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Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 2/13/2008 9:34 PM (GMT -6)   
:-)  My daughter is mosaic too!  Unfortunately, she was not dx'd with the Turners until she was 12 years old, just hitting puberty.  It was/is such a rare syndrome and in her case did not present itself until this time.  However, she did have prevalent genetic features since birth that I had always questioned and her pediatrician did not keep adequate growth charts on her. I took her to see the Head of Pedicatrics at East Carolina University Hospital for an evaluation and chromosome testing.  He knew the diagnosis as soon as he laid eyes on her, however, withheld it until the chromosome makeup came back.  You are right, that was a reeling experience.
Is your daughter your first child?
There is so very much I could share with you!  Please tell me any complications from the Turners that your daughter is having now. 
I might add that your daughter is also the first case of Turner's/Crohns that I have come across too.  You said in your previous post that you had read that Crohns is common in Turners.  I would be interested in reading more on this topic as my daughter has begun to present some bowel disturbances that she is beginning to question.  I had already asked my GI if there was any correlation between her Turners & my Crohns and she had replied "no".  However, I continue to question this as well.  Turner's is an endocrine disorder and my Crohn's has presented some mild complications within my endocrine system as well.
Look forward to your future post and hope this post finds your daughter having a good day and momma able to get some rest too!

Regular Member

Date Joined Feb 2008
Total Posts : 32
   Posted 2/13/2008 11:01 PM (GMT -6)   
My daughter is my first child. She has always been in the less than 10th% for weight and height. She has no other problems right now that are usually associated with TS. It was found that she had only 20%xo cells so she may have escaped the worst of TS, but it's probably too soon to tell. I would love to hear anything you could tell me about TS. I have yet to meet another parent of a TS child in person and I really wish I knew what the future held for my daughter. I found some studies concerning TS and Crohn's (some of them are just summaries of studies) and our GI drs. said Crohn's is more common in TS. These are a few of the sites I found:
I would love to talk to you more on the subject. My husband has always had stomach issues, but I think he's in denial of them and right now is refusing to see a GI. I think he may have some form of IBS or IBD too. I do think he may have passed that on to our daughter. Now I'm worried for our 8 month old son that he may get it too. It is just no fun! But I guess we'll deal with it any way we can.
Mom to 2.5 year old daughter with Crohn's Disease and Turner's Syndrome
dx. 1/08, currently on Prednisone, Prevacid, 6MP, Remicade, Iron and Zinc

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 2/14/2008 2:25 AM (GMT -6)   
I would love to join the discussion, I am learning about Turner's Syndrome right now in med school. I will have to look up those sites! My highest regards to both of you who are managing to maneuver your way through TWO very scary disease experiences...
Co-moderator - IBS Forum

New Member

Date Joined Feb 2008
Total Posts : 11
   Posted 2/14/2008 12:20 PM (GMT -6)   
I have a 6 month old son too and I get worried that he'll have the same thing as my daughter has. It's so scary becuase you don't know how much is genetics/environmental etc. So far, my son has a problem with pooping more than twice a week. It's crazy how much you now notice how often your children go to the bathroom. My husband and I often discuss these things over dinner. My mom once was with us and asked us if we could just eat without talking about poop! :) You get so used to it, you know? We joke around that maybe our third child will poop normally. Third times a charm, right?
Mother to daughter (3 yrs) who has either CD or UC (Ped GI hasn't officially diagnosed her yet because she's so young)
She has taken Prednisone (20 mg and lower)- successful, but we could never wean her without it reflaring
Asacol 3 times a day-unsuccessful
Colazal 3 times a day- unsuccessful (made it worse)
VSL, Flagyl, Xifaxin
No meds right now
Thinking about starting 6 MP

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 2/14/2008 10:21 PM (GMT -6)   
Picklechic- I would recommend getting involved with your closest local chapter of the Turner's Syndrome society. This is an excellent resource and social network for your daughter and yourself. Even as young as she is it's important to start her off with social contact with other TS girls so that her self image is a positive one from the start. It will be a huge help to you too! I checked out their web site last night and saw they have a annual meeting coming up in Raleigh, NC in August. We live in NC so I may try and make that one....would love to meet you there if I/we can go. My daugher is one of the lucky ones, no heart or renal problems, no physical deformities or mental retardation. Her overall social maturity and cognitive skills throughout school was approximately 6 months behind other students in her age group. My daughter was an October baby and had I known it at the time, I would have held her back from starting kindergarden until she was six years old. She just was not socially mature enough. As for her grades we did not have any problems until math in 4th grade (1st major academic transition). We had to fight the school board, but we had her held back a year then and it was the best thing we could have done for her self esteem and academically. She graduated with a 1300 on the SAT, went on to college and currently has an associate's in business admin, 2 semesters from an associates in accounting and a batchelorate in history. So as you can see, she did alright! She currently works in a durable medical supply/equipment sales setting and the customer's love her because she is so compassionate to their physical limitations. She also is considering returning to school for training in respiratory therapy and x-ray for a position in a sleep lab. She is currently single but has had a limited share of dates. One serious relationship that ended by her choice. She felt the guy was too immature and told him to go fly a kite...he still calls her from out of state 3 years later! As I said alot to share so I'll post more later.

Sarita- Please feel free to chime in with any to have you as always!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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