Hypoglycaemia

There are many ,very diverse causes of hypoglycaemia in children no-one here is qualified to say why your daughter is having these hypos.even if it seems similar to what they have experienced
How it's treated will be totally dependent upon the cause and that may take some time for doctors to work out ,that's why they can't really give any immediate answers and you may have lots of appointments with various specialists (like the neuro one you already have)
According to a Medscape article on paediatric hypoglycemia ,a specially designed diet with frequent feeding is commonly used as a treatment for hypoglycaemia from several causes so that may be why you have an appointment to see a dietitian
(not saying that is what they will recommend just pointing our that is one of the treatment methods for some types )
I know how worrying it must be but your hospital and it's staff are the ones who have seen her and are doing the investigations.Please take their advice for the moment particularly what you have been told what to do in the event of very low glucose levels .
' if her sugars fall below 3.5 we need to phone the ward if below 2 have to give her the sugar drink they give me and take her to a+e'

Hey, good to hear from you!

Been wondering how things were going.

Glad they are taking you seriously. That is very good news.
20 hours is a very long time.
I see tears ahead...

Let us know how it goes?

20 hours was a breeze for me, as I regularly do it, especially, when I've got a cold.

What they are doing is finding out what happens after the usual fasting times, for example, overnight of 10 hours, or 12 hours, or mine yesterday was 14 hours. They are looking to see if they can discount other conditions like pancreatitis.
If her blood glucose levels stay normal throughout the test then they will probably believe it is a form of RH. But this is probably the first of many tests.
Depending on the diagnosis and outcome, they are now doing some investigating.
Keep posting, let us know how you got on.
Have a look at my thread on 'According to my consultant 2015' for my test yesterday and read my blog. It's how I got here.

Best wishes

tanith1989 said:

hi we have a little more info on are little lady shes got ketotic hypoglycemia they said she only gets it when shes fasting or poorly but recently shes been going hypo evan when she's eat amd drank well today she was showing signs of her being low so we give her what she needed was at her nans so could not check her bloods so when we come home she was still hadn't picked up in her self we did her bloods 30 mins plus after her snack and last drink and they was at 7.5 shes never been that high we have to take her kit with us every were now dont feel like its over and seems to be getting more often i though i just had a clingy wingy baby but appers shes low when shes like this to often now xx

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Such a worry for you,please give your daughter big hugs ,hope she's ok soon, thoughts are with you .

Hi, thanks for updating us!

Sorry you are no nearer a solution. But thank goodness you have a diagnosis, and they are taking it seriously.

I've just had a quick internet search on ketotic hypoglycaemia, and it looks like she may out grow it, which would be a huge relief for you.

Remind me how old she is now?

Hi how is she? How are you coping?

I've just spent a few minutes looking up your child's condition.

The main thing is to keep her blood glucose levels up before sleep and make sure she eats steadily through the day, small but carby meals and one just before bedtime. She shouldn't sleep more than 8 hours and have a carby breakfast. She shouldn't miss meals etc.

If she does go hypo, then try glucose or something carby and if it doesn't bring her blood levels up you may have to take her to a&e. If you get a letter from your doctor or specialist which describes her condition, they will treat her accordingly.

According to the couple of papers I read, she should eventually grow out of the condition, which is good news, I hope.

tanith1989 said:

hi we have a little more info on are little lady shes got ketotic hypoglycemia they said she only gets it when shes fasting or poorly but recently shes been going hypo evan when she's eat amd drank well today she was showing signs of her being low so we give her what she needed was at her nans so could not check her bloods so when we come home she was still hadn't picked up in her self we did her bloods 30 mins plus after her snack and last drink and they was at 7.5 shes never been that high we have to take her kit with us every were now dont feel like its over and seems to be getting more often i though i just had a clingy wingy baby but appers shes low when shes like this to often now xx

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So glad to hear it, it is a relief to get a real diagnosis.