Mothers of Marfan Syndrome

[lovemyboys528]

This forum is for support and open conversation for mothers of children with Marfan Syndrome. Feel free to compare your children's condition, severity of the condition, the behavior of your child, and request emotional support for you. Having a child with Marfan is a trial everyday. If you have any ideas of how to make your child happy and understand their condition, then please feel free to post them. I have a son, 9 years old, with Marfan. He is currently in an experimental study for a new medication for his aortic valve dilation. He Marfan condition is one of the more severe in his clinic that he participates in. Good luck to all of you mothers and I hope this forum helps you in some way.

[52640]

My son was diagnosed last May with a form of Marfan Syndrom.  He has Over Extending Flexability Disease.  They are watching him to see if it continues into Marfane Syndrome.  I am hoping that it does not.  Please contact me for we can talk.   52640

[nyghts]

HI
they did the same with my children. They actually went to Shriners. Now that my son has developed an enlarged aortic valve and has a tilted lens in his left eye we are now going to Childrens hosp. after his 6mth check up at Childrens his valve has gotten worse and he is now on mediciation.
I am also looking for support of any kind. My son use to be very active in soccer and football and now everything has stopped. he is doing martial arts however there will never be any type of sparing. My son is 10 and is having a difficult time with all of this. I also have a daughter 9 who has all of the symptoms and I have a 1 yr old son who they will test when he is 3. This is genetic and comes from my husbands side of the family.
feel free to contact me. we can compare notes and help each other through this.
shona

[lovemyboys528]

I understand the difficulty your son is having with this. My son is nine and is going through similar problems with activities. I bought him a wii this Christmas so he would still be physically active and have the feeling that he is still participating in sports. Luckily it worked. He has know found the enjoyment of golf and will be starting lessons this spring. It may also be a possibility for your son. Let me know if I can help. My son has been on medication for his heart for the past five years. He is now in the research study for losartan vs. atenolol. What medication is your son taking?

[Heather1212]

My daughter is almost 3 and has a dilated ascending aorta, just before the arch.  We're getting ready to begin genetic testing to see if she has Marfan's or some other type of connective tissue disorder.  She's been on beta blockers since she was 1, but other than her heart and off the charts height she doesn't have a lot of the other traits right now.  I would appreciate any information I can get.  I've been to  marfan.org and read all their info, but any first hand info would be great.

[lovemybabies4]

Hello everyone, I have a 15yo with Marfan Syndrome. She was diagnosed when she was 8. At first the Doctors thought she had Ehelers danlos but after testing was diagnosed with Marfan. It was a difficult process as it was passed from her father, who was adopted. We had to locate his bio family to see where it was comming from. We found out that his bio dad, sister and nephew all had the same. His dad and sister have passed away due to the condition at a fairly young age, 45 and 30. My daughter father, my ex, was also diagnosed with Marfan at the same time. It was a blow to get the news on both of them at the same time. My daughter, Renae loved to do sports and was playing on a soccer team at the time, which we had to put a stop to. We decided to tell her EVERYTHING about it so that she would know what was going on. We also decided together to let her live as normal of a life as she wanted, which does include certain sports, but we also inform ( more to the point, educate)the school so that if she feels like she needs to take a step back and relax they understand why. I have found that to be a hugh relief on my part when she is not with me. I know there are other people there that know what to do or how to take care of her till I can get there. It gets tougher as she gets older especially with her physical development. She has a mitral valve prolapse w/ regeritation, tricuspid valve prolapse, sever arched palet, cataracs in both eyes, and her chest wall is colapsing in on her lungs and heart. When you look at her its odbious to see the symptons with her down slant eyes and extreemly long arms, legs and body. Right now, thank GOD she is not on any meds but I know this will change soon. We go in yearly for her echo and EKG to monitor the dilation. There has been some in the past 7 years but not to the point of a valve transplant.

I wish all of our children the best. Please feel free to contact me if you have any questions. I'll be happy to help in any way I can.

[jumpinfeetfirst]

I have Marfan Syndrome and so does my 7 y/o son Micheal. He is the youngest and the only with that inherited it from me. I was a genetic mutation, always the oddball of the family! We haven't been through too much with him as of yet but I know it's coming. Poor kid wants to do so much and he just doesn't understand why he can't. Everytime we go to the doctor for a check up he says "Are they going to give me a strong heart today?" It breaks mine every time. I get some support from a Yahoo group but I'm always looking for more!

[damasand]

My son Mason is 4 years old and was diagnosed at age 2.  Luckly for my huband the diagnoses lead to the discovery of his Marfans.  My husband vince had a aortic root replacement surgery in Oct and he has been doing well.  My youngest is also on a Clinical study for heart medication at St Louis Childrens Hospital.  My husbands doctor is at Barnes Jewish hospital in St louis.  We have been very fortunate with their diagnoses.  My youngest went to Shriners and they are the ones that helped dignose Marfan Syndrome.  I would want to know why doctors would wait to test a child that is likely to have it..  Early dignoses is the key to this disease.  As many problems as my son has had, I wouldn't wish this disease on anyone.  We have to let people be aware of this disease.  My son has had two hernia surgeries and a eye surgery due to this disease.  He has that flexiblity disease as well. 

[RBallard]

Hello, I am 22 and I have Marfan's Syndrome, I was diagnosed when i was 11. I have a son who's almost 3 who is going to be tested soon. So I'm keeping my fingers crossed that he doesn't have it. I am currently pregnant, so I, of course, have like a dozen doctors who want to see me, that's not counting the residents and interns who want to use me as a learning experience. I do have mild dilation of my aortic root. I inherited it from my father who died last year of an aneurysm, he was 55. My husband and I are hoping that our son doesn't have it. Maybe we'll get lucky.

[glam_o_heart]

I dont actually know 100 % if my daugher has Marfans yet... but my husband does.... Im constantly wondering if she has it too... She has alot of the characteristics (sp) ..that he does.... But I dont want her to have the test just yet.... She will be 2 on Sunday..but she is already as tall as most of her 5 year old cousins..she has long arms and legs, fingers and toes. She has dark circles always under her eyes, and the roof of her mouth is high......... I try to tell myself that its just because she looks like him but I imagine that she does have it.

 

Something that I was wondering though..... my husband didnt really find out until the past year...when he was 23 .... so What kind of restrictions would she have? I wanted to join this group so i could talk to other moms who kids have it, so i can know what to expect if she does have it ??

[damasand]

My son was diagnosed at age 2.  You really should get her checked as soon as possible.  My son is on a clinical study to help in the size of the aortic root.  As far as restrictions it matters on how serious the syndrome is in your child.  Mine will never be in regular sports or regular PE in school. I am glad we know it now though.  So that way we don't  have something tragic happen at a regular sports event.  I would rather know when he is young then get him started in some sport and have all of it taken away.  My oldest is a black belt in Tae Kwon Do and thank goodness does not have Marfan.  I say that just for the fact I wouldn't want to take all that hard work from him.