Nobody's Business?

If I had been the cashier, I would have lost my job. I would have told the old lady that I'd ring up her "Christmas gifts" (irony, anyone?) on a cold day in hell. (Actually, it's been close to that cold here in Kentucky so I might have to work on my phrasing.) Security would have been called and I'd ask them to haul her sorry a$$ out of there.

The Latinas in the attack amaze me at their composure, but I'm sure they've had lots of practice. The others standing about, I read that they'd said things to support the women, but I hear nothing on this video. I might have been shaking but I would have not stopped trying to stop ol' Grinchina. I will not be silenced by the hatred that seems to be okay to voice now.

While shopping, I sometimes find myself looking at the faces of similarly aged women for this woman. Yet, I've only encountered smiling people who politely said "excuse me" or "sorry" when in my way, or perhaps a sigh with a longer line, and maybe one or two resting bitch faces.  It is Christmas. It is to be expected.

As for this woman, judging by her age, it may not be many years before she finds herself in a nursing home or hospital at the mercy of those she thinks of as a "nobody". Though I know most health care professionals extend a lot of grace and forgiveness to ailing patients, this woman may come to know how it feels to be a nobody.

Playing with My Food

One time, the cashier at a grocery asked me if these Pomeranians were good to eat. I had to laugh, not sure it was even legal to eat Pomeranians. Opinions are often given in the media that we should eat local foods, and while I agree we should support local, I'm always pleased to see pomegranates in season.

Avocados are another, non-local treat. My family thinks I'm a bit nuts because of my excitement over an avocado plant. I've tried several times sticking toothpicks in the seed of the Haas avocados I'd eaten, suspended them in water to sprout, and got no results. Recently, I found a Florida avocado, a much bigger and a shiny green avocado, at StuffMart. Putting it in a bulb vase, I soon had many roots and a tiny sprout. After planting in dirt, I can almost watch it growing. It makes for a good science experiment, and who knows? I may make avocados a local food.

In a month, it grew over 12 inches!

The bulb vases are available right now at StuffMart in the produce section if you want to give it a try. They are a little over $3 and comes with a paperwhite bulb. I'd much rather grow an avocado.

Siblings

As I watched her slide off the brass elephant, I recognized in her something of myself. Which of our parents gave us this propensity to be amused at ourselves even while looking a little foolish?

I'm pretty sure that trait came from my father, who was known to be silly in his time.

Growing up as a child, I remember both of my parents loved learning. My dad was always reading a newspaper, Reader's Digest, or National Geographic. My mom kept the library busy, still does today. She brought me to the library so regularly and read so much, that it had a profound influence not only on me, but on my girls as I passed it on to them. Even today, my mom asks more questions than the  homeschoolers on when she goes with us on field trips, something I'm proud about.  Neither had the opportunity to be college educated. In fact, my father received his high school diploma honorarium in his 80s as he had dropped out to support his widowed mother. Both, however, instilled a love of learning in their children.  

It is strange, however, to see yourself reflected in another human being. Sometimes, it is also neat to see humanity reflected in a creature society doesn't always consider self-aware.

Diane shows photos to my favorite gorilla, "Jelani". She and her girls
enjoyed learning that he likes to look, in particular, at photos of baby gorillas.

Winter Predictions

Putting the horses in the barn of an evening is both a luxury and a chore. They'd probably do just fine outside all night. A giant moon looms, but I hear coyotes closer every day. My miniature horse, Chyron, is a spitfire and could drop kick one coyote, but it sounds like a dozen. I imagine a pack of them attacking the minis in their paddock. My Arabian spooks as I lead her in. A deer is likely in the dark field, waiting her turn to drain my water tank for the horses. It is emptied much quicker than one horse can drink.

In the barn, near the hay pile, I see something black. Holy moly! I've never seen a wooly worm that large! It's all black. I don't know about you, but I can never remember if more brown means bad winter, or more black bands mean I'm going to be in long, cold misery. So, I did what any modern person would do: I Googled it.

http://www.hiltonpond.org/thisweek020608.html

After living here over twenty-one years, I'm still amazed to find creatures and things that I didn't even know existed and live with us on our property. Not a wooly worm at all, it is the caterpillar of a giant leopard moth, identified in part by its size and the red bands when it is curled up. I wish I had scooped it up right then, but I finished my horse chores and when I'd looked again, it was gone! Likely, it is wintering in my hay pile and we shall meet again.

Note: I read from this website that they are good! They eat invasive honeysuckle.

Unanswered question: will it be a cold winter? We have so little rain, we have a burn ban in place. I'm thinking the rain will come in the form of snow.

Reading: Scent of the Missing: Love and Partnership with a Search-and-Rescue Dog by Susannah Charleson

My Privilege is Showing

It was only after I reached my car that I began to realize the mistake I'd made. I'd left the store feeling pretty good about myself. Spontaneously, I'd helped someone out of a tight spot just to help her have a better day. And yet, I'd missed the real opportunity. My whiteness was showing.

Waiting third in line at Walmart, of course I was in the line where there was a payment problem. I needed to get back to pick up my son from his class. I have a talent for picking the wrong lines. I watched. The cashier left to speak to a manager, waving the woman's card. They debated on what to do, both shrugging their shoulders. The older black woman looked defeated. Impulsively, I stepped around the woman between us and asked for the total on her bill. $50. I asked the woman to please let me pay, I could do that. "Merry Christmas early!" I said. "I want you to have a good day going forward and I'm happy to do this."

Still with her head down, fumbling with her wallet, she thanked me sincerely, and said she had not had a good day up to that point. I nodded, smiled, stuck my credit card in my pocket and retreated back to my place in line. It had actually had made me a bit nervous to act, but also felt exhilarating.

Then, back at car, I realized my mistake. I'd played the rescuer with my easy money, made myself feel good, and had missed the golden opportunity. What had happened to that woman that day? Why hadn't I taken just a moment more to truly connect instead of sweeping in with my money, a temporary fix. Although I was determined to never tell anyone what I'd done (thinking the deed was made better by keeping it secret), I write now about it to contemplate how I, with the ease of my money, thought to make a woman happy for a moment, not really understanding what it is like to be her. Perhaps I shamed her, me with my credit card that worked. Perhaps, though she really needed the financial help, she needed someone to "see" her more.

I can't do much about the hatred and bullying that has crawled from the shadows, but I can fight it with my own awareness. Next time, I'll ask, "What is wrong?"

For Carl

Just before World War I, a young boy-man felt so negative about the direction his country was taking, that he left Germany for the United States. He enlisted in the army, becoming a naturalized citizen. As the war progressed, he was sent overseas to fight his brothers who were across the fields in the German army. Ultimately, he died from having served, mustard gas and cigarettes causing lung cancer.

My dad remembered only a few things about his own father who died when he was an adolescent. He remembered collecting scrap metal with him to help the family scrape by in the Depression. He only recently, during his last illness, shared his anger that his father didn't chance an operation to remove half his lungs, prolonging his life, and giving my own dad, his young boy, more time with him. He remembered that his dad said "zink" when he meant "sink".

Tidbits would shape my image of my grandfather over the years, but there wasn't much. I knew he came from a small German town named Fritzlar. I knew he joined an uncle here and that he had other family, perhaps in Baltimore. I never knew, however, why he came to the United States. 

During my dad's last illness is when my dad told me that my grandfather did not like the direction his natal country was taking. That puzzle piece strengthened me. I had often wondered how my German relatives lived through that dark German period without doing anything. What were they doing as their neighbors were dragged off? My ancestor, my grandfather, sacrificed his life to fight against wrongdoing. 

We have as a nation said that a person that has personally perpetrated evil on other people, has espoused hate, revenge, and discord, can still succeed, can be lifted up to the highest position in the land. The end justifies the means. I must explain to my son that when it comes to "no means no", it doesn't apply if you are famous or the president. I am worried for my friends who have become targets of this monster. 

Like my grandfather before me, I will fight back. I will not be the one silently watching as my neighbors are treated with hate and injustice. I will not stand silent. I console myself with the fact that there is a record: Facebook. Those that stood with a man that epitomizes hate will be easily identified. When history is read, our descendants not have to search for a few words on a death bed to know if you stood with evil to justify your own agenda. It will be there for all to see. That is, if there is a world for humans. Emails got 100 minutes in the debates, climate change got none. 

*At present, I am taking a break from Facebook. You may comment there, but please excuse me for not responding as I won't see it for some time.

A Snake in the Grass

Many people know that Nancy Lincoln, Abe's mom, died from milk poisoning. Before a weekend trip to Lincoln's boyhood home in Indiana, I was not familiar with the plant that causes this disease. Meat or milk from a cow which has ingested snakeroot is toxic to humans. The plant is also toxic to horses and other animals, but apparently, not cows. Poor Nancy would likely have lived with today's medical intervention.

We hiked a bit about the national and state park, and having learned its appearance, I began noticing it. I wondered its purpose and why it wasn't eradicated. "It should be pulled up," I thought, "Poisonous nasty stuff." I resolved to look for it at our own place when I returned home, worried about my horses.

Here's what I found:

Yep, we not only have snakeroot, we have a hedgerow of it. Little did I know.... 

It just goes to show, don't go judging someone else's snakeroot until you look in your own yard.

"There I grew up." - Abraham Lincoln

Note: Seven deer regularly visit our backyard and eat my hostas and lilies. They apparently know better than to eat snakeweek. 

Alarming

(In my best impersonation of The Donald)

My son is very, very, very good – let’s just say – he does a tremendous job at managing his diabetes. Everyone says that he is doing a really, really great job. All the doctors are amazed at how good his A1C is. He does tremendously. His A1C – really, really good. Believe me! You’d be impressed.

Unlike many of Donald’s statements, this one is true. William really does do a tremendous job. He really does rock his A1C. He does surprise doctors that marvel that testosterone and puberty haven’t gotten the best of us. They ask how we do it. We fight from becoming smug and thinking “we’ve got this”.

This boast to you has a purpose. We manage very well. We work hard. We put in place routines and double checks. We remind each other. I nag. And nag. We get the best technology. We are planning for a diabetic alert dog for another layer of alerts. I study. I go over reports. I try new recipes, encourage exercise. And yet, last night could have ended very badly.

It is important to understand, (and yet I know you won’t really unless you live it) that even with the greatest effort, T1Ds and parents of T1Ds live with the knowledge that the slightest mistake could be serious, even deadly. I want you to understand because there are T1Ds and parents out there struggling, working hard to achieve just normal health.  

Last night, William’s pod ran out of insulin. It gives a very high pitched alarm which neither of us heard. It’s Jeffie’s, my cat’s fault. He usually wakes me multiple times a night and I instinctively glance at my Pebble watch for William’s BG. Perhaps I was just too tired, but I didn’t wake until 5 a.m.  William, surprisingly, was already awake. (He normally will not wake to alarms.) His pump had been out of insulin for four hours! The longest one should go without insulin is two. His blood glucose was close to 300 mg/dL and he had small ketones.

You might ask where was the Dexcom (continuous glucose monitor) alarm? My high alert was off – I’d sometime turned it off because I knew he was high and the constant alarming was disturbing something or someone. I’d forgotten to turn it back on.  William’s phone was silenced. Both of these things should not happen – but it did. We screwed up. William didn’t want to wake me – he knew I must be tired if I didn’t answer the alarm.

How many times have you accidently left the house without your mobile phone? Or lost your keys or work ID? Forgot to get gas the day before and you’re running late, and now need to fill up? Forgot to bring the checkbook or cancel that appointment? Imagine that forgetting or making one mistake would make you deathly ill. I can't fault him for forgetting to change the pump. It is so easy to do.

In debriefing, we think that his intense workout before bed kept him from going really high. We put in place a better before-bed check list. We learn often, with this disease, to forgive ourselves, improve our routines, and move on. There are nights when I’m outside and I look up at the stars and wonder – how did this happen?  Why did this happen to my precious boy? He is so strong and so good. Believe me.

Note: We will be volunteering this year at the JDRF Walk this year at Churchill Downs on October 15th welcoming new families. Because we'd already asked your support during fundraising for a JDRF bike ride, we are not forming a walk team or fundraising. William and Kurt are joining a JDRF bike team in training and plan to use this way to participate next year. If you'd like to ride with us or find a JDRF bike team in your area, drop me a line.

Timing is Everything

Mass was about to start, so I turned down the volume on my iPhone and silenced it. I slid it into the handy pocket on my thigh of my new capris. Every once in awhile, I slid the phone out and checked William's blood glucose. It was still good. William was home sick with a mild stomach ache and no other symptoms. Something he ate? Appendix problems developing? A virus?  A chance to sleep in? (Turns out it was a virus.) There was no way to know and only time would tell. With BG monitoring technology and only 2 miles away, I deemed it safe enough to leave him at home alone while we went to Church.

Yet, I was concerned, as any MOD (Mother of Diabetic) would be. If he were to throw up, a crisis could develop rather quickly. My Pebble watch which normally displays his BG at a glance and notifies me if he texts, was not working. And so, I pulled out my phone periodically to check the "Follow" app displaying his BG.

Midway through, the deacon stood at the ambo, trying to make sense of the readings exhorting us to leave our families to become a true disciple (Luke 14:25-33). "Did God truly want us to hate our fathers and mothers, our wife and children, ourselves?" I'm not quite sure what he concluded. As the homily came to a close, he turned to go back to his seat, and it was deadly silent in our large, cavernous Church. I - unwisely - felt for my phone to check on William.

"SORRY, I'M NOT SURE WHAT YOU SAID" echoed around the walls of the Church. Somehow, without meaning to, I had wakened Siri. Why was she not silent?? My phone sounds were off!!?!! Mortified, I tried to silence her, but too late. I heard simultaneously a collective gasp and laughter from the congregation.

Oh, but, maybe no one would know it was you, you might say. No, see, we sit off in a section nearly by ourselves. During flu and virus season, there are less chances of having a really sick person sit behind us, having to exchange a handshake with someone that just sneezed into that hand. Getting the flu or a virus, can be serious now. So there we were, on display, so to speak. The timing could not have been worse.

We could have maybe pretended we didn't know who just did that, except my husband turned the purple color of his shirt and put his face in his hands. He could not fit under the pew, so that was the closest he could come to hiding.

This is one of those stories that will be passed down to my grandchildren, I have no doubt. I hope I lightened the day for those that laughed. I hope those that gasped can forgive me. I walked out with my head high though. I will protect my T1D warrior at all costs. And Siri, you bitch, I'm turning you off.

A MODern Society

When a woman is sleep deprived, constantly fighting ignorance and insurance or both, balancing many plates in the air and always worrying about the life of their child(ren) with Type 1 Diabetes, and has social media access, you do NOT go and tell said woman with already raw nerves to go anything-yourself.  

Mississippi State Rep. Jeffrey Guice, R-Ocean Springs, because a basic lack of decency, crossed that line this week. Looking for help getting through Medicaid red tape for supplies her daughter needed to, well, stay alive, this asshole representative fired off a quick email telling her to get a job to pay for it herself. Already qualified for Medicaid even with a husband working two jobs, Nichols was looking for help navigating and improving the system, not a handout. 

The reaction in the DOC (diabetic online community) was explosive. Mr. Guice has been feeling the wrath of many a MOD (mother of diabetic) as word spread of his insensitive and butt-face ignorant reply. Poor guy (not really, not an ounce of sympathy), I'm betting he doesn't know what hit him.

Increasingly, the collective force of the DOC in educating, changing technology, pushing forward treatments, and supporting each other amaze me. It reminds me of bonobos. Yes, you heard right: the smaller, cuter cousin of the chimpanzee. Bonobo females experience less physical aggression and violence from males than the female chimps because bonobo females band together and prevent it. They prefer mates that are nicer. As a result, over time, as a society, bonobos have self-domesticated and become a less aggressive, more peaceful species.

If apes can do that, why can't we humans also chose representatives that show compassion and concern for the welfare of our children and country? 

Judge Not

My impatience grew. Why were they coddling this child, letting a toddler bring offertory gifts up the main aisle of Church? Either the basket was too heavy or the child was resisting. We all sat and waited. From where I sat, I couldn't see the child. Why didn't they just pick the child up? We all sat waiting. And waiting. 

I looked at the deacon. He was smiling, not impatient. Then, I saw her. A tiny girl struggled up the aisle. She was not carrying any gifts for her hands gripped tightly the handles of her tiny walker. (I didn't know they made them that small.) Each step took great effort, her back hunched over, her legs not quite cooperating. Her mom, dad, and brother turned and smiled at her. She made it the whole way! She must have been new to the walker for their joy was unmistakable. 

More than one churchgoer wiped away tears. Several minutes of sitting seemed inconsequential now. The parents, not permissive and indulgent, were exalted.

Truly, I don't remember much of the homily that day. I just remember the lesson I learned from a little girl - Judge not. You can't always see exactly what is going on in someone's life. You can't always understand all the challenges that each family faces with their children. Have patience, and maybe, the light will shine down and show you that we each struggle. We each rejoice with small achievements. We are all truly blessed. 

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.