One of the things that hacked me off this week was our visit to the DS Center. I was left with instructions to give Goldie cow's milk, let her cry it out, and a prescription for Miralax. Oh yeah, I almost forgot the flushot. Because a hurriedly manufactured vaccine has to be soo much better for her immune system than breastmilk! Not. I got the kids with DS have weak immune systems lecture. Yeah, well noone told Goldie that and I really don't want her to know because she hasn't been sick in 4 months and has only had antibiotics twice. And I didn't ask for advice on weaning or nutrition so I don't know why he felt compelled to suggest cow's milk. I did ask for information on how Down syndrome could be affecting Goldie's sleep. After the CIO speech I explained that it would be cruel to let a child CIO
If you've made it this far, thanks for reading my rant. The other think that struck me when we when we walked into the reception area were the bulletin boards plastered with research study opportunities for Autism. I think this is great, Autism affects a lot of kids. But, there was nothing for DS. (The NIH just doubled the amount of research funding going to our Children's Hospital. I asked and No none of it will go to the DS center) Then, when I suggested checking for vitamin or mineral deficiencies when writing up Goldie's bloodwork I got a big no. "There's no reason to do that" I left with the overall impression that because Goldie has DS I'm supposed to accept its effects on her and not try to find other causes or solutions. Well, that's not my style. So I've been looking for my own answers. I've found a lot of good info on sleep that I'll post about later.