Turner Syndrome

[Bobby62]

My granddaughter doesn't take anything for her thyroid at the present time, but maybe later.
As for the behavior--it can be difficult. Most of these girls have very high IQs, but very poor social skills. For instance, if she asks a question she will keep asking it continuously until you answer--there's no "wait for the answer time". If she is doing something that is annoying (kicking the chair leg,etc), you can't say "stop that" you have to say " stop kicking the chair leg over and over". My granddaughter is a very sweet and polite girl. It's not like she has no clue what is going on--her brain just doesn't recognize facial or body language. She also can't always tell by tone of voice what you mean-you can't tease her, she takes everything literally. I imagine for a 17 year old that dealing with some of these behaviors would get on your nerves and I don't think most would have the maturity to recognize it as something the child doesn't do on purpose. The spacial difficulties are a problem in that they can't always gauge the distance to the table with a cup or glass so you have a lot of spills. If you teach them to touch the table with the other hand before putting anything down, they don't spill. You have to do a lot of research and trial and error. Once you figure out the limitations you can find strategies to deal with them. I just wonder if this family was aware of the resources available to help them get to this point. I don't mean to say that they are uneducated, just maybe uninformed.

It is a shame that this family did not have access to you to help inform them and walk them through some of the difficult times.

 

[cocoamom]

I posted this on the main thread a few days ago before Haleigh got her own forum:

http://kidshealth.org/teen/diseases_conditions/genetic/turner.html

 

[flnana]

Thank you for sharing, Flnana. I was very curious about this syndrome and it's always best to learn from someone familiar with it first-hand. Your granddaughter is blessed to have you, and so are we.

Thank you for your very informative posts. Your granddaughter is so lucky to have you at her side. :blowkiss:

It is a shame that this family did not have access to you to help inform them and walk them through some of the difficult times.

Thank you for the nice thoughts. Actually, we feel very lucky and blessed to have her. She had heart surgery when she was just a few hours old and only had a 5% chance of surviving the surgery. She will have surgery every few years until about 16 years old. What is really amazing is that they were not able to "fix" it, just patch it up--and here she is 7 years later going strong. Yes, we have been blessed beyond words!

 

[donnam]

My 26 yo daughter is also a turner's girl.

 

[Egoslayer]

flnana - Thank you for your input. It definitely correlates with everything I've scanned online. The social issues are very similar to those that have NLD or aspergers (wikipedia is saying NLD is common in women with Turner's). NLD is basically what you described - not understanding emotions unless you explain it, not understanding abstract concepts (ie. "Stop that.") and sometimes metaphors.

That being said, I don't think Misty got frustrated with Haleigh. She was at an age where acting up is pretty normal. According to the mom, the kids liked Misty.

 

[bshmommy]

I didnt read all the way through this, so I don't know if it was already mentioned...but it is not common for females with Turner's to have any cognitive problems or delays. They are as functional as the rest of the population without the condition.

 

[kellync]

My 7 year old granddaughter has TS. In the custody transcript it states that she had a cardiologist and an endocrinologist. That probably means that she has a heart condition called aortic stenosis and that she is taking growth hormones. There was also a problem with the kidneys, but it didn't state exactly what. All of this is common to TS. The thing that worries me about this is that TS girls have poor spacial perception (some can't get a driver's license because of it) and they do not recognize nonverbal cues (don't process emotions in other people--you have to specifically tell them you are mad, scared, etc) so she might not pick up on weird behavior in someone she knows-- she would not be frightened to go with them and stay with them--unless they hurt her or said they would hurt her. Lack of spacial perception makes me worry that she could have fallen into the river or something like that because she would not be as aware as most people of her surroundings and the boundaries. TS girls can't have children--they do not have periods-and they do not develop breasts unless they begin female hormones at the age peers go through puberty. She does not appear to have the webbing of fingers or on her neck. Her TS could be a mosaic form (not all chromosomes are missing #46) or pure TS (all chromosomes are missing #46). I hope this was not too much info. Didn't mean to write a book, just have lived with it since my daughter was 4 months pregnant and the ultrasound guy detected the heart problem.

Thank You for the first hand insight, what a special girl your Granddaughter is. It is nice to know she has people who not only understand her but obviously take the time to educate themselves, and care deeply. My heart goes out to you. Websluths is a great place for support if you ever feel that you needed it, in any form. ((((hug))))--Kelly

 

[LCoastMom]

When my daughter was young we knew a little girl with Turners. At 5 she just seemed a little young for her age, by 7 there was a noticeable difference between her and the other children and this continued her whole life.

She was a very sweet little girl, Haleigh actually reminds me a lot of her at this age.

When dealing with a group of kids it could be really difficult to include her because she was very disruptive, very short attention span and very hyper. I'm assuming ADHD. The sad thing is her mother is a special ED teacher. She could have helped so much by explaining the syndrome and how to support her, she never did. She always claimed she was just going to remain short statured and have some hormonal problems.

I can very easily see how a 17 y.o. is not equipped to deal with a child with these issues.

 

[Tracey276]

My granddaughter doesn't take anything for her thyroid at the present time, but maybe later.
As for the behavior--it can be difficult. Most of these girls have very high IQs, but very poor social skills. For instance, if she asks a question she will keep asking it continuously until you answer--there's no "wait for the answer time". If she is doing something that is annoying (kicking the chair leg,etc), you can't say "stop that" you have to say " stop kicking the chair leg over and over". My granddaughter is a very sweet and polite girl. It's not like she has no clue what is going on--her brain just doesn't recognize facial or body language. She also can't always tell by tone of voice what you mean-you can't tease her, she takes everything literally. I imagine for a 17 year old that dealing with some of these behaviors would get on your nerves and I don't think most would have the maturity to recognize it as something the child doesn't do on purpose. The spacial difficulties are a problem in that they can't always gauge the distance to the table with a cup or glass so you have a lot of spills. If you teach them to touch the table with the other hand before putting anything down, they don't spill. You have to do a lot of research and trial and error. Once you figure out the limitations you can find strategies to deal with them. I just wonder if this family was aware of the resources available to help them get to this point. I don't mean to say that they are uneducated, just maybe uninformed.

Thank you so much for sharing this information. I was going to search it and find out what it was. However, hearing it from someone who has experience with someone in their family, makes it much more informative than a bunch of medical mumbo jumbo, that's sometimes hard to imagine how it manifests itself.

I just have one question because of my absolute ignorance on this syndrome. I mean NO disrespect AT ALL. I know in my head what I want to ask but I always worry when texting or emailing, I don't say it right or tone comes across weird. I was wondering if in each case being different with this syndrome, are the ways in which it manifests itself different in each person. Could some of the issues your GD has, be ones that maybe another person wouldn't or vice versa? How do the Dr's differentiate the symptoms associated to the disease or just personality? I'm wondering can it be that say, one person with it, can seem to be a difficult child or rebellious, but then another one could not have those traits or symptoms, but different ones? or is it in all those with this syndrome?

I only ask because I'm wondering if it's possible Haleigh could have had these symptoms manifest this way, and the dad and or Misti did, in fact, have a short fuse dealing with her behavior? If it was constant or even in spurts and something happened? Just curious and hoping you could shed some light on this part. Thanks

 

[Kat]

There was a picture shown last night of Haleigh with a black eye. The school reports that it happened there.

Don't girls with this syndrome have spatial issues? Wouldn't that make them more prone to injury from falling? Just curious.

 

[LCoastMom]

There was a picture shown last night of Haleigh with a black eye. The school reports that it happened there.

Don't girls with this syndrome have spatial issues? Wouldn't that make them more prone to injury from falling? Just curious.

Yes many do. If the school said it happened there, is there any reason to to think they gave false information? Usually not...

 

[Kat]

Yes many do. If the school said it happened there, is there any reason to to think they gave false information? Usually not...

TY missmybaby. I was fairly sure when I posted the question that that was probably how Haleigh had been injured but just wanted to double check to make sure I understood the syndrome enough to come to that conclusion.

 

[flnana]

Thank you so much for sharing this information. I was going to search it and find out what it was. However, hearing it from someone who has experience with someone in their family, makes it much more informative than a bunch of medical mumbo jumbo, that's sometimes hard to imagine how it manifests itself.

I just have one question because of my absolute ignorance on this syndrome. I mean NO disrespect AT ALL. I know in my head what I want to ask but I always worry when texting or emailing, I don't say it right or tone comes across weird. I was wondering if in each case being different with this syndrome, are the ways in which it manifests itself different in each person. Could some of the issues your GD has, be ones that maybe another person wouldn't or vice versa? How do the Dr's differentiate the symptoms associated to the disease or just personality? I'm wondering can it be that say, one person with it, can seem to be a difficult child or rebellious, but then another one could not have those traits or symptoms, but different ones? or is it in all those with this syndrome?

I only ask because I'm wondering if it's possible Haleigh could have had these symptoms manifest this way, and the dad and or Misti did, in fact, have a short fuse dealing with her behavior? If it was constant or even in spurts and something happened? Just curious and hoping you could shed some light on this part. Thanks

You are correct that not all girls have the same symptoms. TS girls are missing the 46th chromosome. Not all TS girls are missing the chromosome on all cells. My gd is a 45X which means that she doesn't have the 46th chromosome anyplace. So, there are degrees. Even with straight 45X my gd only has some of the symptoms. I saw that one of Hayleigh's relatives said that her toes and fingers were chubbier than most kid's. That is a symptom that my gd doesn't have. If you go to conferences and meet these girls, they are just like any other little girl. They are usually very bright children. The only obvious outward sign is if they have have webbing of the neck or fingers. My gd has no cartillige (sp?) in her ears. They have personalities just the same as any other child. If they misbehave, it isn't always because of the TS--sometimes they are just misbehaving because they are children! My gd can be very stubborn--that is not TS, that is her personality (and being an only child for 6 years!). She can also be very compassionate and sweet. But, if Hayleigh has a serious problem with the nonverbal understanding it could get frustrating. Knowing something and being able to get over yourself and be mature enough to deal with it don't always go hand in hand. I haven't seen a lot of patience in this family (of course, I have no idea how I'd act if my child was missing, so who am I to judge)--but just the way RC talks to other people leads me to believe that he was a "no nonsense" kind of guy. Sort of "if I say it, you'd better do it." So, your guess is as good as mine on that one. I just really, really hope that is not what happened.

 

[Fastpitch Mom]

I have a couple of questions. Do we know when Haleigh was diagnosed with Turners? Also, when do they start hormone therapy? Do they have to take shots for this?

 

[Tichad3]

I have been doing a little research on Turner's Syndrome this morning. I have found a lot of differing treatments for it.

I am wondering if some of Ron's drug charges have stemmed from someone calling LE with info that he had drugs on him and he was charged, later dropping the charges when he proved it was Haleigh's medication and he was the custodial parent, therefore allowed to have them in his possession?

I wasn't sure where to put this question, so I am putting it in 2 different places.

 

[flnana]

I have a couple of questions. Do we know when Haleigh was diagnosed with Turners? Also, when do they start hormone therapy? Do they have to take shots for this?

I have been doing a little research on Turner's Syndrome this morning. I have found a lot of differing treatments for it.

I am wondering if some of Ron's drug charges have stemmed from someone calling LE with info that he had drugs on him and he was charged, later dropping the charges when he proved it was Haleigh's medication and he was the custodial parent, therefore allowed to have them in his possession?

I wasn't sure where to put this question, so I am putting it in 2 different places.

My GD was diagnosed when my daughter was 4 months pregnant. I know that in the court documents from 2005 Haleigh was already diagnosed, but it doesn't say how long they had known. The shots are given daily and begin about 2 to 3 years of age.
I don't know of any medications for TS that would be mistaken for illegal drugs. The hormones have to be refrigerated, so you wouldn't just carry them around with you. If there was heart medication or kidney medication it would probably be marked on the bottle as belonging to his daughter. I suppose it is possible, but with all the other drugs listed in the arrest documents, I tend to lean towards something other than Haleigh's medication.

 

[Tichad3]

My GD was diagnosed when my daughter was 4 months pregnant. I know that in the court documents from 2005 Haleigh was already diagnosed, but it doesn't say how long they had known. The shots are given daily and begin about 2 to 3 years of age.
I don't know of any medications for TS that would be mistaken for illegal drugs. The hormones have to be refrigerated, so you wouldn't just carry them around with you. If there was heart medication or kidney medication it would probably be marked on the bottle as belonging to his daughter. I suppose it is possible, but with all the other drugs listed in the arrest documents, I tend to lean towards something other than Haleigh's medication.

Thanks for the info. It was just something going through my head and it wouldn't stop until I knew it all. lol

 

[passionflower]

There was a picture shown last night of Haleigh with a black eye. The school reports that it happened there.

Don't girls with this syndrome have spatial issues? Wouldn't that make them more prone to injury from falling? Just curious.

I would think so, walking into things, falling up or down steps, over toys, not catching balls. It could be, no rush to judgement until I see more like hand and finger bruises along with it. IMO

 

[LCoastMom]

TY missmybaby. I was fairly sure when I posted the question that that was probably how Haleigh had been injured but just wanted to double check to make sure I understood the syndrome enough to come to that conclusion.

Sorry if I came across as being snarky, your question was totally appropriate and I didn't mean to, but my reply could have been worded much better. When I was looking here to check for follow up I had a few words with myself and I'll be more careful in the future. :blowkiss:

 

[passionflower]

I was just wondering if Turner's Syndrome had anything to do with the care and reasoning that daddy's girl was in the way of RC/MC life style.:furious:

Haleigh was on growth horomones IIRC.
Haleigh had asthma.
Turner children sometimes have other medical problems (heart,fertility)
Turner children are more fragile.
They can have learning disabilities.
Lots of doctor trips.
May have difficulty with motor coordination, visual spatial intelligence and social interaction.

Was Haleigh a bit to much to handle for RC and MC???
Could the family actually be relieved that she is gone?
Was time, money and having a sick child just to much for
TN, GGS, RC, MC?????
Was Haleigh having more and ore temper tantrums/meltdowns?


http://www.turner-syndrome.com/


http://www.turner-syndrome.com/articles/living-with-turner-syndrome/index.php