Sunday 23 October 2011

Olivia's Medical Update!

This week we spent quite a bit of time at the hospital or the doctors office. A while back we were referred to a pediatric endocrinologist (children's doctors who examine failure to thrive) it was a three month wait to see this lady, and we finally got in. The doctor met with Olivia and I for about an hour and then ordered some tests at the hospital to see if we can figure out why Olivia is so small. Especially in relation to her other two siblings (both in the 75th percentile of growth).
  • We did chromosome testing--so looking at Olivia's DNA to see if there is something genetically programming her to be small (like if you are meant to be a dwarf etc..). It came back fine.
  • We did an allergy test to see if her failure to thrive was the result of some kind of food or pollen or whatever...she came back clean.
  • We did her third Celiac test (one positive and one negative so far....got a second negative, so we are putting that hypothesis to rest).
  • We did a lumbar scan (on her back spine) to see if there was something off contributing her her constipation...still can't figure out the "cause" of Olivia's constipation/ inability to correctly digest food. Which is probably contributing to her overall growth. Her lumbar scan came back fine.
  • Last of all we did a bone density scan- to figure out what age her body has developed too and then compare it to what age she actually is. She came back with a bone density scan of a 6 year old (and she just turned 8) so she is two years behind in growth....which I knew because I HAVE a 6 year old and they are the same size :-)
Next we talked about options. Now that Olivia has made it onto the growth charts (3rd percentile) she no longer qualifies for growth hormone shots. Usually you give these before a child has her period because once she has her period her bones will fuse together and she will no longer continue to grow.

The other option we discussed was giving her a hormone to delay her period so she has more time to grow. They said because Olivia is at the bone age of a 6 year old, she should experience menses two years after her peers. They said it would probably be around 15-16 year old. IF she makes it that long, the maximum height she will be is 5'3"....which is what I reached at 11 years old (when I had my period). This sounds good to me except menses is somewhat hereditary, and since I had my period at 11 years old, if Olivia were to do that she would be under 5 feet tall.

The plan would be to take Olivia's blood every 6 months, and once she is about to have her period introduce this hormone to postpone it so she has longer to grow. It sounded fine to me, until I met someone who had it done and once their period was postponed it just never started....which for my friend means she can't have kids....this girl had stuff done in the 80's when they were still experimenting with it. BUT I am wondering which option is worse

(1) Possibly be under 5' your whole life--If your parents choose to let nature take its course.
(2) Be shorter than your peers your whole adolescence and then have your period delayed for a few years.....So you can reach 5'3" ....Your still in a training bra when your learning to drive... and might not ever get your period...or be able to have kids.
(3) Try to find a doctor who will give you a hormone shot NOW so you can catch up to everyone, and develop normally with everyone else.

We do have one question about growth hormone shots; When they said we don't qualify we are wondering if this means we can still pay for them as this country has socialized medicine and a lot of medical help is around qualifying. If we pay out of pocket (insurance wont cover it if you don't qualify) it would be about $1,000/ shot and the shots are needed once a week :) In addition, we hardly know anything about the risks or side effects of growth hormone shots so it is hard to make a decision when we can't get info about etc...
Anyway, what are your thoughts?

7 comments:

Harry and Suzanne said...

First and foremost, we have to put everything before our heavenly Father for guidance and we need time to digest all you said. Putting the height aside for a bit, we are thankful Olivia is healthy in other ways according to the medical tests. Check out Mayo Clinic, Johns Hopkins Hospital, and any other teaching hospital to see what else may be available. New things are discovered each and every day. Sometimes your own medical doctor may not be aware of these advances. Five feet three inches is okay--look how wonderful you turned out. But, if there is something out there which can help it has to be researched and researched. Olivia is a beautiful girl, is smart, has a heart of gold, and is sensitive to other's needs. Alisha, you are a great Mom, and you are doing an excellent job in getting to the bottom of not thriving in the growth area and all other areas. You, Stan, Olivia, Mary, and Thomas remain in our prayers. Please let Olivia know how very special she is to us and how very much we love her.
And....we love you all too.
We e-mail other thoughts to you.

Daniel said...

Big decisions. We'll keep you in our prayers.

Amanda said...

First of all, HAPPY BIRTHDAY OLIVIA! 8 is great and so are you! We love you and miss you! Millie talks about you and Mary all the time. One day we hope to see you again.

I am so glad to hear that Olivia is healthy, allow sometimes I am sure you just wish you had an answer. Like Suzanne, I was going to mention that you contact the hospitals that are doing studies on a daily basis.

sue swinton said...

I just say AMEN to Harry and Suzanne. Really GREAT advice! Olivia is oh,so special - and 5' or "5'2, eyes of blue..." (as in the song) is OK by me. My best friend in college was barely over
5' and all of the guys were after her. Love you

Heidi said...

I would definitely check with some hospitals in America or Europe, where you have to pay impossible amounts of money, but at least you get told all the options. And then if it were my child, I would opt for letting her be petite over possibly sterilizing her forever. But you're her Mom, and I know you'll make the best decision for her!!

lrbodine said...

That is a hard decision! I'm sure you will be led to the right decision. I would keep looking at options and pray! But my MIL is only 4'9 and married someone well over 6 ft and all the kids have been tall. Being short is not the worst thing ever but obviously you want her to keep growing!

Jess, Andrew and Family said...

I wish I had some good advice... we will keep you guys in our prayers though.Olivia is so lucky to have you guys as parent's- you are so smart and will do what is best for her!