When People Tell You About the "Latest Cure" For Type 1

Hi All,

I’m new here. A short bio:

Mom of a 7 year old girl, Elizabeth, dx’d Type 1 right after Memorial Day in full DKA. She was in intensive care at a top-notch children’s hospital for 3 days, 4 days in the hospital altogether.

We’re a family of 9. Yes, NINE. Hubby, Me, and seven offspring, ages 13 down to 7 weeks. And also a rather large and wonderful dog =o).

Elizabeth is doing great. Her 3month post-diagnosis A1C was 8.9, and we’ve tightened up her target range goals to 80-150. She does all her own testing (except for any needed middle of the night tests) and does most of her own injections (with parental dosing and oversight of course). She’s a trooper and as spunky as they come =o).

Anyway, I’ve been reading through here and even though I’m not the one with Type 1, I feel like a proxy, walking through things with Elizabeth, helping her to guard her heart, mind and body. I don’t have to experience the sticks and the needles, but hurt along with her when a bolus is a little on the large side or when the Lantus stings =o( . And of course there are the highs and the lows . . .

Folks we know have been really wonderful and supportive throughout the last several months. I subscribe to a mom’s digest for moms of many children, and of course, there are some there who think that they can help with the latest alternative whatever to “cure” diabetes.

Many of you have noted frustration with the ignorance of such sharing (I hear ya!), and I thought I’d post a response I sent to one who “shared” with me. The woman who emailed me is of the mindset that all pharmaceuticals are evil (not just bad, but evil), and that given the proper nutrition/herbs, the body will always heal itself. So you get the idea . . .

Here’s what I wrote to her:

Thanks for your prayers =o). We’ve been doing really well. Elizabeth is a trooper and as spunky as they come, doing most of her testing (not the middle of the night, if needed) and most of her injections (with parental dosing and oversight). We’re learning the ups and downs, the ins and outs of her condition. Flexibility is key . . . the only constants are testing and dosing and counting. The rest is an art of sorts, constantly tuning the food intake and insulin dosage to how her body is responding on any particular day. I called her blood glucose numbers into Vandy yesterday (I had a few questions for the diabetes team) and they said her numbers are “fabulous”. Yay! It’s hard work staying on top of it, and it’s good to know that it’s not in vain. Our Pastor’s wife was joking around with me a couple of months ago and said that some people take years to find what part of the Body of Christ they are - and that we know now that at least in part, we’re a PANCREAS! She’s too funny =o).

I appreciate the resource suggestions. Diet is an important part of managing Diabetes, and some Type 2’s can get along without being on meds. I have a good friend that is Type 2 who manages her Diabetes well with diet and exercise.

Type 1 Diabetes is a bit different, though, and is insulin dependent. No matter what/how much one eats (low carbs), a Type 1 diabetic will slowly and painfully starve to death without insulin, the hormone a fully-functioning pancreas produces. (The pancreas also produces enzymes - Type 1 diabetics’ pancreases cease insulin production.) Insulin “opens the door” of our cells so that the cells “know what to do” with the carbohydrates that are in the foods we eat (carbs go to glucose —> energy and growth). Click HERE for a simple video illustrating the process.

Carbs are in many of the foods we eat - veggies, fruits, grains, nuts, and yes, sugar =o). Carbs (glucose), fats, and proteins feed the brain and fuel the vital functions of the body (including organs, motion and heat), and are crucial to the growing body of a child. Extra glucose is stored in the body in fat stores. Children (and adults) who have Type 1 Diabetes that are treated only with diet and go without insulin slowly starve to death, dying eventually of diabetic ketoacidosis (DKA), where the body simply cannot carry on chemically as it tries to dump the glucose it is not capable of using but desperately needs. Life expectancy for those on such a diet is very short. Before DKA, the body “eats” all the fat stores and wastes away muscle to fuel itself, resulting in significant weight loss. Elizabeth was in full DKA and had lost 20% of her weight at her diagnosis and was in intensive care for 3 days. Without insulin Elizabeth would be dead today.

Here’s a 3 part video (25 min. TTL) with a bit of the history of diabetes and about the discovery and development of insulin: http://www.dlife.com/dLife/do/ShowContent/dlife_media/tv/video_story_of_insulin.html

I’ve looked at a lot of resources about Type 1, including what you sent. Thanks. Insulin is a necessity for life for Elizabeth (as it is for you and me) short of a cure or a healing. Diet is an important part of her treatment and we are paying close attention to that as well. The link to [link removed] you sent has only anecdotal info . . . no hard science - read proof - (which can be demonstrated if something really works - whether it be herbal or conventional medicine). I understand you were not recommending the site, just passing it along =o). I just wanted you to know that I did take a look at it. =o).

Gotta go. Thanks again! Hope this finds you all well!

So there's my 2 cents. Many of you have stated that education is so important. I agree.

Thanks for all your informative posts, and also for sharing your hearts here. You're helping this mom of a Type 1 to consider the broader aspects of what Elizabeth is going through beyond the physical.

- Lizzy's Mom

Well there Lizzy’s Mom, you must be Irish having the gift of the tongue :wink: That was the perfect example of tact the definition being, telling someone where they need to go and have them looking forward to the trip. All the best you and all of yours, and to the special Young Lady, Elizabeth. My granddaughter is 7 will be 8 next month.

Amen! You did that well!!!

This is one to save for future reference.


Yes it does.

Lizzy’s Mom-

Hi, I’m going to send this post on to my mom, I’m also a Lizzy and so she can better explain things to my dense family who believe that at age 27 one cannot simply be diagnosed with type 1… my aunt, a well meaning herbalist, says she can cure my diabetes without shots… Gotta love their thoughts…


Good job:) and love and good wishes to your little Lizzy…she is fortunate to have such a wise, kind and loving mom:) Keep posting and know everyone is here to support you and your little girl.

Yes again as an experiment of one I don’t remember stinging with levemir which you do get with lantus the more so cold out of the bottle. I switch in the unsubstantiated hope that switching insulin on occaisions helps insulin resistance.

Thanks, Dave =o). Scottish/English, actually, with a dash of bold thrown in for good measure. Congratulations on your Elizabeth turning 8 next month. Best wishes. Ours will be 8 near the end of the month . . . she’s counting the days!

Thanks, guys, I’ll look into it. She does really well on the Lantus . . . she’s pretty stable. Once in a while she winces a bit, though. It’s not cold when it goes in, just our stored pens are in the fridge. We inject room temp Lantus.

Thanks, all =o).

wow you sound really informative, you answered that woman perfectly and without anger or “talk down to.” Because you are educated you guys will really go far. I find that when people hear something “new” or the “latest.” i still listen but i remind them that until then this is what i have to do. And if it’s a really far fetched idea or if the comment comes from somebody who doesn’t know all the facts, i’ll try and educate them if i can. My dad was on this kick about some new article he sent me about a artificial implanted pancreas that does everything for you…(anybody know what i’m talking about?) But since i can’t find the article i had to explain to him that some how it wouldn’t be that “easy” that there had to be a catch when it comes to regulating the insulin. (no idea if he was talking about the pump lol)

Said with all the style and grace I would expect from a Tennessee Girl. Your Lizzie is receiving treatment from Vanderbilt Children's Hospital she must be receiving the best of care.

Call me cynical but my one phrase I've used for years is that there are no miracles and I truthfully believe that. In all of history of mankind there have been those who have invented vaccines that prevent a certain disease but I can't seem to recall any disease being cured in someone who has whatever disease... but that's me and how I think.

I wouldn’t even bother to answer such an email :). You were very patient with that lady :slight_smile:

I'm so impressed by your love and compassion, and not only to your daughter. The world needs more people like you. Thanks for sharing! I am inspired.

I believe there will be a cure. Nothing as simplistic as taking an herb or supplement...unfortunately. Our family member was dx'd at 8 also... too young, but at an age where they will adjust to the change in lifestyle... at least ours has; adheres to a very healthy diet even though now a teen, tests often and takes good care of herself. I am hopeful in ten years some meaningful advance in better insulins or the artificial pancreas will be available. Beta cell transplants will come later, I believe and that is a cure of sorts. If there was an herb that could cure Type 1 I would have found it, trust me. It is kind of you to educate this person and I hope you have the patience to continue to do so. Believe me, with these holistic types your words may fall on deaf ears. I'm glad your little one is spunky. It is a trait these kids will develop even if they are not that way to begin with. Our girl is one of the toughest, bravest persons I know. The personality traits that develop in perserveering with Type 1 from an early age, the responsibility, courage, toughness or spunk, constant observation and vigilance, good clean living habits will stand them in good stead the rest of their lives.

That was Great! All of the people with or who know someone with T2 that think it is the same amaze me and it is impossible to get them to understand there is a difference. I am now wokring in a unit with 7 others and my new sup told me they understand diabetes completely because her and 2 others in the unit have it. She said 1 of the women was home friday because when she woke up her BG was 191. I thought when my BG is 191 in the morning, I celebrate that it is neither ridiculously high or low. If I called in sick, I would never show up. Most people don't get the difference between T1 and T2.