Shelby, I am so sorry to hear that is what your doctor told you. What I would say, is that I really would try not to worry until you’ve had the EEG done. I do know that infantile spasms have a characteristic motion known as jack-knifing where the baby tends to bend at the torso, not usually just movement of the head or an arm like you describe.
Also, has Justice been on track in terms of development? When Hailey’s Sandifer’s was undiagnosed, I mentioned to my ped that I was concerned about infantile spasms, since a mom on this site had just had her son diagnosed. He told me that he was not at all concerned about this, because even though infantile spasms usually emerge between 3-6 months of age, severe developmental delays are usually noted much earlier when babies just don’t meet their developmental milestones such as holding up their heads, or their trunks, smiling etc.
I really hope that you’re just dealing with Sandifer’s and that the sleep problems are reflux related. What you describe sleep-wise sounds so much like Hailey was back then. I hate that you are having to worry probably for nothing. (Though you know my mantra, that I always think it’s better safe than sorry).
Again, I’m so sorry that you are having to worry about this, especially since your doctor is yet to see the movement that you’re concerned about. I would still try to capture it on video so that you can show the neurologist, and perhaps he can put your mind at ease even before the EEG. When is your appointment?
I’ll be thinking of you and praying for Justice.
s&h’s mum2006-10-3 14:54:42
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(it souinds good anyway). He deserves a break and so do you. Hope you get some answers today.
to you both
