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.
Sunday, July 17, 2011
Friday, April 22, 2011
OGTT
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.
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
Better
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.
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.
Friday, October 15, 2010
Will This Ever End?
I was looking at the Parker Rec online schedule to see what time Baby's Kids Kulture class starts tomorrow. It's a free once a month thing for littles but you do have to register. I'd signed up for them but wanted to double check the time.
It says I have a class that has already started. Made no sense to me since her swim lessons didn't start again until Monday. They've always been two weeks on, one week off, two weeks on etc. You have to sign up for the next class a week out and you don't know what level your kid is going to need to sign up for until the end. That gives you a couple days to sign up for the next session. Makes sense right?
And I'd signed her up to repeat Minnow because at the end of the first week of her private lessons her teacher told me that Minnow would be cake but she'd struggle with Shark because she needed to work on her endurance. The fact that she'd had an ear infection and was fighting a cold wasn't helping so I just went with the Minnow - and the timing worked with my UI checks and I have to budget in that way. Made things tight then but I got help from an outside source and was able to make it. Even managed to get a haircut before my interview so felt better about myself.
Back to the already started class. Yep, it was her swimming class. My screw up because I wasn't looking at a calendar and just signed her up not noticing that THERE WAS NO WEEK OFF BETWEEN CLASSES! Yeah I just paid for a week of classes she didn't get to take. Oh and there isn't a week off after this either so I have to get her signed up for the next session this weekend.
I hate feeling like such a screw up!
Oh and while I've been very proud of Baby's choices lately (wanting the plain apple slices instead of the candy/carmel apple) I'm getting concerned because it's becoming a fight to get her to eat breakfast and she's started talking about CALORIES! At first I thought it was just a word she'd picked up off of hearing an adult conversation but when she was looking at the nutrition box on her cereal (mini wheats - I like them for the high fiber count and they help her poop) and pointed out the calorie information to me along with telling me the number I knew it was much more.
I know that if she actually does develop Type 1 diabetes she's going to have to count carbs for the rest of her life but I don't talk calories with her. I talk healthy foods and treats and that treats aren't had every day. She still has halloween candy from last year for pete's sake!
It says I have a class that has already started. Made no sense to me since her swim lessons didn't start again until Monday. They've always been two weeks on, one week off, two weeks on etc. You have to sign up for the next class a week out and you don't know what level your kid is going to need to sign up for until the end. That gives you a couple days to sign up for the next session. Makes sense right?
And I'd signed her up to repeat Minnow because at the end of the first week of her private lessons her teacher told me that Minnow would be cake but she'd struggle with Shark because she needed to work on her endurance. The fact that she'd had an ear infection and was fighting a cold wasn't helping so I just went with the Minnow - and the timing worked with my UI checks and I have to budget in that way. Made things tight then but I got help from an outside source and was able to make it. Even managed to get a haircut before my interview so felt better about myself.
Back to the already started class. Yep, it was her swimming class. My screw up because I wasn't looking at a calendar and just signed her up not noticing that THERE WAS NO WEEK OFF BETWEEN CLASSES! Yeah I just paid for a week of classes she didn't get to take. Oh and there isn't a week off after this either so I have to get her signed up for the next session this weekend.
I hate feeling like such a screw up!
Oh and while I've been very proud of Baby's choices lately (wanting the plain apple slices instead of the candy/carmel apple) I'm getting concerned because it's becoming a fight to get her to eat breakfast and she's started talking about CALORIES! At first I thought it was just a word she'd picked up off of hearing an adult conversation but when she was looking at the nutrition box on her cereal (mini wheats - I like them for the high fiber count and they help her poop) and pointed out the calorie information to me along with telling me the number I knew it was much more.
I know that if she actually does develop Type 1 diabetes she's going to have to count carbs for the rest of her life but I don't talk calories with her. I talk healthy foods and treats and that treats aren't had every day. She still has halloween candy from last year for pete's sake!
Sunday, October 10, 2010
Thanks for all the comments!
To be clear the genetic component is the one part that I don't have a lot of guilt about - except for obviously my choice in sexual partner - because I know she didn't get the gene from me. I don't have it and no one in my family going back at least 3 generations has ever been diagnosed with Type 1. Type 2 yes on my dad's side.
It's more along the lines of the TEDDY study. Trying to figure out what triggered the genes to act up in the first place. Something in her environment caused her body to go into overdrive and start fighting itself. When she started out (no antibodies acting up) her chances were only 14%. 1 in 7 with the gene actually develop the disease in their lifetime. With the first antibody her chances rose. The latest testing was more extensive so we know that her odds are now greater then 50% and within the next 5 years.
So what was it that I did, didn't do etc that other parents didn't do and did that made the difference? And what can I do that will put the odds back in her favor?
She's not on any medications yet as she actually has a functioning pancreas now but they were talking about the possibility of putting her on oral glucose as part of a trial (which means she could have the placebo) to see if it will help prevent the disease. Her next TEDDY appointment is in two weeks so hopefully I'll have a lot more answers then. I'm going to call the doctor tomorrow (or Tuesday since I don't know about office hours with the holiday) to see if I can get answers sooner.
I still have to test her blood sugar a couple times a month (daily if she's sick) and she'll have another glucose tolerance test in 6 months.
To be clear the genetic component is the one part that I don't have a lot of guilt about - except for obviously my choice in sexual partner - because I know she didn't get the gene from me. I don't have it and no one in my family going back at least 3 generations has ever been diagnosed with Type 1. Type 2 yes on my dad's side.
It's more along the lines of the TEDDY study. Trying to figure out what triggered the genes to act up in the first place. Something in her environment caused her body to go into overdrive and start fighting itself. When she started out (no antibodies acting up) her chances were only 14%. 1 in 7 with the gene actually develop the disease in their lifetime. With the first antibody her chances rose. The latest testing was more extensive so we know that her odds are now greater then 50% and within the next 5 years.
So what was it that I did, didn't do etc that other parents didn't do and did that made the difference? And what can I do that will put the odds back in her favor?
She's not on any medications yet as she actually has a functioning pancreas now but they were talking about the possibility of putting her on oral glucose as part of a trial (which means she could have the placebo) to see if it will help prevent the disease. Her next TEDDY appointment is in two weeks so hopefully I'll have a lot more answers then. I'm going to call the doctor tomorrow (or Tuesday since I don't know about office hours with the holiday) to see if I can get answers sooner.
I still have to test her blood sugar a couple times a month (daily if she's sick) and she'll have another glucose tolerance test in 6 months.
Saturday, October 9, 2010
A Mother's Guilt
I know it's not true. Or rather I think it's not true.
But I can't help but feel that I am in some way responsible. There had to be something I could have done, should have done, need to do now that would stop all this.
I just wish I knew what it was.
But I can't help but feel that I am in some way responsible. There had to be something I could have done, should have done, need to do now that would stop all this.
I just wish I knew what it was.
Friday, October 8, 2010
TrialNet
Got the results from the glucose tolerance test and other tests from TrialNet - the other study that came in after she tested positive for a second antibody. It didn't mention the other genetic testing they were supposed to be doing and, of course, it's after 5 on Friday so can't call them to ask about it.
I did get the glucose numbers, which were all fine, and the results of the FOUR antibodies they tested her for (TEDDY only does 3) and she tested positive for 3 of the 4.
The end result?
She has a greater then 50% chance of developing diabetes in the next 5 years.
Sucks rotten eggs.
I did get the glucose numbers, which were all fine, and the results of the FOUR antibodies they tested her for (TEDDY only does 3) and she tested positive for 3 of the 4.
The end result?
She has a greater then 50% chance of developing diabetes in the next 5 years.
Sucks rotten eggs.
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