I have a 2 year old toddler who has been diagnosed with Marfans' (I also have it), and was wondering if there are any other parent's whose children have Marfan's and some of their struggles, with sports extra currcular activities, treatment, symptoms, etc. My son has a deep pectus as well, which causes us some concern. Any feedback would be most helpful.
Daniela

Sorry I can't help with this topic, but I hope that others will join and reply because the answers would greatly aid in my decision making process when it comes to family planning with Marfan's.

Hi Daniela,

I have a 2 1/2 year old son who has Marfan's. He, right now, is mainly affected in his eyes (he has had his both his lenses replaced). But our cardiologist has recomended that we are very careful what activities he gets invovled in since he will most likely be told he can't play certin activities in the future. He had recommended a bunch of activities that are safe and he can control the intensity of. I worry about how, I'm going to explain this to his teachers (preschool is coming up). I need them to be aware but I don't want them to treat him like he could break. I also worry about other kids teasing him due to the height and his one eye is cloudy (side effect of one of the surgeries). Other kids can be so cruel, sometimes.

Anyways, that is a little about my experience.

Besides the pectus, what other issues are you dealing with right now?

Chris

Hi Chris,
I too struggle with the dilema of the activities in life that he may not be able to be a part of throughout his school, and how it may affect how he is looked upon by friends and teachers. What activities did his doctors advise him not participate in? I don't think it absolutely necessary to worry the teachers or schoolmates unless they really need to know.
Besides the deep pectus, his tests for his eyes show no abnormalities, and his heart tests so far show a mild change due to Marfan's but nothing to be worried about thus far. I have noticed he is double jointed in his toes, and may possibly interfere with how he walks----I hope I'm just over exaggerating...I just recently noticed this and have yet to bring it to the attention of his doctor. Either than that he is thriving just as any normal toddler would.
Where is your son being treated? How tall is he??
Our sons are practically the same age, and I would love to keep in touch to compare stories and experiences.
Take care
Daniela