Hi

[Sazzle]

Hi all. I am hoping someone maybe able to help… My daughter 4, has been diagnosed with ketotic hypoglycaemia and currently waiting to have an app at GOSH (I do realise this is not diabetes but this seemed to be the best place to ask for advice) she suffers from blood sugar drops without warning, leading to hospitalisation. These generally happen at night and this means we don’t always see the signs and are not able to act quickly. We want to upgrade her room monitor so we can keep a better eye/ear on her and wondered if anyone here had a really good camera/monitor with great sounds quality they could recommend - as am wondering if this is a concern for parents with diabetic young children.
We had a recent very bad episode and I’m not sleeping very much as worried it will happen again I won’t hear her being sick (which is generally the first sign of issues)
Many thanks

 

[Inka]

Welcome @Sazzle 🙂 How worrying for you! Children being unwell at night is very stressful. My recommendation would be for a CGM - a Continuous Glucose Monitor. This would monitor her blood sugar continually and sound an alarm if it drops too low.

 

[Sazzle]

Welcome @Sazzle 🙂 How worrying for you! Children being unwell at night is very stressful. My recommendation would be for a CGM - a Continuous Glucose Monitor. This would monitor her blood sugar continually and sound an alarm if it drops too low.

Hi, thank you, yes she gave us an almighty fright!
At the moment the consultant is reluctant to do this as, until recently, her episodes have been very spaced out (months and months between). I am guessing the more frequently they happen the more open they will be to this..

 

[Inka]

Ok, well, if that’s not appropriate, then I’d go with an alarm with top quality audio so you could hear any vomiting. Is she woken from sleep by the vomiting or does she wake up, feel unwell and then vomit? If it’s the former, then perhaps something like an epilepsy alarm that sits under her mattress would be suitable? It detects movement and the sensitivity can be adjusted.

 

[Inka]

Is there any pattern at all in when she has the hypoglycaemia or vomits? If there is, eg it generally happens around 2am or whatever, I think I’d set an alarm for myself to get up and check her blood sugar and give her a snack if necessary in an attempt to ward any hypo off.

 

[Sazzle]

Hi, thank you for these suggestions - I didn’t realise there were epilepsy mats…I will look into these. Unfortunately when it happens at night she goes from sleeping to unconscious with vomiting - so literally unaware of anything.

There is no pattern other than it is more likely to happen at night but what she has eaten previously does not seem to matter. Her body just suddenly cannot regulate the levels everyso often. I believe this is why she is now being referred straight to GOSH.
She passed a 21hr starvation test with no issues and regularly does not eat for 12hrs at night without incident…it is just on the occasions her body decides it won’t work. ‍♀️

 

[Inka]

The unpredictability of it must be very stressful. At least if you could see a pattern that would be something for you to work with, or if there were any known triggers that would be something solid to build on. The referral to GOSH is good news. Hopefully you’ll get some answers then.

The other non-tech answer is to have her sleeping in the same room with you, but even then, I’d personally be anxious that I wouldn’t wake up. TBH, I’d probably go with a CGM if I could afford it because no matter how infrequent her episodes are, at least you could sleep knowing that an alarm would sound if she dropped too low. That’s just my personal opinion as a parent. You should do whatever works for you. It might be a case of experimenting until you find a set-up you’re happy with.

 

[Sazzle]

The unpredictability of it must be very stressful. At least if you could see a pattern that would be something for you to work with, or if there were any known triggers that would be something solid to build on. The referral to GOSH is good news. Hopefully you’ll get some answers then.

The other non-tech answer is to have her sleeping the same room with you, but even then, I’d personally be anxious that I wouldn’t wake up. TBH, I’d probably go with a CGM if I could afford it because no matter how infrequent her episodes are, at least you could sleep knowing that an alarm would sound if she dropped too low. That’s just my personal opinion as a parent. You should do whatever works for you. It might be a case of experimenting until you find a set-up you’re happy with.

Thank you for all your advice - I really appreciate it! Here’s hoping her referral app comes quickly

 

[rebrascora]

I am with @Inka that for peace of mind, at least until the appointment and something else is put into place, self funding a Freestyle Libre would give you peace of mind and enable you to potentially head off episodes rather than respond to them. You might also see patterns in the data which would enable you to figure out what might be triggering her or if it is totally random. Being able to see what your BG levels are doing day and night is a real eye opener.

Libre are currently doing a free trial, so you could try it (if you have a suitable phone which will operate the app for it) for a fortnight and see how you get on. It might be a bit daunting for a child having it applied as it goes in with a right clunk, but it lasts 14 days and providing you scan it at least every 8 hours it collects data 24/7. The cost is £100 a month which I understand is a huge amount but perhaps family would club together to help you out if it is beyond your means. I am just thinking as a short term option until you get some appropriate treatment or Libre on prescription.
I don't think I would manage to sleep at all in your situation. You musty be frantic every night knowing that might happen.
Sending virtual (((hugs))) to you all.

 

[Sazzle]

I am with @Inka that for peace of mind, at least until the appointment and something else is put into place, self funding a Freestyle Libre would give you peace of mind and enable you to potentially head off episodes rather than respond to them. You might also see patterns in the data which would enable you to figure out what might be triggering her or if it is totally random. Being able to see what your BG levels are doing day and night is a real eye opener.

Libre are currently doing a free trial, so you could try it (if you have a suitable phone which will operate the app for it) for a fortnight and see how you get on. It might be a bit daunting for a child having it applied as it goes in with a right clunk, but it lasts 14 days and providing you scan it at least every 8 hours it collects data 24/7. The cost is £100 a month which I understand is a huge amount but perhaps family would club together to help you out if it is beyond your means. I am just thinking as a short term option until you get some appropriate treatment or Libre on prescription.
I don't think I would manage to sleep at all in your situation. You musty be frantic every night knowing that might happen.
Sending virtual (((hugs))) to you all.

Thank you for your message. Yes that does seem to sound like the only solid answer until we get our referral appointment but it is a daunting idea as well as she’s so young.
I really appreciate the advice I’ve received here. Thank you all xx

 

[everydayupsanddowns]

Hope your appointment comes through soon for you @Sazzle

Must be very worrying for you and upsetting your daughter, and the unpredictability of it sounds really harrowing and unsettling.

Hope a CGM, either Libre or something like Dexcom work well for you and give you peace of mind. Most of these systems have options to share results and send alarms remotely to family members/caregivers.

Hope GOSH can give you some reassurance, and that there is some form of treatment available that reduces the risk of this happening again.