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Tue Oct 9, 2012, 04:07 PM

My world changed forever yesterday.

Last edited Tue Oct 9, 2012, 05:08 PM - Edit history (1)

I have three children. Two daughters, ages seven and four. One son, 11 months.

Yesterday, my four year old was diagnosed with Type 1 diabetes. We're just starting education and training, and she has to stay at the hospital for several days for testing and monitoring. Everything is a whirlwind right now, and believe me, having to stick your sweet four year old daughter with needles like a pincushion several times a day and draw blood is not what any parent should have to deal with. But we understand that things could be worse, and this is manageable. And she's already proven to be the bravest, strongest little girl I've ever known. We'll all get through it and move forward.

But you know what? Now, and for the rest of her life, she has a pre-existing condition.

But she can be on my insurance until she is 26. And no insurance company can drop or deny her for it.

That is, unless Romney wins and he and the Republicans do what they promise to do: repeal Obamacare.

I was proud to vote for President Obama in 2008, and I always was going to this November.

But now it's personal.

Elections have consequences. I'll be damned if my 4 year old daughter's life will be one of them.

Forward.

66 replies, 13956 views

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Arrow 66 replies Author Time Post
Reply My world changed forever yesterday. (Original post)
RedSpartan Oct 2012 OP
southernyankeebelle Oct 2012 #1
OldDem2012 Oct 2012 #2
sense Oct 2012 #3
Gothmog Oct 2012 #4
yellerpup Oct 2012 #5
2pooped2pop Oct 2012 #6
TheOther95Percent Oct 2012 #7
WilliamPitt Oct 2012 #8
Cleita Oct 2012 #9
slackmaster Oct 2012 #10
berni_mccoy Oct 2012 #11
truebrit71 Oct 2012 #12
sinkingfeeling Oct 2012 #13
abelenkpe Oct 2012 #14
deathrind Oct 2012 #15
Ilsa Oct 2012 #16
Tsiyu Oct 2012 #17
murielm99 Oct 2012 #18
hue Oct 2012 #19
ncsoapmaker Oct 2012 #20
ThatsMyBarack Oct 2012 #62
AlbertCat Oct 2012 #21
Cha Oct 2012 #22
nolabear Oct 2012 #23
Whovian Oct 2012 #24
renie408 Oct 2012 #25
still_one Oct 2012 #26
Ms. Toad Oct 2012 #49
mzmolly Oct 2012 #27
Justice Oct 2012 #28
JNelson6563 Oct 2012 #29
classof56 Oct 2012 #30
lunatica Oct 2012 #31
catbyte Oct 2012 #32
HopeHoops Oct 2012 #33
rasputinkhlyst Oct 2012 #34
skeewee08 Oct 2012 #35
Not a Fan Oct 2012 #36
lunasun Oct 2012 #48
Not a Fan Oct 2012 #52
lunasun Oct 2012 #66
lillypaddle Oct 2012 #37
pacalo Oct 2012 #38
trailmonkee Oct 2012 #39
madmax Oct 2012 #40
bluethruandthru Oct 2012 #41
one_voice Oct 2012 #42
Tien1985 Oct 2012 #43
TuxedoKat Oct 2012 #44
IADEMO2004 Oct 2012 #45
Shanti Mama Oct 2012 #46
Not a Fan Oct 2012 #53
entanglement Oct 2012 #47
Ms. Toad Oct 2012 #50
renate Oct 2012 #54
Ms. Toad Oct 2012 #59
defacto7 Oct 2012 #51
Missycim Oct 2012 #55
Blanks Oct 2012 #56
Jackpine Radical Oct 2012 #57
revolution breeze Oct 2012 #58
Odin2005 Oct 2012 #60
SCantiGOP Oct 2012 #61
4edwards Oct 2012 #63
WeRQ4U Oct 2012 #64
sweetapogee Oct 2012 #65

Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:19 PM

1. Yes that is some terrible news for sure. But your little girl is going to show you the way.

 

I remember when I was a little girl and my Aunt, her daughter my 5 yr old cousin at the time and one of the boys. We were walking home and her mother was crying her eyes out. Back then in the early 50s it was kind of a death situation. She was the kind that she need shots. She also had to keep choclate and soda around in case she went into a shock. They were able to get her on the right track. She grew up and even got married. She died from breast cancer. She was 55 yrs old. But the point is they didn't expect her to live at that time to be a teen. Things have really progressed. Good luck. Oh don't treat her different then the other children. Don't let her make it a crutch.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:22 PM

2. Hang in there. Our thoughts are with you, your little girl, and your family. nt.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:23 PM

3. I'm very sorry about your daughter's

diagnosis. I ran across something on pubmed a couple of days ago. It's just one child, but perhaps there'll be more research in this area that might help her in the future. I will hold a good thought for her and for you. Definitely one more reason to vote for Obama.

http://www.ncbi.nlm.nih.gov/pubmed/22729336

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:28 PM

4. Hang in there

You and your family will be in my prayers

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:28 PM

5. Have courage, RedSpartan.

Having Type I diabetes rampant in my family, I know how difficult it is to adjust to the changes, but you and she can do it and still be happy. It will eventually become just a part of the routine. Yes, we must vote for Obama if we want to live decent lives. I'd vote an extra time just for you if I could.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:29 PM

6. I have two grand kids with JD

One was diagnosed at 18 months. He almost died because they thought it was the flu.

I know how hard it is to stick them. One thing to remember is that you have to give them the carbs and stick them. You can't get by with omitting carbs so they don't get stuck. This is something grandma,(me) was guilty of.

Once your daughter gets regulated, which may take a couple of years depending on how fast her insulin making completely quits and she gets pretty stable, you will be able to get a pump for her.

Insurance is critical. People in office make decisions for us that is meant to screw us out of insurance don't seem to care that without it, our kids can't make it.

Good luck to you. We are getting ready for halloween around here. Since I have two diabetic grand kids we are having a party with some candy and cookies but mostly with toy prizes. The kids are able to eat almost anything with a little planning though.

It probably doesn't seem like it now, but you and your daughter will do just fine. Kids are great with illness. It's adults that are not so good. lol

I think there is an excellent chance that your daughters diabetes could have a cure before she is grown if they continue with stem cell research.

I wonder why though, so many more kids are being diagnosed with this than before? I wonder if it has anything to do with GM foods?

Anyway good luck to you and your family. Oh and check around for supplies not covered by insurance. My daughter had been paying hundreds out of pocket each month for cost not paid by insurance then found another place that saved her about 80% of those costs. The doctors who knew she was struggling, did not ever inform her that there were other places to get the pump supplies. We all assumed she had to buy from minimed who makes the pump.

again, I'm sorry that you guys are going through this. It will be difficult, but you will be surprised at your daughters ability to accept and deal with it.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:30 PM

7. My niece was diagnosed this year too.

Elections definitely have consequences. I'll be damned if her life is one of them either.

I would trade places in a second for that darling little girl and I'm sure you would do the same for your daughter.

I have found the resources at the Joselin website very helpful.

My sister is exploring an insulin pump for her daughter and she's found the discussion boards (I think through Joselin) to be very informative.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:31 PM

8. My wife has MS.

This election is utterly vital to our future.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:31 PM

9. That's not good news. But the good news is that children

deal with their diabetic condition very well, even better than adults much of the time. Here's hoping for a bright future for her and for you that you get all the help you need to help her.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:32 PM

10. I'm sorry about the diagnosis, but glad that you got it early and are taking care of her

 

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:33 PM

11. I am so sorry. Keep your chin up. I have two boys with type-1.

The technology for managing type-1 is better than ever and improving every day.

The promise of a cure is on the horizon of their lifetime.

Please don't hesitate to PM me if you need support.

The forums at http://www.childrenwithdiabetes.com/ are a tremendous help to anyone getting started living with this disease.

I've lived with my boys having this disease for more than 8 years now.

And remember, it's ok to say "diabetes sucks".

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:33 PM

12. My wife was diagnosed with breast cancer last year....

...and she kicked its' ass...but she has a pre-existing condition now....elections are personal...GOTV!!!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:33 PM

13. I'm very sorry. Just keep reminding yourself that even Type I isn't a death sentence.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:34 PM

14. I am so sorry to hear about your daughter

One of our good friends from grade school to today has type 1 diabetes. He's in his early 40s now, has two beautiful kids, runs his own business creating web content. Don't get me wrong. Diabetes sucks. But you will find your neighbors, friends and family will come together to help your daughter out. Of course your story highlights the reason why we need to give Obama a second term and give him a democratic controlled congress to help out.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:44 PM

15. Sorry to hear this.

But know that with proper knowledge, treatment and lifestyle adjustment this can be managed and your little girl can still have a full, fun, happy, loving life.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:45 PM

16. My oldest also has a pre-existing condition.

Yes, this election is very personal for our family, too. It's so personal, that my best friend can't see how damaging a RMoney presidency can be to my family. And she's supposed to be a therapist as well as my friend, and she's fucking clueless.

I wish the best for your daughter and your family during this very difficult time. I'm hoping for cure for her, from research that has been both publicly and privately funded. I truly believe she'll see one in her lifetime.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 04:55 PM

17. A hug for you and yours





There is so much on the line with this election, and your post is the best proof of that.

I hope all turns out well for your little one and your family.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:08 PM

18. My heart goes out to you and your daughter.

This was so moving and well-written that you should submit it to your local paper as an LTTE.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:16 PM

19. Don't give up hope! Much research is promising re: stem cell therapy in this area!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:16 PM

20. Hang in There Red

I will keep you and your daughter in my prayers. I have always voted democrat all my life and I voted for Obama in the last election. This will be the first time I have ever voted because of my interest. My fiance is Canadian and I would so love to live here in NC with her. Because we are in a same sex partnership that is very difficult. She can get me to Canada on a fiance's visa, but I cant do the same for her, as same sex partnerships ( we are soon to be married, you can say that in Canada ) are not recognized here. My mother is in her 80's , not in the best health, and I'm having to choose between being here for my mom and being with my soon to be wife. It could be worse ...I do have siblings to help, but the cost of travel, relocating , time off from a new job...its all been a bit overwhelming for me.
I will say a prayer for you and you daughter as I do everyday that President Obama is re elected. Cause for me as well as millions of people ...this shit just got personal !!!!!

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Response to ncsoapmaker (Reply #20)

Wed Oct 10, 2012, 10:48 AM

62. Welcome to DU, ncsoapmaker!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:16 PM

21. Genes and chromosomes have no feelings, do they!

But thankfully science has got the insulin thing down pretty good.

And maybe, in her future, stem cells or something can reverse the condition!


If the religious nuts who hate and deny science don't have their way.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:20 PM

22. We're fighting for you and your daughter,

RedSpartan..and all those who would be so Hurt by the Romney take over of our government.

mittLies stupid vow to Repeal ObamaCares. What a monster.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:25 PM

23. So sorry. My aunt w/ type 1 died last year. She was 89.

You all can manage this. Hang in there. I won't pretend all will be well but it's possible. Learn all you can and don't let her feel sorry for herself. That's my two. Good luck!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:28 PM

24. I'm so sorry for this new challenge you have to face and hope that Obama remains in office

 

to solidify the ACA for your family and the millions of other families in similar circumstances.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:30 PM

25. Good luck. My thoughts are with you and your daughter.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:40 PM

26. It would take a constitutional amendment to repeal the ACA. However they can weaken it if they have

The power

My best wishes for you and your family

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Response to still_one (Reply #26)

Wed Oct 10, 2012, 12:30 AM

49. It doesn't -

Congress wrote it; congress can repeal it. Just because a law is constitutional doesn't mean it takes a constitutional amendment to repeal it - the ACA is very much at risk on November 6.

So yes, this election is a life or death matter for our family, as well.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:44 PM

27. I'm so very sorry.

My husband is type 1, diagnosed as a young (otherwise very healthy) teen.

If I can be of help in any way, please drop a note.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 05:56 PM

28. I am so sorry. My mom was diagnosed with advanced lung cancer this year

I am thankful every day she has good health insurance. It is a tough fight, but at least she has the ability to obtain the best treatments available.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:02 PM

29. I will think of your daughter and smile

as I vote in November!

On to victory for all of us!

Julie--got something in my eye again...

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:06 PM

30. Stay strong, and please know all good thoughts and wishes are headed your way from DUers.

Special thanks for reminding us how important this election is. Many consequences would be paid if Rmoney were to win. Let us work to not let that happen!

OBAMA/BIDEN 2012

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:08 PM

31. Yes. It is very, very personal

No one should have the kind of life or death power that the Republicans want. History won't be kind to them.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:26 PM

32. I'm so sorry, RedSpartan. My husband was diagnosed at age 4

and that was 53 years ago. He has some major complications now, but treatment now is SO MUCH better than it was in 1959 and he was very healthy until about 4 years ago. Chuck's family defied the conventional wisdom at the time which was taking 2 shots of insulin per day and instead took at least 5/day after meals, snacks & bedtime to better mimic a healthy pancreas. PM me if you need to talk. We've been married for 28 years so I've seen and experienced it all.

Take care and please know that you, your daughter, and the rest of your family are in my thoughts. I am serious about my offer to talk. I'll PM my phone number if you need to talk to somebody who knows how scary DM is.

Diane

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:42 PM

33. Consider an insulin pump. My brother-in-law got one a while back and it's great.

 

He can dial it up or down depending on his activities and expected meal composition. No more needles. I have to inject myself daily for osteoporosis, but there's no alternative. They've come a long way in handling diabetes.

As for the insurance, I agree. My three daughters will all be on post-18 insurance coverage by the end of April. Without the "up to 26" clause, they'd be royally screwed. Your daughter will also be protected from the pre-existing condition problem after age 26, assuming Obama's ACA stays in place. I can't fathom how people can consider it a bad thing.

Give your sweet baby a hug for me. She's not alone.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:56 PM

34. So sorry to hear about this......

My son almost died of JD three days before Christmas after his third birthday. He is a wonderful son, now 34 years old. It did effect him but be assured your daughter can live with this and do almost anything anyone else can do. I know what it is like to pay out of pocket to meet his diabetic needs (and as a single parent of three children with no child support there were some very hard choices), although he now has insurance from his employer. Obamacare will make a difference, and although Obamacare is just a start, it is light years ahead of what was before. I wish you and your family well.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 06:58 PM

35. I will keep you & your family in prayers

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 07:26 PM

36. Childhood diabetes Type 1

In case you have other children - and for your daughter's sake - you should understand that there is a close connection between Diabetes (both types) and Vitamin D3 deficiency ... in fact - there is a connection between all autoimmune conditions and VD3 deficiency. Also - since deficiency has been linked to every chronic ailment that we struggle with - for your daughter's sake you want to get her blood serum levels up. One excellent place to do some research (they have links to all studies ever done when VD3 was a factor of the study):

http://www.vitamindcouncil.org/health-conditions/

Also - an outstanding video with the late, great Dr. Frank Garland on the connection between Diabetes type I and VD3 deficiency - known as The Finland Study - outstanding video on the topic:

Vitamin D and Diabetes-Can We Prevent it?




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Response to Not a Fan (Reply #36)

Tue Oct 9, 2012, 11:51 PM

48. I have heard of various ways that type 1s were able to get off insulin

so there is that
if you are interested in pursuing research.
I am not familiar with the above info
I have heard alot about our processed form of milk drank in US
http://forecast.diabetes.org/magazine/discovery/cows-milk-formula-and-type-1-diabetes
again only have heard this often
so do not know that much
very different factors from type 2 it seems

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Response to lunasun (Reply #48)

Wed Oct 10, 2012, 03:21 AM

52. reversing Diabetes

You can reverse Diabetes type II. There is a lot of excellent information available on that. I recommend a series of article by Dr. Mark Hyman that ran at Huffington Post on the topic. He ran one article and then ran a comprehensive series of three connected articles covering this.

I've heard that Diabetes type I cannot be reversed though. But if anyone can prove that is wrong I will be ecstatic.

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Response to Not a Fan (Reply #52)

Wed Oct 10, 2012, 02:45 PM

66. claims on the "internets" only heard of it/ no experience, or research & not diabetic 1 or 2

a perfect example of reversing diabetes2 I have found is to offer people (that just dont get it) someone they watch on TV while getting diabetes, and tell them they reversed it
one example would be Drew Carey and there are others
then sometimes they will listen
otherwise they just think you are turnig them on to a quack or nut
just my experience
http://www.healthiertalk.com/drew-carey-reverses-type-2-diabetes-hard-way-2277

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 07:39 PM

37. Such bravery from your daughter

and you and your family. My best wishes to all of you. And, GOBAMA!!!!!! Yeah, we need him!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 08:05 PM

38. Please give your sweet daughter a big ol' hug from me.

And here's one for you, RedSpartan:

The news must have hit you like a ton of bricks.

Obamacare better not be going into the Republicans' greedy hands!!!

I wish you & your sweet 4-year-old the very best.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 08:32 PM

39. many blessings...

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 08:32 PM

40. Very sorry to hear this.

Hugs to you and your little girl. Each day science is getting closer and closer to a cure. Believe.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 08:44 PM

41. I've always felt denying health insurance based on a pre-existing condition is a form of

discrimination that has life or death consequences. My daughter was diagnosed with Type 1 diabetes at the age of 10 and I lived in fear that she would end up without coverage when she graduated from college. Thank goodness for the ACA which happened just in time for her to stay on our coverage when she finished school. She then got a job and now has her own coverage. She's now 24 and I'm very grateful that she's never had any serious complications from her disease. Diabetes...especially Type 1, is a very expensive disease. Supplies, insulin, tests and regular check ups cost a lot...even with "good" insurance. But, for those without coverage who can't afford to keep their disease under control, the costs are much higher as uncontrolled diabetes takes its toll on every part of the body.

I still remember seeing the movie "Sicko" when it was first released and thinking how totally different life would be if none of us ever had to worry about health 'insurance'. I'm still a huge proponent of single payer health care and I was sorely disappointed that so little ground was gained with the ACA...but...it was a step in the right direction and we cannot allow the republicans (and traitor democrats) to take away these gains!

I'll keep your family in my prayers. You have a tough road ahead with your daughter's diabetes...but it is manageable and hopefully one day soon there will be a cure!

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 09:41 PM

42. I know I don't have the right words...

You and your family are in my thoughts and prayers. I wish you, your daughter, and your family courage and peace.

I will leave it at that.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 10:16 PM

43. I'm so sorry about your daughter's diagnosis.

My cousin was diagnosed with type 1 when we were 12. We (him, his brother and myself) grew up learning how to help him manage it, and to be aware of his needs should there be an emergency. I still think of them both like my brothers rather than my cousins. I hope she can leave the hospital soon and your family can find the best stride you can.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 10:32 PM

44. So sorry to hear this

A friend of mine's daughter was diagnosed at age 7. I hope and pray they find a cure for this disease soon. (((HUGS to you and your daughter))).

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 10:59 PM

45. Mar. 14, 1988 I had to tell our 6 yr. old son how his life would change.

Many forget that before the economy went into the dumpster health care and insurance co. abuses were a major part of the Dems. campaign issues. Keeping him insured was a walk on a tightrope. Parents job changes COBRA Ins. Going to out of state college cut benefits in half. High risk pool insurance in 2 different states. Had to prove he was in college every year after he turned 18. One slip and he would have been out. Most of that BS is gone now and I hope it lasts. We were told at his age he would adapt to diet and testing easier than older kids and our whole family ate what he did. Diabetes hasn't slowed him down. Good Luck to all of you. One more thing. Dipsticks on TV have been saying we are 3-5 years from a cure since 88.

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 11:20 PM

46. please look into the effects of wheat

I've begun researching autoimmune conditions and their causes and, in the course of doing so, came upon startling info about wheat and other grains. I don't want to get into it, but please do a bit of research in this area. I put myself on a grain-free diet and feel so much better. And, the belly weight is melting off!

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Response to Shanti Mama (Reply #46)

Wed Oct 10, 2012, 03:25 AM

53. Health consequences of Wheat

You might like to Read Dr. William Davis' award-winning heart health blog - The Heart Scan Blog. He is a huge proponent of eliminating all wheat from your diet and explains why. He has written a book about it called "Wheat Belly".

You can do a search at his site on the topic - and sign up for his free newsletter:

http://blog.trackyourplaque.com/

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Response to RedSpartan (Original post)

Tue Oct 9, 2012, 11:36 PM

47. So sorry to hear this. Hopefully, a closed-loop "artificial pancreas" will be out in a few years.

It won't be a cure for type-I diabetes but I've read that it will greatly ease the burden of management.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 12:40 AM

50. Same age as my daughter -

when she was diagnosed with ulcerative colitis. She now also has primary sclerosing cholangitis - a mouthful that means he body is attacking both her bile ducts and her colon. She will almost certainly require a liver transplant and is at risk for 5 cancers I can name off the top of my head (3 of them nearly impossible to diagnose early enough to treat).

But I guess I shouldn't worry, since we can always pack her off to the ER for free care. I'm sure they do liver transplants there.

I wish you well - it is terrifying having a child with a life threatening illness and to be uncertain not only about her life, but how to make sure there is money so she can be cared for well enough to live it.

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Response to Ms. Toad (Reply #50)

Wed Oct 10, 2012, 03:43 AM

54. a child's scary diagnosis is always horrible

But when they're so tiny, so young and vulnerable, it just gets right into your heart, literally, like a monster ready to attack.

I hope your daughter is doing well. Many, many, many hugs to you.

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Response to renate (Reply #54)

Wed Oct 10, 2012, 09:12 AM

59. Over the years we learned to live with the ulcerative colitis

but a colonoscopy at age 4 is an eye opener. And just when we had gotten settled into thinking it wasn't so bad, she started some extra-GI manifestations that looked like cellulitis (which can be a life threatening bacterial infection - when you take your child to the ER with a hot pink spot on her ankle, and they run you back immediately ahead of people clearly in significant distress in the waiting room you know something bad is up - think MRSA). That settled - we got to be complacent again for a while and then her first year in college PSC hit. We're nowhere near settled yet (4 years out) - I'm not sure you reach equilibrium with a disease like this one.

For now, her health has stabilized and lets her do perhaps 2/3 of what a healthy 22 year old would be able to do. The biggest current worry is that Romney will win and she'll have no means to pay her medical bills (approximately $30,000 so far this year - and this is a good year).

It is criminal to be forced to worry about getting access to health care on top of all of the emotional trauma of the illness itself.

Thanks!

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 01:45 AM

51. My heart goes out to you....

and to all the others who have posted with their medical difficulties. Medical care, unlimited and complete and without the threat of financial ruin, is an absolute necessity for a thriving nation; it has to be a priority for the federal government and constitutionally guaranteed, to insure that all people of the United States have the right to full medical care.

Someday... it must be so.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 05:38 AM

55. I am very sorry to hear about your child's condition.

 

nt

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 08:38 AM

56. It is important that Obama win...

...for this and a whole host of other reasons. I have a severely autistic non-verbal self-injurious daughter.

She's 17 now and while every day is a struggle; I realize (as I'm sure you do) how things could be worse. In fact a lot of people have it much worse. She's had special education since she was 3 years old.

I believe the answer to a lot of these ailments is in our diet (as other people above have indicated).

I recommend you watch the documentary 'Forks over Knives' (or visit the web site). I'm sure the answer isn't to do anything radical, but the solution to so many health ailments is what we put into our bodies and the benefits of enzymes that are destroyed during cooking could be part of the solution.

Again, I'm not recommending anything radical, but in the documentary they do a lot of food research and at least part of the solution must be in our diet.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 09:04 AM

57. Exactly the same situation as my granddaughter.

I think she was Dx'd at 4 also.

She is now 7 and has adapted to the demands of the condition (blood draws, dietary restrictions, etc.) quite well, as have her parents.

And thanks to Obamacare, she has health coverage.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 09:07 AM

58. February 6, 1986

That was the day of my daughter's diagnosis. Unfortunately our insurance is not subject to the Affordable Care Plan so she loses coverage Christmas day this year.

I wish you, your daughter and your family the very best of luck.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 09:12 AM

60. (((VIBES)))

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 10:44 AM

61. I've been there

My daughter was diagnosed at 5; she is now 15, wears an insulin pump, is an A student and on the high school track team. I remember the shock and pain when it first happened, but trust me, it gets better. It will become a part of your child's life, and medical advances continually alleviate the harmful effects of this disease.
You are also right on about this making politics very personal. When Bush's first action as President was to shut down stem cell research - which offers the only real chance of ever finding a cure - I put up a post here titled "Bush is trying to kill my daughter." A bit of hyperbole, but I took it personally.
There are a lot of on-line resources that can help you, and I'm sure there are support groups in your area that can help. Join ADA and JDRF (Juvenile Diabetes Research Foundation). Good luck, and write me back if I can help.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 10:56 AM

63. Most Promising Research You Should Know About and Follow

I have been a Type 1 diabetic for 38 years. My health is very good and I think my entire family is healthier because of it. We eat better than I'm sure we otherwise would have and we all get regular exercise. So, I know you will take good care of your daughter and when she's old enough she will learn from you and take wonderful care of herself.

I wanted you to know about the most promising research I've read about in all of these years. It's going on right now at Massachusetts General Hospital (Harvard's hospital)and it's being conducted by Denise Faustman, M.D. If you google her name you can read all about it. One website to go to is html://faustmanlab.org/clinicaltrial/clinicalt.html. Basically, she's found that a generic sort of drug that is harmless (a drug that's been in use for 80 years!) can kill off certain immune cells that are responsible for killing off the Beta cells in the pancreas that make insulin. She's right now in clinical trials trying to figure out the dosage that's needed. It may be years until this is ready but she is on her way. She's an amazing researcher. Last I read (that may have changed) her research was not being funded by the normal diabetes associations-- I think because the profit possibilities with her research are less because it is a generic drug. Please read her stuff. Good luck. Your daughter will do well. Since I was diagnosed I've had 2 girls - now in their 20's- and have become a civil rights lawyer and have been practicing law for more than 30 years.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 11:30 AM

64. Type 1 diabetic here....

....I know it's a tough thing to hear. And when you go home and start looking at the internet (like everyone does but shouldn't) it gets pretty scary. But understand this....people live very long and healthy lives with this disorder. Sure, it's scary at times. But if I was going to have a chronic illness, Diabetes would be the one.

There are support groups. There are online help sessions. There are giant research institutions. There are countless management options. There are PUMPS (less shots) and Continuous Glucose Monitors (fewer BG checks) that provide spotless control. There are stem cell research studies and islet cell transplants. And perhaps most helpful, there are MILLIONS of people who have it and to whom you can ask questions. I'm available. PM me any time. I'll answer whatever questions you might have. I'm no doctor, so I can't obviously answer the heady medical questions. But I've lived with this sucker for a while and I know quite a bit about that part. Living with it.

I feel for her. It's a bugger. But as she moves forward with it, she'll own it.

Good luck.

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Response to RedSpartan (Original post)

Wed Oct 10, 2012, 12:00 PM

65. my youngest

was diagnosed type 1 at the same age (4). Today she is a freshman in college in a pharm D program. In all of it she has been able to do anything and everything she wants to do. She played in HS band, member of NHS, has a BB in TKD and so forth. Since age 7 she has been able to look at a plate of food and tell you how many grams of carbohydrates are sitting on it. The main thing for you is to stay informed, keep track of everything and not get overwhelmed about things. Stay on top of this.

You will be (if you haven't already) be assigned a pediatric endo. Over the years, we have been to several endo's and at one of the facilities they did (at the time) share the place with pediatric cancer (out) patients. This puts type 1 in its proper perspective. Type 1 sucks, no doubt about it but there are much worse things and kids today are wearing pumps at a very early age.

Down the road a bit for you but I highly recommend summer diabetes camp. Mine went first time at age 8, (this is a sleep-a-way camp) and returned year after year. Last summer she was a Jr. counselor, this year a Sr. counselor.

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