Low, Lower and Lowest

"Last Evening"

One word to describe life at the moment.  Actually three words. But once again, diabetes, in all its power, has this sneaky way of ripping the proverbial rug from under you.

On my way to bed last night, a little later then usual, as I was into a really good book, I did the "Security check" to ensure Rowan's sugar was at a safe level for the night.

5, 4, 3, 2, 1......beep, and 2.0 mmol/L  or 36 in US terms. 

WTF !

The juice on the table beside her bed was empty, and not replenished, Shit!!!

I leaped down the stairs, retrieved a juice box, and leaped back up to her bedside. She was alert, and drank the juice, gulping it down, with her eyes closed and the sweat soaked through her PJ's.  I guided her gently back down, and just sat there. In the dark, cursing this (*&^*%^ disease. In my head of course.

I strolled down stairs super slow, feeling defeated once again. Going through the evening's events, in an attempt to account for this curve ball that was sprung on us violently out of the blue. And, nothing popped out as an obvious cause. Great I said to myself. Not even able to develop any preventative plan to avoid this attack in the future.

I think this is the most draining and difficult thing about diabetes, the unpredictable events that can't be prevented or planned for.  Those unexplained anomalies. Our only weapon is glucose monitoring, trending, proper food to insulin to activity amounts........Ya good luck with that with kids and diabetes who are bar none the most unpredictable creatures on the planet.

Mr Diabetes, this was really low of you, one the lowest for Rowan, and you remind me to never trust you and lower our guard. EVER.

Trev

Wanted - Diabetic Child to Feel Low

"Our baby"

Now if you read this and don't have Diabetes the title looks really bad, and please don't call the authorities.

I am not referring to a mood state of low. I have posted many a times regarding the same issue (my kids hypo unawareness) and here we go again.

We pick her up from the park (she was with her two older sisters) and load them into the van. We perform a routine check and........

Ready for this 1.2 mmol.  If you live in the US multiply by 18.  Yes I know, I gasped, as my wife scrambled for a juice box which she inhaled. I peeled into a 7-11 to grab more juice.

I was so disturbed, and shaken by this low that we just sat in front of the store in shock, of course,  nursing the sugar back up into a safe range.

Like no sign at all.  She did not look sweaty, she wasn't shaky, didn't feel hungry, actually told us she felt fine. Her natural complexion could land her a roll in a vampire movie, but what the hell. And yes we double checked the reading.

Then my wife turned to me and said, "I am so glad we picked her up when we did." If we were 10-15 minutes later the outcome makes me nauseous to ponder.

"Medtronic Sensor"

I went to the pharmacy this weekend and they now stock medtronic sensors,  $220 for 4 of them.  I think it's time. But those cannulas, which I've sampled are like the ones they use for tissue biopsies, BIG MO FO's.  I did read online that they are coming out with smaller ones in the USA so maybe by the time Rowan's my age we may get them. Also still waiting on the Dex for goodness sake.

Once again we had a very close encounter with a potentially deadly outcome.

Just needed to air this and get it off my chest. Just checked her she is 10 mmol and I am okay to sleep now.

I feel selfish complaining, when people are fleeing their countries for fear of being shot or poisoned by radiation. It does keep me humble, but nevertheless it doesn't make my worry any less.

I love my kid, more then myself, and the thought of not having the technology due to financial reasons, or because it is not child friendly, really chews me up inside.

I have started to prey again and I hope and prey that she soon starts to feel and sense when she is low. Please GOD, help me out here.

Trev

School for Type 1 Kids - What's Your take?

This post is directed at Parents caring for school aged Type 1 kids.  In my recent post "To Pump or Not to Pump"  there was a period we took Rowan (our 6 yr old pumper) off her pump. To give her a break. 

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The experience of breaking from the pump was a difficult one. Hence the post.

I have to be honest, we were very frightened when sending our little insulin dependent 5 year old pumper to school, who can't feel her lows.  Will they test her often, will they feed her activity, will she be okay? It is very frightening at first. 

Now she is back on her "Mr Wizard" pump and things are running smoother.  However, when we had her off the pump it got me thinking, and that's never a good thing. 
First off, our school have been absolutely amazing! They have been willing to take on the responsibility for Rowan's Diabetes management, they have learned how to problem solve, count carbs, and they know how to communicate with "Mr Wizard"  The communication has been bar none the best I could ask for. 

That was with the pump.  During the pump break I had to inject her at lunch time, for legal purposes further documentation was needed due to the switch in insulin delivery (Pump to Injections) It was easier for me to just spend lunch with the wee one then to track down an endo or GP to sign the 4 page document.

I am curious as to what other parents go through, challenges, difficulties, positives, anything related to having a Child with Type 1 in your particular school system.

My School is great and do everything possible to meet the needs of Rowan, and us as a Family.

How is your school? 

Basically what's your take on Type 1 kids in the school system?

Sunday Night Summary

AKA the Day was too busy to write an original blog.

On a positive note, my 6 year old type 1 came up to me tonight while shopping in the bread section of the local grocery store and said "Dad I think I am low" Now most parents would probably be "Oh crap" and interpret this as a failure. Not I, I was happy, oh my, was I happy!  Why, well if you've read the post, "My Kid Can't Feel Her Lows" you'd know.  I immediately asked her how she knew she was low and she told me, "I can feel shaky and funny in my legs" I said," that is how daddy feels too when he is low"  Then I positively reinforced her coming to tell me, and gave her a bag of mini-eggs, I know I should pay first but this was a medical emergency.  So to me I can rest a little easier and know that she is capable of feeling and articulating when she is having a low blood sugar.  Huge relief! Hurray for the low response, yippee for the adrenaline!

Well it has been a good week in the Posting department.

Number 1 on the list: Pro Carb or Low Carb

Number 2: Have Your Cake and Eat it Too

Number 3: Timing is Everything

Thanks to all for your comments!  It is encouraging and supportive.

Cheers!

Trev

My Kid Can't Feel Her Lows

Hypoglycemic Unawareness has Plagued our family since Rowan's initial Diagnosis. She was 18 months when she was introduced to Mr D, and she is now 6.  Unfortunately she still has no awareness when she is low.

"This is what the symptoms are when you are aware"

So, being the inquisitive person I am, I did a brief search of the literature, actually more like an extensive search.  My response from Team Diabetes was basically she has an immature nervous system and will eventually feel them(the low blood glucose) Well we are still waiting... 

I found a few research papers today that discuss the impaired regulatory response that children with type 1 diabetes can exhibit when hypoglycemia occurs.

First one is a study published in Diabetes Care in  2009 titled, "Impaired Awareness of Hypoglycemia in a Population Based Sample of Children and Adolescents with Type One Diabetes".  The researchers sent out a questionnaire to 656 patients to determine hypoglycemia awareness status.  Out of the 656 respondents, 29 % had a decreased level of hypoglycemic awareness.  The 29% also had an earlier onset of diabetes.  Hmmmm, this is starting to make sense to me now. Earlier onset, less awareness.  They further stated that the tighter the control the more hypos that occur, and also the lower the A1C the more unawareness.  The more hypos a child has the more unawareness exists.  Great! What do I do now?

So I kept searching...

The second study I read was also published in Diabetes Care  in 2009 titled, "Blunted Counterregulatory Hormone Responses to Hypoglycemia in Young Children and Adolescents With Well-Controlled Type 1 Diabetes" Sounds just as discouraging!  This study took 14 kids (3-18 yrs with 3 kids less then 8) Put them in a controlled in-patient setting on insulin pump therapy to induce a progressive drop in blood glucose in order to measure the counter regulatory response to low blood glucose levels. Interesting! So what did they discover? They found that four young children and 4 adolescent children never had an epinephrine response with a glucose < 4 mmol. Those that had an epinephrine response, it didn't occur until the blood glucose level dropped below 3.3 mmol (for US multiply the mmol value by 18) Scary, but information is, what it is. 

It answered my question; why my kid doesn't feel her lows.  When she drops and doesn't wake,  it is because her body's "Flight or Fight" system doesn't kick in, and no adrenaline is released. In other words;  no sweating, or automatic wake up "jolt" out of bed.  The scary thing for us is, does this ever subside, or will it go away as she gets older. That, I guess will be my next research question.
Will my little girl ever feel her lows?

Trev

If you have any information or feedback regarding Hypoglycemic unawareness please comment, I appreciate all feedback.  Thank-you.

DIABETES RESEARCH IN CHILDREN, NETWORK (DIRECNET) STUDY GROUP*(2009). Impaired Awareness of Hypoglycemia in a Population Based Sample of Children and Adolescents with Type One Diabetes.  Diabetes Care 32: 1954-1959.

TRANG T. LY, MBBS, PATRICIA H. GALLEGO, MD, MSC, ELIZABETH A. DAVIS, FRACP, TIMOTHY W. JONES, FRACP, MD

(2009). Blunted Counterregulatory Hormone Responses to Hypoglycemia in Young Children and Adolescents With Well-Controlled Type 1 Diabetes. Diabetes Care 32: 1802-1806

It's Never Good To Be Unaware

To be unaware, in general,  is usually not a good thing but with Diabetes it can be out right life threatening.

Hypoglycemic unawareness is a frightening reality for some of us with Diabetes.

It is usually a complication brought on by long term damage to the nervous system from many years of diabetes, usually poorly controlled diabetes. 

I say usually because I have discovered it can also happen in children diagnosed with type 1 diabetes that are under the typical onset age of 7-9.  

We have a daughter who was Dx at 18 months, she is now 6.  She has never been able to tell us or recognize when she is having a low glucose.  

In the beginning this was expected, but now we are hoping even praying that soon she will show some insight when she is hypoglycemic.

We have searched for answers, especially in the beginning.  The explanations from the literature and the health team was that her nervous system was immature and in time she would eventually feel and display the signs (sweating, shaking, mood change) and symptoms (anxious, headache) 

We're still waiting.....

In the mean time we do what is essential to keep her safe. We advocated for a pump, we test multiple times, and we lose a lot of sleep.  

So, if you have a child with Hypoglycemic unawareness, we understand. Here are some suggestions below.

Treatment options are: 

-Peak-less insulin

-Continuous Glucose Sensors(these are expensive and the needle is huge!) 

-Insulin Pump therapy

-Frequent testing to ensure glucose is safe throughout the night. 

-Ensure the last rapid insulin bolus is no later then 8 PM.

So, if you have a child with Hypoglycemic Unawareness, we understand, hang in there, and unfortunately it's up to us to have the awareness, perseverance and diligence until our child's system develops.

Trev