As with Haven I started searching at the age of 2. Knowing something was wrong - gaining massive amounts of weight after being underweight for 2 years, constant stomach pains, constipation, eye problems until it turned out, breathing issues - EVERYTHING!!! I will pass along Sophia's information to all the other ROHHAD mom's that I know. We have our own support group going since there is nothing out there for us!!!
Please send your thoughts and prayers to all of these children - they definitely have a rough time ahead of them! We love you Sophia!!