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Answering the common questions

Posted Jan 27 2009 6:30pm

Frequently, I am asked questions regarding Aiden's health. Here are some of the most commonly asked questions.

Q: What is Aiden's diagnosis?
A: Aiden has a myriad of diagnosis. His main diagnosis is Trisomy 21 (aka Down syndrome). He has a lot of the characteristics of T21. He has almond shaped eyes, a singular crease on his palms (known as a simian crease), he has low set ears, a flat bridge to his nose, Brushfield spots, low muscle tone, and a small lower jaw. (No, children with Down syndrome do not have a "larger" tongue than most. It is just with the smaller jaw, thier tongues "appear" bigger.) Aiden also has several heart defects that are common amongst children with T21. Aiden was born with an AV Canal defect (holes in both the atrial and ventricular chambers of his heart), Tetralogy of Fallot, a leaky mitrial valve, and a hypoplastic right ventricle. Aiden has heart surgery earlier this year to repair the AV Canal and ToF. Since Aiden's surgery, he has developed atrial tachycardia, chylothorax, right plural effusion, and pulmonary hypertension.

Q: What is chylothorax?
A: Chylothorax is a tear in the thoracic duct. The thoracic duct is what "transports" fats through our bodies. In Aiden's case, he is unable to "break down" these fats and absorb them into his body. Instead, the long chain fats leak into his chest cavity.

Q: What does Aiden eat?
A: Aiden is on a special "low/no fat" diet. His formula is a special order formula called Portagen. This formula has no long chain fats, they are already broken down into medium chain fats. Aiden is also starting on table foods that are low in fat. He loves to eat ice cream, sherbet, mashed potatoes, sweet potatoes, cheeses, and anything that I will allow to get near his mouth.

Q: How many doctors does Aiden see?
A: Currently, Aiden sees a pediatrician, two cardio-thoracic surgeons, 8 cardiologists, an opthamologist, an ENT, two physical therapists, two speech therapists, an occupational therapist, and a vision therapist.

Q: Why is Aiden so small for his age?
A: Well, children with Down syndrome are generally smaller children. Add on top of that, Aiden was 6 weeks premature. Now add on top of that his heart conditions. Before Aiden's heart surgery, most of his calories were being burnt up by just keeping his heart beating. Now add on a low/no fat diet. Also, I'm only 5'2".

I hope this answers most of your questions. If not, feel free to ask more and I will respond.

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