What else...we finished the 10 days of provera and her uterus finished getting cleaned out. She did not like that experience and had some cramping I think. Thankfully we only have to do it every 3 months.
We had an appt with endocrinology yesterday. We are going to start the levothyroxine (thyroid replacement). When she was a baby she was diagnosed with Partial TBG deficiency. They said that you couldn't treat it because it would cause brain damage. Tests have improved in the last 10 years. 10 years ago they tested total T4. Now they can test Free T4 (which is the active T4) and they can treat the Free T4. So her Free T4 is low and has been declining over the years. It is not in the low range yet, but is on the border of being low.
Her TSH (Thyroid Stimulating Hormone) stayed the same even though her T4 was down. The TSH should go up if the T4 is down. This tells the Dr. that the pituitary is not stimulating the thyroid.
The Dr. said her pituitary could just be maxed out (meaning it can't produce any more per day than it already is), or it could continue to decline.
We will start the Tyroid replacement and do blood work in 2-3 months. A low functioning pituitary could cause low heart rate, constipation, low body temp and sleepiness. All of which she struggles with. So I hope and pray that this will help.
We will do bloodwork on the pituitary and cortisol in 1 year.
She thought we should see changes (if we are going to see any) in her temps, etc...within 2 weeks.
She agreed that her growth plates looked to be about a 13 to 13.5 year old and the growth plates typically fuse by age 14. So we will continue the estrogen for 6 more months and we should be done. In 6 months we will do another bone age scan.
The bad news is Dr. Murray (the endo Dr.) will be gone all of Oct, then she is only coming back part time. If she is gone we are supposed to see Dr. Foster. Dr. Murray said Dr. Foster has done even more of "these cases" (starting puberty to fuse the growth plates) than she has. I'm sure she is fine...but I hate switching Dr.'s.
Ellie had an awesome Opthalmalogist and he left last fall (I think) and I haven't had the courage to search out a new one. He was so good...it is hard to imagine anyone else being as good as he was. We are open to suggestions...but don't say Hoffman. He's good...but tooooooo busy.
Last Sunday night she was breathing all congested and then in the car (laying down) she starting coughing up white foamy stuff. (We have a lay down car seat that she can lay on a bench seat and be strapped in). I really really thought she was coming down with pnemonia. And then I was feeling all guilty because I took her in on Thursdayish to an OT appt for a feeding evaluation because I want to start feeding her orally again. (Did that make sense? I took her to the Occupational Therapy appointment where we fed her orally for the first time in 2-3 years. Then a few days later she was all congested and coughing up stuff so I thought for sure some food had gone into her lungs and had turned into pnemonia). The next morning...she was completely fine. No congestion, no coughing, nothing. Weird!!! She has been more sleepy this week...but who knows? Now that her ear is draining...I'm thinking maybe that was the cause of everything?!?!?!
So now on to the embarrassing story of why she was laying down in the car. Just before school ended the 6th grade was having their own field day. Well being the good Mom that I am I signed up to help and also to bring 50 filled water balloons. They were having their field day at a local park. I filled the water balloons and had them in a cooler. I took them to the park and unloaded them. Once the teachers got there they said the water balloons needed to go on the other side of the park. So I put the lift out of the side of the van (so the lift was horizontal) and I put the cooler on it and I left the lift sticking out (on purpose). I was only going around the corner. There was a truck parked on the side of the road. I went to parallel park in front of the truck and I forgot that the lift was sticking out. I scratched the trucks rear and front wheelwells and completely ripped off it's front bumper with my lift. And it messed up my lift so that it does not work now. To make a long story short...no one got hurt...insurance is going to pay for repairs (minus the $250 deductible)...and it wasn't one of the teachers cars (thank goodness).
PS...if you have a modified van (lift, tie downs, etc) make sure insurance knows about them and you have them covered on your policy so if your vehicle (or lift) gets damaged they will be covered. Thankfully we had done that when we bought the van.
PPS...you can buy or borrow the lay down car seat straps at PCMC. We borrowed them first...for a long car trip. So she could sit up and then lay down every 2 hours alternating. You can also use them for spica casts, etc...if the kids can't sit up. After we borrowed one we knew we must have one permanently. They normally cost $100, but they sold it to us for $50 or $60. We use it a few times a year and it is really nice to have when you need it.
1 comment:
I'm sorry she had to take that Provera. I was on it when I was trying to get pregnant. I forget with which kid now. I've been on so much crap over the years. I do remember the Provera was no fun. Thanks for the tip on the Wi fi at PCMC. Made waiting for Khi to get out of surgery much better.
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