At my emotional limit

[k2bdeutmeyer]

I'm tired of no answers. I'm tired of being told that maybe my daughter is just at the extreme end of normal, and then in the next breath being told that her body doesn't react like you'd expect. I'm tired of second guessing and thinking that maybe I'm just trying to make something out of nothing. I just want my answer. I want a name. I want to say "My daughter has ______________". I'm tired of negative test results. I'm tired of no explanations. I'm starting to get the feeling that the dr is quickly reaching the end of his ideas and will soon tell us that we'll just have to wait and see if she outgrows it. I'm tired of feeling guilty because I cried over negative results. Aren't I supposed to cry over positive ones? I drive myself crazy with the "whys".

 

Why us? Why can't we get an answer?

 

Why are her labs abnormal?

 

I'm just tired.

 

(My daughter's only diagnosis is ideopathic (of unknown origin) ketotic hypoglycemia with lactic acidosis)

 

Sorry, we just had a 6hr day at the children's hospital and left knowing nothing more than when we came. Thank you for letting me vent.....

[kwickimom]

:grouphug: I cannot imagine what you are going through. I freak my kids get a fever. I will pray you get answers!

[JoyfulMama]

I agree that the not knowing is so much more difficult than knowing. :grouphug:

[Perry]

I'm sort of surprised that they are continuing to do workups on her. Negative tests are good. It's a fairly common problem, and kids usually outgrow it by ages 4-6, as their muscle mass increases.

 

 

Wiki has a pretty good article on it.

 

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.

Diagnosis

 

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.

Treatment

 

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

 

 

:grouphug:

[JudoMom]

:grouphug: I understand. It took from 2-4 to finally get a dx of Juvenile Arthritis for my middle ds, and then we spent the summer he turned 5 trying to figure out his abnormal labwork (we still don't know, and he's 8). :grouphug:

[chickenpatty]

:grouphug::grouphug: I'm sorry.

[QuirkyKapers]

:grouphug: worrying about what is going on and not getting definitive answers is frustrating

[chickenpatty]

That is very interesting. My youngest dd had something just like this article describes happen to her in Jan 09. I posted about it here.

 

Thankfully, she only had that one episode with no other ill effects.

 

((hugs)) to Kristin & your dd.

[k2bdeutmeyer]

This has been going on for over a year.....and there is quite a bit more to the story. Something is not right with her glucose cycle. She is sometimes ketotic without the hypoglycemia....and we have yet to find a good reason for her to be ketotic.

[Patches]

Praying for you right now. :grouphug:

[Rosie_0801]

She is sometimes ketotic without the hypoglycemia....and we have yet to find a good reason for her to be ketotic.

 

 

That was explained to me as happening if you're not eating enough. But I only had gestational diabetes so I didn't really get into that much because it was over before it mattered much.

 

Keep at it, Mamma. My mother went through this kind of trauma with my sister, who would be in a wheelchair now if she hadn't.

 

:grouphug:

Rosie

[*Inna*]

:grouphug: