Replies to This Discussion

Permalink Reply by Shana on November 16, 2011 at 11:37am

Thanks for the link!! I will indeed look it over.

Permalink Reply by Shana on November 16, 2011 at 11:32am

Jag1, that's exactly what I'm seeking to do...prevent the development of full-blown T1 diabetes by intervention. Or actually, trying to get information about. That's why I posted originally, to see if anyone else was experiencing this and what they were doing to continue it. I know I didn't use those exact words but people JUMPED to the wrong conclusion (denying insulin) that this has totally gotten off track because I've had to defend myself and explain that some cases are different.

A study would be great. I would think that my endo at the Barbara Davis Center would clue me in to this if something was available. We go back in 2 weeks so maybe they will have something to offer up that they didn't last time we were there (3 mos ago). I think they thought it was a fluke that she was off insulin and that it wouldn't last. Who knows. I will definitely press this issue with them.

And ONCE AGAIN, my goal is not to DELAY insulin. My goal is to keep my child as healthy as possible for as long as possible. And if I can keep her BG levels in a normal range with a modified HEALTHY diet then why wouldn't I do that while I can? I refuse to feed her huge amounts of carbs so that she can handle the insulin. That's insanity.

Permalink Reply by Jag1 on November 16, 2011 at 2:54pm

You didn't answer what you daughter's worst A1c was, or why she was diagnosed as T1 (A1c, fasting BG, glucose tolerance test, ??). Since your daughter was diagnosed several months ago it seems unlikely she would be accepted into any of the trials that are being run, but it also seems like it is worth investigating, especially if she is really insulin-free at this point. She will only be early-onset once. And yes it is true that there are no guarantees that if she were accepted into a trial that it would be at all helpful, but again, you have only once chance to consider it. After all you may find a trial that youthink may have a chance of helping.

If you don't find a trial that accepts her, or if you decide you don't like the terms of any trial you are able to find, then you could do as bsc recommends and essentially do your own trial by restricting her diet in various ways. But it's one thing to decide to do a trial on yourself (I do it all the time when I try a new insulin, or meal type, or injection routine, etc.). It is quite another to do it on your child. If you do attempt to do this, then let me state the obvious that you have to be very careful that your trial doesn't include restricting insulin when she comes to the point of needing it. I don't mean to suggest that you would do this - because it's clear from your posts that you are trying to do the best for your daughter and I commend you in your efforts. But it is the possibility that this could happen that is I think why your post got an uneven reception here.

Also, to put this in historical perspective, please be aware that before the discovery of insulin, that many childhood-onset T1's were kept alive (for as much as a few years) by putting them on very restrictive carbohydrate-free diets. At that time there was no alternative, and getting a few years of life was better than the alternative. But note that this did not prevent their BGs from eventually going sky high, and it essentially put these children on starvation diets (the pictures of these kids are horrifying, reminiscent of concentration camps). So you clearly should not expect diet restriction to be a long-term solution to your daughter's T1 diabetes.

Permalink Reply by Shana on November 16, 2011 at 3:28pm

I thought I did answer that...7.7 A1c. Blood tests were done and she tested positive for antibodies. And no, I don't know exactly which ones. All I heard was "we are 100% sure she has Type 1 Diabetes".

This will be my last response to people warning me to not withhold insulin from my child. The absurdity of that astounds me and the fact that people jump to that conclusion is insulting.

Permalink Reply by MyBustedPancreas on November 16, 2011 at 3:42pm

I understand your frustration, but keep in mind that some of us have come across a few wackos on here and other sites, parents who INSIST that they have cured their child's diabetes through some crazy diet or cinnamon or herbal remedy. They are rare, but when they do venture onto these sites, they can be very insulting. Some insist that all of us T1s can "get off insulin" so long as we eat cinnamon or whatever the latest fad is. And, sadly, there have been children who have died because parents withheld insulin and instead thought they could heal their child naturally or through god or whatever.

That doesn't seem to be AT ALL what you're getting at, but please just understand where some people might be coming from. Living with T1 is difficult, and it's made more difficult by all the misinformation out there. I didn't get that impression from you at all, and your approach seems completely reasonable from what you've described.

Permalink Reply by Jag1 on November 16, 2011 at 4:31pm

DId you read my whole answer, or did you just get mad and stop reading? This is not a private email to you - it is a public forum which other people may read in the future, and my comment was made for anyone reading this in the future. I made a point of saying that I believed you *personally* were not going to do that.

Permalink Reply by Sophia'smommyLori on November 16, 2011 at 5:43pm

If she went to the Barbara Davis Center upon diagnosis then they tested her for the following autoantibodies r/t type 1 diabetes: GAD65, mIAA, ICA512, and ICA as well as the autoantibodies for celiac, addisons, and thyroid. This would be the standard work-up for all their patients and I bet they gave you a copy of those labs in the mountain of paper they gave you. My dtr was diagnosed there Sept '10 and did not go into DKA either. We picked up quickly her symptoms and although her A1C was 11.7 and bg to high to read, she was trace ketones and no ketones after 1 dose of humalog. Sent us home on a sliding scale (it was a Friday) and told us to come back Monday morning. Someone from the trial net study should have seen you the day you were diagnosed to test the rest of your family (upon consent you wanted to be part of the study) since that is where the study originates from. My 39 yr old husband, positive for GAD65, ICA512, and ICA and my 4 yr old son, positive for GAD both participate and so far, both have normal OGTT testing and A1C's.

That being said, I find them to be slightly unorganized (both the clinic and the study group) and I have found I learn nothing from them seeing them for 15 min every 3 months and they circle some numbers on my dtrs pump logs and say "you're doing great! see you in 3 months". I use them for prescriptions. I can't imagine having to drive all the way from up north for that! Hopefully you get in touch with Trial Net via phone BEFORE you come back in two weeks and set up an appointment to sit down with them and discuss your daughters options!!!!

I think it's great what you are doing. Keep up the good work. It's our job as their moms to research, learn, try alternatives etc...in a safe environment and it sounds like that is just what you are doing :) Good luck!

Permalink Reply by Shawnmarie on November 16, 2011 at 9:28am

I'm an adult who was diagnosed about six weeks ago and enjoying my honeymoon. I don't need basal insulin right now and only very small amounts of bolus. I eat about 130 - 150 carbs a day. If I restricted it more, I might need no bolus, but I find I feel better with at least that many carbs and I feel like the insulin boost is also helping keep me on an even keel. I didn't know kids could have a honeymoon like your daughter is having, but sounds like it's possible. It also sounds like you're a responsible parent who's realy trying to do what's best for your daughter.

Permalink Reply by Aimee on November 16, 2011 at 11:22am

Hi Shana,

That is great that you were able to catch it so early. I have heard of other kids that were able to get off insulin for a while when they were in their honeymoon period. It sounds like you have learned a lot and also understand that this will not last forever.

My daughter was diagnosed at 3 years old. We caught it very early due to a rash which was caused by frequent urination (she was not completely potty trained yet). The doctors were not looking for diabetes, but found it when they checked for a UTI. There were no keytones present with my daughter either. She still required small amounts of insulin during her honeymoon period, but all kids are different. Who knows, if I had changed her diet maybe she would not have needed insulin for a while either. I suspect that her honeymoon period lasted about 3-4 months after diagnosis; she had the flu at this stage and her blood sugars seemed to raise a bit from then on.

Everyone is different, so all you can do is continue testing and be prepared to react to the blood sugar numbers; just like you are already doing.

My daughters diet is not too restrictive, but there are certain foods that seem to raise her blood sugars no matter what we do (such as cereal). I have pretty much taken those foods completely out of her diet and I am slowly lowering our carbs in other ways too. A lower carb diet definitely makes it easier to control blood sugars. You are doing your daughter a great service by teaching her this now.

Keep up the good work, Mom!

Permalink Reply by Shana on November 16, 2011 at 11:38am

Thank you Aimee!!

Permalink Reply by Brian (bsc) on November 16, 2011 at 12:03pm

Ok, let me just pipe in as a T2 nutjob. Given all the data I have seen, I have no problem believing your daughter is actually a T1 having a honeymoon and is able to get along quite well without insulin for now. There I said it.

So what can you do to prolong the honeymoon? Well, I think everyone would tell you that it is best to maintain tight blood sugar control. And a diet can help. A low glycemic diet will help initially, then you could move towards a low carb diet. I think those will limit blood sugar surges. That is the only treatment that I am aware of that you can have any confidence working. You can try trials. You can try diabetestrialnet, or you can right to the master list at ClinicalTrials.gov. And perhaps you will be lucky and get some benefit. I think it is always good to have hope.

But understand that taking part in a clinical trial may also result in you not getting the "best" outcome. You may be told to eat a controlled diet (not low GI/low carb), or be told to delay using insulin. That may not be good. A clinical trial is about doing an experiment, not about getting the best outcomes for participants. And you always run the chance of being put in the "control" arm which means you won't even get the supposedly good treatment.

And although you feel that you can't use insulin, one possibility is to use insulin dilution (look it up in the CWD forums) as a way of getting proper controlled dosing.

T2 nutjob, signing out.

Permalink Reply by Trudy on November 16, 2011 at 2:03pm

Thanks, bsc. From this time forward, I will call myself T1 nutjob. No one will disagree with me.

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