Friday, September 09, 2016

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.

Wednesday, June 29, 2016

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? 




Monday, June 27, 2016

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. 

Monday, May 30, 2016

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.

Wednesday, May 25, 2016

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. 









Thursday, May 19, 2016

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. 

Wednesday, May 18, 2016

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. 

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