Ketotic hypoglycemia - will it reoccur? will it develop into anything?

Hello,

I have some questions about ketotic hypoglycemia.

Last week I couldn't wake my 22 month old daughter in the morning, and took her to hospital. She had very low blood sugar, and they diagnosed ketotic hypoglycemia. They didn't seem to be very clear on whether it would happen again, and it was mentioned that it could be the start of further problems with her blood sugar.

Obviously I'm worried.

Does anyone have any experience of this? Is it likely to reoccur? Will she go on to develop diabetes?

What snacks are the best thing to give her before bed to make sure her sugar stays up overnight? Is a drink of milk a good idea? Are there changes I should make to her diet?

Hope you can help,
Thanks very much,

Suzy
(Abi's mum)

[JDRF-Team-dm]

Dear Suzy,

Thank you for reaching out to the Juvenile Diabetes Research Foundation. I am a volunteer and not a doctor so I am unable to give you medical advice, however I can share my own personal knowledge.

I am so sorry that you had such a difficult experience with your daughter.

A person with type 1 diabetes is unable to produce insulin so they have to give themselves shots of insulin. If they have too much insulin and not enough carbohydrates this can cause hypoglycemia. Your daughter's situation sounds much different.

I know many people think of diabetes in conjuction with low blood sugars, but there can be different causes for hypoglycemia.

I did run across a website from the Mayo Clinic on ketotic hypoglycemia that may help. It is www.mayoclinic.com/invoke.cfm?objectid=46CE30AC-C117-43EF-AO83821EFED99153

As far as snacks go I would recommend speaking to her doctor about changes in her diet.

I wish you the very best with your daughter.

dm

[nurse12hr]

Finding your 22 month old daughter unresponsive from hypoglycemia to my mind calls for furthur investigation from a pediatric endocrinologist, ASAP.

I am very surprised that she was not given an extensive workup, and you given an explicit plan of action to try to prevent a potentially devastating incident from happening.

I would not let this slide.  An incident this serious calls for finding out WHY it happened in the first place.  This is not a normal occurance in a toddler.

[starpixi04]

Hi there my name is Naomi, my now 3 yr old was tested and diagnosed with Ketotic Hypoglycaemia in december last yr after i found her nealy unconsious after an illness and short fasting.

The ambos were quick to pick up the glucose level drop and there fore treat her.... but she was then subject to a controled fasting study to see how her body and hormone levels and other levels responded to short periods of fasting.  She can only go a max of 4 hours before she starts to show signs of gluclose levels droping, she becomes irritable, and out of control, her tempriture drops and is she is not given carbohydrates to bring her up again she would soon be unresponsive to anyone around her.
it is very frightening to see this in an other wise healthy child, although my daughter has been ill for 2 yrs and is about to have surgury for grommits and tonsilis and adenoids (adenoids) as she is so ill all the time and cant breath at night.

Her condition makes these proceedured even more scary as she has to fast and then they expect her to eat after.  Her Dndocrinology specialist has given a letter to her ENT surgeon for a dextrose infusion to be done vir iv cannula. before she gose down.

it is said that young children grow out of ketotic hypoglycaemia, having said that i have also been told that they develop diabetes after having this condition.

[klj]

This happend to my 18 month old son, he is now 10 with no side effects. However You must have your daughter fully investigated as Ketotic hypoglycemia is a very serious condition. My son was prescribed maxijul wich is a glucose drink wich I administer during periods of ill health (when he is being sick and therefore fasting). You really need to seek further advise on management of this condition.

[thesweetattack]

HI there,
Well , after 3 years of searching,  my daughter was just confirmed with ketotic hypoglycemia at a major children's hopsital this past week.  We have found her many times,  starting at 19 months, always in the morning in a comatose state.  It is very frightening,  and coming from a small town,  no one believed us,  since after a few trips to the ER,  they said to just start giving her full strength juice since that brings her around.   But no one ever told us "why?"  well after many docs,  and many diagnosis' we now have one that fits.  BAsically in a normal person,  when your sugar drops,  your ketones  tell your pancreas to release sugar to create energy,  but in most Ketotics,  the ketones keep rising and sugar keeps dropping.   Which can be very dangerous,  my daughters temp drops, she sweats horribly, and she just passes out .   And when the body does not have sugar to use at energy,  the ketones then eat from the childs fat stores,  depleting  their fat and they lose weight  till their sugar drops so low.   Also,  the raise of the ketones,  cuases a dangerous acid condition in the stomach,  makes them very nauseos, and vomiting occur,  again depleting more fluid and major dehydration can set it.      When they become ill, like diahrrea and flu,  they have a  very low threshold for dehydration since this causes them to deplete sugar and fat stores at a fast rate,  WE have to take my daughter to the ER after one Vomiting occurance if she cannot hold fluids--to have glucose administered.   I am from a a very small town,  and it took 3 years to finally get somewhere,  I wish I had a clue 3 years ago about this sight and what this might have been.  But Yes,  definately,  get to a endocrinologist ASAP, and don't take NO for an answer....  WE are on the east coast and went to Dr. Charles STanley in Philadelphia,  they have a children's hospital and one floor dedicated to just endocrine issues....  Now her episodes have lessoned since she is now 4 1/2,  she has a larger frame,  be in the beginning it was  2 per month,  and the last year it went from once a month to every other month......up until this past january when we found out what she most likely had--so we worked with the doctors till it could be confirmed.  So mainly we need to build her fat stores,  and a younger infant does not have that many stores,  so we give her a high fat shake before bed,  protein powder, Peanut butter, banana or strawberries and whole milk.   HI fat and HI carb being the most important,    Just milk is only about 3 carbs per 4 oz,  so they recommmended something like apple juice in the middle of the night if she has a cold or virus etc-----since it has more like 8 or 10 carbs per 4 oz......plus since some ketotics have issues with the proteins,  you may not want to add the protein powder as well since ketones are a form as protein.   There are also ketone test strips that Diabetics use,  and you can put those in your daughters urine stream as well if you think she is showing some hypoglycemia issues, and they show an issue about 3 hours before an ketotic episode may begin.  But I never found them useful since it only effected her bedtime fast.  During the day I could tell if she has not eaten enough or skipped a snack since she gets clammy then sweaty and downright irritable.      So hang it there,  I know it is scary,  buyt thankfully you are on the right track real early.....

thesweetattack

[kdbd3342]

I also have a daughter that has low blood sugar issues.  She is four now, but the issues started when she was 2.  When she goes low she has all of the same signs.  We have been through all of the testing including the genetic testing and the 72 hour glucose moniter.  They came back normal and so did her test for diabeties which she has taken twice.  They are now saying that she has a severe case of ketonic hypogycemia.  Her enocrinologist told us to give her frosting when she is low.  We also have an emergency glucagon kit which we have had to use twice because we could not get her to wake up.  I am so glad that I have found other people dealing with this issue because I feel lost.  Good luck and keep me posted

[HaleysMommy826]

I am currently sitting in the Children's Hospital with my 2 year old daughter who is now diagnosed as having Ketotic Hypoglycemia. 4 months ago she had a episode where she would not wake up. a couple hours later she would wake, but for short times and would seize. 3 day stay here at this hospital and that is what they thought then. We have just come in for a controlled fasting and of course it is Ketotic Hypoglycemia. My family has a history of diabetes, although I never had any problems, and it scares me to think that my daughter has to endure this until whatever time that she may outgrow it. I am now waiting on the doctors to come in and explain what I should do, what meals she should eat, the snacks she should have before bed (peanut butter sandwiches work WONDERS) The information I have just read helps out a lot and I am very sorry that you also have to endure this, but it is the determination and love of us parents that will help the overcome and grow into wonderful people.

[AZI01]

My little girl is 2 1/2 and has been diagnosed with ketotic hypoglycemia. After testing with a geneticist at the metabolic clinic, he wanted us to try giving our little Alee cornstarch therapy at night before bed. She takes 3 1/2 tablespoons of uncooked cornstarch in a cup of drinkable yogurt (or whatever I can get her to eat it in ) just before bed. The cornstarch acts as a slow release glucose to regulate her blood sugar throughout the night, and it has quite a few calories, depending on what you mix it in. I wasn't sure if it even helped, until I didn't give it to her one night this week.....we had eaten a really late dinner 8:15, so I was sure she would be fine, seeing as she would be going to bed soon. The next morning her daycare called and she was showing the hypoglycemia symptoms. I won't skip that again. Does anyone else use cornstarch therapy for their kids with this same condition?

Adria- SLC, UT

[Maryk64]

From what I read here it looks like girls get this, my grandson has just been diagnosed with ketotic hypoglycemia, is this unusual?

[juliepj36]

Today when I woke my 2 1/2 year old daughter, her head was drenched in sweat, she had a low temp and appeared weak, saying "I hungry mommy, I want mac and cheese." I actually was diagnosed with ketotic hypoglycemia when I was about 7 and had very similar symptoms. I was advised to have a snack before bedtime, usually a protein of peanut butter or cheese. Juice was what was used to pull me out in the morning if needed. It happened on a regular basis and likely when I hadn't eaten a good dinner the night before. I have my daughter scheduled w/ her pediatrician after today's episode. What I've read though is this is more typically diagnosed in young boys so interesting that there are so many girls on here with the symptoms.

[ChandraFaith]

My 6 year old son was also diagnosed with Ketotic Hypoglycemia about a year ago.  I share a similar story as most as I went to wake him up one morning and he wouldn't wake up.  He was transported to the ER by ambulance and almost immediately the ambulance driver pulled out his glucometer and tested his blood sugar which was a 45.  He had always been a picky eater and the night before only ate about 2-3 bites of his food and just played with the rest.  He was then put on an every 3 -4 hour eating schedule which he hated b/c we couldn't find a food that he wanted to eat, we tried to make him eat which just made things worse for us and him.  Recently we found a protein enriched milk made by a company called 'Horizon'.  It is lower in sugar than regular milk and comes in UHT cartons like juice boxes but it has about 10 grams of protein in every serving.  We have been using these in between meals for him and it has worked out much better. . . he doesn't feel like he is constantly chewing as he says :o).  Has anyone else used these and are they ok to take the place of  in between meal meals?

[englishkiwi]

Hey there. I am 18 year old male and I was diagnosed with ketotic hypoglycemia when I was 3 years old. One morning after sports day at school and a small dinner the night before I woke up and am told that I said i was 'hungry and my legs hurt' I was very weak and couldn't walk downstairs. My mum carried me down and noticed I was waxy pale and had purple lips. She phoned the doctor during which time i fell unconscious and couldn't be woken. An ambulance was brought and I was taken to hospital where I was later diagnosed. I am told that it basically means I have a 'very mobile blood sugar' and that at times of 'bodily stress' I am more likely to have an episode.
Saying that, however, I have not had an 'episode' since that day. This is simply because first my parents and now I, have actively managed it. I know that I need to eat regularly and can spot the symptoms (weakness, irritability etc) and counteract what is happening very easily. As long as I do this I have little to worry about.
I hope this helps:)

[DEe701]

My son was diagnosed with this 6 yrs ago after we found him unresponsive, sounds like so many of these stories. We do a high carb, high protien snack before bed. We do the cornstarch sometimes too. We have found that if he has a day with too many sweets or unhealthy food he tends to crash even with the snack. This just happened, which is why I'm online at 4 am! I will say, it gets much easier as they get older because they can instantly recognize the symptoms (even in the middle of the night) so you can take care of it before it gets bad. I know you feel scared right now, but it really is manageable and easy to care for. I remember my first night at the hospital when he was 2. So overwhelming. But take heart that it becomes just a little extra thing that you have to stay on top of with the bedtime snack and not overdoing sugar. It is actually pretty easy to maintain when you get in the groove and your nerves settle down from this frightening experience.

[Jennie820]

My son is 4 years old and was just diagnosed with Ketotic Hypoglycemia. All of these sound just like what has been happening to him since he was about 2 years old. They finally refered us to a pediatric endocrinologist and they were able to daignose him the other day. Our challenge is that he does not eat very well, he just picks. Finding a bedtime snack has been hard. I am kind of disappointed in the visit with the endocrinologist as they didn't really give us any details on diet or anything, just said this is what he has and it is very common and no big deal! I guess my question is should we be limiting the amount of sugar in his diet?

[DEe701]

Yes, you want to limit sugar, but you dont need to eliminate it. It's hard when they're picky! Ensure shakes have lots of carbs and protien. Even a half of one.

[naveh2011]

my daughter is 3 and in the past 5 months has been in RESUS 6 times for the same thing the metabolic disorder team say its Ketotic hypoglycemia she has all the same symptoms but she doesnt have the morning crash hers is anytime of the day/night not just morning. she is on Polyjule and cornstarch she is also on Formula called NEOCATE for protein allergies.  at her last admission she was almost admitted to ICU. because she was really unresponsive. they had to administer 10% dextrose and glucose, its just frustrating i wish they could be sure. We took her ketone level last time she was unconsious and it was 2.4 but her bsl was only 4.7.

[Familyof005]

I too have a son with KH. He is 3 1/2 years old and has a few other issues as well. I was just curious, when your KH kids get sick and need hospitalization, have the docs run either a Urine Organic Acid test or Acylcarnitine Profile? If so, were they abnormal?

[kahjah]

Not trying necessarily to be a down on vaccines, but just wondering if anyone's child had the first hypoglycemic event (later diagnosed as idiopathic ketotic hypoglycemia) after getting the DTAP. Mine was unresponsive at 18 months a week after the shot.

[Neenut]

Interestingly enough yes, my grandson had his DTAP on Monday and was unresponsive on Saturday with a blood sugar of 16! This had never happened before and I thought maybe they would think I was crazy if I suggested that might be the cause.

[Neenut]

Interestingly enough yes, my grandson had his DTAP on Monday and was unresponsive on Saturday with a blood sugar of 16! This had never happened before and I thought maybe they would think I was crazy if I suggested that might be the cause.