7 answers

Seeking Moms Who's Children Have Marfans Syndrome

My 10 yr old son has just been diagnosed with Marfans. I have 2 other children that I am 99% sure will also be told that they have Marfans.
My 10 yr old was very active with Soccer and Flag Football. Now he is not allowed any contact sports. The school has taken this to the extreme and he is not allowed to go outside and play incase he gets hurt.
I am looking for any and all advice.
feeling alone
S.

What can I do next?

So What Happened?™

My son has an enlarged aortia and it measures at 3.48cm. I did speak to the school and they have agreed to let him play outside as long as he can stay within his limits. So that is a step in the right direction for the moment. My THANKS to everyone who answered. I appreciate your input. If you have anymore advice please email me here - I would love to hear what you have to say. Again....thank you

More Answers

I too have Marfan Syndrome. I was diagnosed with Marfans when I was 24 years old ~ right after my lung collapsed for absolutely no reason, which is a symptom of Marfans. I was at Northwestern University and they put me through a bunch of tests and found out that I have all the main characteristics of Marfans. It is a very serious condition and the aorta in the heart can rupture causing death instantaneously. Therefore, that is why the doctor has told your son to avoid any contact sports. I think that the school has taken it to the extreme because he is still able to go outside and play, but he just has to avoid any type of physical activity that involves lifting or anything really strenuous. For exercise I am only allowed to do aerobic type activity as well as running, walking, swimming, but absolutely no strength or weight training.

Make sure that no matter what, your son goes to see a cardiologist ASAP if he hasn't already. He needs to go every year to see the cardiologist so they can listen to his heart as well as do an EKG. Every two years I also need to go for an echocardiogram and also an MRI of my heart. These tests can detect if there are any changes in the aorta and it looks like the aorta is starting to rupture, they can repair it right away.

Also, be sure that you and your husband get tested as well. Marfan Syndrome is an inherited condition and there is a 50% chance that your children will get it. My grandfather died in his sleep of what they thought was a heart attack, but my cardiologist believes that it was Marfans that took his life. Not many people knew about the condition back in the 70s and therefore, did not know what Marfans really was.

I am not able to have any more children due to the Marfans and in fact, should not have even had my daughter. I did not tell my OB/GYN that I had Marfans ~ I really didn't think that there was any reason for him to know. When I told him right after I found out I was pregnant due to some genetic testing he wanted me to go through, I immediately was put under the care of two high-risk OB/GYNs. Because of the stress that pregnancy puts on the heart they were concerned that my aorta could rupture. I also had a scheduled C-section due to the fact that they didn't want me giving birth and straining the heart even more. I am telling you this because if your other children are girls and do in fact have Marfans, then they need to know the risks involved in pregnancy when they get older.

I was not aware of how serious Marfan Syndrome really is until I had my daughter. I now have a wonderful cardiologist who I see regularly and also am much more aware of what I can and can't do to make sure that I don't put too much stress on my heart. Please feel free to e-mail if you want more information or just need someone to talk to: ____@____.com care and know you are not alone!!

1 mom found this helpful

Hello there. My 7 yr old daughter was diagnosed with Marfan Syndrome. She has already had one lensectomy and will have the other in two weeks.

Her principal, the school nurse, and I are meeting this Thur to discuss does and don'ts. Please do not take it to heart do to the fact it sounds like they (school) has your child's interest first (which is what it should be).

I talked to her PE teacher, her reg teacher, and the secretaries at school and I am going to create a spread sheet for each one. This way we can have specific data for when we see the cardioolgist.

My reg email is ____@____.com. Please feel free to email me directly anytime. Trust me, for a while I felt that we were the "only ones". It is normal.

C. R

1 mom found this helpful

Hey S.,

Last year in March my Adult cousin passed away. he lived a very full and active life with Marfans disease. He did not do sports, he never was the athletic type but he was active in so many other things. If you have all the info from your doctor and you inform your son properly he too will learn what he can and can not do. Since this does involve the heart just be sure you watch him closely.
Now my other cousin(his older brother)also has it but not as severe, he has passed it on to his son, who has it to the same degree as the cousin that passed. The son is 12 he plays soccer, baseball and a few other sports, he is a mild mannered kid but over all very active.
If you have any other questions let me know and I will talk to my cousins and see what they have been going through with AJ. Good luck and God Bless.
By the way did you know that Abraham Lincoln also had Marfans?

Hi there -
My cousin has Marfans. He played basketball all through high school and Marfans didn't affect him until he was about 40. He's in great health now and very active, a father of an adorable two year old! If you like, I can check with my aunt for resources for you (____@____.com)

S.,

Sorry to hear about your situation. I have no advise but I wish you the best of luck. Please keep us posted.

L. Z

I don't know what Marfans is, but you could ask his doctor to write the school a detailed letter saying what your child is or isn't allowed to particiapate in at school. After your doctor does that, if the school still doesn't allow your child to particiapate you will have the right to conact a lawyer about why they are doing this. If this syndrome affects his learning abilities, there are also special education laws that can protect him.

There is a group called MUMS. They have a chapter here in Illinois. If another family with a child that has the same diagnosis registered with them MUMS will put you in contact with the family.

In regards to the school, your child would be most likely covered by Section 504 of the ADA. At some point you may want to let them know that you want to have a meeting so that they will accomadate your child using your input rather than just a unilateral decision based on what they think is best.

I too am parenting a child with disabilities but they are much more severe and very different from your child. If you need someone to communicate with contact me at ____@____.com

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