Sunday, March 20, 2011

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.



Wendy said...

I am always shaken. It doesn't matter how long we've played this many lows we've treated...or how healthy and happy she appears most of the time. These silent lows and the "what ifs" combined with the immaculate timing that never ceases to amaze shakes me to my core and leaves me profoundly shocked every. single. time.

So glad you guys picked her up when you did. So very, very, very glad.

LIVER? HELLO??????? Someone fire that dude or write him up. Seriously. WTH?

Fiona said...

We have the same problem here too. Mister 4 has been dx for over 2 years and still doesn't feel most of his lows. Some lows have symptoms, some do not. Lowest we've had is 0.9mm/L and he only showed signs of being hungry. That and running around like a nutter. Scary stuff.
And in Australia we only have the option of Medtronic CGM (and it's not covered by insurance), the dex isn't even over here.
I'd love it if he could be more aware. Then maybe I could rest a bit easier.
Hang in there and know you're not alone. :)

Erin said...

That is so scary, and I feel so much for your family and your little one! I don't have kids yet, but I can only imagine how scary that is! Also, I don't have any advice to give (sorry), but I do want to say that I will be sending lots of prayers up for you guys too, that your daughter will start to be able to feel those lows!

Shirley-Anne Parsons said...

Trev - that sounds like it sure was a close call and enough to make parents sick with worry. Nicholas has also been this low, in fact he's registered below 1.0 or 'Lo' .... it only happened a couple of times but both w/out visible symptoms like your daughter. Nic wears the sensor occasionally but I've yet to have to 'buy' them as we got a free pak of 10 when we got the transmitter 1 yr. ago. You can call Medtronic and ask for a free box (of 4) ... I called them to complain about one of Nic's sensors pulling out and they sent me 2 replacements w/no questions asked .... explain your situation and tell them you want to 'try out the sensor' ... also your endo can write a letter requesting the need for sensors and then they may be covered under your extended medical is deemed 'medically necessary'. Does your daughter have the Veo pump with the auto-low shut off? If not, you can upgrade within the warranty ($1500 which some insurance co's will cover) or out of warranty thru insurance ... does Alberta cover pumps for kids like BC does? Good luck!

Sarah said...

Hey Trev-we use the medtronic CGM and Isaac doesn't flinch, he says it's not painful at all...the only thing he ever really fights is the numbing cream so we stopped using it.
I am sorry you went through that low low with your daughter - somehow Isaac is usually pretty verbal or physically obvious when he's low...meaning he trips a lot and screams for food. But, actually what we were finding is that if we don't catch his lows quick enough he gets rebound highs. The nurses and doc didn't believe me that I thought he was going low because we were checking him every two hours, however once we used the CGM we proved that he was going into the 40's fast a few times a night and then rebounding to the upper 300's. Once we figured this out we were able to better tailor his basal rates and now we just use the CGM once a month for about a week to double check basal rates and I:C ratios. It's been an awesome tool for our family and my sanity.
As for the smaller CGM from medtronic it is definitely in the works and I was told that it should be out before the end of this fiscal year...which may mean nothing, but our rep is usually pretty accurate in his knowledge and doesn't try to get us excited about things too soon...such as the sensor and infusion site that MM is working on but due to FDA it's going to be a long time to get through.
Have a fab day :)

Reyna said...

So sorry about the low Trev. Joe used to have some wicked, wicked lows that he would not feel. It was like he was so caught up in the moment that his body didn't want to slow down to even acknowledge that he was low. AND...BGs in the 30s while he was asleep would scare the bejeezus outta me at night. What if I didn't check...what then? Anyway, I get it. I am sorry. I remember the Medtronic needle being a MoFo honker when we tried it out...AND...I hated the Guardian...too hard to calibrate. Dex is where it is at as far as I am concerned. Is it a cost thing? Have you trialed it? You can trial it for $300. That is what we did with Joe and then we applied to our insurance company to get it.

Love to your beautiful family Trev.

Michael Hoskins said...

What a scary situation, Trev. It's one thing for us to go through it, but totally different to see kids - especially our own, in your case - get hit by a Low. Totally unnerving. Very glad you were able to pick her up when you did.

Karen G said...

Oh my goodness, how scary. I use the MM sensors, and yes the are crazy big. I hope they do something about that soon - and for all of us, not just the U.S. I also hate that they are so expensive for you.