Sandifer's syndrome part2 * 2012 UPDATE*

this is a better video of Grant having an "episode" that was later diagnosed as Sandifer's syndrome. After we saw a GI specialist we found out that he has severe reflux and dysphagia as well. *UPDATE* I just wanted to post an update...... Grant is now a little over 3 years old and we have had one heck of a bumpy road and many up and downs. If I go past thick it or  simply thick at the pharmacy I still have a panic attack and break out in a cold sweat! However he is doing better thanks to his wonderful GI dr at UNC!!! Grant's GERD( reflux) only responds to high doses of meds. He was on prevacid until a generic solutab came out and those didn't work for him:( He is now on Nexium 30 mgs a day and Periactin ( 5ml 2x's a day) to help stimulate his appetite. He is still small 29 lbs at 3 years old but every day that he gets his daily calories is a win in our book:)  We have also started him a a gluten free and dye free diet which has helped w/ his behavioral problems that came out of his food aversion. If your baby makes any weird movements that seem not right to you  go to the dr or ER. SEE a SPECIALIST I CAN NOT stress this enough!!!  Regular peds drs don't deal with severe reflux or even spasms enough to know which is which! Today Grant is a funny, smart, train loving blonde hair blue eye little ball of fire. We love him with all our hearts and wouldn't change him for the world but those of you who have lived the reflux rollercoaster know it strains a family and YOU are not alone! Send me amessage if you have any questions and join an online support message board. I LOVE IRD ( infant reflux disease message board) those ladies have helped and still do help me on a daily basis!

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