I by no means want to seem hopeless, but I'm in Austin, and Brakenridge, the university hospital here, left me pretty hopeless by telling me how excited they were, that I was the first case they had ever seen and they were unsure what to do. They were contacting specialist from all over the world for advice and ended up just putting a suction tube down my throat into my stomach for like 4 days until I stopped vomiting and discharged me with no follow up. Not something you want to hear from the people that are treating you. I'm sure there are more and more doctors treating this disease now that it is becoming a little more known, and I truly believe it is not as rare as thought to be, but misdiagnosed and just hard to find. Each case seems to be so different and has different symptoms. I don't have continuous lengthy bouts of SMA, I have short flare ups like 2-4 times a year that just last a couple of days. I have luckily been able to control mine with diet, what and how much I eat and have to just stop eating when I feel it coming on.
I just turned 40 this year and am so sorry to hear your young son is dealing with this and I pray he gets the help he needs so he doesn't have a lifetime of this. The discomfort I now associate with the disease, I realize I have felt off and on my whole life. Being that I can sorta control it and I don't have insurance, I guess I haven't been looking for the help like I should, but will have to have surgery at some point. I know others have no control over it and their quality of life gets to the point where they have no choice. If you do find any specialists in this part of the country, please feel free to pass it on and I will do as well.
If there is anything I can do feel free to contact me! Much love and praying for you and your son, Amanda Field