We all probably do the same thing:
I have resorted to the expertise of the other families on many occasions. I would like to have their replies posted so if anyone in the future may have the same questions as I, they may get immediate answers. I trust and have full faith in all the other families because we share the same goal, to help our wonderful little children through this the best way that we can. There is a lot of information out there and often it varies somewhat from family to family, maybe because the children themselves are so different in their own little ways, but also partly because the professional world is so ignorant to SMA, that they do their best to treat the symptoms in ways they have been taught for other diseases. Also, professional training is so different from school to school. Nevertheless, personal experience from those who care the most and are willing to put their all into finding out what is the very best, is what I choose to be the best most affective way.

I will continue to add any information I receive in the future as Crystal grows and has new issues or even if there is an existing problem that is newly discovered.

Stephanie Price (amino acid diet)
Mary Bodzo (amino acid diet)
Dawna Seavers
Krista Scurria (is a physical therapist)
Sample P/A from Dr. Bach for Amino Acid Diet
Dr. Richard Kelley (amino acid diet)
Letter from Stephanie Price to Crystal's dietician about the amino acid diet
Amy, an FSMA contact who is also a physical therapist
Sandy and Bob (insurance and physical therapist options
Chad & Angie Barnett: G-tube and sodium butyrate
Ethan Barnett's diet
Joshua Scurria's diet
Jennifer Majors: Spinal curvature
SMA statistics: Strength gain.
2002 Conference workshop: Orthopedics by Dr. Grayhack
                     Thinking Positive: by Al Freedman
                     Accessible Housing: by Garrett and Naiditch
                     SMA type 2 under 5 years old: Talk it out.

Hit Counter