Question from Secane, Pennsylvania, USA:

For the past six months to a year, my two year old daughter had had approximately seven episodes that occur always upon waking in the morning and are always the same. She sleeps much later than usual (by about two to two and a half hours) and begins vomiting in her sleep (mostly dry heaving) for about 20 minutes without becoming completely alert. She then falls into a deep sleep that it is very difficult to rouse her from. I get scared by her listlessness and force her to wake up. Then, she is very thirsty, drinks 10 to 12 ounces of fluid (usually juice or lemonade) straight down, and the more she drinks, the better she seems to feel. After about an hour she acts like nothing was ever wrong other than the fact that she is a bit sleepy. When these episodes occur, there is nothing out of the ordinary at all, and when she goes to bed the night before she is fine. She has had no recent illnesses or infections of any kind. These episodes never happen two days in a row or even in the same week.

A month ago, she had an episode one month ago, and I called her doctor who told me to take her to the ER, but within 15 minutes, because she had been drinking, she was fine. I wrote it up as she must have been dehydrated and made sure to increase her fluid intake. Then when it happened again just two weeks later (these occurrences were usually a couple of months apart) I gave her some Pedialyte at home for the vomiting and took her to my local ER. In the ER waiting room, she had about five ounces of Sprite because she was still craving fluid.

When we went to see the doctor, he felt that she may have some type of reflux, but to be sure, he wanted to get a finger stick blood sugar because of my strong family history of diabetes — which was 365 mg/dl [20.3 mmol/L]. (Both of my parents, both of my maternal grandparents, and both of my paternal grandparents had diabetes, and I had gestational diabetes for three of my four pregnancies which required insulin when I was pregnant with her.)

The doctor then ordered some labs and found that her glucose in the lab was 288 mg/dl [16 mmol/L], she had acetone in her blood, and she had glucose and ketones in her urine. He came back in and told me that my daughter had diabetes and that she needed to be admitted. They transferred her to a nearby hospital with a pediatric unit, and when she got there, her finger stick was 105 mg/dl [5.8 mmol/L], and all she had was some IV fluid. She had nothing by mouth, and then, about two hour later, her glucose was 49 mg/dl [2.7 mmol/L] so they gave her a cup of ice cream and a cup of milk. Forty five minutes later, her sugar was 189 mg/dl [10.5 mmol/L]. Her A1c was 4.2% (which I know is good), and after the 189 mg/dl [10.5 mmol/L] she had not eaten anything else, and but glucose levels stabilized overnight.

The next morning they sent me home stating that she probably has cyclic vomiting and to follow up with her doctor after the weekend. I contacted her pediatrician who advised me to take her to the children’s hospital ER, so we did. There, her blood glucose was 69 mg/dl [3.8 mmol/L], but she had not been eating for a while when tested so they kept her over night to monitor her glucose.

A doctor at that hospital came in and explained that if my daughter has early onset diabetes, she may be in a honeymoon phase. She said that it is possible that she is having an insulin surge at night while she is sleeping which is causing her glucose to drop and for her to become ill. Anyway, her glucose was good all night so the next morning they sent us home and said that we should follow up with a five or six-hour glucose tolerance test (GTT) with our pediatrician. I had the GTT scheduled, but two days prior, she had another episode.

At 10:00 am, she still had not woken up even though her big sister was trying to wake her so I checked on her to find that she was very pale, clammy and sweaty. She was cool to the touch but sweating pretty badly even though it was not hot in the room. I also noticed that her breathing was strange. The best way I can describe it is that it was deeper but also faster than normal. I had my 13 year old get me the glucose meter so I could test her. and her glucose was 35 mg/dl [1.9 mmol/L]. I thought that could not be right so I tested again right away (neither stick even made her flinch in her sleep) and it was 30 mg/dl [1.7 mmol/L]. At at that point, I called to my oldest daughter to bring up a drink with sugar in it quickly. I woke her enough to drink, and I gave her about five ounces of chocolate milk and another five ounces of lemonade. By the time she got to her second drink, she was awake and alert. I dipsticked her diaper and found that she was spilling large ketones.

I called her doctor who advised to take her to the children’s hospital again where they decided to admit her again to monitor her glucose. This time they are thinking she has a chronic problem with hypoglycemia but are not sure why. She did not really eat anything at all there (a few bites here and there), and her sugars were always in the 70s mg/dl [3.9 mmol/L]. She continued to spill ketones until her second diaper the next day. She had two of those small powdered sugar donuts around lunch time, and an hour and a half later (nothing else by mouth) her glucose was 227 mg/dl [12.6 mmol/L].

They ran two stimulus tests: the cortisol results were good, and the arginine test results are not back yet. They said the next step is a formal fasting study, but before they make her fast for any period of time they want to be sure she does not have any metabolic disorders that would make a fast dangerous to her. For this they needed the results to the metabolic panel that is apparently run on all newborn babies as mandated by the state. They were unable to obtain the results so they drew the blood to run the panel again, but the results will not be in for three weeks. At that time I am to take her to be admitted again for the study. The endocrine team wants her sugar to drop so they can run some blood tests while her sugar is low to help determine what is causing her episodes of hypoglycemia.

When she was discharged, we were not told to monitor her glucose at all. However, I have done is designed a journal since I know you are wondering why I am asking a question of a diabetes team when it sounds like this is a hypo-, not hyper-, glycemia problem. The confusing part is at home between these episodes of hypoglycemia, her glucose runs high, and she does not eat hardly anything anymore. Today so far, she woke up with a glucose of 83 mg/dl [4.6 mmol/L], then she ate two tiny donuts because we could not get her to eat anything else, drank about 3 ounces of juice, and an hour a half later, her glucose was 192 mg/dl [10.7 mmol/L] Where did that come from? Then at about 3:45 pm, she ate exactly three crackers with two tablespoons of cottage cheese on them, three cheese crackers, and with two and a half ounces of soda. At 5:00 pm, her glucose was 296 mg/dl [16.4 mmol/L]. I am not sure what to think.

One of the endocrinologists at the children’s hospital said that she can’t have be diabetes because the only way child with diabetes would ever drop this low is if they had an injection of insulin. Is that true? I am confused. One doctor told me that she could be having an occasional insulin surge from whatever islet cells she has left and that can cause the drop, while the other doctor says that it is impossible. Can someone please offer some opinions? I will continue to follow up with her doctors, but I just wanted to see if I might be able to stop my head from spinning. Also, I was going to call the nurse practitioner on the team tomorrow and tell her that I would like them to run some antibody tests for islet autoantibody that I have been reading about. Do you think that this would be a reasonable request?