Dead Tired

Two nights ago, my husband reached over in the dark and tapped my hand. My Pebble watch was vibrating that it was time for a glucose check. I didn't respond. He tried tapping my shoulder. Nothing. Alarmed now, he started shaking the top of my head. He was thinking, "Oh, God, please she didn't just die and leave me with all of this to manage." I finally woke and half awake, stumbled out of bed to go check William who had thought it was a good idea to have a midnight snack and had been a bit high at bedtime, gave himself insulin (too much, too little?) before he fell asleep.

The next morning when my husband told me his panic in the night, I laughed. I told him I'd hoped he'd miss me a little for myself and not just that he'd now have to manage all this alone. Of course he agreed that he surely would.

I was just really, really tired. Lately, the light vibration of the watch doesn't wake me. Two nights ago, I missed the alarm, but later, randomly woke up to find William had been low for two hours. Guilt set in. He was 55 mg/dL when I tested and the graph showed he'd been lower. Possibly, that was a false compression reading, but I'll not know since I missed the alarm.

It doesn't happen often, but that is the fear T1D parents carry - that it will be their fault if something bad happens. Often, parents are told to run BG higher at night to preserve their own sleep and to give more of a cushion from serious lows. Eventually, the artificial pancreas will replace pumps and nighttime lows will become more of a rarity.

As we work for tighter control, William doesn't feel his lows as much and likes to be in the 70s and 80s. This is where he says he feels good. The difficulty is that 70 isn't that far from the 50s and 60s, where I don't want him to stay for long. It takes vigilance (and a great deal of nerve) to let him stay there. Sometimes, we have to ignore the number and go with how he feels.

Notes:
I re-wrote the basal program to avoid lows in the morning. I was successful, sort of, as he was 186 when he woke up. Back to the drawing board.

I'm almost done with my Coursera course "Gut Check: Exploring Your Microbiome". Next on the docket is a course about Type 2 Diabetes since I certainly have the genes for it.

The Poor Monkeys!

Early on, I used to go in and look at him, just to make sure his chest was rising and falling. My knowledge, after discharge from the hospital, was enough to tell me that I could make a mistake with serious consequences. I knew what I didn't yet know, the experience I was lacking. It made my heart race, my hands shake, ice water fill my veins. The greatest fear of parents of T1D kids is the "dead in bed" syndrome or finding the child unresponsive.

Not anymore. I'm not going to say that I don't have concerns about low blood sugar or that we are overly casual. We certainly treat low or dropping blood glucose levels. You won't, however, hear me say I saved my child's life with a box of juice because it just isn't true. It sounds very dramatic. It certainly engenders sympathy from people that don't and won't ever understand the awfulness of the disease. My child and I are working on saving his life daily, but not by rescuing him from lows, but rather, from lowering his A1C without significant number of lows and without a large standard deviation. Long term, this will be more important to him than a 59 mg/dL here and there. 

I was reading yesterday:

In studies of insulin-induced hypoglycemia in monkeys, 5–6 hours of blood glucose concentrations of less than 20 mg/dl were required for the regular production of neurological damage; the average blood glucose level was 13 mg/dl. Fortunately, hypoglycemia of that magnitude and duration occurs rarely in people with diabetes.

Five or six hours of low blood sugar for neurological damage. Well, now you know why I don't sleep. I don't 100% trust technology and I do check his BG at night. Extended hours of low BG are dangerous. So, I am losing sleep over lows, but I'm no longer putting a mirror under his nose to see if he fogs it up.

Plasma glucose concentrations of less than 18 mg/dl occur occasionally in people with diabetes, and dying brain cells, presumably neurons, have been reported following episodes of hypoglycemiaat plasma glucose levels of 30–35 mg/dl — but not following episodes of hypoglycemia at plasma glucose levels of 45 mg/dl — in rats. Thus, it could be reasoned that these categories are not binary and that there is a continuous spectrum with increasing risk of neuronal death at progressively lower plasma glucose concentrations. Nonetheless, seemingly complete recovery follows the vast majority of episodes of clinical hypoglycemia.

How low is damaging?

With the CGM and Sugar Surfing, we're able to head off most all lows, rarely dipping below the high 50s, which are followed by a "seemingly complete recovery". 

So while I'd like you to see me as a superwoman complete with cape and juice box in hand, the life saving efforts are more boring and long term. Day to day tweaking insulin ratios, assessing data, figuring out meal plans, pushing exercise. The dangers of high A1C and high BG are more likely to lead to complications and death than low BG. 

Notes:

Had an endocrinologist appointment yesterday. A1C was 5.9, down from five months ago at 6.1. Obviously, the good doctor had not looked at William's chart because he asked if we'd ever considered getting a CGM (continuous glucose monitor). I almost snorted. William has used one since 3 months post diagnosis, 2.5 years. Yeah, don't think we could have achieved lower A1Cs without it. 

Key actions for William:

• Becoming more comfortable with lower numbers (Note: William is 14 years old and numbers we are comfortable with are in part due to his age/maturity. I know everyone will have different comfort levels based on size and age.)

• A tighter range for his target: right now at 70 - 160 mg/dL

• Pre-bolus (if in normal BG range) 15 minutes before eating or longer if high

• Not treating numbers in the 70s if steady and awake

• Lower sleeping target: around 100s if steady, but won't treat until lower 80s and that is just so I can get some sleep.

• Lowering the amount of complex carbs, e.g. rice, noodles, gluten free bread. Still eats them, but in smaller quantity

• LDN: can't prove it, not recommending it, but I'm seeing smoother numbers. Just saying.

• Exercise

• Gluten-free and limited dairy

• Probiotics, Vitamin D, and other supplements

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. 

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. 

Trying to Figure It Out - LDN or Just Diabetes?

The biggest difficulty of diabetes is that it can be so unpredictable. One small mistake in dosing or calculations can result in no sleep that night or a missed appointment or tae kwon do class. One exercise makes blood glucose plummet and another makes it go sky high. The same exercise can make one go high one day and low the next because of a little competitive spirit.

It takes awhile to see any patterns and to believe that the BG pattern isn't going to go back to what your previous month's experience taught you. Surely, this is just because he ____ (fill in the blank). We try to just adjust in the moment, adding insulin here and carbs there to minimize lows while still getting good results for the A1C and minimizing standard deviation.

The following analysis of his BG is done with Clarity and Dexcom G5, Note that the readings are not always consistent with finger pricks and a low of 60 may happen while I know he is actually 75 and not low in our book.) Our target BG for daytime is 100 mg/dL and 120 mg/dL for nights. I have made no changes to that in the past five months.

Two months ago, A1C was 6.1 which was consistent with his checkup 5 months ago. This was achieved with 2.5 % low readings. Last month, with my father ill, traveling, funeral, our concentration and attention wasn't always there and A1C rose to 6.4, still really good, and with 2.8% low. This past month, his A1C has lowered to 5.6 % but with 6.7% low. I'm not happy with that percentage of lows though he is nearly 85% in range. Though I'm lowering basal rates and adjusting carb ratios, I've not changed targets.

He should be far past the effects of low BG due to a gastrointestinal virus on April 22. He started using LDN (low dose naltrexone) on April 11th, ramping up from 0.5 mg to his present level of 3.5 mg. (Target 4.0 mg.) He is exercising no more than normal, We are using Sugar Surfing techniques, but were before.

In general, he trends low during the day and BG can be stubborn to bring up. In the evening, BG spikes quickly but comes down just as quickly sometimes when corrected. It's hard not to wonder if the LDN wears off by the evening. Perhaps giving some around dinner could ward off this daily spike? And of course, there is no way to know LDN has anything to do with anything.

I know a 6.7% low average can't be allowed to continue, but I'm reluctant to change my targets, rather want to change treatment. Yesterday, I put on a 25% reduction of basal all morning, which was too much and resulted in a higher than desirable BG at lunch. I know I'm going to have to change something: I was up until 4 a.m. after over-correcting his high BG at bedtime. I'm thankful we homeschool, because the frequent carbs and finger pricks tires him, too.

Note: Though 14 years old, son is of adult size and still growing
LDN was prescribed for thyroid condition not diabetes.

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. 

Could've, Would've, Should've

Fecal transplants. William gagged and held out his hands to ward me off. He didn't want to hear about it. He's a bit squeamish. "Seriously, people eat other people's poop??"

The image that portrays is not quite that literal, but yeah. Over the past two and a half years, my study of autoimmune diseases keeps bringing me around to the gut. Although autoimmune diseases have a genetic component (you have to be prone to get it), there has to be a process that brings it on and perhaps a trigger. In looking for high level and interesting biology courses to challenge William, we both started (concurrently, but independently) taking a Coursera course on the human gut microbiome. There it was in black and white  in a video segment: current research shows that "leaky gut" may be a leading cause.

May be, could be, in some people....We don't have time to wait. There could be a vaccine, there could be beta cell implants, there could be a bionic pancreas. All that takes time and the bureaucracy that is the FDA. In the meantime, William and I need to keep William as healthy as possible so that when (and notice I say when) a cure becomes available, he will be eligible and suffer no long term complications.

So, no, I'm not encapsulating microbes from a questionable source to feed to him. Some research shows that inoculation from a healthy gut into a struggling one can have positive effects. We aren't doing that just yet, but I thought I would use my blog to chronicle some of the things I'm learning and we are trying. It can be a record of sorts for us.

I do believe that autoimmune begins in the gut. As a small child, William began having stomach aches, headaches, light sensitivity and skin issues. Doctors dismissed all symptoms with a wave of the hand. "He is constipated, he needs more fruit, use this lotion, ..." No real answers. With an over-active immune system, he had to have his adenoids out because they were filling his ears with fluid and his eyes itched constantly. The immune system didn't stop there though and went looking for something to kill.

So if I could go back in time, which I can't, what would I have tried? Note, I am  not saying how could I have prevented it nor do I blame myself as there is no research to prove any of this, but if I could go back in time here is what I would have done.

• No fast food or processed foods
• Remove gluten and non-fermented dairy from the diet (we did do this, he was lactose intolerant)
• Have labs run to determine vitamin deficiencies
• Take a rotation of probiotics
• Fish oil, coconut or MCT oil

Pediatricians treat symptoms and rarely if ever run all the labs that showed he was anemic, low Vitamin D levels, had a zinc/copper imbalance, was hypothyroid, and had a rising A1C (blood glucose average over three months). Endocrinologists will prescribe the insulin and the thyroid medications which chase after the fact you have an autoimmune disease, but not what to keep it from progressing. 

I'm excited to see the research into the gut microbiome, but once the damage occurs and the adaptive immune system makes a mistake and goes after the wrong thing, mistaking your own cells for a "bad" microbe, how does one retrain/reset the immune system? We are trying a course of LDN, Low Dose Naltrextone. Now if you are lucky, you've never heard of it. At a much higher dose (50 mg), it is used to treat narcotics addiction. At a very low dose (up to 4 mg), it is being used to calm the immune system and reduce antibodies. William was prescribed LDN to attempt to lower thyroid antibodies. We will test for this in several weeks.

I will write more about LDN tomorrow.

Resource: Gut Check: Exploring Your Microbiome

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.