THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Monday, September 6, 2010

PWD - I have a question...

NaPoBloMo -- DAY 6!

I ran across this post from Scott earlier this evening.  In it, he shares a heartwarming moment with his daughter when he checks her blood sugar.

It got me thinking....

Many parents of CWD often worry about their non-d children.  I know I'm guilty of jumping to conclusions when I see one of my non-d kiddos drinking more than usual or going to and from the bathroom more frequently.  Yes.  I've tested.  MANY TIMES I've tested those other little fingers.  Just to put my mind at ease, ya know?

After reading Scott's post, it made me wonder if PWD who have children ever worry.  Do you ever test your kids?  If you also have a CWD, did you pick up on the symptoms right away?  What emotions did you feel?

I'm REALLY hoping some PWD will take a few moments to either blog about it or leave me a comment.  I'm honestly curious!

Thank you from the bottom of my CANDY HEART,


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11 comments:

  1. Wendy, this is a great question. As a d' mama I used to check Bridget the year or so after Joe's diagnosis. I don't any longer b/c I know there is no way I will miss the signs and symptoms of "d". I don't live in fear of it...but acknowledge the possibility of it.

    I am curious what the PWD community will say...

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  2. Absolutely. I think about it though I don't exactly worry about it. We did have a little scare with Lila that I blogged about..."She just wanted some milk".

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  3. I've checked my kiddos a couple times, especially my 3 year old because Lovebug was 3 when she was diagnosed. I don't think about it all the time but when something isn't quite right or there is one sign of possible D, I check. It puts my mind at ease

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  4. Hey - ok, not a PWD, but a DMom. And no, I don't check my older 2 gals who are 12 and 13 yrs old. I figure they have enough to worry about and don't need that hovering over their heads. If they have symptoms I'll check but so far, so good. I am now knocking on every piece of wood I can find....

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  5. Love this. I hope you get some responses from the PWD community. I am very interested in hearing their responses as well.

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  6. Ok wendy as you know, and I will share with others. We have not only tested Sean but he also participates w/ trial net. NOW when Charlize was diagnosed. I know what I did because of sean. ( he was born with issues with blood sugars) and the doctors told me he will develop it as he gets older. NOW after Charlize was diagnosised I watched for the symptoms in Sean.. HE has gone thru several episodes of strong symptoms.. At first we wanted to know if he had any of the contributing factors ( antibodies) But when we tried to have his first pedi do the testing.. they had no idea how to read the test. We got back.." NO he does not have diabetes". I have always had the outlook that if it happens it happens... And that was the end of it so we thought. We fast forward several years later and many years of dealing with symptoms in him. His new pediatrician. Talked us in to testing again... I was hopeful. He automatically knew what test to do so I figured he had some knowledge in this whole thing. NOPE. He got the test back and told me he could not read them, something is there. But he does not know what it means and to go see Charlize endo. SO what did the doc test.. For the IAA antibodie. Unlike normal blood test where you have a range. There is no range for diabetes antibodies. YOU either have them or you dont. SO I found out from my daughters endo that he infact has tested positive for the antibodies.. UMMM not good. That was all she could tell me. There are 3 other antibodies and no one could still tell me really what it ment. SO we contacted trial net. THEY are fabulous. IT was a long process with them but in the long run we have found out that he test positive for both IAA and Gad65. antibodies. We also learned that they fluxuate so those can go away and come back. The others antibodies can to. We learned that just because they are there does not mean that he will get diabetes.. BUT it does greatly increase his chances. We also learned that his HLA gene is not protected... So basicaly he has no protection if his antibodies go crazy one day... SO to that they look at Sean that he is not IF he will get it, BUT when.

    IN the long run I am no diffrent. Then I was before, except now maybe more knowledgeable and more worried. We still look at it as IF it happens it Happens... That helps alot. We do not poke his finger any more.. UNLESS he is having strong symptoms and he test positive for ketones. ( he has tested positive before)

    SO my advice is to any one that wants to know... Decided what your thoughts on subject that if it happens what then? and what will you do with the information at hand. Once you figure that part out.. THEN contact trial net if you want to know. IN the long run it basically is this. THey could test positive and never develop it or they could test negative and they could. Also by going thru trial net nothing goes in there medical records either for an insurance company to come back and use that against them.

    ME A big part of me wishes we never opened that can of worms...

    Chandra
    MOM to a beautiful type 1 girl and to a NON-D boy who will most likely have it one day.

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  7. Before Lily was diagnosed, I never worried about it. I caught the signs of it pretty quickly and the doctors in the ER were all amazed that a 2-year-old was brought in with diabetes, but no signs of DKA. I do test Leo occasionally because we are worried about it, but Leo wants to have his blood sugar checked (sticks his finger out whenever I do Lily's, silly boy!) and doesn't understand what the numbers could mean yet. If he gets it too, he gets it too. If not, we'll count ourselves lucky!

    Okay, that's getting long. But I hope it helps answer some of your questions, Wendy! Feel free to ask more anytime!

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  8. Wendy-

    I have tested Niya on more than once occasion. If she shows the signs I test. It's a scary thing but I have to do it.

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  9. I worry about my non-d kids all the time now, especially my next oldest to Josh. The other day she said she felt shaky. I tested her and she was 78. Now what does that mean?! She has never had a high reading. But then I have been reluctant to do the sib screening because I think, what can I do with that information if it comes back positive - nothing. It might show me that she has the gene to possibly get it, but then she doesn't actually have it yet, and there is no way to prevent it, so what do you do? It's definitely something that is hanging over my head. Like I'm waiting for that bomb to drop. :(

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  10. HI!! Brian, My husband is actually Type 1 as well. Most people dont know it but he was DX as an adult about 6 years ago. He honeymooned for a while so it was very different from Joshua. Also Brian has never allowed me in that door. Ive never been to his appts, and he never expalined any of it. He kind of just delt with it on his own. When Johshua was DX the nurses all thought Id know it all but I was BRAND NEW TO it and Brian was in a way to. Since he was DX as an adult even though it is type 1 they treated him very differently. They didnt explain 1/2 the things they did to me. He is a much better D paintent now. WE didnt even have a food scale cause I didnt know it was needed for him. We didnt pick up on Joshua's DX because all his symptons were signs of teething, growing, and being 1. I have tested Jackson a few times scared to death of the results.

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  11. You know me, Im a worrier....even before I was diagnosed I always wondered if my kids would get Diabetes. I havent checked Hannah in a long time....well, I guess last year though when she had some lab work done I asked them to do an A1c...(it was 5.5) I still check her sometimes if she is an emotional wreck or drinking too much!

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.