

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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 :)

(12 comments | Leave a comment)


[User Picture]
Date:December 7th, 2007 08:31 pm (UTC)
I hadn't even thought about the divorce aspect. Her feelings, however strange they may seem to you, are very real to her. I have a friend that has a Turner's girl. When her daughter was 10 her daughter attempted suicide, partially because of a very nasty divorce where the dad was very horrible, up to and including trying to prevent 2 of her surgeries. She is a wonderful 13 year old now and doing so much better!
There are 2 books that I recommend to any parents having problems with kids, even those that don't. "How to Talk to your Kids so they'll Listen and Listen so they will Talk" and "Sibling Rivalry" They are awesome, awesome books with tons of ideas. They can be hard to read sometimes, as they tend to show us parents some of the things that we do, whether we mean to or not, that cause our children to act the way they do.
[User Picture]
Date:December 8th, 2007 02:50 am (UTC)
I will definately pick up those books, thanks!

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