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
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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.
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).
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.
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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.
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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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