ketonic hypoglycemia

[rachelorch]

my 19 month old daughter has had low blod sugars since she was 3 months old we have just been told she has ketonic hypoglycemia (after thinking she has glycagen storage disease) i am not entirley convinced of this as her diet has gone down to virtualy nothiong she gets her nutrition via a gastostremy i dont no where i need to look on the net for further information please please can someone help me with this (i will provide more information if asked) thank you

[rachelorch]

hello again i would like to thank you for such a quick responce. My daughter has had ketones in her urine in the past but it only seems to be checked when she is having a hypo,Also i took your advice and called one of the clinics she had been to in manchester (england) they have agreed that her care should be taken over by one endichrinologist (please excuse the spelling)so all her notes have been passed over to that clinic. the reason she gets no nutrition in food and drink is she dosent eat or drink apparently there is no medical reason for this it is because she has been so porley and in hospital so much(13/19months not all at the same time tho)apparently she thinks she does not need to eat.she has always needed an overnight feed due to her going below 2.2mmols if she starves for more than 4 hrs.(i dont no what that is in the other measurments but i no all the doctors panic if she goes below this).once again i thank you for your responce it was verry helpfull i also hope you all the best,

[JDRF-Team-sgg]

Those of us who answer these questions are not doctors, but are either type 1 diabetics or parents of type 1 diabetics, so we are not qualified to give you medical answers. However, we CAN suggest that you insist that your daugther be seen by not only a regular pediactrician, but also a pediatric endocrinologist. I don't know if she is seeing a specialist now, but at her tender age, this kind of dangerous problem (severe hypoglycemia that is severe enough to cause the presence of keytones in her urine) needs the specialization of the endocrinologist. A regular pediatrician is just not going to have the experience with this particular problem to be able to help you.

That being said, I would suggest that you keep close watch on her glucose levels (I assume that you have a glucometer at home so you can check her blood sugar). You have not told us why she is not getting nutrition from regular meals, but from a gastostremy, but if this is true, you must work with the prescribing doctor to learn what to do if her glucose drops below the normal range of 70-126.

Hypoglycemia in children is a puzzling problem, for until the root cause of it is discovered (and sometimes it never IS discovered why it happens to certain children), you are stuck simply responding to it whenever it happens instead of fixing the root health problem that causes it. A pediatric endocrinologist should be able to do tests to rule out some causes and narrow down possible causes in order to have a better idea of what the problem actually is as she grows. Meanwhile, you must test her often and treat hypos IMMEDIATELY so that her developing brain is not damaged.

I did some searching on your behalf and found lots of articles that mention ketonic hypoglycemia, but most of them mention this problem in passing while describing actual health conditions that cause this symptom. This forum has had an interesting thread of discussion on it on  the web page I list below"
http://www.medhelp.org/forums/Diabetes/messages/172.html

You might want to go to that link and read what others wrote about it in February of 2004. I would suggest that you do a Google search on ketonic hypoglycemia and perhaps also on glycagen storage disease in order to find out more about both health problems so you can discuss the problem with your daughter's endocrinologist with some basic background knowledge. You certainly are more aquainted with her medical history than I am, and so you may have to be the one to weed out the unrelated articles from the ones that seem to be applicable to your daughter's condition.

I applaud you for wanting to find out more in order to help your child. I, too, am a parent, and I understand how you must be feeling. Knowledge is power, especially in the case of problems whose cause can be elusive to diagnose. You and your daughter's doctor need to work as a team to help her. I do wish you the very best.