So I suggested to my daughters primary pediatrician that we should look into getting a referral for an endocrinologist. She wanted to see my baby for a neuro consult, "before we go that route"..... that maybe she had intercranial pressure, because her symptoms are generally first thing in the morning. WHAT!! I know that is not the problem, but I guess I will talk to her on Friday, and then my daughter has an appt with the geneticist on Monday. I hope they can find some answers.
An Endocrinologist will be able to diagnose the entire endocrine system. This includes the thyroid, adrenal gland, and the pancreas which produces insulin. The pancreas produces 2 important homones, insulin and glucogen. They work together to maintain a steady level of glucose (sugar) in the blood to keep the body supplied. If either of these aren't functioning properly, then too much or too little glucose can happen, and this may be what is happening with your daughter since her glucose levels are so low. People forget what an important role our endocrine plays in our bodies. Not to upset you, but I lost a son because I trusted that the doctors were doing all they could...they weren't. As a parent we have to do our own research so that we know where to look or go next. You should have been referred to a pediatric endocrinologist in the beginning of all this. I would have her seen by one, something is causing a lack of sugar in her body, and when this happens it's usually something with the endocrine system. It can't hurt and I believe will help. Take care....
Thanks for the article. My daughter is followed by a geneticist a couple times a year, but we have never seen an endocrinologist. They have her eat 3 1/2 tablespoons of cornstarch before bed to regulate her sugar while she sleeps. I does work.... I have taken her blood sugal level before in the morning when she wouldn't eat, and it was like 120. I just don't know what to do for her.... what does an endocrinologist do?
Your poor little girl. I looked this up and her symptoms do fit the diagnosis. Lack of carbohydrates play a big part. Has she been seen by a pediatric endocrinologist? If not, this would be my next step. Read the article below and hopefully it will help.
Ketotic hypoglycemia: the "disease"
Ketotic hypoglycemia more commonly refers to a common but mysterious "disease" of recurrent hypoglycemic symptoms with ketosis in young children. The cause and the homogeneity of the condition remain uncertain, but a characteristic presentation, precipitating factors, diagnostic test results, treatment, and natural history can be described. It remains one of the more common causes of hypoglycemia in the age range.
 Clinical features
The typical patient with ketotic hypoglycemia is a "toddler", a young child between the ages of 10 months and 4 years. Episodes nearly always occur in the morning after an overnight fast, often longer than usual. Symptoms include those of neuroglycopenia, ketosis, or both. The neuroglycopenic symptoms usually include lethargy and malaise, but may include unresponsiveness or seizures. The principal symptoms of ketosis are anorexia, abdominal discomfort, and nausea, sometimes progressing to vomiting.
If severe, parents usually take the child to a local emergency department, where blood is drawn. The glucose is usually found to be between 35 and 60 mg/dl (1.8-3.1 mMol/L). The total CO2 is usually somewhat low as well, (14-19 mMol/L is typical), and if urine is obtained, high levels of ketones are discovered. Ketones can also be measured in the blood at the bedside (Medisense glucometer). Other routine tests are normal. If given intravenous fluids with saline and dextrose, the child improves dramatically and is usually restored to normal health within a few hours.
A first episode is usually attributed to a "viral infection" or acute gastroenteritis. However, in most of these children one or more additional episodes recur over next few years and become immediately recognizable to the parents. In mild cases, carbohydrates and a few hours of sleep will be enough to end the symptoms.
Precipitating factors, conditions that trigger an episode, may include extended fasting (e.g., missing supper the night before), a low carbohydrate intake the previous day (e.g., a hot dog without a bun), or a stress such as a viral infection. Most children affected by ketotic hypoglycemia have a slender build, many with a weight percentile below height percentile, though without other evidence of malnutrition. Overweight children are rarely affected.
The diagnosis is based on a combination of typical clinical features and exclusion by a pediatric endocrinologist of other causes of "hypoglycemia with ketosis," especially growth hormone deficiency, hypopituitarism, adrenal insufficiency, and identifiable inborn errors of metabolism such as fatty acid oxidation disorders and organic acidoses.
The most useful diagnostic tests include measurement of insulin, growth hormone, cortisol, and lactic acid at the time of the hypoglycemia. Plasma acylcarnitine levels and urine organic acids exclude some of the important metabolic diseases. When the episodes are recurrent or severe, the definitive test is a hospitalization for a supervised diagnostic fast. This usually demonstrates "accelerated fasting"-- a shorter time until the glucose begins to fall, but normal metabolic and counterregulatory responses as the glucose falls. As the glucose reaches hypoglycemic levels, the insulin is undetectable, counterregulatory hormones, fatty acids, and ketones are high, and glucagon injection elicits no rise of glucose.
Once ketotic hypoglycemia is suspected and other conditions excluded, appropriate treatment reduces the frequency and duration of episodes. Extended fasts should be avoided. The child should be given a bedtime snack of carbohydrates and should be awakened and fed after the usual duration of sleep. If the child is underweight, a daily nutritional supplement may be recommended.
If a spell begins, carbohydrates and fluids should be given promptly. If vomiting prevents this, the child should be taken to the local emergency department for a few hours of intravenous saline and dextrose. This treatment is often expedited by supplying the parents with a letter describing the condition and recommended treatment.
 Natural history
Children "outgrow" ketotic hypoglycemia, presumably because fasting tolerance improves as body mass increases. In most the episodes become milder and more infrequent by 4 to 5 years of age and rarely occur after age 7. Onset of hypoglycemia with ketosis after age 5 or persistence after age 7 should elicit referral and an intensive search for a more specific disease.
 Is ketotic hypoglycemia a disease?
Despite much investigation for fifty years, it has not been possible to demonstrate any metabolic difference that sets these children apart from the normal population except the shortened fasting tolerance. It has been proposed that this condition simply represents the extreme edge of the normal population in terms of tolerance for fasting and ability to maintain normoglycemia. It is also possible that some children given this diagnosis have still-undiscovered defects of metabolism which will eventually be identified.