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Author Topic: Could this happen to me again?  (Read 9627 times)

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Offline mandi_smom

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Re: Could this happen to me again?
« Reply #15 on: July 29, 2010, 08:43:24 AM »
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  • Thanks for sharing your stories.  I remember exactly the moment I found out about Emily.  It was one of the most disheartening days for me.  For some reason, it just hit home that this beautiful little girl got d too and then Isaiah just a little baby.....  It completely baffles me when there are more than 1 health challenge in some families, and then none in others.  I guess it's the luck of the draw.

    After just getting back Alec's C-peptide yesterday and his A1C (yes, guess what?  I worry too about my second child getting d).  Mostly I just hate wondering.  Thank goodness he does not appear to have Type 1, but the opposite.  He is producing too much insulin to compensate for some high blood sugars.  Maybe because of his growth hormone he is taking, maybe a precursor to Type 2. I know that it shocked me a bit.  I was almost sure this was Type 1.  Because I've caught several high bgs.  I feel guilty b/c in the midst of taking care of Amanda and her needs, I kind of let Alec's health slip by.  You see Amanda was my "healthy" baby.  She never had as much as an ear infection.  She eats so healthy since she was born.  And she got d.  So I figured, the hell with it.  Alec likes junk food.  Let him eat what he wants.  And now I feel guilty that doing that, may have put him at risk for Type 2. 

    I think it's never ending the worry we parents go through.  But I am amazed, and I get strength each and every day from parents of little ones with d and other challenges and with 2 kids with these challenges.  I feel like I have no right to complain about my 2 kids and their multiple health issues. 

    I still ask "why the hell us?" a lot.  I don't think that's going to stop anytime soon. 

    Yolanda (Mom to Amanda 21 dx 3/27/06, pumping w/MM since 10/06 and Alec 17) South Florida=


    Offline house216

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    Re: Could this happen to me again?
    « Reply #16 on: July 29, 2010, 08:57:07 AM »
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  • I feel guilty b/c in the midst of taking care of Amanda and her needs, I kind of let Alec's health slip by.  You see Amanda was my "healthy" baby.  She never had as much as an ear infection.  She eats so healthy since she was born.  And she got d.  So I figured, the hell with it.  Alec likes junk food.  Let him eat what he wants.  And now I feel guilty that doing that, may have put him at risk for Type 2. 

    OMG, i do the same with Nicholas. He gets away with eating alot of stuff that Lucas never ate at his age!!! Guess I have to be more vigilant.
    Lucas, 8 yrs. old, DX, 5/10/07, Nicholas, 6 yrs. old, non-d
    South Florida

    Offline rockorex

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    Re: Could this happen to me again?
    « Reply #17 on: August 10, 2010, 11:38:19 AM »
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  • I guess all I can add to this is that I was at least thankful that due to our experience with little brother, we caught it with big brother before he had the chance to get really ill. 
    Confession:  I have a tad bit of guilt for the denial I held on to for a while.  If it were to do over, I would have probably tested him back in June instead of waiting until late July.  June was when I initially noticed the weight loss.  In the far back of my mind I knew what was happening.  I just kept convincing myself it was the heat, the summer activities of vacation, swimming, playing; that he has always been on the thin side...etc.  I reasoned that he hadn't been sick or asking for something to drink all the time.  He was okay; I was just paranoid because of little brother having D. 
    I had to begin confronting myself about that denial once he started wetting the bed.  First time I figured was a fluke.  (though really that thought in the back of my mind was getting bolder even the first time he wet the bed) When he wet it repeatedly through a week and had never had a bedwetting problem previously...and I had started limiting his drinks in the evening before bed, I KNEW.  I also put off testing him because he was so terrified of it.  We all hate that first few times when we have to convince our kid to let us 'hurt' them for there own good.  That test was the hardest test I'd done because I knew it was basically going to be like a sentence being handed down to him.  I wanted to have hope that he'd be normal and was  just a bed wetter.  A skinny bed wetter.  427.  I can't describe what I felt after that.  I wasn't shocked, I wasn't panicked, I wasn't sad or mad.....I guess it was just plain old nothing.  Pack a bag, time to check into Hotel Children's Hospital for a while. 
    It's now been 3 weeks to the day since we took him to the hospital and confirmed his D.  I still haven't felt anything yet.  I haven't even cried.  I might not ever.  Maybe I expected this fully and just never knew it?  We were out of the hospital in just 3 short days; we knew the drill already after all. I just wanted to go back home and get back to our slightly modified routine.  He hadn't been ill and he was easily brought into a good range and has pretty much stayed there.  He might still be honeymooning; I don't know and I've never really understood the point of worrying about that.  Either way, the D changes all the time and you always have to adjust, honeymoon or not.  I'm grateful that I know what to do already but it does feel like there is SO. MUCH. MORE. to worry about now.  On one hand, it's the same drill, just one more kid, so I shouldn't complain.  On the other hand, it's really not the same drill because one could be high and begging for a fully loaded snack and the other in range wanting to go swimming out in the 100 degree heat without eating something first.
    I have had a recurring nightmare lately of switching their insulin doses lately, too.  The routine before eating almost requires complete silence in the house for me to concentrate.  "Ssssshhhhhh!  I'm calculating!" 
    It's easy because I know what to do but it's hard because I almost never get to do the same thing for both kids. 
     
    I like poetry, long walks on the beach and poking dead things with a stick.

    Offline JulieChatellier

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    Could this happen to me again?
    « Reply #18 on: August 11, 2010, 12:26:59 AM »
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  • Thank you all for sharing your stories. I remember Emily's dx. I remember how ill I felt, how scared for my own kids, how upset for Chris & Kellie.

    I have LONG suspected that my Jada will one day dx'd. Guess it's that "momma gut feeling". Hindsight is 20/20 as they say and with now knowing the symptoms of a diabetic high I see so much more than I did before Alyssa was dx'd. Jada is mimicking Alyssa daily.

    Alyssa was 7 1/2 when dx'd. I was pregnant with Jada at the time. It was May, I had gestational D and was checking my own sugar and just decided to check Alyssa because she was sitting next to me. The rest is history. Jada turned 7 a few weeks ago. Paranoid? You bet I am.

    BUT I feel better prepared. I don't want it, but I WON'T be shocked. I am ready (or as ready as one can be) for it. I have long since started the grieving process... I started it the day our sweet Emily was dx'd!
    Julie ~  Mom to: Alyssa 19 (MM Pumper dx'd @ 7) & Non D: Ryan 15, Maison 13, & Jada 11 - SOUTH LOUISIANA
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    Offline microtech

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    Re: Could this happen to me again?
    « Reply #19 on: August 11, 2010, 01:42:19 AM »
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  • My cousins daughter got diabetes about 10 years ago. It never occurred to me that one of my kids would get it. At the time she was the only one. Three years ago, when Aaron was diagnosed, I  had a gut feeling that there would be more. I never thought it would be Matthew. I still don't really  worry that he will get it.  Sure, we've checked his sugar a few time, but I really don't think about it. I knew it would another one of the cousin's kids. A few months ago, when Madalyn was diagnosed, I felt like my heart was ripped out. She is the youngest of all of six cousin's kids, and my niece. I wished it was me. I  would never wish diabetes on my other child, but it hurt so much that another family had to deal with it. We already knew what to do, it wouldn't really have even been that much of a shock,  if it had been my kid. Now I worry who will be next. There are 14 kids, 3 of them have it,and the oldest is 19.  Will there be more? I hope and pray with all my heart that there won't, but I worry  all the time that this horrible disease will keep attacking my family. Will it happen to my child? I hope not, but I hope even more that it doesn't happen to another child in my family. 
    Mom to Matthew,18 and Aaron,16( dx6/29/07, by me and pumping w/POD since 2011). Married to Chris for 23yrs.

    Offline rudi

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    Re: Could this happen to me again?
    « Reply #20 on: August 11, 2010, 02:12:54 AM »
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  • I knew while we were still at the hospital with Willow that one of the other boys would be diagnosed one day.  Not a conscious thing just a gut feeling.  I hoped and hoped it wouldn't be Zephyr because he was absolutely terrified of needles, not thrilled with doctors and in general a harder kid to handle as far as structure went.  But he was the one.  Woke up one morning with a dribble of pee on his pajama pants, next morning ran to the bathroom and missed and the third day, the first one he actually told me about, the bed was soaked.  I remember feeling split- the light went on and I went into immediate action but at the same time I was on auto-pilot, unable to fully process the information in front of me.  I had to pin him down with my legs and body to check his blood sugar.  Of course the shock isn't there the second time- you know what it all means and you know you will push on through.   But the sadness seemed to hit hard.  No tears for me, I've never cried over either diagnosis, but a deeper and more physical sad that another child, another of my children was going to live life with this friggin' miserable burden.  We have never let D stop us from anything and I will do everything in my power to make sure my kids never see this as a barrier to anything, but its always there just the same.  Every bite of food or game of tag carries ramifications that no child should have to think about.  When Zeph told me that he often forgets he has diabetes except on site change days I was on cloud 9.  Those were absolutely the most precious words ever spoken to me and made every sleepless night that much more worth it.
    Mum to Jasper, 14 and D-free, Zephyr, 12 and diagnosed Jan 29 2009, and Willow, 10 and diagnosed Jan 12, 2008. Wife and pest to Kevin since 2000.

    Offline Kellie

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    Re: Could this happen to me again?
    « Reply #21 on: August 19, 2010, 07:35:58 PM »
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  • Chris!!!  We aren't having more kids??????   <roflmao> <roflmao> <roflmao>

    Sorry, just had to lighten up the thread for my own sake.  I was starting to get depressed.  ::)
    Kellie ~ Mom to Christopher 10~ dx July 2004 and Emily 6~ dx June 2008 (Southern NJ)

    Offline Twinklet

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    Re: Could this happen to me again?
    « Reply #22 on: August 31, 2010, 04:10:44 PM »
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  • I remember when Emily was diagnosed and I felt sick that entire day. We all worry about our 2nd children.

    I made the mistake of worrying so much I've scared my youngest to death. Last year during a checkup, she hid under the desk in the exam room because the Ped wanted a fingerstick for hemoglobin. When I told her the fingerstick was for hemoglobin and not BG, she willingly came out and handed over her finger.

    Sometimes she'll cry and tell me she's peed 4 times that day, and does she have D? She doesn't want me to check because she's afraid of the number.

    I had no idea my worries and musings had given her PTSD and I feel horrible about it. I pray she doesn't get it but I know we'll just deal with it if she does. What other choice do any of us have?

    I have a question for the group, and I'm uncertain how to articulate it. But let me try:  How did the 2nd diagnosis affect your marriage? Emily has D, but Elizabeth was born with a cleft lip. Both conditions are caused by unknown factors, and multifactorial ones, but there IS a genetic component to both (although no one on either side of our families has either condition, that we know of). Sometimes I wonder if Bryan and I did the right thing by marrying--even though we love each other. I feel that something is "wrong" because both kids we produced have something wrong, health-wise. I wonder if it's some kind of a sign that we shouldn't have gotten married (although it's too late for that now). Iguess this is silly, and I don't dwell on it much anymore but it really bugged me for awhile. ANd contributed to us having only 2 children.
    Elizabeth (14), non-D, and Emily (18), diagnosed 5/06; pumping with Medtronic. Occasionally uses Dexcom Share.

    Offline janette2005

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    Re: Could this happen to me again?
    « Reply #23 on: September 03, 2010, 02:55:54 PM »
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  • The 2nd child dx has been a nightmare for me even before I got pregnant. I guess we can only wait and deal with what it comes.


    Janette (Mom of Adrian, dx on 08/25/2005 & Alexander Non D)


    Offline zookpr

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    Re: Could this happen to me again?
    « Reply #24 on: September 14, 2010, 10:58:40 AM »
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  • I totally get the "just knowing" feeling.   The only difference is I had that feeling about Lydia.  Ever since she was born and I have no idea why.  Maybe because she reminded me so much of my sister, Marah.  Marah was diagnosed with type 1 when she was 5.  She passed away at 19 (low blood sugar while driving.)  Lydia started having symptoms when she was 7.  She peed constantly, drank more than I thought possible, and was the moodiest thing!  I took her to the Dr on a regular basis but, they always explained it away.  Years later I would get the records and see that on the first visit her blood sugar was 240 and they did nothing.  Lydia was diagnosed at the age of 9.  DKA had set in and she had lost 20 pounds.  Once the diagnosis was given and we started our new life, I felt at ease.  I never even gave thought to one of the other kids being diagnosed too.  My Mom had 7 kids and only one of use had diabetes.  I had never heard of multiple diagnosis.   

    When Trevor started peeing constantly and drinking non-stop, I immediately recognized the pattern.  I knew even before the diagnosis but, I was in total shock.  Of course, we "caught" Trevor's very early and he was started on tiny amounts of insulin.  I walked around in a fog for over a month.  Everyone kept praising me on how well I was handling it but, the fact was ... I was just reacting and caring for him the way I did for Lydia.   When it finally hit, I cried hysterically.  Trevor wasn't an easy child to care for.   Blood tests and shots were almost more than I could handle.  Chasing him through the house, holding him down, I think I shed more tears then he did!  Surely this was a freak happening and we were done with diabetes diagnosis...

    Prisca had been very sleepy and lethargic and we thought she had some kind of bug.  I mean, their Dr was obsessed with the diabetes and checked their a1c's everytime  I took them in.   He started running blood work once a year on Chris and Prisca, just to be sure.   Then the bedwetting started and I knew even before I used Lydia's meter.   Our favorite greeting lit up the screen ..."HI".  I called Rob and said, "We have another one, we need to go to the hospital."  Prisca only had an overnight stay, the Dr said we knew more than the nurses so there was no need to stay.   I think I was just totally numb at this point.  Prisca wasn't handling her diagnosis well and that just made my feeling of anger and "unfairness" multiply.   I have to be honest and say, I still have these feelings.   After the loss of Rob, all the feelings I kept bottled up inside me came pouring out.  I am still struggling with this now.

    On the up side, my kids have lots of support from each other.   It is nice to see them stick up for each other and help when one or more is running low or high or just having an "I hate diabetes" day.  Blood sugar tests are just competitions to see who is doing better and carb counting is an art.  We have been able to help other families deal with first and second diagnosis which in some small way, helps us too.  Chris does get yearly testing but, only because we were asked to be in a study.   We are a little freak show in the Medical community.   Each of us has an autoimmune disease and Dr's are just fascinated.   I don't sit around and worry that Chris will be diagnosed, if he is, we know how to handle it and he will have plenty of willing hands to help him through.

    I guess all we can do as parents is pay attention but, not obsess.   We have been through this once so, if we are to go through it again, we will be stronger in the end.  Our kids borrow from our strength and confidence in these situations so, we have to be tough.  Even if it is only an act on some days, we have to teach them that we rule diabetes, it doesn't rule us.

    Mom to Chris (17), Lydia (15),
    Prisca (14), and Trevor (10)
    Lexington, SC

    Offline Kellie

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    Re: Could this happen to me again?
    « Reply #25 on: September 14, 2010, 11:03:51 AM »
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  • OMG Andie!  I never even questioned once that I married the wrong person bc our kids have D!  If you start thinking into stuff like that too much, you will drive yourself nuts!!!!
    Kellie ~ Mom to Christopher 10~ dx July 2004 and Emily 6~ dx June 2008 (Southern NJ)

    Offline Julie

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    Re: Could this happen to me again?
    « Reply #26 on: September 14, 2010, 07:27:52 PM »
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  • I have two kids with type 1. Michael was diagnosed when he was 3 yrs old in October of 1998. At that time, we did have our two girls tested and both came out with negative results. We didn't give the possibility of the other two kids getting it a second thought after that. then, in August of 2006, the endo suggested that we participate in the study where they are looking for specific antibodies. I said sure not a problem. We were told if we didn't hear anything, everything was fine, which i totally expected it to be. Well, a couple weeks later, we received a letter in the mail. My heart sunk. I opened it and it said that Ashley had tested positive for three out four and she needed to be retested. it went on to state that it didn't mean she had diabetes but it was possible that she may or may not develop it later. I made an appointment to have her retested. We never made it to that visit. Within a week, she started showing signs..frequent urinating, extreme thirst. I tested her and her bloodsugar was in the upper 400's. We went straight to the local emergency room. We were very upset but I think her brother Michael was the most upset. I could see the sadness in his face knowing his sister had to go through what he had been going through for the last 8 years. We just recently went to another endo appoint and they asked if we wanted to have my oldest tested...my answer is no. I don't want to know ahead of time. For me it was a sick feeling the minute we had read the letter about Ashley and I would just rather not know ahead of time again. maybe that sounds strange but thats how I feel. So far, Alex who is now 17, is diabetes free and we pray it stays that way. As for Michael and Ashley, both amaze me everyday with how strong they are.
    Julie
    Mom to Mike dx'd 10/98
               Ashley dx'd 09/06

    Offline Spurcell922

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    Re: Could this happen to me again?
    « Reply #27 on: August 13, 2012, 10:10:40 PM »
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  • Chris was diagnosed the week of thanksgiving in 2011.  I was by myself when he tested positive for a high blood sugar.  I was horrified, pregnant and alone.  I took chris to the hospital and several hours later my husband arrived.  Day two in the hospital I had accepted the diagnosis and knew that this was just our new normal.  After meeting several people and reading stories online I have wondered whether our new guy will get diabetes and if so, when.  He's four months old now and i know it can happen at any time.  I try not to think about it and know whatever is meant to be, will be. Time will tell if our family is destined to have multiple kids with D.  I think what worries me most is my lack of support from our families.  We went to dinner for my husbands birthday and Chris had a 38 BS before dinner even arrived.  I gave him juice to treat the low.  Then my mother in law says, "oh, the machine doesn't know to give him more insulin when he's low?".   What??!!  Ugh, can't even reply to that question without annoyance in my voice.  I only have a couple of family members that somewhat understand Chris' diabetes and all the little factors, but mostly our family doesn't get it and doesnt want to be responsible for administering insulin, even from the pump.  This means little to no help from others.  My husband and I don't really go out without the kids since dx because we dont really have anyone to leave Chris with.
    Sarah

    Mom to:
    Chris, 4 yrs old, dx 11/23/11
    Adam, 2 years, non D
    Pumping with Animas ping 7/26/12
    Using Dexcom G4 9/13/14

    Offline joanne

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    Re: Could this happen to me again?
    « Reply #28 on: January 26, 2013, 01:58:00 PM »
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  • Amazing stories. No guarantees.  Worrying won't change the future so for me it's a waste of emotion.  Somehow we find the strength when we need to pull it from the depths of our beings, for their sake.  In our case the second dx was for the same child. Michael, after 4 D years, has been recently dx with uveitis and RA. When his eyes became inflamed, we knew it wasn't pink eye, and the tests started. After ruling everything else out, the result was another autoimmune disease that he'll have to contend with forever.   Dealing with the fallout day to day, and learning to navigate new fears. Talk about shots... he's taken one in each eye in the past two weeks. But this weekend he's off to D-Camp weekend, and we march on.  Neither dx makes me worry more or less about my healthy daughter.  But both dx make him worry that something else is down the road, which makes me sad, but makes me more determined to show him strength.
    « Last Edit: January 26, 2013, 11:59:39 PM by joanne »

    Offline andrea

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    Re: Could this happen to me again?
    « Reply #29 on: January 26, 2013, 10:09:45 PM »
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  • Addition of something else autoimmune worries me, I've read so many instances of where you have one there's high probability of another.  Goodness, what a trooper Michael is, shots in each eye.  I thought I had eye issues.

    I hope he has a blast at d camp

    Mom to Annelies, 14 (Dx 18 Mar 08~Pumping MM Oct 08-May 12, Omnipod May 12-Aug 13. tSlim Aug 13+ ~Dexcom Oct 11), Katy, 18 (non-D) and Jory (non-D/US Navy)
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