Heart problems

[kkunzie]

My 18mo od daughter with downs was born with a hole in her heart. She had surgery to repair it. But now she is still having pulmonary hypertension. Iv asked advice on the cardiology forum. And now Im wondering if any of you have had a child with sleep apnea that affected thier heart and lungs this way. My daughter goes in for a sleep test next week, and many other tests to come. Its going to cost alot, and any advice is wecome. Do you know of any other places to broaden my knowledge in this area. Somehow I doubt its due to muscle weakness, but it made me put in a topic. Thanks to those who reply to this. Most appriciated.-Mrs K

[SimplyStar]

A large majority of children with DS are born with heart defects, my son had a murmer and after listening to all the specilists I decided to try and exercize him, beginning at about 2 months I would lay him on his back and pump his legs up and down and also raise his arms above his head and down to his sides, I did this daily.  His murmer  could not be heard  by the doctor at age 3. However with the pulmonary hypertension, this may not be advisable. Is your daughter heavy?  Most sleep apnea patients that I have cared for showed improvement with weight loss. As far as help goes, contact the ARC in your area, they will be a great help to you, as far as costs go, there are many very willing agencies that will help with the costs of caring for a child with a disability.  Good Luck to you.

[SimplyStar]

At 18 months she is too young for school, she has to reach the age of 2 years before she can attend school. If your state offers this, we had to fight the system to get this started here. Get in contact with other parents of children with disabilities, as a group with similar interests you can learn and get alot done.  I took Chris to the University of Iowa when he was two to get a complete evaluation,  at a state supported college, the fees are less or sometimes free.  Does your state have a state college with medical facilities?

[kkunzie]

No, she is not heavy. Infact quite petite. She may not have apnea, she was only tested for it on the 9th. We havnt heard the results yet. What agencies will help with costs? Certainly not the ARC? See my other comment posted today.
Mrs.K