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it's confirmed, 2nd child with D :( long..

Discussion in 'Parents of Children with Type 1' started by lhazc, Jun 15, 2010.

  1. lhazc

    lhazc Approved members

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    I knew it was coming, I posted a few weeks ago about WWYD with high BG reading, long story short I did take him in to the hospital (although not the night his BG spiked up because by the time we were about ready to go it was trending down on its own) anyway it wasn't long and the readings were back in the 160-280 range and not recovering so we headed to the childrens hospital and were DX. type 1 :(
    the good thing is that we caught it early, he never had any ketones at all! He never even felt bad, no Wt. loss typical symptoms and for that I am glad. (I am thankful for trialnet because that is how we knew to be keeping our eye on his BG, last fall he was positive for all three (or four?) of the antibodies) He is taking it great and right now his honeymoon is strong so we are only having to bolus with meals at 1:30, his readings are wonderful and mostly staying under 160 and we have not had any lows. I am so thankful that things are going so well... which is why I feel a bit guilty for being DEVASTATED, I'm just so sad, mostly because I know how hard it is to do this every day. Its taken me this long to post because I just couldn't make myself put it in writing.
    And I need real practical advice on how to manage supplies and day to day stuff with two, I was barely able and felt overwhelmed with one! He is using novalog with meals, no basal needed for now. I am so glad this board is here, BTW we were given a CWD info box at the hospital, It contained some wonderful and helpful information and video ( I haven't watched all of it yet, it makes me cry) thanks to all
     
  2. Becky Stevens mom

    Becky Stevens mom Approved members

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    Lisa I am so sorry:( There are some wonderful people in here that have 2 children with diabetes. I will contact one of them in FB and have her get in touch with you. We are all here to support you anyway we can.
     
  3. lynn

    lynn Approved members

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    Ugh, I'm so so sorry to hear about another diagnosis. It is heartbreaking.:cwds:
     
  4. jewlzann

    jewlzann Approved members

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    heart breaking--i know

    I am so sorry to hear.... I have two with D as well. Diagnosed just 51 days apart, did not even have time to worry about the the other child having D. Probably a good thing. Hang in there....take care.
     
  5. bgallini

    bgallini Approved members

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    I'm so sorry. It must be devestating....even though you knew it was coming....:(
     
  6. Yellow Tulip

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    So sorry to hear that...
     
  7. mom2Hanna

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    I am so sorry.
     
  8. Anja821

    Anja821 Approved members

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    I'm sorry to read the news. You'll get into a grove soon....and you have lots of support here for you!
     
  9. BeerMargaritaMom

    BeerMargaritaMom Approved members

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    This is where the old sayin "two is better than one" is totally wrong

    I haven't been on the CWD boards for a very very long time. I have a friend from the boards on FB that sent me a message with a link to your post and asked me to weigh in.
    honestly you sound great and I remember those same thoughts when my second was dxd. Only she was in DKA almost and we had no idea. She too tested positive for 3 makers with TrialNet. It was two years after the test that she was dxd. I always sort of held my breath and prayed but in my heart I knew it might just be a matter of time. She (my second dxd) was 9 and very self sufficient so I never noticed her drinking or eating more than normal. I did notice mood swings but after all she was almost a pre-teen and always had been dramatic. Then my husband took our boys camping (including our 5 year old diabetic) he didn't have cell service thus couldn't call me with nighttime numbers so I was up all night worrying. That is when I noticed that my daughter got up 5 times to go potty since she was sleeping in my bed. Around 4am and her 5th trip to the potty I knew. I got up at 5am and cleaned the entire downstairs. I didn't test her cus I was afraid. At 7am she woke up starving, I asked her to test - she was at 254. She said (at age 9), "**** - im diabetic", I hugged her and told her to pack a bag. We only stayed one night in the hospital so they could get fluids in her along with potassium and get rid of the ketones. We didn't need to stay longer cus lets face it we already know how to care for a diabetic so no need racking up hospital bills.

    As far as feeling devistated - well why the heck shouldn't we feel that way regardless of how early we catch it. It is difficult and sad and really pisses me off that my kids will have to deal with diabetes long after they leave me. I think it was worse for me the second time around cus I had made my peace with God after my son was dxd, in fact I had become closer to him. When my daugher was dxd I became angry - and I still am. I find myself screeming at God. I haven't been to church more than twice since she was dxd over a year ago. I don't worry that I stopped believing becuase honestly for me to be as angry as I am I have to believe. I do pray that you have a strong faith and can find peace and comfort in that faith. I hope to do the same at some point.
    I am so glad that you son was not in DKA and didn't have any ketones - that is amazing and wonderful. It is also great that he only needs the one shot. I wish it were the same for Amber - we came back home in fulltime mode. I honestly think that my daughter had been developing it slowly over a two year period. My husband and I look back and can remember when the real mood swings attitude started. I tested her and my non-diabetic kiddo at least twice a month while they slept or when they acted really off. My daughter always tested within range or sometimes even slightly hypo (upper 60's). My middle kid (non-D) sometimes tests slightly above range or on the high end of normal. I worry constantly - he refused to do the trialnet study so I have no idea if he has markers or not (he was 5 at the time and we didn't want to force him). My husband and I had no markers at all three years ago when we tested our daughter. I will never understand diabetes.
    Anyway - I don't know why I babbled so much -
    Each of my kids carry their own diabetes pack (my daughters is a small coach purse cus her daddy spoils her, my 6 year olds is a soft sided lunch box. They each have a glucagon, tester, strips, infusion set replacement, juice, and glucose tabs. I havn't yet figured out what my son will carry when he is too old for a lego lunch box, maybe a small backpack or srawstring bag. (I don't think I will get him a purse - oops satchel - little Hangover humor).
    Both my kids are on Animas Pings so that makes things eaasier. THe four months that my daughter was MDI and my son was using Ping were hard. Trying to explain to my daughter that she can have the extra snack but would need an extra shot while her younger brother munched away on a juicy apple was hard. My cabinet outside my downstairs bathroom looks like a pharmacy with boxes of infusion sets, catridges, glucose tabs, alcohol swabs, syringes (just in case), and IV prep pads. Animas sends us like 5 boxes of infusion sets and cartridges every 3 months for each kid. We only use 40 -45 of each per kid in a 90 day period so they are starting to stack up a bit. I think that this summer we may end up using up all our extra infusion sets since all my kids joined a swim team and so the infusion sets seem to be coming off after two days due to all the time in the water. I keep a basket on the kitchen counter with test strips, glucose tabs and alcohol pads for daily use along with extra batteries and a "How To Care For Type 1 for Dummies" notebook I made for when their is a sitter or relatives in town (it doesn't say for Dummies on it) :) . I always make sure I use their own meters for checking - two reasons - the Pings are paired with their spceifc meter so we can dose remotely and also we want accurate info when we download at our endo appointments.
    The worst part for me is the nightime checks. I admit (and I may get lots of slack for this from others - for those of you that might want to get on me about the next comments please keep in mind this thread is not about nighttime checks) - anyway...
    Before my daughter was dxd I would only get up a few nights a week to check BS in the middle of the night. When my son was first dxd (really the first entire year) I would check every night. then after I learned what his BS was likely to do I wouldn't get up the nights that he was within range when I went to bed at 11, as long as he didn't ahve any IOB, the day wasn't intensly active, and he didn't eat anything like pizza or high fat pasta. i would get up if he was low and needed carbs, was high and needed a correction or if he had lots of IOB, ate pizza or pasta or if we had a really really active day (like a themepark day).
    Now take all that info that you have to consider and multiply it by two. There are very few nights that both of my kids meet all MY standards for a non-wake up night. I also checked my daughter every night when she was still MDI becuase she was still honeymooning and lantis just caused us trouble.
    Well I think I have written a book and probably bored you at that. I hope I provided some useful info (doubtful). ;)
    I know it all sucks and I am sorry that you joined this exsclusive subclub of CWD. I pray that you find peace. All will be well. You are here in the forums so I say that says alot about your willingness and abiltiy to care for both your kids and your family. I know it isn't a good thing for anyone to ever be dxd - and I would never ever have wished for another one of my kids to have been dxd - but I do feel like my oldest and youngest have a bond that they didn't have before. They feel each others pain and empathise with each other. At least when they are around each other they never feel different, ashamed, or alone. I hope you don't feel alone because you have those of us in CWD. I am not here much - life is busy - but I will check back soon - plus Becky Stevens Mom always knows where to find me.

    Remember - If you are going through Hell keep going. (Winston Churchill)
    please excuse all my spelling mishaps - I am hosting a sleepover and I have 6 kids running through my kitchen and spell check on these boards isn't the greatest. (no offence Jeff - nothing but love for you guys).
     
  10. skimom

    skimom Approved members

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    I am so sorry you have joined our little sub-club. Having two with D is weird - on one hand we know what we are doing when teh second dx hits but then it is hard because we know what we are dealing with and it sucks. My two have a wonderful bond - they look after each other and compare notes on those wacky days. They use the same insulin, supplies etc - I too buy in industrial quantities ( yet I still run out of stuff) . There are dead test strips everywhere - and I mean everywhere!!
    There is nothing I could say to help you feel better except that you are not alone and we are all there for you. Take care of YOU so that you can take care of your sweeties. There will be that day when the first thing out of your mouth isn't "what is your BG" and then you know that you have won over D..
     
  11. Barbzzz

    Barbzzz Approved members

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    I am so sorry. ((HUGS)) :(
     

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