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So hey

Discussion in 'Parents of Children with Type 1' started by lightnng, Apr 15, 2013.

  1. lightnng

    lightnng Approved members

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    An what I suppose is an interesting twist of fate, I am now legitimately part of this forum as not just an adult type 1 myself, but as a parent of a 10 year old son who now shares yet another thing with me.

    Hi everyone. Some of you know as I used to post here under the CGM subforum. Just got off the chair where I slept, starting the morning in Oakland's Children's Hospital next to my son's bed.

    I caught it real early - the doctor said that normally they don't see people come in at this stage, usually it gets misdiagnosed for another couple to few weeks. But being type 1 myself I was of course alert to the signs. I would have caught it even earlier but I have been so busy with work that I barely spent any time with the kids the past couple of weeks. I had them both to myself this weekend, and after 24 hours of seeing his mood, lethargy, frequent urination, heavy consumption of liquids, lack of appetite, and practically every other textbook sign, I grabbed my backup meter and did a finger test. 398.

    The one good thing is that when I got to the ER at the local hospital and explained everything, they took me a lot more seriously than they otherwise do, and he got admitted within 10 minutes, and in a bed and hooked up with IV's within 30. He was transferred to Children's within 3 hours, and it is quite a fantastic facility. It is no wonder that people will fly their kids from other states here. Excellent care doesn't begin to describe it.

    Anyway, hi again everyone, I now have a double membership. I wonder if we'll get matching syringes?
     
  2. Mom2CNC

    Mom2CNC Approved members

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    Hey there. So sorry you had to join this side of the forum.... I too am T1 for 27 years and I started noticing something not right with my 6 yo daughter. I SHOULD have caught it a little earlier myself. She was just home from a birthday party (cake, ice cream, pizza:rolleyes:the whole works) when I tested her- she was 590:(

    The one thing everyone always says to me is how lucky we are that at least if she has to have the big D, I can be there for her and know exactly what it's like & what to do for her. I guess it's true but I still sure wish she wasn't sharing this with me.

    It has been a year & 1/2 for us, and YES we do share:) We are both on the Animas Ping and I think it really makes her feel secure knowing I am with her.

    Best wishes to you & your son!
     
  3. Turtle1605

    Turtle1605 Approved members

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    I'm so sorry. Even though you are more than familiar with T1D yourself, I'm sure it is heart-wrenching to have something wrong with your child that you can't fix. The very, very good news is that he is in very, very good hands. :) Hope everything is going okay for you and hope your child is feeling better!
     
  4. smcnair

    smcnair Approved members

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    I too share diabetes with my son. He was diagnosed at 4.5 months and it was also caught early, although by an anaesthestist, when he was admitted for surgery. I was misdiagnosed with type 1 in 1976 at the age of 18 months. He was diagnosed in August 2010, so we have been sharing this journey for about 2.5years. I started pumping because he was pumping and will never go back to needles!
     
  5. lightnng

    lightnng Approved members

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    About to head out back to the hospital. I spent the first day and a half with him, his mom was there last night. I'm really glad we are on such good terms, otherwise this would have been much more complicated.

    I have to constantly stop myself from the natural instinct "to take over" and drive his treatment, which is really really hard. He needs to get his own education and experience. It's really hard.

    For now they want him to learn the ropes with a regular treatment - shots and pokes. I get that; it's important that he learns how to recognize highs and lows, be able to function without being completely dependent on gizmos and such. But I've brought up a CGM and a pump and possibly other ideas like a tubeless delivery system. We'll have to figure this out in the next six months.

    And because you guys will understand and I have nowhere to share... I keep crying when I'm by myself. On one hand, sure, he's "lucky" to be diagnosed in 2013 and with a dad who is a T1 too - it certainly gives him a much softer landing, since his whole life he had been around me. Heck, I've been invited before to speak to groups about my own story because it's supposedly inspiring. He is taking it very very well. On the other hand, I KNOW what he's up against. And I hate it. I really hate it a lot.

    Where is the damn cure?
     
  6. denise3099

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    I'm so sorry. I was going to ask if you're sad, then I read your next post. I mean I know we are all sad but sometimes when a parent had D, then your kid gets dx'd there is a special sadness that goes with that. It's ok to cry into your pillow. Just not in front of your kid. You already know that though.

    I'm sorry your family is dealing with this.
     
  7. lightnng

    lightnng Approved members

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    Yes. Exactly. A special sadness is a good way of putting it.

    I am with him again right now. He is adjusting so well already, and I'm happy for him and it makes me feel that sadness so acutely inside it's hard to keep the tears from coming up. Thank you for these kind and gentle words.
     
  8. denise3099

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    It's just so hard to console a parent who KNOWS exactly what's in store for their kid. Like I can tell a new parent about the new normal and all the great role models and how your kid can be anything he wants, etc. But you know it sucks. You as a T1 parent know that no it's not the worse thing in the world, but it still sucks and it always will. :( I think that's where that special sadness comes from. Much as you can look at all your own accomplishments and those of other T1s in the world, you know every day that all things being equal, you'd rather you didn't have D.

    Normally I'd be pointing out all the great success stories and the neat blogs like Kerri's at SUM. it was helpful to me to picture my dd as a grown lady doing well despite D, like Kerri, getting married, having babies, being happy. But how can I tell someone who knows all the highs and lows of D to look on the bright side? (Oh, I made a pun :p ) Sure there are worse things and there are great accomplishments and successes to be had, but you yourself know that whatever you tell your kid, and whatever we tell you, that D just sucks.

    I'm so sorry. It's not fair. I think there should be a max on D in a family, and a max on health issues entirely. I bet you're super proud of your kid. Just be sure he can come out and tell you that it sucks sometimes and that you let him know that yeah it does. You're going to do a great job. :)
     
  9. SandiT

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    I would be stunned if you didn't feel an overwhelming urge to cry. I didn't really know as well as you do what my daughter has to look forward to, and I cried. I called my husband one morning at 4 am and just fell apart.

    It's heartbreaking when our children experience suffering. It's worse when we can do little or nothing to fix or correct it.

    All I could think was how painful it was to have to hurt my child. Even for her own good, it still felt (emotionally) so purely wrong and evil.

    It's a very confusing and conflicting feeling... that determination that your child WILL get the necessary treatment... and the converse feeling that, because the treatment hurts, it feels so wrong and horrific.

    There is helplessness, there is sorrow, there is loss, there is regret, and even knowing that we didn't cause it... there's guilt anyway (at least for me). Such a major mish-mash of painful emotions.

    We work our butts off to be strong for them, but inside, we know and we grieve.

    It's okay to grieve, and it's normal to grieve on behalf of your child... and on behalf of your own hopes for a happy, healthy, needle-free life for your child. Once gone, we really recognize, internalize, and grieve those basic hopes that were once so self-evident.
     

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