December 7th, 2007
|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 :)
Wow, you have a lot on your plate. I'll see if I can't give you a few bits of advice. First off, whoever told the parents that there was a "carrier" for Turner's is absolutely wrong. Turner's is a random mutation that happens in the first few hours after conception. There is no carrier, no other factors that have been found, just a random thing that happens. I tell people that one of my daughter's X's got lost and went to Neverland :).
Second, non-verbal learning disorder is very real and very, very common in Turner's girls, both kids and adults. In fact out of the dozens of kids and women that we have met and talked to, all have some varying degree of it. Some it is barely noticible due to lots of extra work/therapy on their part and some is very severe. My daughter is somewhere in the middle and she's 6. I see it a lot when she is playing on the playground, she doesn't get "brush-off's" from other kids or any of the other non-verbal a.k.a "body" cues that are there. It does have some good points to it though, she is virtually color/gender/differences blind when it comes to playing with kids. She has no clue about people shunning others, she plays with almost everyone the same regardless of how they look or act (except when they are physically violent) towards her. We homeschool, so I have no idea how she would act in a public school environment, but I have a feeling that it would be very difficult for her, especially as she gets closer to puberty and all the drama amongst girls.
You can get some idea of how it would be by closing your eyes and attempting to have a conversation with someone who uses their hands and body language alot. Or it's like texting/online chatting with someone without using any emoticons. It is very hard to get the whole meaning and emotions behind the words. With our daughter we do a lot of role playing here at our house. We also talk about her feelings, how other people might be feeling and we do a lot of people watching. Does that little boy look happy or sad? Or is he maybe frustrated with something etc... It works and she is doing much better with it. We are very lucky to have an awesome homeschool group here where quite a few of the kids have their own "quirks" :)
For our family and lifestyle, medications are very rarely used/taken. We do growth hormones (after weeks of research!) because it is replacing something that she "should" be producing.
Okay, after all that, my advice would be to find a doctor in your area who knows Turner's and has other patients with it. I am lucky enough to be in a major city with a incredible children's hospital that I think is 3rd in the nation right now. There are plenty of doctors here who know tons about Turners. You also could get in contact with the Turner Syndrome Society. They can help you out and put you in touch with other parents near you.
I hope this has helped a bit, feel free to ask more!
I'd certainly applaud you for not wanting to medicate her into submission. That's all too common these days, with any behavior problem. Just to preface my remarks, though since I had the last post you may have already read it, I'm a 30 year old male whose only exposure to Turner's has been through a close friend who has it. But since the doctors feel there's no medical reason for her behavior, I'll chime in on the non-medical side of behavior.
It looks like mel above has given you some very good advice on things. Non-verbal learning disorder as she described could certainly lead to not interpreting things properly. Let me ask a few questions on the other part of things. How do her parents react when she throws such tantrums? Does she gain a benefit from it? Are they consistent in their response to it? Do they give in? Do they stick to their guns when they've said no and she reacts badly, or give in to make it stop?
Children, being humans, are naturally self-centered and want their own way. If they find a method, any method, that gets them their own way, they'll use it. And they don't like NOT getting their own way. I've never met a child who liked being told no. Or an adult, for that matter. I hesitate to try to tell someone from afar what specific steps to take to accomplish it. But the perspective to approach it from is how to make sure she genuinely understands what's acceptable, and what's not acceptable, and then enforce those limits by not responding with favorable outcomes to unacceptable behavior.
I think mel has given some good advice in talking with her and learning from her answers what she does and doesn't understand about social interaction. How she approaches various situations, and how she thinks. try not to ask leading questions, in doing it. Rather than asking "Do you feel like X...", asking "What do you think when..." can be good. If she can be good with everyone BUT her family, though, she sounds like a number of kids I've dealt with, who with strangers weren't as sure what they could get away with, so they were more cautious in finding where the lines were.
Side note. You and your fiance need to discuss and come to agreement on how you're going to handle her, and back each other up. Children will play one parent against the other in an instant if they have the chance.
Another side question. Assuming there's a divorce involved with their being an ex-wife, has anyone dealt with the question of whether the girl has internally blamed herself for the breakup? Children from divorced homes often tend to ask themselves if they're the source of the strain that broke the marriage. Even moreso if they've ever overheard an argument regarding them.
Speaking personally on behavior, I was a very stubborn child and required a lot of spankings to figure out that consequences of stubborness were not that great. I'm not saying every child needs spankings, by any means, but rather leading into the approach my dad used in correcting my behavior. We had the benefit of a two-story house, so when I was rebellious my father would send me to my room. This gave him time in walking up the steps to be sure he had any anger out of his system, and was punishing for correction rather than retribution. After the spanking, he'd sit and talk with me (which I sometimes dreaded worse than the spanking ;>), asking me what I'd done wrong and why I'd been punished, and being sure I understood that he loved me and was punishing me because he wanted me to grow up to be a good man that did the right thing. Also, being sure I understood what rules I'd broken, and how to behave in future. I don't think I've ever had a doubt that my father loved me, and I think a big part of that was the time he took to explain what I'd done wrong and why I was being punished and that he did so out of love for me, to help me to be a beter person. And the one time I can recall that I got a spanking I didn't deserve, when my father learned that I hadn't deserved it, he came back and apologized. For me, at least, understanding what the rules were and why they existed was (and still is) important.
Wrote so much the comment length got overrun:
Which brings us back to what mel said about non-verbal skills. The first step may be determining whether she does understand these things, and then holding her accountable for what she does understand and teaching her to understand the rest. Like all things involving children, it requires a near-endless supply of patience and an understanding that correcting the behavior is done not to ease your life (though it does that to), but for the child's benefit. Children who don't learn to behave well grow up to be adults who dont' behave well and give themselves a much more unhappy and lonely life than they could have had. Thinking through as yourselves and approaching correcting the behavior as an action of loving her enough to do what it takes to teach her to live right is important to your motivation and to her response.
Thank you very much for replying:)
to answer your questions-
Her parents, me and her soon to be stepdad included, have discussions on a regular basis just to make sure we are all on the same page. Because not only should we back each other up in the household, but the two households should indeed have the same rules. Kids try to get one up on the easier going parent, but we don't allow that to happen. What's a rule in one household is a rule in the other. When she acts up, we are very consistent, or try to be as much as possible. We do not give in just to make it easier on ourselves. We've had to literally carry/drag her out of places when she's screaming and having a fit, and as much as it is embaressing, if we give in, that would only encourage her to do it more, because she would know she could get her way. So, no we do not give in. Sometimes though, you have no choice because the other two kids are there. If we are, say, going to a movie and she behaves badly, we can't just not go, because that's not fair on the other two, so if we have to "give in" a little bit, we usually "continue" the discipline later by making her clean something, or write out what she did wrong. (we will write out the sentence "It was wrong to...next time I should...instead) There are a few different things we do to try to redirect her from having fits. Sometimes they work, sometimes they do not, but both families use the same methods. All three children know that they can't play us against each other, or play one family against the other. We don't have any issues with that.
You hit the nail on the head when you said does she blame herself for the divorce. I don't think she blames herself, but I do think she blames her mother for her father leaving. She seems to have a lot of anger toward her mother and not as much toward us. This has been gone over a thousand times in therapy sessions, but I guess she just does not understand the concept yet. In truth, her mom and dad had a very civil divorce with very little arguing, and never in front of the kids. I know all the specifics, but I guess those aren't as important. On the whole though, mom and dad get along well for the sake of the children. In fact me, her dad, her mom, and her mom's fiance all get along fairly well. I mean, we're not like buddy buddy, but we are all civil enough to have conversations together and sit through counseling together. So as far as divorces go, this one's pretty easy. My fiance moved out, but they had agreed together to split up. No one kicked anyone out, but I think she thinks her mom is responsible for her dad leaving. So some of this is normal kid stuff, but with her learning disability it must be a lot harder to grasp. (The other two kids do not have any anger at any parent)
Thank you so much for replying, this is most helpful!
Yep, Mel's absolutely right, it's a completely random event that results from the cells which form sperm and eggs dividing incorrectly (so in fact it happens long before conception)
Most turners kids also present with behavioural issues similar to a high functioning Aspergers case. This means that they can have a lot of trouble with empathy and interpreting subtle social cues. She might benefit from some of the strategies for handling that kind of issue (Mel suggests some good ideas up there! You basically have to train her to recognise and respond to social situations.
I was fortunate not to be too heavily affected by this at all (but I am on the other hand only a mosaic case) The main behavioural issues I struggled with were organisation (I suspect most Turners girls have that issue). (however, I do have changing physical habits (rubbing my hands certain ways being the prominent one.)
Have you looked at dietary issues at all? Working with autistic and aspergic kids I find that diet actually has a profound effect on behaviour overall, so having her tested for any intolerance might be worthwhile.
If you have any more questions about the medical aspects of turners please don't hesitate to ask!
Yes, they did have her diet looked at. There was also a dietitian working with her consistently for a while there. The thing they seemed focused on was gluten. She is limited with eating sweets and she eats organic cereal and special milk. She also takes a variety of supplements, including fish oil. I'm not sure the whole diet thing is completely figured out, but everyone is aware of the correlation. Since she's only with us every other weekend, her mom either supplies us with any special food or tells us what to get. In general though, we are very healthy eaters. The only junk food we ever have around is pizza occasionally. I guess her diet is still a work in progress but she definately does not eat much junk in either household. Thank You!
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.
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.
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).
I think my comment to you was posted below on accident :)