Sunday, May 15, 2016

JDRF Summit

Yesterday at the JDRF Summit, William was stopped at a table where they were recruiting for a clinical trial on a faster acting insulin. "We will provide your test strips, insulin, and pay you $1400 to do what you already have to do everyday anyway - test your BG and dose with insulin." William asked if she had a pen and "where do I sign?" They aren't currently testing it with pumpers, (William offered to go back on shots but I declined) so he'll have to wait for that phase of the trial. That's an awful lot of money for a 14 year old. Maybe he can make a career out of being a guinea pig?

We were grateful to get a chance to hear Dr. Stephen Ponder speak. 

Two things have had the greatest impact so far in managing William's T1D: Scott Benner, who challenged us to be "bold with insulin" in his podcasts, and Dr. Stephen Ponder, author of Sugar Surfing, a book that shows how to use CGM (continuous glucose monitor) data to get better control of blood glucose and reduce standard deviation. It was a real honor to hear him speak.  He said, in his talk, that he has had diabetes 50 years now, he participated in a study of people that had T1D a very long time to see why and how they survived for so long. He said the factor that influenced longevity the most was "family" and "good parenting". I suppose this can be true of most anyone, but it is particularly important for those with T1D. This made me sit up straight and gave me more determination to continue to strive for the best management and information.

I was the last one out the door, my poor patient husband and William waiting while I spoke with one of the leading researchers in T1D who happens to practice right here in River City. Had he heard of LDN? Low Dose Naltrexone? He had heard of naltrexone. It is a drug used to treat people addicted to narcotics, blocking the narcotics from working. Dosage for that is 50 mg. At a much lower dose (4.5 mg at most), it is being used (off-label and through a compounding pharmacy) to treat people with autoimmune disorders such as MS, fibromyalgia, and thyroid diseases. The intent is to reduce inflammation. 

William was prescribed LDN by another doctor for Hashimoto's (hypothyroid). The idea is that when he's been taking it a while, we might be able to reduce the medication he takes for his thyroid. Well, I'm not sure I was able to answer all his questions, but he seemed genuinely intrigued and said he would look it up when he got home. 

I told him that the prescribing doctor had cautioned us to watch BG levels, though he didn't expect the LDN to affect them. I'd like to be able to tell you that LDN is positively affecting his BG, but I can't. I also can't tell you it isn't. Right around the time William began taking it, he had a one day GI virus. Not having eaten all day and with some luck and careful management, we got through the day with no serious complications. We had, prior to that day, been chasing irritating high BGs that we could not get to come down. After the GI virus, he began to run much, much lower BGs. The effect of a GI virus can cause low BG for a week or two after. We had just started LDN. I started backing off some of the insulin, or I fed him more (which he enjoyed), and I expected that sooner or later, this stability would go away. It still may, but it has been three weeks now. His last 30 days have seen an average A1C (BG average) of 5.7 mg/dL. (Normal non-diabetic is between 4.0 and 5.6 mg/dL.) His last (pre-LDN) A1C was 6.1. So, are we getting better at sugar surfing, or is it the LDN? Right now, I'd say the sugar surfing because we just missed his rapidly rising BG and he's at 235 and rising!

Why hasn't it been tested in T1D patients? My guess, and it's only a guess, that until recently, it was thought that if you've had T1D for years, your beta cells are dead. I've heard from a few sources that perhaps that isn't really true - some beta cell function may still exist. There still could be regeneration of those cells. If you have the perspective that the beta cells are dead completely, there is no need to seek a reduction in inflammation because you still won't get insulin production. 

My expectations are realistic - if it does anything at all, it will reduce the amount of medication he must take for thyroid, and if we are super lucky, the amount of insulin he needs. I know it isn't a cure. I'm holding on, however, to the belief that there is one out there. I pray daily to the saints in Heaven and our Lord that it comes soon. 


Disclaimer; Nothing you read on my blog is intended as medical advice. If you have questions about your medical care, please consult a doctor, I am not a medical professional and do not offer this as advice but only my own thoughts for our own situation. 

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