It's Magically Delicious!

We all giggled at the scoreboard. "I just need me Lucky Charms," my husband quipped. The image of the player at bat looked just like a smiling leprechaun. He wasn't as lucky as one and our team lost. The evening was still enjoyable as we tossed back popcorn and watched many foul balls go into the stands and either be caught or hit someone.

The stadium has good popcorn. Bottomless popcorn. Not extremely carby - but my T1D son would ordinarily have to bolus (take insulin) for it. He ate it free, maybe a quart of it, his BG dropping. Maybe he under-bolused for dinner? We had stopped at Qdoba on the way to the game and he got the burrito: a 90 some carb burrito that he counted as 70 carbs. 

Earlier in the day, he at lunch free: turkey polish kielbasa (14 carbs), cheese and a salad. No effect on BG. Around dinner time, I gave him 0.5 mg of the LDN to see if it would stave off the rapid evening rise. The rise didn't happen despite a 90 carb burrito with rice!

What did happen that night just after I'd fallen asleep was a text from son saying, "please come, I'm 77 and dropping". He'd had 3 mg LDN to complete the day's dose just an hour prior. His basal was set at a 10% reduction to try to prevent any lows. I was beginning to see a pattern, dropping low just an hour after bedtime. It took 25 carbs and protein to bring him up from the 50 to 136 flat. I set a 15% reduction for the rest of the night. 

It was already late, my chance for a good night's rest shot, so I looked at his record of insulin usage for the day. I couldn't believe it! 78 units. 78. I looked over all the individual records - yes, there's breakfast. Where's lunch? Oh, yes, that was "free". He had had one half hour exercise, just lifting weights. There is no reason for all these lows.

Something is going on. I'm not saying it's the LDN, but something is going on. A typical day usage is 100 units of insulin. Yesterday, he used 78 units. I wonder what today will bring?

p.s. When looking at the Calorie King app to see how many carbs your T1D ate for dinner, do not look at what you yourself ate! I picked a quesadilla with vegetables and chicken! I thought it was a healthier choice. 1000 calories!!!! (At least, I didn't eat all of it.) Next time, I'm getting water. 

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. 

How Low Can You Go?

What frustrates William about math, he said, is that all the "rules" were made by men that are now dead and he can't argue with them when he disagrees with a concept. Instead, he argues with me. We are using the Art of Problem Solving Pre-Algebra and it does take time to explain formulas rather than expect rote memorization. I'm not sure, however, I'll survive another year.

Yesterday was not a particularly good school day. We fought lows all day, chasing them with shots of orange juice and other treats to bring his BG up. We lowered or turned off his basal rate. There was no great activity level.

The fire engine alarm on his Dexcom always jolts me to an upright position in the middle of the night. Dexcom thought he was in the 60s and then 50s (compression low), though he was in the 70s. We no longer considered 70s "low" in the daytime, but is too dangerous for sleep.  A shot of orange juice and continued reductions in basal brought him up.

We are only seeing higher numbers at dinner and evening. Two nights ago, a mistake in the dinner bolus sent him to 300s. A shower and some weight lifting took care of it more quickly than I expected. Yesterday evening, as I've seen a few evenings, a very rapid rise (one arrow up) of BG which we stopped with a temporary basal. He didn't go over 180. This rapid rise is new.

Today, I've set a temporary basal until dinner of 25% reduction to see if we can avoid the lows. He's coasting at 99 right now. My goal is to get him leveled out above the 80s or 90s. Lately, he doesn't feel bad in the 70s or even 60s, so I need to make sure he's "programmed" to keep him higher.

It's hard to not hope that the LDN (low dose naltrexone) is helping. I want it to. I really do. What if there was a drug that helped those with T1D get smoother, lower numbers? But, the conclusion cannot be reached. I am not making this a scientific study, detailing what he does when, what he eats. I'll leave that to (much higher paid) researchers and doctors. Perhaps it is just William's body right now. He doesn't yet have facial hair, a clue that his body may yet grow to match his size 11 shoes. And, he's only 14 years old. Many changes yet to come, all of which can affect BG.

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. 

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. 

Resources:

http://www.ldnresearchtrust.org/

https://www.facebook.com/groups/LDNRT/

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.