Replies to This Discussion

Permalink Reply by Kj on November 18, 2011 at 7:28pm

Wow, I truly feel for you. The hardest party of my son being diagnosed at 3.5 yrs, was the first shot, because almost certainly their is not turning back. One thing that made me feel better was the insistence of the Seattle Children's Hospital community telling me that I didn't cause my son's diabetes. I remind myself of this constantly. Don't forget how blessed your daughter is to have you - parents who are knowledgable about diabetes - you are so far ahead of most parents (like myself) who knew nothing to begin with.

Permalink Reply by aliceclones on November 18, 2011 at 7:53pm

We have been there. Be glad they are only making you wait for a post prandial of 130, we had to wait until my daughter had a post over 200. It was the pits watching her blood sugar climb, and being helpless to do anything! Just remember this is not your fault. No one knows what causes diabetes, and so there is nothing that any parent can do to prevent it. Type 1 has nothing to do with exercise, or eating, and don't let anyone tell you otherwise. Diabetes is an autoimmune disease. I heard one doctor describe it as the opposite to cancer. In cancer the antibodies won't attack diseased tissue, in autoimmune diseases the immune system wont stop attacking healthy cells. No one blames cancer patients, and type 1 is just as uncotrollable and unpredictable. you will make it. One day at a time.

Permalink Reply by Rhee on November 18, 2011 at 8:40pm

My daughter was diagnosied at 2.5yrs, you will be able to deal with it , and nothing you do or they do causes or can prevent type 1 diabeties, not that knowing that helps with the guilt at dx, but it will help eventually. sending hugz , and recommending that you adopt the t1 lifestyle ( Healthy eating ( low fat), reg exercise) now.

Sending hugz , its so awful when your child is dx and soul destroying to know you can't make it better. This part gets easier.

Rhianna

PS: be thankful you got it dx so early Cass went in in DkA and almost died, 3 days ICU, 3 days high dependancy and then another 4 days in hospital to satabiize. Frightning ( and Id taken her to dr 3 x in the previous week cause something wasn't right noone picked it up)

Permalink Reply by Roggen Douglas on November 19, 2011 at 12:03am

I was terrified and didn't stop crying for two weeks when my baby girl was diagnosed, I was the same, If I hadn't eaten so much junk when I was carrying her would things be different, I have no history of type 1 in my family either so can't see where it has come from, I felt better when she had her first dose of insulin....she went from being this little girl who cried and moaned all day ( understandably) back to my happy little angel! We are almost a year in now since diagnosis and she's doing fab! Just knowing there are lots of other families in the world going through the same thing and being able to talk to people on this site has helped enormously.
You will be able to do this, if I can do it then anyone can. As I'm sure everyone here will say...feel free to have a chat anytime, I don't know if I can help but I'll sure try, stay strong xxx

Permalink Reply by sarhow on November 19, 2011 at 4:50am

There's no known way to prevent type 1, although I understand why you feel like it's your fault, but it's not. (I have type 1 and then when my 23 month old son was diagnosed, I felt like you do!).
You might want to ask them if there are any trials she could join that try to preserve beta cells at diagnosis; I think some have had some success. JDRF has a trials website, http://www.jdrf.org/index.cfm?page_id=101984
you can do it. good luck.

Permalink Reply by Jen on November 19, 2011 at 9:21am

I was looking last night about the research going on on preserving cells. I was trying to contact them when my computer locked up. I will try your link. Thank you.

Permalink Reply by Serena on November 19, 2011 at 12:47pm

Jen,
If you're interested in finding out about clinical trials for your daughter, you can get more information about the latest T1 trials from: http://www.diabetestrialnet.org/

And, of course, I'll reiterate what everyone else is saying. Please don't blame yourself. There's nothing (NOTHING!) you could have done to guarantee your daughter wouldn't get diabetes. And, yes, you will be able to handle it. There's been a posting going around that says, "You never know how strong you are until being strong is the only choice you have." I think that's very true with being the parent of a child with type 1. I never would've thought I'd be able to give my child a shot, but you do what you have to do to keep them healthy. And, fortunately, support and understanding are only a keyboard away... <3

Permalink Reply by Jacob's mom on November 19, 2011 at 6:00am

oh jen, this is so not your fault, like all the others have said. We all feel your pain. There will be hard times ahead but you are stronger than you know and you can absolutely handle this. Knowledge is power with this read all you can, you will be smarter and know your child better than her doctors, you already do. you will have an incredible bond with her, maybe stronger than it already is. But also, live your life, you have a beautiful little girl that is so much more than diabetes. Sadness is normal but her spirit will always keep you smiling. kids are so resiilient this will by part of her like she has blue eyes or what ever color they are. especially being so young she will surprise you with her tolerance and acceptance of all this. My son was diagnoses at 10 if there is a 'good age' to be diagnosed i would say your daughter is at it, she will understand and be compliant not defiant. Hang in, YOU ARE NOT ALONE! amy

Permalink Reply by Scott on November 19, 2011 at 7:30am

Hello Jen,

I'm sorry to hear that you are experiencing such an unexpected and awful shock. I (and most everyone here) can tell you that you will feel better and more in control in time. You are definitely going to have moments in the coming year when things feel out of control but I promise you that it won't be that way forever.

The love that you and your husband have for your daughter will be more then enough to keep you energized as you learn how to help your her navigate this new challenge. My only piece of advice is something that you are already doing - find community. I waited too long to find people that live the same day that I do. As others have said, you are not alone but the more important facet of that sentiment is that not feeling alone is a life saver. There is an amazing comfort that comes from knowing that you aren't the only person checking a BG at 3 am. Find blogs, people on Twitter, FaceBook support pages, they'll be invaluable to you over the coming years.

I'm sorry for your news but happy to meet you! Please do your best to not blame yourself, I know it's hard but beating yourself up about something that you have no control over isn't the way to go. In fact, learning to accept that not everything is in your control would be a first and wonderful step in learning to manage your little girl's type I. God's speed.

Best of luck,
Scott Benner
www.ardensday.com

Permalink Reply by Jen on November 19, 2011 at 9:37am

I want to thank everyone for their support. Its weird, I'll be talking with my daughter about how to control her sugars. About counting carbs then giving the insulin. We even talked a little about how the pump works. We have talked about what happens when there is a low. It is sorta like thinking about what I do to me, but then out of nowhere I think about who I am talking about... her, not me. And then I need to leave the room, as the reality comes crashing down. Having diabetes can be overwhelming, but this is sufficating. I wonder if it would be easier not to know how it feels to have diabetes.
I know it will get better. So forgive me for feeling sorry for myself. But currently I am not doing too good.

Permalink Reply by Hockey Mom on November 19, 2011 at 10:08am

I am so sorry for your diagnosis - genes may somehow be the answer to this puzzle that they will solve someday.

My son was also diagnosed early and never had to go to the hospital. I fortunately knew the signs because my cousin had type 1 diabetes and my mother was always paranoid that I would come down with it. I was always tested at every checkup and even in college I can remember sending her the results. My great grandparents were also diabetic in the old days before insulin pumps and better insulins. But, none of the other cousins ever developed diabetes.

A year after my son was diagnosed at 16, another cousin's 14 year old son has now also been diagnosed. The diabetic cousins children are fine so far. It is hard to know until they discover the secret why it happens.

We did put my son through a clinical trial and even though the trial was not approved by the FDA, he is still honeymooning and making some insulin after two years. You may want to consider it.

Permalink Reply by Aimee on November 21, 2011 at 12:45pm

Hi Jen,

When my daughter was diagnosed I asked myself all of those same questions. I completely understand how you feel. The day she was diagnosed the doctor said to me "This is not your fault; there was nothing you did to cause this". It was like she read my mind, I broke down crying for the first time that day. As parents we want to protect our children and when we don't we feel like failures. I have heard several parents talk about the grief and loss that comes with diagnosis and I would add guilt as well. My daughter loved juice as a toddler and I gave her a lot of really watered down juice so for a while I wondered if the juice could have caused the diabetes (even though I know that there is no research to back this up).

I don't have the answers, but I can tell you that it will get easier with every passing day (it has been 4 years now for us). Allow yourself to grieve and seek help if you need it. This is a huge, life changing experience. Please give yourself permission to not be perfect (none of us are). Just do your best and your daughter will be fine. I wish you the best and please feel free to reach out to me if you need someone to talk to that understands.

Aimee

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