Extra Attention

Do you participate in TrialNet for your other family members?  We do.  Last year we went a few months after C was diagnosed so that E and I could get a blood draw checking for antibodies.  Checking to see if we are at an increased risk for developing diabetes.  Last year we were both negative.  E, being a sibling, can go back every year until he’s 18 to be retested.  E had really good memories of last year because it was the first time we’d heard of using numbing cream to do a blood draw.  Seriously, why don’t all labs do this? At least for kids that are fearful?  We drive about an hour and a half away to Children’s Hospital Los Angeles (CHLA).  They can send us orders to do in our normal lab and have them sent down.  Why do we do the drive?

E has a brother with two chronic illnesses.  Sometimes these illnesses get more attention than he does.  C is always being fussed over and checked on and talked about.  C always has doctor appointments and ‘important’ things to do.  Sometimes E needs to be fussed over, too.

We went on Tuesday after C’s appointment at UCLA.  We’d only be to the enormous CHLA one time before, used a map, and still got lost a few times.  This time, we had no time schedule and told them we didn’t need a map.  E’s reading now, so we let him check the signs for the “Tiger Elevators” which go to the endocrinology department at each intersection.  Every wing has a different animal.  When you get to the elevators, the carpeting will have that animal’s print and the wall across from the elevators is all framed pictures kids have drawn of that animal.  It’s really a fabulous place.

First we stopped at the aquarium to check out their fish.  Then we stopped at the play area to climb on the giant blocks.  There, a woman stopped and told E she was going to read a story if he’d like to hear.  His answer was that he just wanted to get his blood draw over with.  So she gave him a book to take home.

We found our way, got upstairs and went to check in.  I told the lady, “My son’s here for a blood draw for TrialNet” and another lady behind us goes, “Oh! That’s me! Hi E.”  Awesome.  He let her know he wanted numbing cream and got it done.  Afterwards, he got a TrialNet water bottle and TrialNet sunglasses.  We stopped at the McDonald’s (in the hospital) for ice cream sundaes.

So much better than headed to our plain old boring lab and ruining an experience.  He’s already excited about going back when he’s seven.

Here’s the poke he wanted me to document…

So, while in LA we were trying to figure out what to do.  What does E decide?  Well, we’d just watched LA Ink the week before where they had a new mural painted on their back wall.  The guy who did it was phenomenal and only used spray paint.  E was super impressed and asked if we could go see it.  So that’s what we did.  We just did a drive-by of the place, but got to see the back mural and cruised by the front (you always see the front in the show, they recognized it) and someone was walking in.  They were so excited that they could see a bunch of people in there were sure Kat was in there.  🙂  I tried to take pictures while driving by the back (safe, I know) but they came out blocked by the fence.

Here’s a picture of part of it I found online if you haven’t seen it… That’s spray paint.  Seriously.


a day late. but still appreciated.

Only a day after my total panic with E yesterday and forcing him to test for ketones I received a letter in the mail.  I had taken him to TrialNet at Children’s Hospital LA a few weeks ago for the “Natural History study for the development of Type 1 Diabetes” where he was tested for diabetes-related autoantibodies.
The letter was the results.

“The result of E’s screening test was negative.  This means that no diabetes related autoantibodies are present at this time.  This is not a guarantee that E will never develop diabetes.  It does mean that E is currently at a lower risk than if the test was positive.  TrialNet offers annual re-screening to all participants up to age 18 since autoantibody status can change.  We will send a reminder letter to you and encourage you to have E re-screened in one year.”

I’ve been really scared to get this info.  It’s scary thinking what if you get the letter that says it was positive?  Well, then they sign you up for a clinical trial trying to delay onset, but that’s some serious information to have inside you.  I’ve spoken to another family about this locally.  In their family, Dad and one son have it.  Younger son doesn’t and neither does Mom.  I asked if they’d considered testing their other son and they said no.  They just always watch him closely for any symptoms.  I’m such a panicker, I think I’m thankful for this news.  It will definitely allow me a little peace of mind.  I’m fully aware that it could change, but at least I won’t be forcing him to test for ketones again today.