Heartbroken and Not Sure What To Do

[Blackcat31]

I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.

Oh, I gottcha... I wasn't understanding who it was that was making it seem like "not such a big deal". Hmmm, I wonder why the cardiologist would present it that way. I would think that any type of stress or crying or anxiety or a wole bunch of things would or could make his aorta stretch more or at least play a part in effecting it somehow.

I wish I had some better advice for you. This whole situation is sad and I know if I were in your shoes would be just as conflicted about it as you are.

Maybe the best thing to do, is provide the 2 weeks trial period and then just not do it anymore. I KNOW that is the route I would take. I just wouldn't be able to handle the what ifs.... :confused:

[nannyde]

I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.

I don't know JJ

I got a feeling that their downplaying this is because they want him enrolled as a regular child not a special needs child. If it's "no big deal" then you have no more liability than any other kid.

It just feels wrong to me. It feels like they are trying to get you to take care of him with the knowledge that he is a special needs child but when the actual care of him comes into play they want you to just charge as a regular kid.

I will be totally honest with you and tell you that my first discussion with the cardiologist would be this worse case scenario: Can his heart withstand long bouts of extreme crying? The doctor needs to understand that he won't have an adult to regulate by action his crying.

[Cat Herder]

This should answer some questions. http://www.marfan.org/cms/uploaded_f...20in%20mfs.pdf

My Training and understanding is such that they won't know how severe the disease process is until full growth is obtained. Aortic Dissection is rare during the pediatric phase of the disease, so they don't know of any true preventative care plans.

If the disease progresses fast enough for a true aortic tear/rupture there is really not much that can be done barring living in a surgical ward with a dedicated 24/7 team. Even then, the chances are low.

It (dissection) is simply so rare in young children, they don't limit activities or participation much at all. Just common sense stuff we should be doing anyway... I hope it helps. :confused: It is one of those difficult/touchy decisions.

Basically you take a child with the understanding they may die while in your care OR they may die at 80. It can be pretty scary.