I left bright and early this morning to take the continuous glucose monitor to City so that they could figure out how to fix Daughter’s blood sugar problems. I had a call a little while ago from the dietician at the diabetes clinic. The good news is that I have been vindicated. The endo doesn’t want to make any changes in insulin, because over all her blood sugars are good. In other words, I hadn’t messed up her insulin, as the endo accused me of after the night I took her to the emergency room. The other bit of good news is that she had a severe low while she was on the monitor that didn’t respond the way it should have to glucose tablets.
So what is the bad news? We don’t have answers as to cause or cure, or even a plan for further testing. They tried to tell me that I hadn’t given her the right kind of protein for breakfast that day. The low fat sausage she had for breakfast probably had too much fat and not enough protein. I pointed out that she had the same breakfast she has every morning of the week. If the problem were the breakfast, she’d go low other days, too. They wondered if maybe she’d been exercising or had extra activity. The day was just like any other day except that her blood sugar dropped to 35 and didn’t respond well to treatment.
They also thought she had “worn out” the glucose tabs and suggested that I try giving her honey instead. Let me explain why I give her glucose tabs. She can carry them with her in a little tube. They’re very portable. She’ll eat them, but she doesn’t particularly like them, meaning that she isn’t tempted to eat them when she’s not low. There are a number of other things she could use, but she likes those other things, and there is a high probability that when she had a low she would find that she had eaten them all and she wouldn’t have anything to treat the low.
So what did we learn from the monitor? We learned that Daughter has unpredictable, serious lows that don’t respond well to treatment. At least I have been vindicated on that front. What are we doing about it? I’m supposed to experiment to see if honey, glucose gel or cake gel is more effective for her. Why is she having the lows? No idea. Daughter and I seem to be the only ones who are worried about what is causing them. I asked again about the possibility that this related to one of her other medications. Again I was ignored.
Tomorrow morning we go see her family doctor. I hope Dr. K will be a bit more helpful, or will refer us to a different endo. One of my concerns is that each time Daughter has one of these lows, her blood sugar is lower before she recognizes it. I’m concerned that she is developing hypoglycemia unawareness, which can be very dangerous.
4 comments:
First, how long has she had T1DM?
Longevity to Type 1 Diabetes can interfere with the Neurotransmitters(Epinephrine and Norepinepherine) that are able to detect Hypoglycemia in time so as to avert seizures and coma in a person such as your daughter.
Honey or cola/glucose gel is fast acting and does not have to be chewed compared to glucose tablets.
Is there a time pattern involved with the Hypoglycemia that your daughter is experiencing.
A lowering of your daughter's Basal Insulin(Lantus or levemir) would be advisable as would more frequent testing of her blood sugars.
You definitely need a new and more intelligent Endocrinologist who is more familiar with T1DM as well as having a passion/interest in the Disease.
A higher protein intake would keep her blood sugars more stabilized unless she is involved with athletics where an increase in carbohydrates would be beneficial, or there is a Kidney problem.
bettercell,
She was diagnosed in July of 2000 (we came back from vacation and went straight to the hospital). One of the things that concerned me was that this last low was in the morning, and the other severe ones have been afternoon/early evening. I have been trying to convince the endo for years she needed less insulin at lunch time, but she has insisted she needs the same insulin to carb ration all day long. (An issue because she writes the orders for her care at the sheltered workshop, which deals with lunch insulin). I am going to look for glucose gel tomorrow.
I had already lowered her lantus (which the endo was very unhappy about-- until she saw the results of the CGM).
I have also reduced her novolog. The endo thinks the low fat sausage was too high in fat and too low in protein, and I should give her cheese instead. I read labels tonight, and the sausage actually has more protein and less fat than cheese.
I'm hoping for a referral to a new endo when we see her family doctor tomorrow. One of the challenges is that it is very hard to find doctors willing to take her on as a patient, since in addition to my insurance she has medicaid.
I'm taking some information I've found with us tomorrow, and hope her doctor will at least order some testing. Thanks for your advice-- I've been hungry for information and advice on this.
Peace,
RM
Reverend Mom.....
First, your daughter DOES NOT need that same Insulin to carb ratio throughout the day. In a 24hr. period, your daughter may be more active (exercise) which definitely would mean LESS Insulin. Hormones also effect Glucose values as does stress in addition to exercise.
If she is/had experienced Hypoglycemia in the morning, was it before or after breakfast?
If it was before, than her Basal Insulin is too high. If it was after breakfast, then her short-acting Insulin was too high for the amount of carbohydrates she had eaten.
Cheese does have a high fat content.
Many Physicians unfortunately are not very knowledgeable about nutrition. Wearing a long white Lab Coat does not mean the person is Intelligent, Kind, Compassionate, Communicative and Knowledgeable.
In the end, you and your Daughter are your best Doctors!!
Find an Endocrinologist who cares about your Daughter and is informed/experienced with T1DM.
I am in NYC so I have more to choose from, but I have been educating myself about T1DM since I was 5 years of age.
bettercell,
Thanks again for sharing your wisdom.
I have learned a great deal about diabetes at childrenwithdiabetes.com Because of what I have learned there, I've been frustrated for some time with Daughter's endo. But she was the only pediatric endo within about 100 miles.
Her low on Tuesday was about 3 hours after breakfast. Usually she goes low about 3 hours after lunch. For months I have been under reporting the carbs in Daughter's lunches so that they would give her less insulin at the workshop. The other day, her blood sugar dropped into the 90's in the afternoon, so they fed her 3 packages of crackers (420 extra calories) trying to get her blood sugar up so it would be safe for her to ride the bus. They feed her anytime her blood sugar is below 120 in the afternoon. I keep telling them that Daughter recognizes her lows and will test and treat if she needs to on the bus, but they don't think it's safe. Poor Daughter desperately wants to lose weight, but it's a challenge with all the lows she's been having.
I really think she needs to go on the pump. I know it will be a great deal of work, and that most of it will fall on me. But I think it would be worth it in the long run. We have a difficult time matching insulin to food. When she is below 130 or so, she takes her insulin after she eats. If she takes it right before she eats, the insulin gets ahead of the food and she has a low right after eating (yes, I've wondered about gastroparesis).
I hope this new endo will be a good match, but fear we may need to go 100 miles to find a clinic that will meet all her needs.
Peace.
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