Hello everyone, My name is Shelley. I assume most of you have felt these same feeling as I do...only I do not realy know what it is like to walk in your shoes....I have a differnt veiw on this horrid diseas. My child has been diagnosed with a "posible dysautonomia"...I put it in quotations because I do not think they ( her many doctors) have a clue what is going on with her and these quotations looks good on paper? I am very emotional...and will try not to ramble. I have many hard questions that I need answerd, and if anyone knows the answer please spare nothing, because being in the dark hurts worse than the truth could at this point. First let me say that we have tryed to get into this countrys leading doctors for evaluation and a real diagnosis...I am hoping to hear back from Dr Freidman in Houston this week...Dr Grubbs in Ohio reffered us there after not being able to get to New York to see Dr Axelrod. I pray this dr dose not fall threw because I need some answers befor I emplode. My daughter will be 3 in May. She is the sweetest thing you could lay eyes on. She has a list of diagnosis a phone book deep. At first glance she looks like a average one- two year old. She is small for her age...maybe genetics...maybe her health issuse? She can walk, talk, reason. She has come a long way in the past 2 years scince she started therapy. She has made progress that makes my heart beam with pride for her. To look at her you would not know she has a feeding tube under her little frilly dress....or a heart monitor wraped around her toe. When we fix her hair just rite you cant see how this week she has bald patches coming back. And unless you look real close you wont see the millions of little holes in her finger tips where we have to take her blood sugar 6-8 times a day. These are the things you cant "see" the other things you can see are when others who are her age or worse...younger can walk up a flight of stairs...or play for longer than 10 minutes with out having to sit down and say... " mommy my heart is breaking...lay down with me" .... or have to stop playing to have to take more medication than most adults will ever take in their whole life. There is much more...but I did promas not to drag this out. I want to ask some questions. They my not be easy to read...or to answer. If you know the answer...please inform me....please. Again.....these are tough (almost morbid to some people) questions that I need to know. I need to know what im looking at...Im a single mom..he left when she kept getting sicker and sicker. He did not want a less than perfect baby...and now im on my own...and these questions are ones that are better if you have some sort of a answer befor they broad side you on some idle tuseday............ Is there a "birth dysautonomia" ? What is the life exspectancy for these babies who are born with this. If these kidos do have a shorter life span...what is the average age. Dose anyone know of a child who passed away from this diseas, was it a hard death? By that I mean did the child suffer or go quickly, peacfuly in sleep Is there a cure? What is the salt for? She has labs come back many times that her sodium is low...should this alarm me? Why dont doctors know about this diseas? All of my daughters drs say this is best handled by her neurologist...not her cardiologist? She has tachycardia....dose she have to have POTS? Ok...I realy could go on and on with all the questions I have, the ones that have been buring threw my soul I have coverd. I apologise if anything is offensive....my bluntness or the way I may have worded somthing. My daughter has a twin who we lost......on a idle tuseday...so i try not to hold back questions, even if they are tough and uncomfortable. Thank You, Shelley Parks
