Blood Sugar Levels
Discussion Topic
Q. I have a question about low blood sugars and about not relying on them as an indicator of crisis. Hypoglycemia is not an indicator in all crisis situations. This is very important. I think this is a point that needs to be emphasized. Can someone elaborate on this?
The take home message from the Orlando Conference (Oct 2002) about low blood sugars was that for a long time, all FODs have been lumped together in a category of “hypoketotic hypoglycemia” – low ketones (or no ketones) and low blood sugar. Dr Roe, Dr Korson, Dr Rinaldo, Dr Winter, and the other speakers, all clarified that as we learn more about FODs, of which there are now 18 known, we are seeing different characteristics in each. Some, like MCAD and one type of VLCAD, are prone to low blood sugars…some are not. Also, in children who have had experiences with low blood sugar in the past, that may be their main red flag. And, infants and younger children tend to have more frequent low blood sugars than older children. HOWEVER, especially in children who are recognized and being treated, their symptoms may include lethargy, some other type of altered behavior etc., as they build up the toxic fatty acids during an acute illness or prolonged fast. You need to speak with your Drs to clarify what they feel is the most important concern for you and your child, based on their diagnosis and responses during illnesses.
Low Blood sugar is a very important symptom for some FODs. Normal blood sugar is 70-120, it might normally peak slightly higher after a meal, until Insulin is released and drives sugar into our cells to make energy. Infants are very prone to low blood sugar for several reasons, the biggest being they don’t have good stores of Glycogen, the body’s way of saving sugar for later use. Most Metabolic Specialists protect Infants with FODs from low blood sugar by having them eat every 4-6 hours. As we get older, develop more Glycogen and some other hormonal things change, we become less likely to experience low blood sugars…but in children with certain FODs it is still possible. So, in the older children, raw Cornstarch is used to provide a very slow release of sugar over a long period of time, 6-8 hours. This is why yesterday, I wrote that “under treatment” even those children with FODs that are associated with low blood sugars, usually do not experience low blood sugars. For sure, the only way to monitor for low blood sugar accurately, if that is something your Dr wants monitored, is to check it after 6 hours of fasting. If you check a blood sugar while Cornstarch is still being absorbed or after you have given your child something to eat or drink – the blood sugar will appear normal even if it wasn’t and then your Metabolic Specialist has no way of knowing how best to treat your child.
Lynne A. Wolfe, MS, PNP, BC
Metabolic NP
Q. What is the normal blood sugar range for a child? Does it differ from an adult? My daughter’s was around 50 the last hospital trip. Our doctor also recommended to give corn syrup (in a crisis) to bring her blood sugar level up on the way to the hospital.
Q. What blood sugar level is considered to warrant a trip to the hospital? We do not test our son’s sugar. Should we?
My daughter has MCAD and has had problems with blood sugar during episodes. We only check her blood sugar if she has not been able to keep food down. The doctor told us to call if the blood sugar gets below 60. We do not go by blood sugar alone though. We watch for lethargy and vomiting. She has had an episode where we recorded her blood sugar at 39 and the doctor recorded it at 79. We thought we had made a mistake since we don’t check her blood sugar very often. He told us that “it could have been her body’s attempt to dump all remaining sugar into her system.” If we had ignored other signs and checked the blood sugar a little later, the “right number” could have delayed a necessary trip to the hospital. We do not check her blood sugar on a regular basis. We obtained our “glucometer” during a hospital visit. Insurance covered the cost.
Melanie
MCAD mom
We tend to rely on other factors such as time elapsed since last eating and behaviour for our son who has LCHAD. Irritability would be a sign that it was time to eat although this would apply I think to most children. We were also told that BS was not a reliable indicator on its own. It appears that there is no substitute for a parent’s experience and intuition about their child. This is why so many of us end up frustrated following emergency admissions when we know our child needs a tube or a line NOW (and not in 2 hours when they have been seen by a series of professionals).
Jon
LCHAD Dad
My son’s blood sugar runs between 50 and 80 daily. It’s an abnormal day when his sugars are above 80. Today his high was 67 and the doctors don’t seem too concerned. We keep it up with cornstarch during the night since it’s a complex carb. We pay more attention to his behavior with the count than just the count alone. This doesn’t make me happy, but that’s what we’ve been told to do. Our other son has low carnitine and low blood sugar. We have been working through the diagnosis stage since Feb. We still don’t know what is really wrong with him. They say he has some type of mitochondrial/metabolic disease, but that’s about all they say. I want to add that corn starch may help…3 Tbsp. for a 27 pound child will maintain blood sugar for about 4 hours.
Debbie
Undiagnosed FOD mom
I don’t test our daughter’s blood sugar. In the past, she has had episodes where she was sick from her fatty acid levels being elevated without having a really low blood sugar, so I do not count on that to be an indication that she is getting into trouble. I watch for other signs of her progressing into “dangerous territory,” which for her include muscle pain. She also gets a strange odor, which I’ve discussed here in the past, and which her doctor believes is her body making “abnormal” ketones. I think every case is different.
Dawn
VLCAD mom
My son has MCAD and we were specifically told “metabolic crisis can occur with or without hypoglycemia present.” For us, we don’t check blood sugar. We’re told to watch the clock and get him in. When he is sick, I keep a log of what he eats, what time he ate it, and if I have a question about whether or not to bring him in to the hospital, I call the endocrinologist on call (24 hours/day) and ask his/her opinion. Then again, we live within a half hour of our choice of hospitals.
Wendy
MCAD mom
I wanted to let everyone who doesn’t know about it that there is something called “Insta-Glucose” that I order from our local Wal-mart pharmacy. My daughter’s endo doctor gave it to me for when she is not keeping anything down or doesn’t want to eat. It really helps because it is a gel and is absorbed through the tongue and cheeks so they don’t have to swallow it! This is really useful for her because her sugar can drop 20 points or more in 30 minutes and we have to drive 30 minutes to the hospital. Also, there have been times that they haven’t been able to get an IV in so we give it to her. (It is very sticky though.)
Joy
VLCAD mom
Nicholas was diagnosed with SCAD at 3 weeks old. He was going to be discharged from the NICU today, and then he got sick for the first time. He was very lethargic (he is usually very alert), had diarrhea and excessive urination. They started a glucose IV immediately, and he is doing better now. When they tested his blood sugar before they started the IV, it was at 326!!! The doctors say that they don’t know why that is, considering that SCAD kids are supposed to be hypoglycemic. Has anyone had a similar experience?
Jackie and Mike
SCAD parents
I’m not really sure on this one but I think I remember reading something about “dumping” ~ it’s the body’s last ditch effort to use the glucose available and it “dumps” it into the blood stream causing a misleadingly high reading. I don’t know that I’ve ever heard of one that high though.
Mary Beth
MCAD mom
You said that you know when Anna is not going to turn around and will need IV glucose. What are the indicators for you? Is it basically the lethargy or inability to get the blood sugar up? We have only had a handful of low blood sugars since Johnny was diagnosed and always kept him at home but needed continuous feeding (every 2 hours). At those times, his blood sugars had dropped to the 50’s and we had to do the continuous feeding for 10 days to 2 weeks to keep them up. Poor Johnny would drink and eat what we gave him but he would get so full and bloated. We would try glucose tablets but with all the medicine he’s tolerated taking over the years, he says “those are garbage, put them in the garbage.” Since diagnosis, he has only been hospitalized this past February with a low blood sugar and elevated ammonia. That time his blood sugar went from 52 to 46 to 36 with lots of juice and food trying to bring it up. We knew then he needed the glucose but I’m wondering if the other times we might have shortened the time needed for the continuous feeding. With Johnny, it has always been that once the blood sugar drops, it takes a long time to replenish. I’m not sure why. You’d think once the blood sugar got back up that it would stay up but not so with him.
Sue
MCAD mom
Anna does not have a feeding tube. When she gets sick or when she has vomited, we watch her closely. It is easier now that she is older and we can reason with her. If she presents with lethargy, she goes to the doctor or ER. We check the blood sugar, but we don’t use it as a sole indicator. If she has vomited and not eaten well (with no signs of lethargy), we start checking her blood sugar every hour. We also encourage her to drink water and eat Froot Loops (her sugary cereal of choice). She understands at this point that she has to have her finger stuck and she has to try to eat. If her sugars drop below seventy, we prepare to go to the doctor. If they reach 60 we go.
Anna’s episodes usually involve low blood sugar and eventually lethargy. Monitoring blood sugar is the “easy” part. Learning to read signs of lethargy has been a little harder. We have gone to the doctor and decided every thing was going to be all right. There are times, though, that we can tell that she needs to go to the hospital. Anna, as well as we, calls it going to get pumped up. We felt this was a fairly non-scary description for her, her siblings, and friends. Her hospital stays are usually just over night with IVs. Her first episode was before diagnosis. She was in the hospital for three days with just the glucose IV.
The IV carnitine makes a difference (in addition to the IV Glucose). “Reading” lethargy – this is hard to explain. Anna will become tired and slow to respond verbal commands. Her eyes will be “sleepy.” She eventually will not respond and her eyes will not focus on anything. Then she “sleeps.” Since her diagnosis, she has not had a blood sugar below 39, which still isn’t good, but it is better than 12. Diagnosis is the key. We know to watch our child now. That first stomach virus kept us from going to the doctor when we should have. We were probably 24 hours gone too long. My non-MCAD child had been sick and slept a lot. I thought Anna was doing the same. Little did we know she was lethargic and semi-conscious. I wish we could get all doctors to learn about these symptoms and disorders.
Melanie
MCAD mom
Johnny also gets lower blood sugars with exertion and especially heat and not usually with illness unless his food intake has been drastically decreased. He seems to make it through the night now okay with the cornstarch before bed. When he was younger, I kept a sippy cup (Tupperware used to have great ones) by his bed with juice. Even now, because he has to have his meds every 8 hours, he gets juice with his meds at 10:15 PM and 6:45 AM. I stretch the night dose an extra half hour just so we can get a little more sleep. Have to really watch those teeth doing that, though.
We just had an interesting thing happen with the blood sugars. His aide got blood sugars in the lower 70’s and so increased his food intake at school. That night, Johnny’s food intake increased by two to three times the normal amount with blood sugars staying in the 70’s and 80’s. This happened for the next two days and then everything returned to normal. While he was doing the mass consumption we were watching for symptoms of some illness but it wasn’t until the fourth day that he finally came down with a wicked cold. I know that they say it takes three to five days after contact to come down with a cold so I figured that somehow his body was telling him to get ready.
Sue
MCAD mom