Back to Parents' Voices Sonia Chritton

A Try At Prevention

Even though my sister has type 1 diabetes, I almost missed the symptoms in my son Matthew who was diagnosed at 20 months. He is seven now and has never had a siezure or hospitalization due to diabetes. His A1Cs are great and so are his grades and athletics. He is under the most phenomenal care possible at the Barbara Davis Center, and much of what we know has come from a book written by his physician, Dr. Peter Chase. You can check out the book at their web site ( It's a great site to bookmark, and I would encourage ordering the book. It's only $10 U.S. Their site is particularly useful if you are interested in prevention trials and research. Even though Matthew is doing extremely well, diabetes is something I wanted to avoid for my other two kids.

My oldest son's allele combination makes him at low risk. Unfortunately, my daughter has tested at the highest risk (DR3/DR4) allele combination -- the same as Matthew. This places her in an over 50% category, just as though she were Matthew's identical twin. The center retrieved Caroline's cord blood from the hospital when she was born. I would recommend cord blood banking for any child who has a first degree relative with diabetes. The center tested, and we knew within weeks that she was at high risk. She was kept off all cow's milk for five months even though cow's milk seems now not to be a cause, and I nursed her to help her immunity. We also gave her a BCG (bacillus Calmette-Guerrin) vaccination, the vaccination against tuberculosis to "boost" her immune system when she was about nine months old. We based our decision upon the Israeli studies I found at the UCHSC medical library. She tests once a year to see if any of the autoantibody markers are present, and so far what we have done has worked. Or perhaps we are in the "lucky" group so far.

There are several articles on BCG. If you are interested, I would recommend doing a search using the key words, BCG and diabetes. The two most recent and interesting are by a group in Israel and a group in Canada. The researchers at the Barbara Davis Center have been able to show that if you wait until after a child is autoantibody positive, it does no good and actually may accelerate the process. The group in Israel is showing results that indicate that if you are vaccinated as Caroline was, that a booster would be indicated. We have not yet decided if a "booster" of BCG is a good idea. But I am trying to get additional advice. This field is so new but very important.

My Thought for the Day

We think of the discovery of the cure for polio as occuring in 1954 when Dr. Salk started the process of preventing the next generation from suffering. If researchers or JDF or whoever truly want to be known as the ones involved in the cure for diabetes, their best effort may be in getting a vaccination program going by the year 2000. This might be with BCG or a B-peptide. I don't know. I do know that it is too late to modify my son's immune system, but the process of "tweaking" my daughter's has already started, and so far, it is working.

I still want a "cure" for Matthew. I am excited about the new longer acting insuling and Minimed's continuous blood glucose sensor and the link it will have with their pump some day. I am thankful for the efforts to create a viable bioartificial pancreas and hopeful that the pace of improvement will quicken with increased funding. I pray that the scientists and those who help fund them will remember the big picture: a life without complications in which our children will outlive their non-diabetic parents, and a life where our children will know that their children will never get diabetes at all.

Update for 2007

Although it was my middle child that was diagnosed, it was my oldest that got the news that he would be diagnosed "in a few weeks" when he was 11 years old. We flew to visit an expert from one of the best Universities, confirmed the results, and after that horrible news, we had only one choice (over the counter). We put him on high dose DHA (fish oil). His autoantibodies reversed. When he stopped a few years later, they came back....the pattern repeats, he went back on and they reversed again. The important thing is that he is now 20 and a sophomore in college, and the MD PhD that told him he had "a couple of weeks before going on insulin" was wrong. That was when he waas 11 years old. The DHA worked, but only because we were in prevention trials. For someone who waits until diagnosis, it likely will, at best, only create a delay. This is a reason to participate in prevention trials, if offered in your community.

Sonia receives e-mail at sonia AT

Though at high risk for developing Type 1 diabetes, Caroline remains disease free.

BCG Update: 17 June 1998

The latest information is showing that giving BCG after you test positive for GAD 65 antibodies can actually accelerate the process toward diabetes, and so it is critical that if a vaccination is given, it should only be tried early (within the first few months of life) and only in children with the highest risk allele combination until we know more. The "booster" idea still seems promising but only if the child continues to test autoantibody negative. BCG is an adjuvant that stimulates TH2 cytokines and creates more IL4 which is protective. However, there may be a preliminary accelerated TH1 cytokine response which would be a problem in a child who already is testing positive for the autoantibodies. Based on this new information, our prevention strategy with our daughter made sense and still does, and it is working 100% so far, but each child's situation needs to be evaluated separately.

BCG Update: 27 September 1998

We decided to give Caroline a booster last spring and did a PPD test to make sure it took. We felt comfortable doing this because she was still autoantibody negative. It is very clear that you do not want to vaccinate if your child has already tested positive. She appears to have a high level now of a protective cytokine, but it is not certain whether this was because of the vaccination and booster or perhaps we are just "lucky" so far. By now her odds of testing autoantibody positive are at least 50% and she is still negative, beating the odds. More will be learned from better assays and discussions that will take place at an international prevention forum next month. As we learn more, we will keep you updated.

Original posting: 15 Feb 98

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