Letters to the Editor

January 1998

Jan 1, 1998

Psychological Support for Dieters

What a good article on the front page of your November issue, "Why The Pounds Won't Budge." Evelyn Narad is an inspiration of tenacity and ingenuity.

There were two things I thought would enhance the article regarding the details and difficulties of planning a way to lose weight and keeping it off.

All the tips for weight loss in the article were good, but most people think they have to follow every tip or they are failing. Each person really needs to create their own food plan, based on what they like and don't like, their tolerance for deprivation, foods they can do without and those they need to have, etc. As time passes the plan needs to be redesigned, reformulated and retested so that what doesn't seem to be working can be eliminated. Doing this alone is really difficult. It helps to have another person around to help reevaluate and modify the original plan.

A professional can help. Although the doctor in the article said she thinks a "more hands on approach" between health professionals and patients is a good idea. It is unlikely that many doctors will be available for the amount of time, energy and struggle it takes to relearn to eat well. A diabetes educator or a psychotherapist who understands diabetes and food/weight issues is a good bet. Ask your doctor for a referral or find one yourself.

Psychological issues are often involved if a person is having difficulty losing weight. Sometimes a mild to severe eating disorder is occurring. Usually, the eating is masking anger, disappointment, fear or other feelings related to having a chronic illness or to some other life stressor.

Understanding how to lose weight sometimes involves unexpected things. A professional can really help with creating a working food plan and a removing psychological impediments to a successful relationship with food management.

Kay Goldstein, MFCC
Marriage, Family and Child Counselor
San Francisco


The MMR-Diabetes Connection?

I am a mother of a six-year-old, type 1 diabetic. My daughter was diagnosed at the age of 16 months, with no family history of diabetes. I have always believed that the mumps, measles, rubella (MMR) vaccination my daughter received at 12 months caused her diabetes.

My 15-month-old son is currently due for his MMR. After many sleepless nights worrying about him getting this vaccination, I decided to "surf the net" to see if I could find any information linking type 1 diabetes to the MMR vaccination. Much to my surprise, I found other parents who have wondered the same thing. Upon further research, I found that a researcher in Wisconsin is currently conducting a study on this very topic.

I contacted Dr. Kenneth McCormick, the head of this research team, and he advised me that his study will take about one year to complete. He also told me that there is a team in the Netherlands conducting the very same study. I have also learned (by talking to various local physicians and reading diabetes articles) that it is believed that rubella, measles and mumps vaccinations can all contribute to the onset of type 1 diabetes. Because of this, I must ask the question - have we created a 'diabetes cocktail' with the MMR vaccination? Please note that I am not stating that all children who receive the MMR get diabetes, but it may be that a side effect of the MMR - for a small percentage of children - is type 1 diabetes.

Over the next few months, I will be trying to build a database of other parents who believe their children's diabetes was triggered by the MMR vaccination. I would be interested in hearing anyone's thoughts on this. If you have any information on this, please contact me at DD678@aol.com.

Also, Dr. McCormick at the Medical College of Wisconsin is currently looking for children to participate in his study.

Jill A. D'Silva
President, The Devan N. D'Silva Foundation


Humans Aren't the Only One's Who Need Iletin I

October's article about Lilly discontinuing Iletin I scares me. A few years ago Novo Nordisk quit making what I was using and I had to switch to Lilly. I've had diabetes for 22 years with very few problems. I'm 72 and don't like changes.

My cat also has diabetes and he gets Iletin I twice a day. What's going to happen to the animals that need it?

Lillian Kubczak
Green Bay, Wis.


Tired of Being A Captive Market

I'd like to applaud the extensive coverage you've done on the withdrawal of Iletin I insulin by Lilly. I suffered for seven years with hypoglycemia unawareness and frequent seizures while taking human insulin.

It was like receiving a new life just over a year ago when someone (not a doctor) suggested I try Iletin I. Within a matter of weeks, I had a full set of hypo-symptoms back, along with restored coherence to treat a low when I felt it coming on. I have gone from bimonthly visits with the paramedics while on human, to only one in the past 14 months.

Sometimes it's very discouraging to me what a captive market we are to the industry that thrives off of our chronic condition. Over the summer I visited the United Kingdom to attend a general meeting on the Insulin Dependent Diabetes Trust. I was delighted with the responsiveness that CP Pharmaceuticals has exhibited towards insulin consumers by providing a full line of animal insulins in the United Kingdom. I brought home a healthy supply of CP's "wonderful" beef R pen cartridges, but they're gone now and I often find myself wishing we had CP animal insulins available in the United States.

If there is anything I can do to help keep animal insulins available, please let me know. Thank you for taking the risk to cover this controversial topic.

Robin A. Harrison
Durham, N.C.

Editors' Note: One thing you can do is report any adverse effects of human insulin to the Med Watch program (800) FDA-1088. Also, CP pharmaceuticals can be reached at: Ash Road North, Wrexham Industrial Estate, Wrexham, United Kingdom LL13 9UF or call 01978-666-172.


Celiacs Beware of Wheat Flour on Conveyor Belts

As a 74-year-old insulin dependent diabetic (diagnosed in 1980) and celiac (diagnosed in 1995) I read with interest the Q&A from Ivy Randel of Pinehurst, Idaho ("Allergy Apprehension," November, 1997). The advice given by Beth Beller is very good, but there is an additional pitfall that was not covered.

Many products are labeled wheat and gluten free, but the manufacturers fail to note that wheat flour is used on conveyor belts and other containers to keep food from sticking together.

The advice to contact Ener-G Foods is also good. Ener-G makes a wide range of wheat and gluten free products. They're great, but expensive. Like Ivy Randel, I also want a sandwich or pancakes every once in a while. But when I go to my local supermarket and find Ener-G's bread (with 14 to 21 carbo per slice) at $4.19/loaf next to nationally distributed bread at $.99/loaf, I'm no longer interested.

There are several suppliers of mixes that are wheat and gluten free which are much better priced. Some suppliers offer mixes for rolls, bread, pancakes and pizza. They also customize the mix for hand mixing or bread machines.

I hope this will help Ivy Randel and other diabetic celiacs.

Glen H. Rearick
Wheeling, W. Va.

Editors' Note: One resource to contact is the newsletter, Gluten-Free Living. Their address is PO Box 105D, Hastings-on-Hudson, NY, 10706. Also, reader, Marjorie King recommends her recipe for gluten and wheat free hot cakes: 1 cup buttermilk or milk, 1 egg, 1 cup tapioca flour and rice flour mixed, 1/2 teaspoon baking powder, 1/2 teaspoon baking soda and a dash of salt.


Child Left Hanging in HMO Web

I don't know where to turn anymore. My seven-year-old son has been a type 1 diabetic since the age of two. He has been hospitalized five times and has been to the emergency room six times. His regimen is typical for a person with type 1 - three shots and five blood tests a day.

I tried to improve his health care coverage with our HMO for over four years. For two-and-a-half years following his diagnosis, his primary physician would not refer him to a specialist. After I sent a 22-page appeal letter, I was told that I had adequate medical care for my son's needs.

We finally got a new insurance company and now have a specialist, but again have problems. Our new HMO (Cigna Insurance Company) has refused to provide my son with his test strips and lancets. How can you check blood without test strips for the machine? This is a financial and a mental burden.

The irony is that if my son had not had any insurance these last few years, he would have had full coverage through public assistance programs. What happened to a system that provides better health care through government hand-outs than private insurance? Can you offer me any help with this problem?

Diane Van Leersum
Redlands, Calif.

Editors' Note: Testing is the cornerstone of diabetes therapy. Why do members of our society deny theses supplies to little children?

Fortunately, you can fight to get strips and other supplies covered. Here are the basic steps. First of all, the two most important things to do when going through an HMO's appeals process are: getting your doctor on your side and creating a substantial paper trail documenting your efforts. This paper trail should consist primarily of letters discussing the benefits (to your son in terms of his health and to your HMO in terms of cost savings) of providing adequate test strips. Any literature published in magazines, newspapers, etc. that supports these facts should be forwarded to your HMO as well.

If your doctor is on your side and is willing to write letters to the HMO describing why a particular treatment or product is necessary, your chances of getting what you need will improve drastically. If your doctor is unwilling to do this, you may want to shop around for a doctor within your HMO that is more understanding of your needs

Whether or not your doctor agrees to work with you, you must follow the HMO's appeals-process regulations to the letter, keep copies of all correspondence with the HMO, take notes on all phone conversations and record names and dates when you speak to various company representatives. This is of utmost importance because if you are later required to take legal action to get what your son needs and deserves, the court will only review information in your HMO appellate file. (See The ABCs of HMOs in the June 1997 Diabetes Health for more information.)


Thankful For Caring Treatment

I wanted to respond to a recent letter by Mrs. C. Sylvester ("Concerned Grandmother," August, 1997) who was considering taking her grandson to the Joslin affiliate in Indianapolis. I just wanted to share our experience with this center.

My four-year-old son Cody was diagnosed when he was 13 months old. He was under the care of a doctor at a children's hospital here in Columbus, Ohio. When Cody was two he was not very healthy and his vision was becoming blurry. The last A1c the doctor performed came back at 12%. Obviously, some major changes needed to be done to Cody's insulin and diet regimens. When I asked what changes the doctor wanted to make, he said none! I figured at that rate, complications would arise all too soon. This is when my crusade began.

My husband and I then stumbled upon the Indianapolis Joslin affiliate. What a relief to meet these truly caring and competent people! Sometimes I find myself sounding like an evangelist when talking to other parents about James Meacham, MD, and his staff.

Meacham changed Cody's insulin, diet, syringes, lancing devices and lancets. Cody's A1c dropped to 7% and still remain in the 7 to 8% range.

I also have to give huge credit to Connie Shella, RN, CDE, who has always soothed me in times of my own anguish when dealing with this disease. Not only is she superior in her work, but she's also the mom of two children with diabetes - so she knows firsthand the rigors of living with diabetes.

Similarly, the dietitian, Gayle Kegg, continues to help me revise Cody's diet which is not easy during the toddler and pre-school years. She has shared many tricks of the trade with me.

I want to urge Mrs. Sylvester to at least call and talk to the Joslin group. They have helped save my sanity over the past two years, and most important, they have truly saved my son's life.

Staci Perkins


An Invite to Unite Site

I would like to invite your readers to visit the Diabetics Unite Homepage. I hope your readers can link to my site, be encouraged to sign the petition on the links page and learn about the Gray Ribbon Campaign to find a cure for diabetes.

I am trying to increase awareness of diabetes as the serious disease it is. Fighting for a cure is a double-edged sword, however. I think the only reason that the public does not consider diabetes very serious is that there is an attempt within the diabetic community to prove that diabetics can live normal lives. It's very difficult to stress the negative side of diabetes for fear of hurting others, affecting their attitude or making them depressed. Yet if we don't, a cure may never be found.

I also want to stress that while I have had times that were difficult, having diabetes has not kept me from having wonderful times and much happiness. But, I will only be truly happy when a cure is finally announced. We must all lead the fight for a cure.

Come visit me at www.geocities.com/HotSprings/Spa/4750 or write me at: dfgaston@geocities.com

Deanna the Diabetic


Diabetes IS Serious

I am a 56-year-old, overweight type 2 diabetic. Unfortunately, since I was diagnosed in 1983, I have been more out of control than in control. For years, I was unable to confront this disease and thought of it merely as a minor inconvenience. However, last year, I was faced with the possibility of losing my left foot. Total dedication from my podiatrist and solid medical insurance assisted me in staying at home for three months on liquid antibiotics until the wound healed.

My prayers go out to all diabetics who wish for a cure. Don't take this disease lightly because it has the power to reduce the quality of your life (or worse) if you let it take over your body. Treat this disease with respect and your life will be richer.

Jan Gross Los Angeles

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