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.
9 comments:
Oh my. Good for you- you know what's best for her. You're not cranky- you're just following your gut. I'm going to send you a private e-mail.
All that was at a DS center?? That's crazy!
I'd be interested in reading what you've found out about sleep. Kira has slept through the night maybe 7 times her whole life.
I do not envy you going through the 1st trimester. Yuck. I'll definitely envy you during the 2nd and 3rd though!
You are already doing the right things for your daughter. Everything. I even opted to not get the flu shot, and she has had the flu before, but she got through it, like all my other kids. (we still need to get in for a sleep study) I am glad you are still nursing, I think that is great, and hope you are able to as long as YOU want to.
I have also noticed the the non information on DS. I have even tried to start talk about it on a birthboard I am on and in a religious chat group I read, and It ALWAYS turns around to an autism discussion. I would like to talk about DS, like how do I get my dd to understand roads are dangerous, or who else is frustrated with the amount of time that is consumed paying attention to what she is doing and getting into because most likely, she's doing something she shouldn't. ANd how do I make sure I have enough time for my 4 almost 5 other kids.
Sorry, I took over with my rant. I just will end with, I feel you. Chalk it up to hormones and fatigue..... But I get cha.
Good on you for being cranky- serves him right! I thought breast milk was good for the immune system- just one reason why Luke is still partially breast fed. And good on you for not letting her cry it out. Recent research shows it causes stress in infants, and that can't be a good thing. Our kids deserve at least the same amount of care that kids without DS would get from a doctor, if not more.
Hope you get some rest soon.
I just don't think cow's milk is a good option for our kids.I was wondering about goat's milk from goats that have been fed organicly,there is a lady near me that sells it.I don't think Ruby's digestive system will handle the cow milk.Isn't goat milk supposed to be easier to digest?Ruby has already been having some problems with constipation and she only gets breast milk,her pedi. told me to start giving her prunes because she wanted to try and handle it naturaly.
I have let some of my kids CIO from time to time when they were little but not without going to check on them every few minutes,never when they were under 6 months,never when they were sick.I would never let Ruby CIO though because when she cries I can tell she is scared and even if I wanted to let her CIO my kids wouldn't let me:) Ruby always has someone rushing to pick her up if she cries.
I think you are a wonderful Mom!
I'm so with you on not letting them cry it out - especially when not all physiological reasons from sleep issues have not been ruled out/dealt with.
((hugs)) mama bear!
What?! I've never gotten such crap advice at the DS Center. Go with your gut, because you're the mom and you know your child better than anyone.
It is so annoying when doctors brush you off! I could just have a mini-temper tantrum right there! LOL!
I have certainly learned that I cannot assume that a doctor has my child's best interests at heart - If I want answers, I'll have to find them myself...
It must be a global thing - these doctors...
I have enjoyed catching up on your writings about your family. Sorry to hear of her sleep issues. We are struggling with that ourselves with John but almost have him trained to fall asleep with a blanket. And yes, I must admit that we did it by letting him cry it out for about a week. He then learned that he is alright and he now falls asleep himself in his crib. I know this is not a popular strategy but falling to sleep is a learned behavior. Their going to have to learn it at some point.
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