Tired, cranky, aggitated

That's how I feel lately. I'm annoyed with pretty much everyone and everything. I think it stems from 1st trimester tiredness and a 2yo who won't sleep. I swear if I could even get a decent nap I'd be a new person.

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 ever without first looking for a medical reason for nightwaking! He went as far as to ask why I made an appointment with an ENT. The reason should have been obvious, to have her adenoids looked at and talk about sleep apnea. The bottom line is he just doesn't have enough knowledge or experience when it comes to Down syndrome. The suggestions he gave me I could have gotten from any general practice pediatrician.

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.

Blood work do-over

When I took Goldie for her 2 year check-up, I made sure to get a script for her bloodwork. I asked for thyroid and CBC. We go to the Children's Hospital satellite because they are the only people I trust to stick my baby. Her arms are very chubby and they have to go by FEEL because you can't SEE the vein. Well, Goldie was awesome, but it took a loooong time to fill the tubes. I had a bad feeling about that. The next week I called to get the results and they told me her blood had clotted before it got to the lab,so we have to do it all over again. I hate checking something off my to-do list only to have it added back on. And they billed our insurance for it.

Instead of going back to the ped. for another script, I decided to wait until next week when we go the DS clinic and have them write up the order. I'm going to ask them to add the Celiac panel and zinc. Anything else? What do you check you kid's for?

Goldie's 2 Year Check-up

I took Goldie for her 2 year check-up with her pediatrician this week. I have to start by saying how much I love the group I take my girls to. I've been taking my kids there for the last 7 years. Prior to that we tried 3 different practices. Some people think I'm crazy for driving almost a half hour when there is a pediatrician less than 2 miles from my house. Who happens to be a good doctor, she just wasn't very good at telling me, the mom, what was going on. I've never been good at just blindly following directions. I finally got to the point where I decided it was worth the drive to find a doctor I could trust with my child's life. In the last 7 years the girl's dr has added two more doctors to his practice. They are both just as wonderful as him. I am amazed at their thoroughness, they don't miss a thing! But the best part, is they trust me as a mom. If I tell them I think my daughter is sensitive to dairy, they believe me. They've never been dismissive and are always open minded. Another thing I love is how calm and relaxed they are with my children. When I found out Goldie had Down syndrome I was so relieved that we had a good pediatrician already.

So, I asked about Goldie's platelets and was told it was probably a side effect of the anemia and her numbers are no where near what they consider high. I got a scrip for her 2 year labs. A couple of my readers pointed out that I may want to have her zinc levels checked. I'm going to look into that and may stop at the ped and have them add it on. Goldie has an appointment at the DS Clinic in May, so I'll be getting her blood drawn sometime between now and then. I drive 1/2 an hour to the satellite of Children's Hospital because they are the only people I trust to stick my baby.

I also got a scrip for Goldie's Sure Steps and a referral to an ENT. Her left ear needs cleaned and the pediatrician wants it double checked for fluid. I had her hearing checked in December and the results were normal. But, I was sitting in the booth with her and she did not respond to all the sounds on her left side.

Next on the list is that she can't seem to sleep for more than 1-2 hours, so I'd like to see what the ENT thinks of that. She doesn't sound like she has sleep apnea, but I need to rule it out so I can figure out what's going on. Another possibility is that because of her low vision, she's not getting enough light in through her eyes to properly regulate her sleep cycle.

No shots, we vaccinate selectively, so she is current on the ones that we get.

I just realized I forgot to ask about something, mostly because its become our normal. When Goldie wakes up she is very floppy. It almost looks like she's drunk. We can't let her walk and if she is sitting she will repeatedly fall over. It freaks my mom out, but I thought it was caused by her low tone. Right?

And because I feel like posting a picture, here's how my kids sort laundry. Where's Goldie?



This is her after waking up from a nap. She fell forward and went back to sleep.

Elevated platelets?

Goldie had her routine blood work done back in September and her platelets were 432. I think that should be in thousands. The normal range is listed as 156-369. Her iron was low so we treated it and had another CBC in January. That time her platelets were 421. I was told by the GI doctor that this was slightly elevated, but could be due to her having a recent infection and not to worry about it. (Her blood had been drawn about a month after she had strep and an ear infection) Well, then I went and compared it to her first blood draw and saw that it had been higher in September. I'm pretty sure she hadn't been sick then. I found information on low platelets, but can't seem to find anything on elevated platelet counts. All her other numbers were in the normal range. Any ideas?

Goldie has her 2 year checkup this week and I've got my list of questions for the pediatrician. She also has an appt at the DS center in May, so anything the ped. can't handle I will save for them.