Mad Hatter

I will be the Mad Hatter

For those that have not read my blog before or were not around when I began my blog earlier this year here is a recap:

I have 3 children. 2 of my three children (my oldest and my youngest) have both been diagnosed with Type 1 diabetes. My youngest was dxd when he was 2 back in 2007. My oldest was dxd 2 years later at age 9. Since my oldest child’s diagnosis I have also monitored my middle child’s blood glucose levels periodically – holding my breath each time and releasing said breath with a sigh of relief each time his numbers came back “normal”.

In October of 2011 my middle child (middles) agreed to get a blood draw at our local JDRF walk via Trialnet (research group that tests for antibodies that are present in those with Type 1 diabetes).

In February I received word that Middles was positive for all of the antibodies commonly found in individuals with Type 1 diabetes. Not great news but not a guarantee that Middles would develop diabetes. (BTW – my husband and I are both negative – my oldest (Sweetstuff) was positive for the antibodies two years prior to diagnosis)

Since February I have held my breath – checked Middles blood sugars slightly more often than previously and prayed. His numbers were not always “normal” but when they weren’t normal they were lower than normal (between 60 and 75 – post-prandial – which is low). Normal Blood sugars
In the last month or so Middles has been demonstrating random symptoms that I am way too familiar with:

  • increased thirst
  • sore legs
  • headaches
  • stomach aches
  • chest hurts
  • increased urination
I know the symptoms of diabetes onset – thus I tested Middles when he showed the above symptoms. Each time I checked him his blood glucose would be in normal range or below normal range. I also tested his  Ketone levels. On more than one occasion the ketone test results showed “trace” ketones using the ketone sticks (dipped in urine). I consulted the endocrinologist that my other two children see regarding the lower than normal blood sugars and trace ketones – she suggested we keep an eye on Middles.
Fast forward to today –
I took my boys to see Avengers (it was fantastic btw – stick around after credits for extra snip-its – Robert Downey Jr is so attractive I could watch him all day {sorry hubby but it’s a fact}). ANYway – during the movie Middles left to use the bathroom 3 times, drank all of his 32 ounces of water and most of mine. (He also ate a good size bag of twizzlers and popcorn). On the way home he fell asleep in the van and woke up just long enough to tell me to stop so he could go potty. When he came out of the bathroom at Taco Smell I tested his blood glucose level using Sugarboy’s meter.
6:30 = 232
Middles didn’t even ask what his number was – normally he asks. I was glad he didn’t ask. I wouldn’t have known what to say. We arrived home and I checked him again.
7:00 = 215
He had gone down but it was far from normal. No person without diabetes should ever have a blood glucose reading so high. I called the endocrinologist on-call. I explained the test results, the previous checks I had done in the weeks prior, the symptoms, and mentioned the positive antibody results. The endo on-call is not our normal endo so she was unfamiliar with my children but felt an ER visit unnecessary. She gave me some suggested lantus and novalog doses and asked me to check his blood sugars frequently over the weekend. She agreed to see him early Tuesday to run some blood tests (likely a C-peptide which checks insulin production and an A1C which is an average blood sugar over a 3 month period).
I checked Middles again – I hadn’t dosed him any insulin at this point.
8:00 = 136
Awesome his sugars had gone down more without injecting insulin. With this third check he told me I was making him a bit nervous. Normally when I did check his sugars it would be once in a week or so. Three times in 1.5 hours was more than I had ever subjected him to. I explained that his other numbers were slightly higher than normal and I was just keeping an eye on him. I also asked him to check his ketones. He knew just what to do since he had done it before. His ketones were “trace” – no immediate danger at this point.
I explained that the doctor wanted him to get some insulin but he said he would have none of it. (I hadn’t planned on giving it to him at this point since his sugars were coming down). He insisted that if I gave him insulin and he didn’t have diabetes it would kill him. He was right. Especially with the odd low numbers he had had in recent weeks I didn’t feel a dose of Lantus would have been safe.
9:30 – 126

Sugars still coming down – doesn’t mean I am wrong about the diabetes diagnosis – just means his pancreas is still producing insulin. The numbers earlier indicate that the storm is coming.
At this point I asked Middles how he would feel if he is diagnosed with diabetes.
Middles “Well you would loose your mind and become the Mad Hatter”
Me “You are likely right but I want to know how YOU would feel”
Middles “well I guess I wouldn’t be unique anymore”
So that is what went through my dear Middles mind when asked how he would feel about a diabetes diagnosis, that his mom would loose her mind and he would be just like his siblings – not unique.
I think he is right and wrong – He is absolutely correct about me loosing my mind but I think my Middles will forever be a “One of a Kind” kid.
For now – while I wait and check and wait and check – I ask those of you who believe in the power of prayer to put in a good word for my Middles. Maybe the storm is coming – but maybe it was a fluke – there is always hope.
Which ever way things go – we will weather the storm –
although I will likely be wearing a crazy ass hat.
Want to know the odds of multiple kids with diabetes in one family – check this out.
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10 Responses to Mad Hatter

  1. Diane D says:

    I read this and I want to throw up. I am praying mt heart out.

    • Christina says:

      Thank you Diane – numbers have been in 90’s all night. The irrational part of my brain tells me the high numbers and all the symptoms are just flukes. Hope is a beautiful thing and it doesn’t die when when things don’t end up the way we hoped for – Hope is transferable. Right now I hope I am wrong – if it turns out I am right my hope will transfer to studies that I will try to get him in to prolong betecell function and I never stop Hoping for a cure for all our children, friends, family – all pwd. Thank you for your prayers and support.

  2. Marie Smith says:

    I don’t want this to be true. But if you have to walk down this road, I’ll be with you on it. Promise.

  3. Chris Dean says:

    This is the part of parenting I HATE! The waiting, watching, and worrying. I will pray for all of you, and that he bod levels out and kicks in properly. I will pray for strength, endurance, and lots of smiles for you.
    As for the Hatter…tell him he was sleeping like the Door Mouse, so it works! Also? A few days ago my daughter informed me if this was the book I’d be the Cheshire Cat…so we’re ALL in good company! *hugs*

    • Christina says:

      Thanks Chris – I can see you as the Cheshire cat. We do live in a crazy ass wonderland where all is not what it seems – I hope this is not what it seems. Thanks for the support and hugs.

  4. Teresa Werner says:

    Praying for you my friend – please let me
    Know if you need more then prayers. I’m just minutes away…especially if you need some time alone…the kids are welcome here anytime. Or am always up for a drink!

    • Christina says:

      Thanks Teresa for your prayers and kind words. All the heavy lifting and cleaning with the house and preparing it for the market is keeping my my mind occupied. Ill take Middles to the Endo tomorrow. Not sure what will come of it. Ill let you know if I can use a helping hand and I certainly appreciate the offer.

  5. Andrea says:

    Thinking of you! – This life is a crazy rollercoaster ride at time! I HATE rollercoasters!!

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