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Turner Syndrome
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Due to high demand- we have closed this board for new postings. Instead we offer a searchable (easier to use) Yahoo Listserv for messages. You need a Yahoo Id and apply for membership to the Turner Syndrome Listserv. (This to protect families and keep out "junk"). To find our TS Yahoo Listserv- go to:
http://health.groups.yahoo.com/group/TurnerSyndromeChat/?yguid=316385676
Feel free to read the past posts so that you have a small idea of how the larger Listserv can help you.
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On Jun 29 2008, Gretta Wrote:
We are moms to the greatest girls; aren't we! I am truly enjoying meeting and communicating with so many new parents! Thanks to all! The listserv at yahoo is going great! New members all the time! So many new topics! I just closed a poll about telling your daughters about TS, and started another one! PLEASE GO LOOK AT THE LISTSERV AT YAHOO mentioned above! We really are taking off with it! I am hoping to expand it (after I get a good grip on this one) to have a site for teens as teen years are so strange, and I think this is when some of our girls need to just chat with each other. :) I want EVERYONE to feel that they can contact me with any ideas regarding support groups, chats....WHATEVER!
My Elena is doing WONDERFUL on her gh so far, outside of me leaving it when I moved! AGH! I've got to get used to packing it! She is dealing with an ear infection, teething, and pink eye.....but we will survive it and get through!
Please, go check out the poll on the listserv! Thanks! Gretta
On Jun 11 2008, Becki Wrote:
Gretta,
I am so glad to hear that you are trying get more awareness out for people. I had never heard of turner syndrome until our doctor said that she was going to test our daughter for it. And even then I didn't understand what it was. After she was diagnosed, it seemed like when I got online to get more information there was a lot of information, but I would read one thing and then another website would say the opposite. Especially as far as social problems. My daughter has a mixed karotype and has a mix of X and XY chromosomes. Although she is completely a girl, we were very concerned on what this would mean. We did have her ovaries removed so they would not develop into testes. Of all of the information I came across, there was nothing about her karotype. If anyone else has this or more info about this karotype, I would love to get more information.
About getting your insurance to pay, the only advice I have is to read your entire insurance policy so that you know what your rights are concerning the coverage and keep calling them. When we were trying to get our insurance to cover, I called them every other day wanting an update and telling them the info I knew as far as coverage. When they tried to deny my daughter, I told them that according to the policy, it should be covered. After a few weeks of calling and demanding coverage, the medication was covered. Good luck!
On Jun 10 2008, anonymous Wrote:
Lisa--thanks very much for your reply. I'm now looking more closely at the NLD angle.
Kris--hang in there. The challenges that come with TS are unique in that many of the problems you run into aren't conveniently obvious. It's a bummer your pcp was a bit late in diagnosing your daughter, but at least you're on track now, and there's a terrific support network of parents like us to talk to.
My daughter goes into surgery tomorrow for her 3rd set of ear tubes. Her hearing is pretty bad, because of fluid in one side (hence the tube), and a hole in the other. This has been a real problem, particularly in the classroom. We can't repair her punctured eardrum, because her jugular vein decided to be very close to her ear canal on that side.
On a bright note, she has flourished academically, and will be in 3(!) honors classes in middle school--woohoo! I've seen nothing to suggest TS affects ability to learn in any academic area, whatsoever.
Hey--here's to us: parents to the best girls in the world!
On Jun 09 2008, Lisa from Maine Wrote:
Kris, just wanted to give you a note of support. I have always been thankful we had my daughter's diagnosis before her birth because I know it enabled us to get services for her and watch things with her from the start. Since I am only 5 ft. we would not have been surprised if she was small and if hadn't known about the TS we might have gone on a long search for answers when her growth really fell off the charts and she started having developmental delays. I am glad you finally got a diagnosis for your daughter.
Luckily our GH has been covered by insurance but I have heard others complain about fighting to get theirs covered. Maybe the insurance issues board on this website would help. You could also try posting on the Turner Syndrome Society website.
Good luck!
On Jun 09 2008, Lisa from Maine Wrote:
Anthony, Just logged on and read your posts about your daughter's social issues. My daughter is only three so we haven't encountered these issues yet but I can tell you that even at three she is behind. She is very verbal and obviously intelligent but acts more like a two-year-old sometimes. I have read a great deal about social issues related to TS and I am concerned about this with her someday. As for your concerns now with your daughter, a few years ago Dr. Dean Mooney spoke about Nonverbal Learning Disorder. I think that some of the social issues might be related to this. He has a website (I think it's mapleleafclinic.com) where you might be able to find more info. In addition to posting here, you might try the Turner Syndrome Society website as well. Good luck. I am going to attend the conference in July as well.
On Jun 09 2008, Kris Wrote:
Hi everyone, my name is Kris and my oldest daughter has been recrently diagnosed with TS(mosiac)she is alomost 12 you and is srtuggling socially academically and has moments of aggression to her siblings. She recently started the hgh 6mos ago , we have seen some positve effects. But I'm very concerned with being out of work and all we are not able to get her medication s filled and get her to her appropriate doctors for further follow ups . I had ran into a lady who recommended I come to this site for suggestions and to meet other parents who maybe going thru similar things. I am so amazed how many are going thru different but simialar things. My daghter was born 4wks early 6lbs 1oz and 181/2 inches no physical charateristics the cord was wrapped aroung her neck tice and I was place on breathane from 20wks along. Due to the history of Asthma she was placed on dose of predinisone to prevent ashma whenever she go a cold, she didnot double her wait till she was 6mos along. She developed severe escema when she was 14mos old and place on topical steroids espcially on the back of her neck where the escema was severe,she was always tiny and I question alot of things she got closer to 8yo andnotice she just keptfalling of her growth from 10% to zero, and she starting putting weght and with obesity such a big to do especially in my family I really starting questioning and yet nothing. It wasn't until her pcp assistant finally listened to me and followed up on my concrens. She just happened have had some experience and knowledge of TS. I so glad and thankful we caught in time for her to stillbe able to start the hgh which has shown some positive effects.
Thanks for letting me vent that.
krislister@grandecom.net Please em me with comments or suggestions would be greatly appreciated.
On Jun 07 2008, Gretta Wrote:
Hello! I can't answer on the Oprah themed shows. I have SEVERAL times sent notes, emails, requests to Oprah and Ellen shows to see if they would do show for awareness. TS is often referred to as "rare", but 1/2500 leaves a LOT of girls/women out there. I would have thought that I would have at least heard the words "turners syndrome" before Elena's birth. Awareness is something I hope to tackle in the next year ... hopefully.
I'm so glad to report that the Yahoo site is TAKING off especially with a few parents who seemed to really have bonded. Parents and daughters seem to have found use for the site. HATS OFF TO JAMIE! She is WONDERFUL support for me alone, it's AMAZING how she keeps up with all this!
I also wanted to post that a couple of people had sent in some questions for the TS division and when I sent out emails in response they came back to me. PLEASE don't think I am not answering, just try me again and double check the email address that was given to me!
I hope everyone has a GREAT DAY!
On Jun 03 2008, Anthony Wrote:
Thank you Gretta and Sally for your feedback. Sally, my wife and I plan on attending the July conference, and as you mentioned, we hope to get some valuable information/perspective there.
I really want to bring our daughter, but she's very uncomfortable with the idea. I suspect that, given her existing social difficulties, she's keen to be as "normal" (a word I detest) as possible, and being around other TS girls challenges her self-perception in a way she isn't ready for, apparently.
Has Oprah done a TS-themed show?
On May 28 2008, Gretta Wrote:
Hi all! Anthony, I have sent out an email for you to see if I can find some response in my "database" of people. Sometimes they aren't quick to answer me, but I am hopeful to find someone who might be able to talk to you about the issues your daughter is having! Sally, you have a GREAT idea that they should try to come to conference! I am counting the days and can't wait to come!
An update on our GH....it came in the mail today and I have injection training Friday. Still no word on insurance coverage but I am assured by my Dr's office all will be good when my three months of medication run out.
Jamie has a Yahoo site set up for TS and I will be getting with her soon to learn how to moderate it so that we will have a more user friendly place to leave messages and chat. I will update ASAP. I will apologize for not being ready yet, but I am in the process of selling one home, building another, being pregnant, etc! :) I promise to get with Jamie soon!
I hope everyone is having a GREAT day!
On May 28 2008, Sally Wrote:
Anthony, have you thought about going to the convention in July? Your daughter can hang out with other TS girls and feel part of her unique group as "normal"! I would highly recommend it. Also you can learn first hand from other parents and learn the medical updates. There is no place as healing for everyone as this is tough for us all.
On May 27 2008, Anthony Wrote:
I would be extremely grateful to hear from parents of TS girls aged 11-13. My 12 year-old is struggling socially, and would love any perspective from parents of girls that age, or TS girls themselves.
Any parents of middle-school aged TS girls out there with stories or advice to share?
Thanks!
On May 27 2008, Anthony Wrote:
Hi everyone. I'm the father of a 12 year-old with TS, whom we had diagnosed at birth. She's been on GH for 3 years, and unfortunately, haven't seen much improvement on the growth chart.
Our biggest issue is dealing with the social challenges associated with TS. She is distinctly immature, socially, though exceptionally outgoing, intelligent, and friendly. Her friends have gradually distanced themselves from her, as they have matured, and my daughter has not kept pace. This has become a bigger obstacle than her size.
I would appreciate any parent's perspective on this. My daughter doesn't understand why girls her age can't relate to her (and thus don't hang out with her), and though I have explained the whole "social cues/maturity" thing to her, I think the concept is too sophisticated for her to grasp.
Thanks, in advance, for your input.
On May 21 2008, Lisa from Maine Wrote:
Becki,
How old is your daughter? My daughter is almost four and has been on GH for almost two years. I've never noticed that they make her more emotional but since she was so young when we started perhaps I can't tell. If your daughter is older maybe the emotional reaction has to do with other developmental stuff. Good luck.
On May 20 2008, Gretta Wrote:
Hello everybody! This is Gretta and I thought I would post my news....we are having a boy this time! We are very excited! We have been waiting to start GH with Elena, but our insurance wanted a bone age x-ray done and that was supposed to the last thing that they needed and then we would be approved. Guess what? We weren't. Now they want Elena's Dr. to call a Dr. to have an URGENT REVIEW of the need for her GH therapy. In the meantime, Humatrope agreed to give us four months of medication while we were waiting on the insurance to get all their ducks in a row! We are fortunate enough to have a charity that will pay for the syringes, etc. while we wait as well. I'll keep you all posted after I have my injection training, etc. Hoping to have a good CHAT spot soon! Everyone have a great day!
On May 16 2008, anonymous Wrote:
Lisa from Maine....boy have I got some questions for you. If you don't mind sending me an email at ts@magicfoundation.org. Thanks Lisa!
Gretta
On May 16 2008, anonymous Wrote:
WOW!!! Thanks for the input! I am excited to say that Jamie at MAGIC is doing some technical stuff for me and we are going to get a good "chat" spot going, message board that will be really helpful especially when we get more people involved. When I first started the networking I didn't have any calls, emails, or anything for a LONG time. The emails are picking up, calls, etc. I'm really excited! I truly hope that someday it is so BIG that I can't handle it! I want all mom's to be involved and feel like they have a place for discussion, friendship, questions! We all can do this! :) I truly believe it will help our daughters in the future!
I am VERY excited about the conference and I'm counting the days! I look forward to meeting people!
THANKS!! Gretta
On May 14 2008, Becki Wrote:
We started my daughter Emily on GH about 3 months ago, and almost immediately I noticed a huge change. She is so emotional. She cries all of the time. I was wondering if anyone else noticed this or has heard of GH causing this?
On May 12 2008, anonymous Wrote:
Hello, I have five year old with TS, we found out in Dec. She is doing great, short,and on the GH now and doing good so far with them, I just wanted to inshure the moms new to this everything can be ok, I often look at the stack of medical bills and cant beleive they are for such a healthy girl right now!! LOL, She has short stature, in the fifth percentile. She looks like she is three entering Kindergarten this fall, but it doesnt bother her in the least. She is great with the injections, we get no more resistance from her then we get about takeing a bath. We have treated everything very simply,matter of fact, and age appropiate. Even all the testing we just go to the doc office and so be it. It has worked out great so far. We answer her questions, which are more like can we go to the gift shop after? lol. She has mild sensoral nueral hearing loss, they tell us but we do not see it,nor do her teachers and antiboties that suggest she is high risk for hypothyroid, but as of now all is good with that her thyroid is working properly. I have cried many a nights about her TS but slowly I am learning to deal with it and I wanted to let other mothers know it can and will be ok, I do beleive that. Everyone just thinks she is adorable and petite.
On May 10 2008, Lisa from Maine Wrote:
Just read Gretta's message from the other day regarding activity on the board and I, too, hope more people will post so the board will be more active, especially for those parents whose daughters have just been diagnosed. The first thing I did after getting the amnio results when my daughter was born was get on line for information and I know how great it was to have the support of others who had been there before me.
I am planning to attend the MAGIC conference in July since I can't make the TSSUS conference this year. I notice that the sessions are set up by disorder and there are a couple I am interested in which are not listed under the TS header. Does anyone know if you can go to sessions outside the "track" which matches your child's diagnosis? Hope other TS parents plan to attend the conference as well.
On May 08 2008, Lisa from Maine Wrote:
Just want to put my two cents in about TS and infertility. I know infertility is an issue for most women with TS and having to tell your daughter she may not be able to have children is difficult. We may reassure our daughters and ourselves by telling them that they may be able to bear a child with a donor egg, and this is what I planned to tell my daughter when she was old enough to ask questions. However, since attending a session at the TSSUS conference two years ago about heart health, I am going to be much more cautious about telling my daughter that she can carry a pregnancy. It can be done, but there are real risks to the health of TS women who choose to carry children even if they don't have the "typical" TS heart problems. Tests show that my daughter may actually be in the small percentage of TS women who go into puberty on their own and can get pregnant; however, I want her to be very sure she knows all of the risks to her health before she decides to carry a child, whether it happens because her own body is able to produce eggs or through egg donation. I don't want to put a damper on anyone's hopes about pregnancy but feel that we need to be fully informed, and know that my view has changed since attending the TS conference presentation.
On May 08 2008, Lisa from Maine Wrote:
I am new to the TS Message Board on Magic. I used to go to the one on the Turner Syndrome Society's website quite often but that has been undergoing some changes and it's not as easy to navigate as it used to be. My daughter, who is now 3, was diagnosed with TS by amnio before she was born. I am very thankful that we knew she had TS before she was born, because although we have dodged many of the health issues that TS girls sometimes have she pretty much stopped growing around 9 mos. and has had many developmental delays (late to crawl, walk, talk, etc.). Since we knew about TS we were able to get her evaluated before her first birthday and into speech and PT services, plus we did not have to spend months or years searching for a diagnosis for her small size. She has been on GH for almost two years now and she is still small for her age but definitely growing. She meets all of her developmental milestones eventually but seems to be about 6 mos. behind on those. She also has some definite sensory issues.
I hope this board can become a place for parents and girls/women with TS to post questions and answers. I found the TS board I used to visit quite helpful, especially when we encountered something new.
On May 05 2008, Gretta Wrote:
If anyone has been checking the message board lately but not writing, please write something. Other TS message boards have shut down from my understanding and I REALLY, REALLY, REALLY want to get this rolling! I've had a FLURRY of mothers contacting this week and I would like to get some more discussion on the board going for them. The ladies that I have talked to this week are still pregnant with their TS daughters and heart problems are detected. Luckily, I have a great friend that I was able to turn them to for some guidance as my daughter did not have this diagnosis and I couldn't be of any guidance, only support! Any communication on the board would be helpful right now so that we can get it rolling! Thanks to any TS girls, or parents that can help by checking the message board with me!
On Apr 28 2008, Gretta, TS Division Wrote:
Hi everyone! It's Gretta and I'm sorry I have not been more active on the message board. I have been trying to get in a "groove" so to speak with the networking of the TS division. I hope that I can get more parents active in using the message board, especially myself! I am about a week away from starting HGH treatment with my daughter and am anxious to see how it goes. I am looking forward to convention and hope to meet a lot of parents and LEARN! Thanks for the parents who are active on the message board!
On Feb 29 2008, Melissa Wrote:
I just wanted to take a moment and encourage and calm some of the worried parents on this site. My daughter is 10, and has been taking HGH for about two years. Our situation was a little unusual because she is a twin and her sister does not have Turners. As soon as I found out (when she was 7/8)I sat her down and told her that the reason she was small was because her body didn't make enough of a thing called a hormone that helps her to grow. I told her they can give her the hormone but it is a shot. She was nervous, but I explained to her that the needle is so tiny that you barely feel it. As soon as we went for our training and she found out it was practically painless, she was fine. In about a month she was an old pro and now gives herself her injection (with my supervision). I think that if a child knows something and is accustomed to the knowledge they aren't as traumatized as they would be if it was a sudden surprise, so I broached the subject of her infertility early on. I told her that part of having Turners meant that her body couldn't make it's own eggs. I told her that did not mean she couldn't be a mom or couldn't be pregnant - just that she would have to borrow an egg from someone else. I made it a non-issue by addressing it as a glitch but not a major problem. I know there will be more emotional ramifications when she gets older,but this isn't going to be a shock or a sudden crisis. I suffered through years of infertility and so far, this topic hurts me much more than it bothers her.We did go through a short phase of her wanting people to treat her differently because she 'had something wrong with her' but I immediately told her that was not going to happen. She is a little smaller but otherwise, she is the same as any other girl her age. Now, aside from the occasional question about being able to have children (and I just reassure her and tell her it's not a big deal - just use someone elses egg)it is kind of a non-issue at our house.Her shots, and etc, are just a part of life like the fact that her sister wears glasses and her brother has brown hair. It just is. When she was diagnosed and all of this first started, I was terrified. My heart ached for my daughter,and being a mom who loves her, I'm sure a part of me always will. BUT, I want all of you just facing this for the first time to know that it is nothing like the nightmare I forsaw at the beginning. Now, when we have a heart to heart, I tell my daughter that I don't know why God chose to allow her to have this condition but that I do know he is still in charge and he uses it to refine her spirit. She is the most compassionate person I have ever known, and I am sure some of that is due to her time with Turner's.God is using this to make her a truly beautiful person in the ways that matter and I want her to see that. You will get through this - and your girls will grow to be awesome women! It's hard to look past this, and I remember one day when I was crying over my daughter's new diagnosis that one of my friends put it into perspective. She had 16 yr old daughter who was intellectually about 6 yrs old. She looked at me and said "I know this looks bad to you, but do you think that I wouldn't trade my daughter's condition for this one in a heartbeat? Your daughter will be able to grow up and go to school, she will be able to get married and have her own family. She isn't going to die from this, so remember how lucky you really are." She was right and I am so glad she said that to me. I hope I have been able to help someone a little with my experiences-sorry I'm not as articulate as I'd like to be! :)
On Feb 27 2008, anonymous Wrote:
TO HELPING MOM
YES SHE DOES HAVE TS AND NO THEY HAVE NOT CHECKED HER THYROID THEY SAID THERE WAS NO NEED UNTIL SHE WAS TWO SHE DOESNT SEE THEM AGAIN TIL AUG.THANKS FOR THE INPUT
On Feb 25 2008, helping mom Wrote:
To Angel's Mom,
Does she have TS? Have they checked her thyroid? My daughter was chunky and they found her thyroid to be low.
On Feb 19 2008, anonymous Wrote:
hi my daughter is 10 months old and was diagnosed at birth afther being born with a large cyst on her face and neck. she was taken to nicu and spent 2days there wich was actually before she was diagnosed they were trying to figure out what the cyst was. her kidney ultra sound was normal heart showed a small hole they said was no big deal it would close up. I have been stessing about what her future may bring. she is actually 20lbs at 10months and I have 5children and she seems to be the biggest for her age. I want to know if any one has a child that is short and chunky?or could it be that she is actually swollen in her legs and thighs? sorry to drag on but i am just so glad that i found this message board.
angel'smom
On Feb 12 2008, Lainey's Mom Jilly Wrote:
Becki
I read your question about when to tell your daughter about Turners. My daughter is only 1 so we aren't there yet, although our family and friends are all aware of it. I have read some information that you shouldn't tell them until they are older, but I honestly think you should tell her when you feel it's right for you and your family. I have a friend whose daughter is given the GH shots at night and they tell her it will help her to grow up taller, and she says to them that she likes being little! As I said in my other response to "Scared Mom" I am trying to prepare myself for the shots so that it won't be so difficult for my daughter to handle. I also think that our daughter will just kind of know that she has Turners because we talk about her Turners at our house and with friends like we discuss my asthma. I don't want her to feel that I have kept anything from her. Again, you have to do what feels right for you as far as telling her about Turners and her shots. I hope my thoughts are helpful!
On Feb 12 2008, Lainey's mom Jilly / Kentucky Wrote:
To: Scared Mommy
I'm so sorry you didn't do well at dr's office the other day! I wish I could say that I know how you feel, but I really don't. We haven't had many medical issues to deal with. I'm trying to prepare myself with the idea of the growth hormone shots that will be coming up! To answer your question, I don't find my daughter (1 yr) to be anymore sick than my son ever was. I do, however, find us treating her like her size (3 month old) rather than her age and fussing over her because she is the size of a doll. I hope that I might have helped!
On Jan 30 2008, Scared Mommy Wrote:
Hi....I was just referred to this site by our daughters new Endocrinologist. My daughter is 18 months old, looks like she's 9 months old, wears 12 month old clothes, weighs 17 lbs and fights like a 3 year old......lol. She was dx at birth. They saw edema in her hands and feet while doing a sono when I was pregnant....so the specialist seeing began!! When I had her she was in the NICU for 6 days while they ran EVERY test in the world. They came back and told me it was in fact Turner Syndrome....I was shocked yet relieved. I know it sounds weird but in the back of my mind I was thinking it could have been worse, we will get through this and there is a reasoning (somewhere) behind all of this. It's been really hard on me at times thinking why why why???? We don't deserve this, why my baby, what did I do wrong?? For the life of me I couldn't figure it out.......well I finally figured out......there is NOTHING to figure out, it just happens. This past month has been very hard, she has been to NINE Dr.'s appointments!! She had to have a catheter to check her kidneys, which she has an extra tube and reflux on both sides, she had to have another ecko, which showed the hole in her heart is still large and there is muscle tissue in it, they will give it until Sept. then they said they will probably catheter her heart =( Met a new Endo. Dr. She's ok, kinda cooky, but we will see. I'm usually very strong and always say to myself "this is going to help her" and I can usually deal w/ the iv's........well the catheter......I had to leave the room and throw up I was so upset. Thank god for my husband being there. I could not have done that alone. We just got back from the Dr. to find out she has RSV. Has anybody noticed girls w/ TS get sick easily? It may be because we have a five year old that goes to school and could bring home stuff, I don't know. It just seems like she always has a runny nose. I'm also super paranoid as well, so I'm sure that doesn't help. Sorry to drag on and on.......but it definitely felt good to get this off my chest. It feels good to actually say this stuff to people that "know" what I'm going through. It's hard. Sometimes I feel like I'm going to break, but I know I have to stay strong for her. Thanks for listening. I hope everyone's little princesses stay strong and healthy =)
On Jan 16 2008, Becki Wrote:
We recently found out that my daughter, Emily (age 4) has turner syndrome. We are planning on starting her on GH as soon as our insurance in figured out. My question is how do I tell her why we are giving her these shots. We have not told her she has turners. I am afraid that she is too young to understand it. She is to smart to not want an answer. When do you think the right time to tell her about her diagnosis?
On Jan 12 2008, Colleen Wrote:
Deciding to do growth hormone or not is a very personal decision. We have decided to give our daughter growth hormone for her self-esteem. It was difficult at first, she hated it, but she got used to the shots and has even given herself the shots. She is very happy to see the results of her shots and although she is still short compared to her peers, she is not super noticably short.
On Jan 03 2008, Yleana Wrote:
Hello I am a mom of a three year old with TS. Her growth hormone is coming in the mail tomorrow and a nurse is coming the next day to teach us how to give the injenction. It's 4 in the morning and I can't sleep because of the worry about starting these shots. My daughter gets anxious very easily and she is terrified of shots, like most three year olds. I just need to know that what we decided to do is worth it. Thanks for listening:) Feel free to email me ybsmall@yahoo.com
On Dec 10 2007, Rachel--Michigan Wrote:
My name is Rachel. My daughter, Aleah, who is now 3 years old, has Turner Syndrome. She was diagnosed when she was nine months old after she went through seveal weeks of hospital stays for mastoiditis. Thankfully, other than being small for her age, and having those early ear problems, she is doing great now!! I do have a question though. Prior to begining her GH treatment she had behavior issues where she would throw horrible fits. Since we began the GH treatments it seems as if it is easier for her to maintain herself behaviorally. Has anyone else noticed this in their child?
On Nov 23 2007, Gretchen/Maryland Wrote:
My daughter was karytoped TS mosaic this year a few months before her 10th birthday. It was devestating to hear at first, but the more I learn the easier it is to accept. She is due to begin GH in December--she now is 3'11".
If I can say "fortunately", the only major problem systemically that was found was the fact that she had an enlarged, bicuspid aortic valve. Advances in medicine are being made everyday and the TS reports from years ago are being disproven as the research continues. Thank you for this site.
On Nov 23 2007, anonymous Wrote:
Hi.I'm a grandmother in New Zealand who has just learned that her awesome 9 year old grand daughter has TS. She is so keen to grow. The specialist advises no GH yet and a delayed puberty. Also that it may be difficult to get government funded treatment. Does anyone in NZ have experience of this?
On Nov 12 2007, Amy Wrote:
Has your daugher been checked for hip dysplasia? My daughter was recently diagnosed with mosaic turner and she was also born with hip dysplasia.
On Oct 22 2007, Kristen Wrote:
Hello, My daughter is 19 months now and was diagnosed with turners when she was about 5 months old. She is a mosaic, but we have had so many feeding difficulties with her. She never cried to eat as an infant, and to make a long story short we ended up with a G tube (mic key button ) because she would never drink enough to sustain herself. Now we are having other issues. she acts like she is in pain when she is crawling and kinda stops and just holds herself up.. we cant decide if this is an orthopedic issue or Gi.. doctors do not know.. its been very frustrating and she has been through a lot.. just wondering if maybe it could be related to the deficiency of growth hormone..we see an endocrinologist in december. if anyone could shed any light on issues they have had with young babies that would be great.
On Sep 25 2007, Elizabeth Wrote:
I have a 4 month old daughter who has droopy eyelids. Does anyone know if this can be corrected?
On Sep 07 2007, Mary Jo Wrote:
We started growth hormone one week ago for my daughter who is 17 mths old with TS! It was scary at first, especially the first few days, but after one week it's so easy. My daughter doesn't even cry anymore. After doing much research....I'm glad we looked into what would be the most simple and easy device for HGH injections and we are very very pleased with the ease of NordiFlex! I thought we needed a needle hider but you can barely see this 31 guage needle. It's actually easier to stick her I think than a pen that you have to click. Prefilled, already mixed, and disposable. I'm so glad we did our research since this is going to be a long road... I need it to be as easy as possible for us and as painless for our daughter. Feel free to contact me if you need support! Mary Jo maryjof@mac.com
On Sep 05 2007, Kristen Wrote:
See thats part of the problem when I was born 22 yrs ago TS wasn't really known and there wasn't as much info about it as there is now I just thought it would be interesting to see if there was another case of a TS girl having tumors similar to the one i wrote about....
thank you for the response !!
On Sep 05 2007, anonymous Wrote:
RE: Tumors
As the mom of a daughter I have watched and learned all I could for a while now. I have never seen anything that says gh creates tumors. But as I understand it, if there is a genetic pre-plan so to speak, it may cause a before hidden tumor to grow and become visible but it will not create it. Have you asked your doctor?
On Aug 26 2007, Kristen Wrote:
thats no problem...
I read some of the previous posts and had a question of my own. To the previous posts, Im a 22 yr old with TS and took GH from 8 to about 16 it was Protropin ( the synthetic form ). It worked good for me although Im still short (5'1). I have a very tall farther and other family members so Im not as short as a common TS girl. I had asked a question about tumors , I was wondering if anyone has known of other TS girls with tumors, and if theres a connection of tumors with TS.
On Aug 25 2007, anonymous Wrote:
Jamie with MAGIC here: just had a new study about TS forwarded to me- it is about the chromosome splits and what causes it...thought you might be interested. Cut and paste this link into your browser to review it. http://scienceroll.com/2007/08/25/new-clues-for-down-syndrome/
On Aug 03 2007, Sue Smith RN CDE CNS PNP Wrote:
A TV Company based in the UK has approached the foundation to help them find two families with young adults with Primordial Dwarfism that would be willing to particpate in a documentary about the life of a 25 year old with PD. They are particulary interested in people between the ages of 18 and 25. If you are interested please contact the MAGIC office at 1800 3 MAGIC 3 or email sue@magicfoundation.org
On Aug 02 2007, MJ Wrote:
Question? Which GH should we choose? My 16mth old daughter has been diagnosed with Turner Syndrome. All GH is the same, same efficacy/safety... so I want to start her on the one that is easiest for us to administer and for her to tollerate. I am considering Nutropin and Nordiflex.... can anyone provide me feedback on these two GH or perhaps you have another choice?
We have been approved thru our insurance for Nutropin currently, but I'm still doing research on this.
Any info you can give me or just your opinion would be greatly appreciated.
also, my daughter has grade 2 reflux of her kidneys... but Endo said we could start GH... anyone have similar story?
On Jul 24 2007, anonymous Wrote:
We just found out our 2 yr 9mos old daughter has a variant of Turner Syndrome. She is missing part of her X chromosome, but not missing the SHOX portion. She is very small (always hoovered below the 1% on the growth chart). Our endocrinologys has prescribed GH, but of course our insurance denied it. My question is two-fold. Does anyone have any information on short-stature and Turner syndrome, when it does not involve the SHOX gene. Does anyone have Kaiser insurance and was able to get growth hormone approved?
Thanks
Heidi
On Jul 18 2007, anonymous Wrote:
My daughter will be 16 in two weeks, preliminary testing suggests she has Turner Syndrome. This is all so new, while we are still waiting for the final results, which is supposed to be around 2 weeks. We know in our hearts that this is what she has. In the research that I have done, she is the oldest case that started treatment, this really scares me. She has been asking the doctor since she was 9 what was wrong with her, then she had a growth spurt during next 6 months and stopped, finally our doctor referred us to a specialist. I am trying to learn all that I can about this and what to expect in the upcoming weeks
On Jul 12 2007, Colleen Wrote:
Hi Margaret,
My daughter is 10 yrs old as well. (diagnosed at 5 yrs old). I understand the difficult time you are going through right now. This message board is for all ages; anyone with Turners Syndrome, family members etc. It is just another way to communicate to one another and add support.
Please let me know if I can help in any way.
Sincerely,
Colleen
On Jul 12 2007, Margaret Wrote:
Colleen, how old is your daughter? I was just wondering how old the children are for this board. My daughter is 10 and we just found out about TS. It is a little hard to deal with right now.
On Jul 10 2007, Amanda Wrote:
To: Sally
As an adult with Turner's that is both a funny question and a frustrating problem. I have been so lost I called home for directions, more than time. I used things like landmarks and repetition- learning my way by driving there over and over and over again. I took short trips first and then started expanding my area a little bit at a time. Thank God for GPS systems!
On Jul 02 2007, Jamie S Wrote:
Hi Janice my name is Jamie and I am the spokesperson for the IGF division. I have heard of doctors putting children on both GH and IGF. It is possible to need both. Treatment for IGFD is basically the same routine as GH therapy only twice a day. My daughter has been on it now for almost 4 months. I would be happy to answer any questions you have. You can email me at IGFD@magicfoundation.org.
On Jul 02 2007, Sally Wrote:
Are there any specific learning tricks we as parents can use to help our daughters begin to navigate around when driving? My daughter has her learners permit but no sense of where she is going at all. We are going to get her a navigational system- but want her to first learn some basic's before she gets spoiled. Any ideas out there?
On Jun 27 2007, Amy Wrote:
RE: IGF and Turner's. Have you checked out the video online about IGF from this website? It is great- I was completely mixed up and it helped me alot. Go back to the home page and the link is on the lower left to the webcasts. You will find it.
On Jun 26 2007, Janice C. Wrote:
I have a 3 year old daughter with Turner's that is on GH and her doctor wants her to start IGF-1 also. Has anyone had a daughter with similar circumstan ces? I am just looking for someone to talk to about their experiences. Thanks!
On Jun 22 2007, Jamie Wrote:
FYI- MAGIC is working on establishing a new message board for everyone (all disorders) which is about Insurance issues. It should be up next week. If you have questions, personal experiences which you can share to help others-please look out for this Board and post so that families can finally get some real help from those who have been there! If you have a problem, feel free to post it...I am sure you will not be alone!
On Jun 22 2007, anonymous Wrote:
Iam so glad for this board! I don't have to sign up for anything I can just ask my question. Thank you! My daughter is 13 and it has been a struggle getting her to four feet ten inches tall. The doctors have started asking about "puberty" timing and she is just now starting to think about it. But "we" really want to try and get her to 5 feet tall before we do that. Does anyone have any experience with their daughters on the timing of puberty and how much their child grew during puberty that I could learn from? Thanks
On Jun 21 2007, anonymous Wrote:
I am happy to help in moderating this site. It's a great way for people with Turners Syndrome in their life to connect with one another.
Sincerely,
Colleen
On Jun 21 2007, Leanne Manning, TS Division Consultant Wrote:
Hi there!
Thank you for coming to the Turner Syndrome message board!
I hope you find this site informative and the messages from other parents helpful!
You can also send me an email if you would like, at ts@magicfoundation.org
Thanks,
Leanne
Proud mom of two awesome girls that don't give up: Emory, who has Turner Syndrome; and Michel, who has Asperger Syndrome.
On Jun 21 2007, anonymous Wrote:
Thanks for setting this Message Board up for all Turner Syndrome families. It is a great way to communicate with each other. Colleen thanks for moderating this board!
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