And we hit bottom.
Went in today for "education" and to talk about next steps. As part of it that had Miranda come in fasting and then eat breakfast (oatmeal and they added juice to push her pancreas) and two hours later it was 299. So what was just supposed to be a "get to know your team" day ended up with us leaving with injection pens and prescriptions.
But you have to love it when you team includes the Professor and Clinical Director of the BDC as her doctor and the head nurse as her nurse.
So it's official. This is dx day one. And now that I have a game plan, I'm feeling better.
Monday, February 6, 2012
Sunday, February 5, 2012
Falling
I now understand why people that fall from heights die of heart attacks before they hit bottom.
I've been working on this post in my mind for a little over a week now but just couldn't seem to put it to web.
About a month ago, maybe more, Miranda started getting up in the middle of the night to go to the bathroom a couple times a week.. Strange for her since she's been one to sleep through the night since birth, never wet the bed and had dry diapers through the night since she was 2. Yes, I was spoiled. But it didn't quite gel as a symptom since she wasn't wetting the bed . . .
Her 5th birthday was on the 22nd, a Sunday, and early Tuesday morning she got up to go potty and threw up while she was sitting there. No fever, no tummy complaints, just urp. Her 5 yr checkup was later in the afternoon so I didn't worry.
So she got 4 shots, vacs, and a blood draw. I finally convinced the doctor to do allergy testing (results were allergies to dog and cat) because she was always stuffed up, especially fall through spring. She failed the high register on on her hearing test so she's supposed to be getting another screening. The thought is all the stuffiness is impairing it. Vision fine. She told the doctor about urping but since there had been no more the doc put it off to just something not sitting right.
Early Thursday this time she made it back to the bed before urping. I preferred the bathroom.
Her TEDDY appointment was scheduled for Saturday, the 28th, and I was getting nervous. I called and let the nurse know what had been happening. She said not to worry, she sounded okay, and that everything would be checked in two days anyway.
But when I showed up she'd asked Dr Rewers to stop by for a visit. He looked at her, said she looked like a rose so no immediate danger, and asked the nurse to call him with the numbers. RG 88 so I started relaxing. Then the blood ketones came in. 1.0 Not dangerous but too high even though she was fasting. When the A1C came in the look on her face just made my heart sink. 6.4
Dr Rewers wanted us back at the Barbara Davis Center Tuesday morning to begin training. In the mean time he wanted us to monitor her sugar two hours after lunch and dinner.
When he got the weekend numbers he decided we could wait - it was coming but we weren't going to rush to insulin. Diagnosis: impaired pancreas
So we've been falling for the past week. Okay Miranda's been falling for longer but I wasn't aware of it.
And the ground is rushing up. Last night it was 199. Today after lunch it was 305.
I called the doctors and now training is back on for tomorrow morning. I don't know exactly what the outcome will be.
Part of me feels like Wyl E Coyote falling and running as fast as I can hoping that I'll go sideways instead of down. Another part just wants to hit the bottom and have it all be over. I missed, somehow, the opportunity to walk away from the edge. I will always wonder what it was I should have done to stop this. Was it the allergies? Should I have pushed harder for the testing? Was it already too late almost 3 years ago when the antibodies first showed up?
So it's not official. I can't really say when it will be. I just know it is coming and I'm so tired of the fall.
I've been working on this post in my mind for a little over a week now but just couldn't seem to put it to web.
About a month ago, maybe more, Miranda started getting up in the middle of the night to go to the bathroom a couple times a week.. Strange for her since she's been one to sleep through the night since birth, never wet the bed and had dry diapers through the night since she was 2. Yes, I was spoiled. But it didn't quite gel as a symptom since she wasn't wetting the bed . . .
Her 5th birthday was on the 22nd, a Sunday, and early Tuesday morning she got up to go potty and threw up while she was sitting there. No fever, no tummy complaints, just urp. Her 5 yr checkup was later in the afternoon so I didn't worry.
So she got 4 shots, vacs, and a blood draw. I finally convinced the doctor to do allergy testing (results were allergies to dog and cat) because she was always stuffed up, especially fall through spring. She failed the high register on on her hearing test so she's supposed to be getting another screening. The thought is all the stuffiness is impairing it. Vision fine. She told the doctor about urping but since there had been no more the doc put it off to just something not sitting right.
Early Thursday this time she made it back to the bed before urping. I preferred the bathroom.
Her TEDDY appointment was scheduled for Saturday, the 28th, and I was getting nervous. I called and let the nurse know what had been happening. She said not to worry, she sounded okay, and that everything would be checked in two days anyway.
But when I showed up she'd asked Dr Rewers to stop by for a visit. He looked at her, said she looked like a rose so no immediate danger, and asked the nurse to call him with the numbers. RG 88 so I started relaxing. Then the blood ketones came in. 1.0 Not dangerous but too high even though she was fasting. When the A1C came in the look on her face just made my heart sink. 6.4
Dr Rewers wanted us back at the Barbara Davis Center Tuesday morning to begin training. In the mean time he wanted us to monitor her sugar two hours after lunch and dinner.
When he got the weekend numbers he decided we could wait - it was coming but we weren't going to rush to insulin. Diagnosis: impaired pancreas
So we've been falling for the past week. Okay Miranda's been falling for longer but I wasn't aware of it.
And the ground is rushing up. Last night it was 199. Today after lunch it was 305.
I called the doctors and now training is back on for tomorrow morning. I don't know exactly what the outcome will be.
Part of me feels like Wyl E Coyote falling and running as fast as I can hoping that I'll go sideways instead of down. Another part just wants to hit the bottom and have it all be over. I missed, somehow, the opportunity to walk away from the edge. I will always wonder what it was I should have done to stop this. Was it the allergies? Should I have pushed harder for the testing? Was it already too late almost 3 years ago when the antibodies first showed up?
So it's not official. I can't really say when it will be. I just know it is coming and I'm so tired of the fall.
Saturday, November 19, 2011
TrialNet
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.
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.
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
Results
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.
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
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.
Must remember that.
Hopefully it's just the sick.
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