Saturday, November 19, 2011


Got the OGTT test results from TrialNet.  M is in two studies TEDDY and TrialNet.  TrialNet is the one that has her doing the OGTT's and both do antibody tests.  TEDDY started at 3 months (they were the ones who tested her cord blood at bith) and TrialNet started when she got the second positive antibody.  TEDDY is trying to figure out what environmental factors may trigger the gene while TrialNet is trying to prevent.  TrialNet tests for one more antibody that TEDDY doesn't.  That one has always been negative.

Until now.

Her ICA dropped back to negative.

I'm not sure what the trigger will be but she's supposed to be eligible to start an oral insulin trial when she hits the correct sequence of antibody positives.

And two of her blood sugar results came back "Impaired Glucose Tolerant".

The doctor wrote a note on the paper to "Be sure to check ketones with ANY illness".

The loud ticking noise in the back of my head needs to go away.

I frequently wonder if it would be easier on the parent to be caught unaware.  It's better for the kid (I HAVE to tell myself that) to have warning but it's flat out killing me.

Saturday, October 1, 2011

Long time no post

Got busy with a new job and getting Miranda settled into school.  Put her in a private kindergarten program and she's loving it!

A couple weeks ago we attended a party for the families in the diabetes study.  It's nice getting to know other parents in the same position I'm in.  Met one family with 3 girls, 2 of which are identical twins.  All 3 are in the study but type 1 doesn't run in the family.  On either side.  Here's the kicker.  One of the twins has a positive antibody test but the other doesn't.  Makes you wonder doesn't it.

Her next OGTT is on the 22nd.

Sunday, August 28, 2011


Got the test results.  Two out of three have gone up.  The other went down .002.

Is there some magic number they have to hit?

The waiting game continues.  It's hard to maintain hope.

Tuesday, August 16, 2011

Sunday, August 14, 2011


Normal fasting is 80-120 for children (70-99 for adults) so it isn't that high.

Must remember that.

Hopefully it's just the sick.


Miranda isn't feeling well this morning.  She woke up, headed to the bathroom and ended up throwing up.  I tested her blood sugar and it was 128.  Fasting.

I'm hoping it's just that she is a little dehydrated since she didn't drink much yesterday and it was hot.  After getting dressed she came out and had a little water, then milk and eggo blueberry waffles and says she's feeling a little better.

So I'll be testing again later today.

Wednesday, August 10, 2011



Had a message on my cell phone from TEDDY.

Instant panic.

Calls the week before, a couple days before, her next visit don't cause the rise in blood pressure etc because I know they are just reminder calls.

But when the call comes a couple weeks AFTER a visit . . . it's been the bad news about antibodies with each one being being progressively worse.

The message just said they were calling about setting up her next appointment but it's not until the end of October when she has her next OGTT.  So I called and left a message back but nothing yet.

So is that really why they called?

Monday, August 1, 2011

Always Thinking

Thinking gluten free.

She really doesn't eat much bread, maybe two slices a week and that would be pushing it.  She doesn't use buns.

Pasta a couple times a week.  Pretzels or crackers the same.  Otherwise it's rice when it comes to grains so it would just be a matter of a couple months to eat through what's in the house.

She's not a celiac.  She's tested every year and doesn't show any symptoms.

I'm just wondering if it might stop those stupid antibodies.  See I'm sure there is SOMETHING I could do if I could just figure it out.

Tuesday, July 26, 2011


I changed the name I use for my daughter in order to avoid using her proper name but I'm considering changing back.  While I've always called her "babygirl" something tells me that when she gets older she's not going to like being called "baby" here.  Weighing the pros and cons.

Monday, July 25, 2011

H. Peter Chase

Baby's Doctor at the Barbara Davis Center wrote the book.  Literally.

H. Peter Chase, MD is the past Executive and Clinical Director of the Barbara Davis Center for Childhood Diabetes in Denver, CO. In addition, he is a Professor of Pediatrics at the University of Colorado Health Sciences Center in Aurora, CO. Dr. Chase received his education at the University of Wisconsin in Madison, WI. He completed his internship and residency at the University of Utah and Stanford University. A fellowship in Endocrinology and metabolism was followed by research at the National Institute of Health. He has since been a faculty member of the University of Colorado. He is a principal investigator in the multi-center NIH - funded studies of Diabetes Research in Children Network (DIRECNET) and the Type 1 Diabetes / TrialNet prevention studies. Dr. Chase has received many honors, including the Outstanding Physician Clinician in Diabetes award from the American Diabetes Association, a Lifetime Achievement Award from from JDRF and the Ross Award for Outsanding Research in Pediatrics. He has authored over 200 research papers and 50 textbook chapters.

It's nice to know she is in such good hands.

Sunday, July 24, 2011


Her RG was 141 an hour after a banana and half a stick of cheese and her A1C was 5.6 up .3 from three months ago and continuing the trend up.  It doesn't take a rocket scientist to recognize the pattern.  It will be another 4 weeks before we get the test results.  She was her usual champ self during the blood draw.  Didn't even have a tech hold her arm down.  Did it all on her own.  The researcher laughed and said the stress test data was going to be useless with her because there was obviously no stress.

So afterwards we just came home for a bit.  Tried to get the kid to eat lunch (all she ate was some baby carrots) while I spend a little time online and took a nap.  Then off to some friends for a BBQ.  The family we met over the 4th of July invited us to their place for a housewarming/birthday party.  Baby played and played and played.  I got a couple bites of food in her by calling her over and making her try something from my plate but otherwise notta.  Except for the s'more later after dark when they started up the fire.  Her first!  She had such fun playing with all the kids.  Didn't get home until well after midnight and the heat kept us from sleeping in much so I'm thinking we will both be going down for naps in a bit.

I met lots of nice people.  One was a lady who is a T1.  Turns out both her kids are in TEDDY but have been clear so far.  She was dx'd at 11 and until she got her pump she wasn't expected to make it past 20.  She's now 31.  So she's in love with her pump.  We talked about different brands and let me in on something.  Seems the Medtronic, besides it's continuous glucose monitoring (CGM) is creating an app for smart phones to text alerts for lows (or highs) so that Mom or Dad can adjust programming WHILE AT WORK or away from the child.  That would be so cool!  It's kinda funny how in the last 2 weeks I've met two other TEDDY families.  Okay one.  The first family, the one's having the BBQ, found out that their daughter had the gene but their ped talked them out of joining the study.  She's wishing she hadn't listened now.

Friday, July 22, 2011

TEDDY Visit Tomorrow

This visit will be a mess.

First thing in the morning I have to give her a saliva test.  Before eating or drinking within half an hour of waking.

Then just before leaving I have to put the EMLA cream on her arms.  Usually they do it once we get there but this time they want to do another saliva test as soon as we get there, do the blood draw and then 20 minutes later do another saliva test.  They are testing stress levels.  While waiting to do the last saliva test (and the RG and A1C) we'll do the usual measurements and go over the paperwork we usually work through waiting for the cream to work.  This time it will be the diet record, the behavior checklist and the usual questions.

Thursday, July 21, 2011

New Perspective

Doing the 3 Day Diet record this time brought on a new perspective.

As the child gets older and more social I can see all kinds of new problems her eating habits could cause down the road.

Not only does she frequently take over 2 hours to eat a meal (especially dinner) but she also sometimes takes two bites and decides she's full.  How do you adjust insulin?

Then there was the day we spent at the pool with her friends.  She snacked on food other people brought the whole time.

Sunday, July 17, 2011

3 Day Diet Record

It's time for the 3 day Diet Record.  That means beginning today (and for the next 2 days) I have to record everything Baby eats or drinks.  Down to how it was prepared and all the ingredients.  Keeping labels are my best friend.

There are many pains to this as she is not guaranteed to eat everything on her plate in a reasonable time.  It took her 2.5 hours to eat her dinner the other night.  She's a nibbler.  The other problem is that she'll head upstairs to "bug" Grandma and eat (or drink) up there without me knowing until later.

The positive?  Well I figure if she DOES develop D then it will be something I will have experience doing when it comes to insulin and carb counting.

Friday, April 22, 2011


Baby had her second OGTT today at Children's.  Her fasting was 86 and A1C was 5.3.  Both numbers the same as three months ago.  She was a champ as usual.  Her only fussing coming when they were taking the tape off her arm - it was really stuck.

FYI she weighed 44.6 (down .4) and her height was 42.75 (up 3/4 of an inch) so I can't complain.

Afterwards we headed to the zoo where it was a little windy at first but calmed and was very sunny.  She passed out in the car on the way home :)  It was a good thing the plans to meet up with other local went the way of most Mercury retro plans because we were over a hour late.  We were there from 8 until shortly after 1.  

I left the camera in the car so pictures will have to wait until later.

Saturday, January 15, 2011


Baby had her TEDDY appointment this morning. RG 85 after a breakfast of oatmeal and milk. A1C was 5.3. Up .3 from her last test but the nurse said it was normal in winter. I was SOOOOO proud of Baby during the blood draw because she sat in the chair by herself, not in my lap, and did the whole thing by herself. No tech holding down her arm or anything. She didn't like the hugger (tourniquet) the most. Get this she was 42 inches (same as the doctor appt) and 45.0 lbs. 3lbs less. They use a digital scale and not one of the old fashioned black weight ones. So I'm betting the TEDDY scale is more accurate and I don't think she lost 3 lbs in the last two weeks.

I was talking to the nurse while waiting for the A1C results. I told her about Dad's comments about not being able to have so many carrots, corn and peas etc and not only did she agree with me that it was false but would be hazardous to her health. She said that it's one of the traps parents fall into, cutting sugar down too much, and that it stunts the kids growth - and actually causes harm to the brain! Type 1 is NOT type 2!

She asked me if I'd finished reading the book they gave me and I had to admit that I'd only skimmed the second half because I was getting too upset/worried/stressed etc. She told me that the unfun part of her job is shaking parents out of denial. That right now they (me) are standing at the edge of the cliff and waiting for something to push us over or pull us back. While Miranda might not develop diabetes in the next 5 years I should be thinking "when" not "if" because with a positive in all 3 antibodies it's pretty certain. 

I told her my fears about the school system and the stories I'd heard about some pretty scary school nurses and she relieved my fears on that score at least. She said that since Baby is in the study that she will automatically become a patient of the Barbara Davis Center and that if I'm having any problems THEY will take on the school for me.

I also talked to her about my feelings of "I did or didn't do" to cause this and that while logically I know that even if I did I couldn't have known (hence the study) and she pointed out that the environment is larger then just what I do - other kids/people/animals can all be the carrier and that until they KNOW what I can't be sure there was anything I could have done to prevent it. We also talked about stem cell research and she was happy that I understood that while we may come up with something to replace the stem cells in the pancreas until we stop the antibodies they will just get wiped out again.

I suggested that there should be some kind of support group for the parents with positive antibodies. They have them for the parents of kids who HAVE diabetes but not before and that cliff is hard to stand at all the time.

So a lot got talked out (she also said her son has been looking for work for a long time too so understood that stress) and I'm feeling better. It was good to talk to someone that understood ALL the aspects of what was going on with me without having any preconceived ideas of how I SHOULD be handling everything (no more carrots!).

Still have an emotional overload headache though.