Tomorrow, Madison and I will head to Portland to meet my mom for the Turner Syndroms Society Conference. I am excited about the conference, but also nervous.
I'm excited for Madison to meet other girls with TS. I'm excited to hear from physicians what we can expect in the future. I'm excited to talk to other parents about how they deal with shots and co-pays and tests and all the other delights of Turner Syndrome.
I consider our family very lucky, since the conference is in our backyard this year, the first conference since her diagnosis.
However, as the conference draws nearer, I am a little nervous. What if we learn about risks we didn't know about? I'm just now starting to come to terms with the first set of realities, I am sort of gun-shy about getting new information I guess.
Probably just stupid nerves. We are going to have a blast, and learn good things and meet great people. Either that, or we will spend all weekend in the hotel pool.
Showing posts with label Turner Syndrome. Show all posts
Showing posts with label Turner Syndrome. Show all posts
Thursday, July 16, 2009
Saturday, May 9, 2009
Mean Girls
On Wednesday, my daughter got in trouble at soccer practice because she was fighting with another girl. A girl that she considers her best friend, whom she has known (and fought with) since kindergarten.
What Madison told us was that she was hyped up on sugar and her "friend" wouldn't stop joking about Madison's brand new but uncomfortable shoes, which were exactly the same as the friend's, so Madison kicked her in the shinguard. The only explanation Madison could offer for why she would kick her friend was that she was feeling "tense".
Today at the game, the friend was absent. Madison's coach approached me as I walked the sideline as a referee to tell me that she had talked to the other girls about watching what they say about Madison. She told me that she has heard the friend and others saying mean things about Madison within Madison's earshot . The coach told me that they tease her about being small, and not able to run as fast as the other girls. This was the first time I had ever heard of Madison being teased.
It's a good thing I was wearing sunglasses. The field went a little blurry for a while. I've always known that kids can be mean. I guess I didn't think her friend would turn on her. Ever since we found out that Madison has Turner Syndrome, I have been trying to prepare her for the comments she will invariably hear. I should have been trying to prepare myself as well.
It's probably also a good thing her friend wasn't there. She reached her educational plateau in elementary school, and I was angry enough to maybe mention it.
I'd like to think I'm mature enough to restrain myself. I'd like to think I wouldn't kick her in the shinguard.
Madison, I know you read my blog- here is a link just for you. I love you.
Thursday, April 9, 2009
A short story
My daughter has Turner Syndrome. Turner Syndrome is a rare growth disorder that affects one in every 2000 girls.
We found out last fall, when she was 11 years old. We knew that she was short, but we weren't too concerned. I guess it's a good thing that her pediatrician was concerned enough to send us to Doernbecher childrens hospital to see a pediatric endocrinologist, Dr. Madison. (cool, huh?)
Dr. Madison ordered tests and told us she suspected Madison had growth hormone insufficiency. She told us a little about Turner Syndrome, but no one really thought Madison had it because she doesn't exhibit many of the classic TS features: short, webbed neck; barrel shaped chest; and out-turned elbows. Madison just looks like a short little me.
I remember when Dr. Madison called with the diagnosis. She was so thoughtful and went to a lot of trouble to explain the diagnosis carefully, but to be quite honest, I didn't hear anything after "Syndrome". I had done enough internet research to think I knew that the news wasn't good.
Which brings me to the point of today's post. There is not a lot of TS information on the internet, and what information there is is often misleading, conflicting, discouraging and flat-out false. We waited a month for an in-person appointment with Dr. Madison to go over my daughter's treatment plan and prognosis, and also to have more tests for many of the associated medical problems that can go along with TS.
TS girls often have heart deformities. Aortic valve anomalies are common. Madison had multiple EKGS and a cardiac ultrasound. She has mild widening of her aortic root, but her cardiologist is not concerned. We are extremely fortunate that the cardiologist she sees, Dr. Michael Silverbach, has a particular interest in TS girls. He has authored or co-authored most of the research out there pertaining to cardiology and Turner Syndrome.
Another common defect is kidney deformities. Again, we dodged a bullet. Madison has two separate perfectly functioning kidneys. It is not uncommon for girls with TS to have one large horseshoe shaped kidney.
Hearing loss is also common. I have read that most of the adult women with TS use some sort of hearing aid. Spencer and I were certain that Madison had hearing loss... but it turns out it is only the selective hearing loss that most kids have.
Many girls with TS have learning disorders. Madison is a straight-A student who has been identified as intellectually gifted. She won her school's spelling bee. However, she has some problems with spatial things like tying her shoes. This may be part of Nonverbal Learning Disorder (Excellent spelling is a sign of NLD) , which has been linked to TS, but we aren't pursuing any type of treatment because she does so well academically.
What Turner Syndrome means for us that Madison will be significantly short, and her ovaries won't work. We give her human growth hormone injections every night, and they are working. When she reaches an acceptable height, (We are hoping for 5') we will discontinue the growth hormone and she will begin taking estrogen, at which point puberty will begin. Unfortunately for Madison, this may be 3 or 4 years from now.
It means she will not be able to get pregnant with her own eggs. If she chooses to become a mother, her options are adoption or donor eggs.
I know that there are parents out there like me, who are scouring the internet for any type of information. I am confident they will find this post. I hope that they see this and realize that there are a lot of variables, and every girl is different. I can say that some of the best TS info I have received is from other parents. There is a great TS group on Yahoo!, and the TS society has conventions every year. We will go this year, since it is in Portland. I am looking forward to it, and I know Madison is, too. Maybe we will see you there.
We found out last fall, when she was 11 years old. We knew that she was short, but we weren't too concerned. I guess it's a good thing that her pediatrician was concerned enough to send us to Doernbecher childrens hospital to see a pediatric endocrinologist, Dr. Madison. (cool, huh?)
Dr. Madison ordered tests and told us she suspected Madison had growth hormone insufficiency. She told us a little about Turner Syndrome, but no one really thought Madison had it because she doesn't exhibit many of the classic TS features: short, webbed neck; barrel shaped chest; and out-turned elbows. Madison just looks like a short little me.
I remember when Dr. Madison called with the diagnosis. She was so thoughtful and went to a lot of trouble to explain the diagnosis carefully, but to be quite honest, I didn't hear anything after "Syndrome". I had done enough internet research to think I knew that the news wasn't good.
Which brings me to the point of today's post. There is not a lot of TS information on the internet, and what information there is is often misleading, conflicting, discouraging and flat-out false. We waited a month for an in-person appointment with Dr. Madison to go over my daughter's treatment plan and prognosis, and also to have more tests for many of the associated medical problems that can go along with TS.
TS girls often have heart deformities. Aortic valve anomalies are common. Madison had multiple EKGS and a cardiac ultrasound. She has mild widening of her aortic root, but her cardiologist is not concerned. We are extremely fortunate that the cardiologist she sees, Dr. Michael Silverbach, has a particular interest in TS girls. He has authored or co-authored most of the research out there pertaining to cardiology and Turner Syndrome.
Another common defect is kidney deformities. Again, we dodged a bullet. Madison has two separate perfectly functioning kidneys. It is not uncommon for girls with TS to have one large horseshoe shaped kidney.
Hearing loss is also common. I have read that most of the adult women with TS use some sort of hearing aid. Spencer and I were certain that Madison had hearing loss... but it turns out it is only the selective hearing loss that most kids have.
Many girls with TS have learning disorders. Madison is a straight-A student who has been identified as intellectually gifted. She won her school's spelling bee. However, she has some problems with spatial things like tying her shoes. This may be part of Nonverbal Learning Disorder (Excellent spelling is a sign of NLD) , which has been linked to TS, but we aren't pursuing any type of treatment because she does so well academically.
What Turner Syndrome means for us that Madison will be significantly short, and her ovaries won't work. We give her human growth hormone injections every night, and they are working. When she reaches an acceptable height, (We are hoping for 5') we will discontinue the growth hormone and she will begin taking estrogen, at which point puberty will begin. Unfortunately for Madison, this may be 3 or 4 years from now.
It means she will not be able to get pregnant with her own eggs. If she chooses to become a mother, her options are adoption or donor eggs.
I know that there are parents out there like me, who are scouring the internet for any type of information. I am confident they will find this post. I hope that they see this and realize that there are a lot of variables, and every girl is different. I can say that some of the best TS info I have received is from other parents. There is a great TS group on Yahoo!, and the TS society has conventions every year. We will go this year, since it is in Portland. I am looking forward to it, and I know Madison is, too. Maybe we will see you there.
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