Type 1 diabetes?

[psnave]

That's awesome! Sounds like her family worked very hard to make others aware. Very cool. She is very lucky.

Originally Posted by Susan G.

Yes, it definitely is a blessing. The diagnosis completely changed my cousin's and her parents' lives.

psnave, I don't know about the expense. I do know that U of Chicago researchers are actively building a database and I presume would be extremely interested in anyone who might be in the category. Adults in diagnosed in this time frame also should be tested.

Illinois' Lilly's Law (named for my cousin!) came out of this finding.

The bill establishes a registry of Illinois children diagnosed with neonatal diabetes before the age of 12 months, to be used by clinicians and diabetes researchers. Physicians will now be required to report any such cases to the Illinois Department of Public Health and, if the family agrees, will also report results of lab tests that measure blood sugar control in the diabetic children.

Here's a video about a conference of successfully treated patients.
http://www.youtube.com/watch?v=kBl3wVyFMPA

[videofit]

A close relative has type 1 diabetes which appeared out of nowhere after her first pregnancy. She is strict with her diet, isn't overweight and doesn't exercise -- says she doesn't have to because work and family obligations keep her on the go. She always carries hard candy (as well as her syringes) with her in case of emergency (she fainted once in the street). I'm not sure but I think she said she has a high protein snack before bedtime or she wakes up in the middle of the night to eat it. She is also hypothyroid and a former smoker.

She does cheat occasionally without it affecting her blood sugar: If you eat a sweet, have it after a high fat or high protein meal. She said the first bite tastes better than any thereafter so you don't need to eat any more than that! I need to take her advice when it comes to sweets.

[killoffsonny]

I'm prediabetic. I keep my numbers pretty good by mostly diet. I suggest Dr. Richard Bernstein's Diabetes Solution as a great book.

[Rosebud]

I have been diagnosed as a Type 1 just a few years ago... doctor started me on pills, but just this past month has put me on insulin to help regulate my numbers.. they have been all over the board... I know what you mean about being afraid to go low - it really is hard on the body and very scary... I have been going low more often now due to the insulin... the doctor keeps changing how much I need to take.... diet is a definite - no white bread for me... boy does that cause high numbers for me.... I exercise in the morning and then again sometimes at night.... it is frustrating and hard, but you have to do what you have to do... I have gained five pounds since on insulin and I haven't changed my eating habits at all... drives me crazy! But not eating is not good either.... you are not alone with your frustrations... it actually is quite depressing...and feel alone, but you aren't....

[JENILU]

Thankyou all so much for your comments.

I guess things have really changed. I thought if you were diagnosed as a type one, they automatically put you on insulin. I thought it was type 2 if you could still produce insulin and go on pills? I would love it if they found that I could get off insulin!!
I hate that you are going through that as well- and yes, it can get depressing. Its encouraging to know there is someone else here that feels that way.

[Susan H]

Here is a thread that has info about how some manage their diabetes.
Any VF'ers with Type I or II diabetes?

Best wishes in getting your diabetes under control!

[JENILU]

Thankyou- and everyone else so much!!

[psnave]

I can't speak for Rosebud, but some adult onset Type 1's do slowly progress towards insulin dependence. This is sometimes referred to as LADA - Latent Autoimmune Diabetes of Adults. Type 1 diagnosed in childhood usually strikes extremely fast and the child is often diagnosed in DKA. They have already lost all or most of their beta cells and require insulin immediately upon diagnosis.

I think as time goes on more and more variants will be discovered.

Many LADA's are initially misclassified as Type 2's, because they are adults (remember most T1 used to be diagnosed as kids) and because their onset is slow. Not all docs recognize the LADA presentation. Thankfully, antibody testing and C Peptide tests can really help with this. That's why if your therapy isn't working...more testing might explain why.

It's crazy isn't it...so many different nuances and all being labeled "Diabetes". No wonder everyone is confused!

I should add I'm not a medical professional, just a mom who is passionate about this disease.

Originally Posted by JENILU

Thankyou all so much for your comments.

I guess things have really changed. I thought if you were diagnosed as a type one, they automatically put you on insulin. I thought it was type 2 if you could still produce insulin and go on pills? I would love it if they found that I could get off insulin!!
I hate that you are going through that as well- and yes, it can get depressing. Its encouraging to know there is someone else here that feels that way.

[JENILU]

Originally Posted by psnave

Type 1 diagnosed in childhood usually strikes extremely fast and the child is often diagnosed in DKA. They have already lost all or most of their beta cells and require insulin immediately upon diagnosis.

.

Thankyou. That really helps in understanding. I was that quick diagnosis kind. I was rushed to the hospital in severe keto-acidosis and was diagnosed with a growth on my thyroid at the same time. Both happened about 6 months after my father died and right at puberty.

[Terry]

I haven't had the time to read this whole thread so this might have been mentioned already, but here goes:

The type of insulin therapy you are on matters. My son was on NPH and Regular and had horrible control. He was switched to NPH and Humalog which improved things, but not that much. Then he went on Lantus and Humalog. That was a miracle. We have since learned that Lantus + Humalog Injection or Humalog Only Pump work equally well, and some people switch back and forth since one way is good on vacation, the other is best at home.

Also: A researcher at my work (Univ. of Texas Southwestern Medical Center) was just awarded a kind of grant that is a big chunk of money for a high risk project that lasts only two weeks. He has shown (in mice) that Type 1 Diabetes can be controlled by supressing Glucagon rather than by injecting Insulin. I heard through the grapevine that he is getting high up on the ladder for receiving a Nobel Prize. The two weeks will be Clinical Trials and he will need voluteers. I've been looking for the volunteer information but haven't seen it yet just in case my son wants to volunteer and if I qualify as a Control subject so that I can volunteer myself. I don't know if the grant money will have money to pay for travel to Texas, but from what I read in the campus paper the volunteers will be rooming in a hospital room for four days. Check the www.utsouthwestern.edu if you are interested.