I'm trying to kill time while I wait for the next BG check, which is still 30 minutes away, and trying to avoid falling asleep. This isn't a good combination for me...I'm convinced there is only so much I can spend on buying yarn off eBay before my husband loses it and murders me! So, here I am, blogging instead. A really good thing, since I've had something on my mind for a while now and have been meaning to put it out there and ask for help from all you other d-moms out there!
We had Lily's one-year anniversary checkup with the endocrinologist. It just happened to come at the end of a week that we'd spent connecting with some other d-families with toddlers/preschoolers with diabetes. During these d-play-dates, I voiced a frustration I've been having for quite some time now. The numbers are all wrong. Every last one of them. To be more specific, the recommendations just aren't meant to accommodate a pint-sized diabetic! Here are the main recommendations that I'm talking about:
1. Treat a low blood sugar with 15 grams of carbohydrates.
2. Return to the doctor in 3 months for a checkup.
My problems with these two recommendations....Lily can be 50 and if I give her 15 grams of carbohydrates and retest her in an hour, she'll have rocketed straight to 500! It's nuts! And it's awful. For those of you who don't understand what it feels like to have that happen to your body, that large of a jump in either direction will bring on horrible headaches. Think somewhere along the lines of a brain-freeze that just won't go away. Not fun, not good for my tiny, little girl!
Second recommendation....in the last three months, Lily had shot up another inch and she has lost 2 lbs. The weight loss is from all the running she's been doing, I know, but when you only weigh 30 lbs to begin with, a 2 lb loss can be pretty alarming. This is how the three months goes for us though. Just after leaving the doctor's office, we have a good week of adjusting to the changes. After that week, we maybe get a few weeks of just coasting along happily. In four weeks, we're probably battling numbers again because she's leading into a new growth spurt, which brings on lots of lows. Five weeks post-doctor, she's in the midst of a huge growth spurt. Six or seven weeks after, she's done with the growth spurt and her insulin regimen needs to be changed to accommodate the growth she's just done. Week 8, she's battling a bug or something and everything has gone to hell. Do I need to continue? In three months, so much has changed! She's like a whole new kid and her insulin needs are completely different. If you want to keep up with a pint-sized diabetic, you need to see the diabetic more often than just every three months!
So Lily's appointment with the diabetes educator was on Friday (her doctor is almost always booked 4 months in advance-another frustration). Her hemoglobin A1C was 8.6. Awesome! Much better than the 9.8 last time! Great! But, that doesn't make my frustrations go away. The numbers really are all wrong for this size of diabetic. Being diabetic myself, I know I have a bit more knowledge than others and I'm perfectly aware that what works for one diabetic, doesn't work for another. Diabetes is different in each person. But, the educators and doctors don't make that clear enough for newly diagnosed diabetics and their families. And most of all, they really don't make that clear for pint-sized diabetics and their families! The numbers need to change. It used to be that the typical age of diagnosis was 9, 10, 11 years-old. Doctors are seeing more and more children who are infants, toddlers, and preschoolers when they are diagnosed. If this is occurring more often, don't you think that they should come up with new recommendations for the pint-sized? Instead of telling families to give 15 grams of carbohydrates, why not tell them to start with 10? Instead of telling them to bring their child back in three months, why not make it two months? Things need to change!
Where can you help with this? Here's what I'm asking of all of you out there who agree with me. Mention it to your doctor. Let them hear your frustrations about the recommendations not accommodating your child. As more and more small children are diagnosed, someone needs to take notice and realize that the endocrinology community needs to come up with new recommendations for this age-group. The only way for them to start doing that is for all of us to mention our frustrations with the numbers, the lack of accommodation, and let them know that we're not happy with it. Maybe one of our doctors will wise up and start the ball rolling to get some new recommendations out there for our pint-sized children with diabetes!
Okay, time to test again so I can hopefully head to bed! Night all!
I am sooooooooooo with you on this one. Do you know what 15g of carbs will do to a 12 month old's blood sugar? My husband and I had to pretty much take everything they taught us and re-invent the wheel. I had never given much thought to going to the doc more often, but it does make sense.
ReplyDeleteSounds like you and I are up late for the exact same reasons!
Cindy, I.HEAR.YOU. I learned this exact thing with treating the Joe's lows when he was 3,4 and his early 5s. Here is what I did...I made a "sliding scale" (nurse talk - and yes I am a nut job).
ReplyDeleteIf Joe's blood sugar was 60 - 70, I would give 1 glucose tab (4grams). If his blood sugar was 50 to 50, I would give 2 glucose tabs (8 grams). If his blood sugar was less than 50, I would give 3 glucose tabs (12 grams).
Here is my thought process on the whole thing. I feel that, nope, let's change my statement to I KNOW that these young children are EXTREMELY "insulin sensitive" and I believe they are equally "GLUCOSE SENSITIVE" too. Once Joe hit his mid-fives he tended to "act" more like a "normal" diabetic and I treated lows more according to the rule of 15s.
Also, on the whole growing, sick, number roller coaster, insulin tweaking loopty-loops that you are enduring - YEP, that is how it is and NOPE no one really let's you know that you are in for a WILD RIDE BABY! I can say from experience that it does tend to sugar out. I saw longer periods of better numbers in Joe's 5s...6s...and now 7s, but we still see some doozys.
Have a great Sunday Cindy and I hope you got some rest last night after the blood sugar check.
tell me about it, you are definitely preaching to the choir here...I find myself so utterly frustrated that I no longer call the endo's office and talk to a nurse, I just call the endo herself whom was nice enough to give me her number. She somehow gets it. She's younger, but seems really wise about how things are "these days". She knows that her young patients are different and doesn't deny that and she also knows a lot about the stress that we're undergoing as she's pretty hands on and volunteers at a great deal of the camps around here. I am beyond thankful for that.
ReplyDeleteI know she's surprised at how quickly I figured out that 1 carb brought Isaac up by 12 pts, and that 1 unit brings him down by 280 if he's above 300, but if he's lower than 300 1 unit will bring him down by 350 or more. I tell her it's not by luck, but by hours and hours of studying numbers and not sleeping. By the fear of another hypoglycemic seizure you figure it out. By the fact that NOBODY else is going to do it for your child you must figure it all out yourself.
I'm exhausted and yes, I wish it were more straightforward...more "controlled" or "stable" as the imbeciles I know say. But well life with d just isn't. So, instead I grab another cup of coffee and keep chugging along...thankful to know that you and others are with me, that I am truly not all alone, even when I feel I am.
Enjoy your week and thanks for sharing this piece of honesty.