The release of drugs to treat Type 1 Diabetes

Comment by Edwin on January 20, 2009 at 1:58am

Denise: By reading your letter in DiabetesHealth, we decided to get our 9 year old boy into the Tepizumab treatment. It was unfortunate that he was diagnosed rather late, for which the damaged to his pancreas -I believe- was large. In any case, we've got him there, we were not in the placebo group, no problem with hepatic enzymes, and now, 9 months from diagnosis and 6 of treatment (2 sets of infusions), we still use insulin. But: 1) We experience very few highs -every now and then he makes some mischief with snacks at school-, 2) his A1C is at 6.5%, and 3) BG control with insulin is very smooth. I've talked to other parents with T1 kids, and they tell me they struggle to keep the G below 200. We usually have between 50 to 150.
I'm happy to hear your son doesn't need insulin. It looks like your son's T1 was diagnosed early and he had most of his beta cells in good shape. For what I understand, honeymoon averages 7 months, and the insulin intake gets reduced, being very rare that the dose drops to zero. I'd like to very much to hear more comments from you on the trial and if you've noticed anything worth of mentioning.
Best regards, E.

Comment by Denise on January 20, 2009 at 11:36am

Hello, very good to hear from you and to be able to speak to another that has been through this and very glad to hear about the A1C and the ability of your son to avoid the highs and lows. I do believe it matters how far along into the autoimmune attack your child is on initial Dx. As you have said, many of the children with T1 have very wide swings - avoiding that is a blessing and I personally believe that protection of the remaining beta cells plays a part in that. As far as my son goes. Two weeks ago we had some of his highest numbers ever - 130 one morning and another morning with 138. We were so confused, his remainining numbers in the day were his usual 90's to about 105. But I started to get very frightened that his pancreas was under attack again - you know we all seem to think the worst at times. I guess too, because he doesn't use any insulin I am always waiting for the proverbial "other shoe to drop". Subsequently, we are back to our usual 101-118 in the am and the rest of the day mid 80's to mid 90's.
I have been told that I should be grateful for this time - and I am grateful, but that doesn't mean that we will not be disappointed if he goes back to using insulin. I want there to be a cure desperately - for all of the children. The question remains if there is ever regeneration of those beta cells....I have read some studies that seem to indicate that there is.
I have always thought that there is an issue with carb intake - I remember being shocked when the dietician came in to talk to us when he was first diagnosed about calories and not much about carb restriction. The general thinking - with many of the endocrinologists and nurse educators is to just "cover" the carbs. We have never subscribed to that thinking. We keep our son on a relatively (compared to other children) low carb diet. I would say he eats between 100-150 grams of carbs a day - no candy, very very rarely cake or cookies. We keep snacks low carb too. Lots of raw/cooked vegetables (which do have carbs - but much less than any baked products). We do not calorie restrict. When he has snacks we go for the 100 calorie packs because typically they satisfy him and the carb count is about 10-15g. Recently, I bought Dr. Bernstein's book : "The Diabetes Diet"(he advocates 30g of carbs a day - which is extraordinarily low). I was very surprised to read p. 38 where he talks about the honeymoon phase of Type 1 Diabetes and says, "There are several hypotheses as to why conventional treatment won't let the honeymoon go on forever, but my experience with patients indicates that with proper treatment it can. Essential to this is a low-carbothydrate diet and normal blood sugars. This will help preserve whatever insulin-producing pancreatic beta cells you may have.".... This was a very large suprise to me - did anyone mention to you that a low carb diet might help your son? No one mentioned it to me, in fact, I was met with resistance when it came to restricting carbs (even just to 150g a day). I have been told that you have to "let a kid be a kid" and apparently eating cupcakes is part of that. I don't want to sound like a zealot but isn't it disturbing to think that the progression of Type 1 can be minimized with diet? I wonder if that is really true and if that has anything to do with the results that my son has had - in addition to the shut down of that autoimmune attack early with the use of the drug.
Thanks for writing to me, I really appreciate it.
Best Wishes, Denise
Otherwise,

Comment by tracy on March 27, 2009 at 11:24pm

Denise, How old is your son? Are you concerned about the long term effects of this drug? I was very excited to find this site. Our son was 8 when he was diagnosed. I have seen Berstein's research. Aren't whole grains supposed to be a part of a healthy diet? I can imagine how as an adult you can thrive on a low carb diet, but for a growing child, aren't their needs different? Thanks, Tracy

Comment by Denise on March 28, 2009 at 8:39am

My son is 11, very concerned about long term effects of the drug - of course - who wouldn't be. There were no side effects, apparently they have been messing around with drugs such as these for 10 years, in Europe & here. Some have been released for the treatment of other autoimmune conditions - usually they end in mab. There are many sides to an issue, it was a very difficult decision. He took the drug IV for 8 days, no more since, no side effects, blood work is still done. He will be followed for 2 years (1/2 a year to go). The Macrogenics website has a powerpoint with information about the drug.
Everyone equates low carb with fat and a side of beef, not so....low carb for us means 150 g of carbs a day and he gets plenty of fiber and vegetables. He has blood work done often, His triglycerides much lower and total cholesterol lower, HgA1c 5.5%. He certainly does get whole grains, in fact the only bread that we eat has fiber/whole grains. He eats very very little of anything with white flour or sugar - where is the nutritional value in those? Whole grains as in Lucky Charms....made with whole grains?!!

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