Vacation and our worst low ever

[MiaDad]

So just returned from a trip to the pacific northwest (currently living in Florida). We had a couple things happen I wanted to share and get feedback from all of you on:
First - Mia seemed MUCH more sensitive to insulin while out there. She was certainly playing with her cousins a lot, staying up later than normal, but she's pretty active at home as well. We found that we were giving a lot less insulin and actually ended up adjusting her insulin sensitivity on her MM pump to compensate for some of the lows she was having out there.
Second - When you travel and change time zones, how quickly do you change the time on the pump? We assumed that this would be the correct thing to do since the Basal rates applied are more matching to the cycle her body is in (sleep, morning, afternoon) than what the actual time is.
Third - The second night we were there was probably the most frightening experience I have ever had with diabetes since my little girls diagnosis almost two years ago. We had given her a correction bolus for a BG reading of 305 at 11:30 at night after she had been sleeping for a few hours. She started crying at about 12:00 and we noticed she had dipped to 72 - gave her 15 grams of juice - 15 minutes later, she woke up screaming and in a seizure. Uncontrollable full body convulsions. Checked her and the meter read 42 but she was obviously much lower. As she was conscious still (although screaming "Stop!" and convulsing) we gave her one of the tubes of glucose while holding her, then some juice, while holding her and trying not to panic and calm her down did our best to treat the low. The Glucogon was out and ready in case she passed out, but that didn't happen, and finally she came out of the seizure after 8 minutes (seemed more like 8 hours) and was talking to us telling us she wanted to go home and see our dogs. Poor girl was a pin cushion the rest of the trip as we certainly went about over checking her every time we had a suspicion of a low after that. This was our first experience with a low where she wasn't just crying - and it is something my wife and I both are incredibly freaked out about. Our endo had asked us on the appointment we had "so how often has she passed out since since last time?" and we were a little surprised and answered, "never."
How common is an episode like this? Should we have gone to a doctor afterwards although her blood glucose stabilized (and of course skyrocketed because we almost certainly over carb-ed her)? And could our meter perhaps have picked up something from us not more thoroughly cleaning her finger before checking her that would have caused a higher reading (some leftover blueberry or raspberry's that she was eating earlier?)

We never want to see our brave little girl in that situation again, and I'm just torn up over feeling like I somehow did that to her by giving her the correction. It's a week later and I still can't get her little voice screaming "stop!" out of my head.

[Jacque471]

First off, big hugs to all of you. That is scary and not something I hope we ever have to experience. It is possible that there was something on her finger that caused a higher reading. We have seen it happen but we are fortunate enough to also have a Dexcom CGM so if we get a reading that does not match up fairly close with the numbers it is giving us then we automatically recheck to make sure the meter is correct before correcting.

We actually had a high of about 300 last week while we were on vacation and within about 40 minutes he had dropped like a rock to about 60 and was still headed down with lots of IOB and we had to start carbing him up to prevent him from bottoming out. The Dex alerted us that he was dropping rapidly so we were able to react accordingly. I would never have thought to check at that point otherwise since the insulin hadn't really even kicked in yet (normally takes about 1 hour for us to really see any movement in his numbers)

I hope you never experience that again. I would say for a little while anyways I would be more likely to double check some readings that seem "off" just to be safe. I know I have done it. If I know my carb ratios and basals are right (or at least close!) then a weird high usually warrants a double check.

[Becky Stevens mom]

Pete I am so sorry Please dont blame yourself. I know thats easy for me to say, I do the same darn thing when Steven goes real high or low I think its my fault and I should be able to fix it. We can only do the best that we can with the tools that we have to work with right now.

It sounds to me like this was a delayed hypo, that can happen when the kids are very active during the day. It also sounds like Mia's blood sugar was dropping very quickly bringing on the seizure. Some kids tend to have more of a reaction to severe lows then others.

Have you and your wife thought about a CGMS for Mia? Some of the parents in here of young CWD do have CGMS for their kids and would be happy to advise you about that if your interested. Did the endo suggest that you keep Mia a little on the high side for awhile until her liver gets back its stores of glucose? If your concerned about lows at night people have had some good success with giving raw cornstarch in some milk or mixed with yogurt at night. The cornstarch breaks down and digests very slowly.

[Sarah Maddie's Mom]

I'm so sorry you had such a frightening low.

Here's a link to a thread that discussed the effect of elevation on bgs. As you can see some folks run higher, others lower... a real YDMV situation.
http://forums.childrenwithdiabetes.c...light=altitude

As far as how common these terrible lows are, it really depends of the child and you endo, like ours, may just be somewhat insensitive to the emotional impact of these lows and asks about them without appreciating how distressing it is for us. That said, we are almost 8 years in and we haven't had any seizures ... to date.

[MiaDad]

Originally Posted by Becky Stevens mom

Have you and your wife thought about a CGMS for Mia? Some of the parents in here of young CWD do have CGMS for their kids and would be happy to advise you about that if your interested.

Originally Posted by Jacque471

We have seen it happen but we are fortunate enough to also have a Dexcom CGM so if we get a reading that does not match up fairly close with the numbers it is giving us then we automatically recheck to make sure the meter is correct before correcting.

Thank you both for the replies - you both mentioned CGM's, and it's something we've thought about a lot - I'll probably repost as a new subject but I'm at a loss as to where we could possibly place the CGM on her - Mia doesn't have much 'real-estate' to work with, so we're limited to the upper buttocks in placing the pump's infusion set. The thing is though, both my wife and I have been talking about how a CGM could have prevented that episode entirely. Not to mention how much it could help us gage where our basal's should be set at.

I can't tell you how much I appreciate the responses - I was dying to get back to a reliable internet connection all week so I could post here - we were out with my family who has no experience with T1, so while their feedback was well-intentioned, it just doesn't compare to feedback from those who are battling the same demons we are.

[Jacque471]

Originally Posted by MiaDad

Thank you both for the replies - you both mentioned CGM's, and it's something we've thought about a lot - I'll probably repost as a new subject but I'm at a loss as to where we could possibly place the CGM on her - Mia doesn't have much 'real-estate' to work with, so we're limited to the upper buttocks in placing the pump's infusion set. .

Logan started the Dex when he was 2 1/2 so about 4 months after diagnosis. We were on MDI and wanted Dex but were not ready to pump yet. When we started we used his upper butt for his sensors. When we started pumping about 6 months ago we tried keeping both on his behind but it was not allowing enough time for healing, so we changed his sensors to the back of his arm and the readings have been even better using his arms.

[wilf]

A couple of things:

1) We find DD is much more insulin sensitive at night than during the day, so if we correct at night we only give 1/2 the normal amount and we correct to the top end of her range (during the day I aim for the middle).

2) It is always a good idea before giving a correction to confirm a high BG reading with a second test (having made sure finger is clean). The fact that she was at 72 1/2 hour after the correction suggests that the first 305 reading was incorrect, as the correction would barely have had time to start working at that point.

3) If it were me, I'd have probably given glucagon when the 72 was measured since she was dropping like a stone and the insulin from the correction was almost all still on board and really just starting to kick in.

4) Don't beat yourself up too much about this. D management is hard, and there is learning to be had every single day. We are all trying our best to replicate the function of an organ whose function we can't hope to match - some days it goes better, some not so good. The thing is to keep trying, keep looking for learning opportunities, keep looking for patterns in the numbers, and keep refining your techniques.

You're good parents. Learn what you can from this and move on..

[BrokenPancreas]

Originally Posted by MiaDad

So just returned from a trip to the pacific northwest (currently living in Florida). We had a couple things happen I wanted to share and get feedback from all of you on:
First - Mia seemed MUCH more sensitive to insulin while out there. She was certainly playing with her cousins a lot, staying up later than normal, but she's pretty active at home as well. We found that we were giving a lot less insulin and actually ended up adjusting her insulin sensitivity on her MM pump to compensate for some of the lows she was having out there.
Second - When you travel and change time zones, how quickly do you change the time on the pump? We assumed that this would be the correct thing to do since the Basal rates applied are more matching to the cycle her body is in (sleep, morning, afternoon) than what the actual time is.
Third - The second night we were there was probably the most frightening experience I have ever had with diabetes since my little girls diagnosis almost two years ago. We had given her a correction bolus for a BG reading of 305 at 11:30 at night after she had been sleeping for a few hours. She started crying at about 12:00 and we noticed she had dipped to 72 - gave her 15 grams of juice - 15 minutes later, she woke up screaming and in a seizure. Uncontrollable full body convulsions. Checked her and the meter read 42 but she was obviously much lower. As she was conscious still (although screaming "Stop!" and convulsing) we gave her one of the tubes of glucose while holding her, then some juice, while holding her and trying not to panic and calm her down did our best to treat the low. The Glucogon was out and ready in case she passed out, but that didn't happen, and finally she came out of the seizure after 8 minutes (seemed more like 8 hours) and was talking to us telling us she wanted to go home and see our dogs. Poor girl was a pin cushion the rest of the trip as we certainly went about over checking her every time we had a suspicion of a low after that. This was our first experience with a low where she wasn't just crying - and it is something my wife and I both are incredibly freaked out about. Our endo had asked us on the appointment we had "so how often has she passed out since since last time?" and we were a little surprised and answered, "never."
How common is an episode like this? Should we have gone to a doctor afterwards although her blood glucose stabilized (and of course skyrocketed because we almost certainly over carb-ed her)? And could our meter perhaps have picked up something from us not more thoroughly cleaning her finger before checking her that would have caused a higher reading (some leftover blueberry or raspberry's that she was eating earlier?)

We never want to see our brave little girl in that situation again, and I'm just torn up over feeling like I somehow did that to her by giving her the correction. It's a week later and I still can't get her little voice screaming "stop!" out of my head.

I'm sooo sorry for you, my worst nightmare.
Question for you and others... if she didn't pass out, was it absolutely a seizure?
I also agree with Wilf on giving half the amount at night, may I ask how much correction you gaver her?

Regarding going to the Doctor?
I saw it wouldn't hurt..
I would bring in her in and just for your own sanity, have your ped check her over.

[zapsmom]

((((HUGE HUGS))) My DD, Zoee has had seizures like what your DD had as well. She has never pass out from them. I have found that after she comes around and her sugars come back up, she gets very sleepy and will sleep for several hours after these type of seizures. We have never taken her to the dr after but have call our on call endo while it is going on or after they have happen. I am always shaken up by them for a long time after as well. Again, ((((HUGE HUGS))) to you and your little.

[momof2here]

Originally Posted by wilf

A couple of things:


If it were me, I'd h3) ave probably given glucagon when the 72 was measured since she was dropping like a stone and the insulin from the correction was almost all still on board and really just starting to kick in.

First, to the OP - this was a very scary time and I am so sorry that you all had to deal with it. Thank you for letting us know about it so that we can learn from the situation as well.

I am curious - Wilf - you would have given Glucagon at the 72 with most of the IOB? Considering that she was likely NOT at that number (over 300) to begin with, is there any other way? My gut reaction would have been to give him massive amounts of glucose tabs or gel but not glucagon when he is not passed out. Am I wrong, would that not have worked? Thanks for the advise...