As most of you know, J was diagnosed at 8 months old. When he was diagnosed he was so fragile the doctor wanted us to keep him between 200 and 300 for the first couple years. After that we inched down to 150-250. I think it was when he was 6, when we got him his first insulin pump, that we moved to keeping him in the 100's, and then at age 10 when we tried hard for low 100's.
You have to remember that insulin back when J was diagnosed was archaic. We had to give him his dinner insulin two hours before dinner. He had a long acting insulin called Lente, and later another called Ultra Lente. Neither were supposed to peak...but both did with J. There was a lot to consider, and his safety came first. (L and B were put on pumps right away. They never knew the days of "keeping them in the 200's.")
Sooo...J has felt the repercussions of the "highs" since he could remember. I imagine he thought that is just the way he was always supposed to feel. I remember vividly having a conversation when he was in first grade...
"J, you are 400...don't you feel that you are high. Don't you feel awful?"
"No. I just feel normal, Mama. This is the way I always feel!" And he happily skipped away.
Highs never affected my sweet boy...that is, until now.
I don't know how he does it, and I don't even know if this is the reason behind it all...but J keeps his blood sugars in such good control, I doubt I could do it myself. He is for sure one lucky duck as he is in the throes of puberty and generally that wreaks havoc on blood sugars. I suspect the havoc is in our future...but for now he is doing a pretty darn good job. That aside...he now feels when he is high.
In fact if he is above 250, he feels downright miserable. There has been a couple times in the last few weeks where he refused to eat dinner because he was in the 200's and didn't feel right.
There has been a shift, and as much as I hate to see him miserable when those 200's come...I'm thankful for his newfound awareness.
Not only that, I am thankful for the insulin pump that makes it so easy for him to bolus. I am thankful for the tools that lie within it to make controlling blood sugars amid puberty hormonal tidal waves a bit less impossible.
I am thankful that my son feels his lows...and now feels his highs.
My knowledge of this disease evolves every day. What has become very clear to me is sensitivities change with time. L couldn't feel a low to save his life when he was 3. Now he does. Now he can sniff out a low a mile away. Nothing ever stays the same with diabetes. There is always hope for a better day.
There is always hope.
There is always uncertainty.
There is always something new around the corner.
There is always change.
And sometimes...whether it be hard work or just plain luck...that change is for the better.
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I am so amazed when I hear your stories of when J was dx'd. I can't imagine what it must have been like. It makes me wonder how different it will be for Elise when she is J's age.
ReplyDeleteWOW! What a long way to come. Thank you for sharing!
ReplyDeleteSame as Joanne - can't imagine! Was hard enough keeping a handle on T1 at 14 months, with all the modern tools! Very interesting about the highs/lows - I've often wondered how Luke (now 3) feels them, b/c he's often pretty cheerful at 400 or 40 - have wondered if that will change when he's older. Good to know it might.
ReplyDelete8 months! Wow! Where is your medal of valor?!
ReplyDeleteI have found that the more time I spend in range, the worse I feel when I am out of range. I guess that is a good thing! :)
Thanks for posting this! My baby girl, who is now 2, was also diagnosed at 8 months. I hope for a day when she feels her lows/highs!! :) Thanks as always for the beautiful writing.
ReplyDeleteI'm hoping Bean will start feeling her highs more. I know it's not healthy for her in the long run, and her behavior is really affected in the short term, so it would be to her benefit to not have those highs.
ReplyDeleteThanks for sharing...in our 18 months we've learned a lot, but reading stories from those doing it for years is so helpful!!
My daughter can't feel highs yet, I've always wondered why she can't. She can always feel the lows, so I'm grateful for that. So glad I found your blog, I love reading it.
ReplyDeleteyeah for better treatment! When my mother-in-law discusses how things were with TJ back in the late 80's I know we have a lot to be grateful for in terms of medical growths and technology. Both my guys with d here have a great aversion to anything above 200, and with both it's more in their 'tude than anything! I've even noticed that Isaac won't eat carbs when high, very interesting indeed as we've never restricted foods based on BG. Hope the holidays are off to a fantastic start for you and your fellas!
ReplyDeletethanks for this post. its a really changeable time for us watching R growing up, and changing its like relearning diabetes all the time. oh ok, this what D is like with a baby, D with a walker, D with a climber, oh and D with a 2 year old kid that RUNS and wont eat. I dont feel like Ive been doing this for 19months because its so sensitive and changeable like you said!!!
ReplyDeleteOh, those archaic insulin days... yea. I know how J feels. I spent many years out of range, actually running way too high with scary high double-digit A1c numbesr. And so when I was high, it just felt normal. When I went into the low 100s, it felt like I was dipping way low. But since I've been managing and staying in range, it's like Sara says and I feel those higher numbers more easily. But not matter what, I agree that you so deserve a medal of valor!
ReplyDeleteUgh, I remember those days when a high of 400 barely caused a single symptom. It was horrible because I never felt like I could trust my body (and it also meant that I actually felt low when I dipped below 200). Being on a pump and keeping my BGs in tighter range has definitely given me back the ability to feel my highs and lows. I have to pay attention, because at this point in my life I'm almost conditioned to ignore physical discomfort until it's too late. But the other day I actually felt a low of 64 and that was a great feeling. Now, I generally have "high" symptoms with anything above 210 or so...and that's good too because it results in my correcting things faster.
ReplyDelete