# Diabetic seizure in a 10 year old child pumping insulin



## Shoshana (Jan 17, 2019)

Hello, I haven’t posted on the forum for a few years. My daughter was diagnosed with type 1 diabetes three years ago. I am posting again as I my T1 daughter just had a seizure and I have had a shock that is hard to get over and I would really appreciate sharing with people who live in our world. This is not an easy experience to read about and I apologise for that, bearing in mind that some folks on this forum may only have recently had their child diagnosed and, like me in the early days, may be surfing the forum to understand what T1 is all about.  I am told that our experience does not happen often and that most T1 kids will never have a seizure. I am also a old that my daughter may never experience another one.

My daughter wears a Cellnovo pump (which we have had our moments with, but which works pretty well) and a freestyle libre, a flash glucose monitoring system which gives a good indication of what blood sugar is doing though you still have to scan (there are no alerts) and there is a time lag in times of fast changing blood glucose. My daughter is well adjusted to T1 and happy. All the family have relaxed into the T1 lifestyle over the past few years and we even went on our first skiing holiday this Christmas. About a year ago,  I stopped waking in the night to check her (unless I woke naturally). She is hypo aware and normally wakes up when she is hypo and comes to find me and we treat her together.

Alas, we are now in a different ballpark. On Monday night, after going to bed at a blood glucose level of 7 (on the libre) my daughter had a diabetic seizure at 11pm with convulsions. I still cannot believe how lucky we are that she fully recovered, particularly given that both my husband and I froze in shock. Her sister heard her making strange guttural sounds and she was moaning in her sleep and convulsing. I’m not sure how, but neither my husband or I connected what we were seeing in her presentation with the fact that this was a diabetic seizure which required an immediate finger prick and then a glucagon injection (once hypo was confirmed). We rang 999 who had were concerned to and did help us establish whether or not she was breathing (difficult to perceive in a convulsing unconscious child). They stayed on the line until the convulsions ceased and we could perceive breathing (so that no CPR was required to maintain her breathing pending arrival of the ambulance) BUT they did not direct me to give a glycogen injection. We have several of the orange kits in the house, we have been trained to give them, and I’m finding it hard to forgive myself for endangering my child’s safety by not reaching for it. It simply didn’t occur to us. We had never seen this situation before, we had never even needed to use glucogel (as opposed to glucotabs) .

We are so fortunate that she came out of it by herself.  When the ambulance crew arrived they gave her glucogel and she recovered and she was monitored in A&E overnight (I monitored her really, not the staff, but I was just grateful to be in a hospital in case it should happen again).  We saw the consultant the following day and she could give no reason for it happening, which is really hard to live with. She was very sympathetic as was our DSN, but their only idea was that the pre sleep meal some 4 hours earlier (peanut butter and banana toastie) should have had an extended bolus due to its low GI (lots of butter) and that we might have assumed that an apple eaten just before bed had a few more carbs than it did (unlikely, as we always treat apple in the same way). We were told just to be brave going forward and still seek to keep to our targets.

But my daughter has been in my bed ever since with my husband on the sofa. She is terrified to sleep and I am waking to check her a lot. I am back to nursing her with everything being about her levels and life feeling completely tenuous again.  The libre helps because I can get an idea by scanning her but I’m actually relying on finger pricks more at the moment as she dropped so suddenly before her seizure that I’m scared of the libre’s time lag. I’m wondering about other CGM like Dexcom, and whether this would be good for us and I would be so grateful for any advice from people whose children experience such severe hypoglycaemia without warning particularly during the night.

Thank you so much for reading and I’m really sorry if my story is distressing for anyone. I think it’s one of those things we should all be aware of, as parents, even though it’s distressing. University College Hospital have a great video showing how to use the glycogen - it’s actually straight forward and I wouldn’t worry about it hurting the child . My daughter didn’t even recall the experience and I really believe that she would have been unaware of the injection should we have had the foresight to give it. 

A final point. It’s worth getting a few glucogen kits (on prescription) as they are life-saving. A few of ours are expiring soon and we will use them as training kits for the school and for family members.

Thanks again for reading, if you feel like responding however briefly I would be really happy to hear from you.  Please forgive me if I don’t respond immediately. All the best.


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## Lanny (Jan 18, 2019)

Try not to be so hard on yourself! You did everything else right: called 999! You were in shock, as you said, & all the training in the world can go out the window when something out of the blue happens for the first time!

I remember when my mum was dying of pancreatic cancer in 2015! We, her family, were adminstering her pain meds at home & we were all taught what to do but, the first time I saw her in pain I panicked & gave her whatever she asked for; giving her too much at once. She ended up with an upset stomach after the pain passed that wouldn’t have happened if I’d kept my head & stuck to instructions. My mum was in pain & not thinking straight but, I wasn’t & should have kept a clear head! Some of my other family members made similar mistakes the first time too! But, after the initial shock we were all calmer & knew what to do & did it!

I’m sure that you will be better prepared if it ever happens again!

I hope things settle down for you now & I wish you all the best!

Lanny


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## Sally71 (Jan 18, 2019)

Oh what a horrible experience for you all, I'm so glad she is fine now!  I still check my daughter at night and we are 6 years in, I only check her once but do sometimes find her unexpectedly hypo and a story like yours confirms to me that I am doing the right thing.

I think all CGMs have the time lag, because they are reading interstitial fluid instead of actual blood.  However at least the others have alarms which might give you a bit of warning before your daughter drops dangerously low, I believe you have some room to set at what level the alarm goes off, so maybe that would give you some peace of mind.  Good luck


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## trophywench (Jan 18, 2019)

It's the same time lag pretty much with all CGMs since they all work off interstitial fluid, not blood.

I'd had T1 over 30 years all in adult life, when I was taking part in a DAFNE type course at my D clinic.  One lady went hypo, she suddenly didn't seem to understand things she'd known about already anyway last week and I was perplexed - what the hell was the matter with here today, she's older than me, OMG has she got the start of dementia or something like mom had?  Then one of the DSN's said Come with me and they both went out together.  So then the senior DSN said she'll be alright now because we pre-arranged her having a hypo in front of you all and the room went 'Aaaaah!' in unison.

I commented that I bet my husband would have spotted it immediately - but I'd never ever seen anyone having a hypo ever, even though I'd had shedloads myself.  It's just incredible that something that should be as plain as a pikestaff to someone seems to freeze their brains for the simple reason that it presents a bit differently.  So medics really have seen it all before and know exactly what to do - so you will too, NOW.  And I'm pretty certain I would be equally flummoxed as well cos I've never seen a seizure of any type for anybody and any reason whatsoever either - if I was present when one of the current batch of little ones (the great grandkids) had one I'd be just as paralysed apart from absolutely knowing I had to dial 999 too.  Same for their parents and grandparent or my husband.

There's absolutely no blame that can be attached cos none of us far as I know, knows everything and we only know anything because somebody else chose to teach us that in the first place.  But nobody had !


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## Robin (Jan 18, 2019)

Abbot is launching the Libre 2, which has alarms.(not available yet in the UK, but hopefully soon)
https://forum.diabetes.org.uk/boards/threads/libre-2-news.78838/


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## Flower (Jan 18, 2019)

A very frightening experience for you all, very glad that your daughter is alright now.

From my experience of being a young girl and having hypo seizures I could not remember a thing about them obviously it is alarming to come round with paramedics/nurses etc around you but I know my Mum was very distressed seeing me in that state. 

Is your daughter old enough to be starting puberty as I know the hormones from that time caused havoc with my blood sugar. Sometimes diabetes just side swipes us for no fathomable reason and it is difficult to regain your composure and self reliance but it's all we can do to try and get back to our own version of normal. I use Medtronic sensors with a 640g pump as I have no hypo awareness and you can set the threshold for hypo warnings and the level at which insulin delivery is suspended to suit your needs. I've found the system to works very well and although occasionally I do have low hypos that scare me I've avoided anything worse for a good few years now.

I wish you well and that hope things stay in a better place for you all.


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## Shoshana (Jan 18, 2019)

Thanks everybody that helps a lot to hear from you all. Feeling quite alone in this. My husband is feeling rather usurped as whilst he cares as much as I do of course, he is concerned that life should return to normal, however he’s still on the sofa and our daughter in our bed because I don’t trust that she will wake up now that she appears to have lost her previous night time hypo awareness (this is confirmed by last night’s events, when I needed to wake her twice to take glucotabs). 

Flower, you are right about the hormones - she is pre pubescent and hormones are starting to kick in. Thanks for the info re the Medtronic -will look into that. Still interested to learn about Dexcom too. Though as the approach of our consultant and DSN seems to be as described by Benny (“sometimes kids have fits”), I doubt they would sanction NHS funding for a change of pump to one with alerts. (We are using Cellnovo, which our daughter likes as is a patch pump hence small and discrete).

Benny could you tell me more about the bluecon and smart watch - where do I buy these? 

Robin, thanks for the heads up re libre 2. I asked Abbott about this and they confirmed there is no release date yet as they haven’t been trained on it. It’s available only to German markets at present.

All the best.


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## trophywench (Jan 18, 2019)

So - you have reduced her basal rates for nights, yes?


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## Shoshana (Jan 18, 2019)

Hi Jenny. Yes I w created a whole new profile myself as am not getting a response from my DSN this week. Unfortunately she now goes to 19/20 mol every morning , feels unwell and has to have a high amount of insulin correction which sends her low again at school mid morning. I really think I need a system with alerts, so I can reduce the basal reduction and”be brave” in aiming for her target which is what our DSN wants. Thank you.


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## HOBIE (Jan 18, 2019)

Well done to the whole family. Our thoughts are with you. I like the Libre & good for you. T1 is very different to T2 & everything you read is related to T2. Do your best to have a good nt sleep


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## Shoshana (Jan 18, 2019)

Thank you Hobie and thank you Benny  referring me to the miao Miao thread.


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## Bronco Billy (Jan 18, 2019)

Hi Shoshana. That sounds like a very scary experience! What you have been told is correct, seizures are quite rare. I’m sure your daughter will overcome the shock and will return to how she was before the seizure.

Hormones can make judgements even more difficult. What we have found with our daughter is that the effect is more or less the same each month, which has made decision making a bit easier, even if it still causes a bit of anxiety.

Have you checked the CGM to see how quickly her BG fell? Was/is there a pattern. Do you know what is causing the high BG in the mornings? While it’s totally understandable that none of you want to risk another seizure, it’s also important to avoid highs. It must seem like trying to ride a unicycle on a tightrope sometimes! Backwards!

Medtronic have just introduced a new pump called the 670G. When used in conjunction with their sensor, it has the ability to adjust basals. For example, if the sensor detects a fall in BG, the pump can reduce the basal rate and automatically moves it back to the programmed level when BGs start rising again.

I hope you don’t blame yourself for what happened. If I’ve learnt anything in the nine and a half years I’ve been dealing with it, it’s that type 1 has a mind of its own. Take care


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## SB2015 (Jan 18, 2019)

So sorry to hear about your experience, but glad you Cameron here to share it.

When we have A glucagon pens that runs out my husband uses it as a practice one and does the mixing etc, so that if he e er needed it he has at least more familiar with what to do.


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## Lucy Honeychurch (Jan 19, 2019)

Wow, horrible experience, hope you get some help and answers.


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## Shoshana (Jan 19, 2019)

Hi, I’m so glad I posted and so grateful for these responses. Haven’t got much sleep this week as I’m still processing the event and also have my daughter in my bed so that I can periodically check her. She is still going hypo without symptoms between 10-12 pm. Our diabetic team haven’t offered a reason for the complete loss of hypo awareness leading to very low blood sugar and seizure other than (1) the GI of food eaten before (seems unlikely) or (2) that she seems to have been running higher than usual lately which could explain her losing her hypo awareness. Not sure about (2) either.  It’s true that there has been some insulin resistance lately and several days over her birthday and the Christmas period where adrenaline (perhaps?) has seen her spike to “HI” on the libre or 26/27 mmol and then stay there in what we call a “table mountain” graph (after Table Mountain, a flat topped mountain in Capetown, South Africa) for several hours. But she has always swooped down eventually once the insulin kicks in and she has always woken herself up with her hypo in the early hours of the morning. 

The reason she has been going high in the early hours of the morning this past week is clearly too little basal since, due to our pump not cutting off and switching back on basal (like the Medtronic which Bronco Billy mentions) , I’ve had to do it sleepy headed in the middle of the night when the tendency has been to give too high a discount or for too long a period. We are on our 4th basal amended overnight plan since Monday and I think this one is better as she seems to need 0.4-0.5 units an hour from 4am on.

Bronco Billy, unfortunately we have no pattern from our libre or blood meter to learn from around the time of the seizure as we completely froze and didn’t use either until she we were seeing a recovery (to 2.2 on the libre) but she’s been 2.2 before so I suspect she was a fair bit lower at the time of the seizure. Strangely, the ambulance haven’t recorded a BM (other than this libre 2.2) from when they arrived. I also rang Patient Liasion Services for the Ambulamce to speak about the incident as I couldn’t get my head around the fact that the 999 call handler never asked if we had taken a blood sugar reading nor if we were trained to use a glucagon and if we had one to hand. Patient Liasion say that it is not the call handler’s remit to take a parent through the steps of giving a glucagon injection as that is a medical procedure for the paramedics. But even a mention of glucagon would have spun our frozen brains into action so I suggested that mentioning glucagon on the 999 call could at least be thought about. I had been very clear that she was a type 1 diabetic. 

I’ve taken a look at various CGMs. We feel that as neat a product as MiaoMiao / Blucon seem to be, we can’t sign up to a product former daughter which is unlicensed. Our daughter said no the Medtronic sadly, as she likes her small Cellnovo pump, which leaves us with the dexcom 6 in place of the libre, a big leap given that the libre is shortly to be available to us on the NHS whereas the dexcom is not. Such is life. We are fortunate that by making savings elsewhere, we can afford it for the time being, until Libre 2 or something else comes along. 

Thanks for reading. All the best.


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## Shoshana (Jan 19, 2019)

Thanks for taking the time to write, Benny. I’m confused though - can you help me out? I checked Ambrosia for the blucon and couldn’t see anything about alarms? My daughter loves the libre and we will soonish be able to stop paying for it. Is there an official site you can direct me too? Is it Ambrosia and, if so, have I just missed the info re alarms as they are the important bit. Can’t pretend I’m not concerned about the transmitter being unlicensed given it is for a child. Do you know any users actually using it with libre for a child? Thanks again.


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## trophywench (Jan 19, 2019)

Shoshana - do you think ANYONE that uses it - or any other bit of technical diabetes kit whether licensed or not -        trusts it 100% at first?  We certainly do NOT.

What I would think you would do is get it set up, and running, then do exactly what you've been doing since she had the seizure.  See for yourself how accurate it is or isn't.  Then if it seems OK try and trust it for one night. If it keeps on being reliable, trust it every other night and so forth.  Having the alarm to wake her if she goes low - and knowing her mum/dad will be woken up by the alarm on their phone at the same time in the next room and come to help her will surely make her able to relax and go back into her own room too.

With what you are doing anyway in the short term - which you know you can't carry on doing - nothing bad can happen.  Stop looking for snags cos none of the people I know on here or elsewhere that use it, have any problems with it.


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## Shoshana (Jan 19, 2019)

Jenny - thanks for your suggestion. I do appreciate everyone's advice on this forum and hearing from you all has certainly kept me going this week. I wouldn't hesitate with blucon or miaomiao with libre if it were for me, but I haven't heard of or from anyone using it for a child. There may be all sorts of potential ramifications for us using an unlicensed piece of kit for a child that is not countenanced by her diabetic team. Just weighing all the factors (including readiness of supply) rather than looking for snags.


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## Shoshana (Jan 20, 2019)

Benny, you’re right and that’s the decision I’ve come to this evening.  Just got to persuade the little lady to let go of the libre, which she likes, but maybe not forever. Going to keep an eye on libre 2 ... thanks again.


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## Barbie1 (Jan 20, 2019)

I was diagnosed at age 12, and over the teenage years had many violent hypos at night without waking up. That was in the days before any possibility of blood tests or home monitoring, so no doubt my parents had many sleepless nights worrying, though until I was 16 I did share a bedroom with my sister, who would be woken up by my thrashing about.  
We also didn’t have glucagon available but my Mum used to feed me sips of sweetened milk on her fingers, as I understand some sugar can be adsorbed through the mouth. (That was the recommended hypo treatment then!) I eventually quietened down and because we did not have blood testing equipment, they just had to assume I was ok and left me to sleep. I never remembered anything in the morning, and usually felt perfectly ok!

So although I know how worrying the seizure must have been, please don’t panic too much about it - I am still here 50 years after diagnosis!


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## PhoebeC (Jan 21, 2019)

This must have been horrible for you all. Hopefully she’s back on her own soon. 
What about a baby monitor too? I know it seems silly at her age but some of them are sensor ones for movements so that would help, it doesn’t register every moment but I think it would pick up more than just a natural sleep moment for example and there’s video ones. Might at least help her feel looked after x


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## Shoshana (Jan 25, 2019)

Hello. Thought I would post following my previous posts to say that my daughter is now a proud wearer of Dexcom 6 since last night and it’s going great. Painless insertion, great app and all in all a great tool. Meanwhile before making the decision to go with dexcom 6 we had already purchased a Miao Miao to go with the libre as our daughter liked the design of this together with libre which she already knows. If it gets delivered from China we will try this too, although I understand that people wait a fair while for Miao Miao . I just wanted to share how impressed I am with CGM in general and in our case Dexcom. It is bang on the money so far as delivering accurate blood sugars and is therefore enabling us to start understanding the glycaemic index of foods and how they affect my daughter’s blood sugar. CGM should be available more widely. We are fortunate that we can afford it and I feel sorry for those who, like us, fall foul of the postcode lottery and cannot. I hope that this will change following the good reception that Abbott freestyle libre has had.


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## Shoshana (Jan 25, 2019)

I just saw your post Barbie and I realise that I neglected to thank you for sharing your childhood experience and that of your mum. I’m sorry. I dip in and out of this site because in between my musings as a T1 mum, I am also a mum to a child with autism , and that takes over quite a lot of my time. I wanted to say that your story touched me and that I cannot imagine how difficult it must have been for your mum bringing up a T1 child without the technology and knowledge that we all have today. But then, as you say, here you are. That provided me with a lot of comfort - thank you. It’s not what happens to you but how you respond to it that counts, I guess. My New Years resolution should be to live with joy and without fear. I can only try...


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## stephknits (Jan 25, 2019)

Glad the dexcom is working out for you.  Hope things settle down and you can all get some sleep.


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## Bloden (Jan 26, 2019)

So glad to hear things are getting back to ‘normal’ after your horrible experience, @Shoshana.


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## Shoshana (Jan 27, 2019)

Thank you Bloden and Stephknits. Just whiling away the wee hours waiting for glucose to workfollowinf s hypo. Is glucose resistance a thing? Seems to take her over one hour to respond to glucose these days and don’t want to over treat so just watching the news and wondering what this country is coming to. Anyone else concerned about insulin supply these days ?


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## Barbie1 (Jan 28, 2019)

I also seem to take forever to absorb the hypo treatment these days!  I put it down to slow digestive system!

Just sent OH to stock up on essential groceries just in case (joking) but it is certainly worrying what may yet happen if we don’t get any sort of deal. 
Government says they have secured supplies of essential medicines. I would dearly like to believe that.....


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## trophywench (Jan 28, 2019)

Barbie - bit different losing your absorption of insulin after 60 years, to a 10 yo child losing theirs.

Surely that shouldn't be a normal thing to expect to happen to a kiddie?  Think you need to ask the consultant or at least the DSN.


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## BraveLauren (Feb 15, 2019)

Shoshana said:


> My daughter was diagnosed with type 1 diabetes three years ago. I am posting again as I my T1 daughter just had a seizure and I have had a shock that is hard to get over and I would really appreciate sharing with people who live in our world. This is not an easy experience to read about and I apologise for that, bearing in mind that some folks on this forum may only have recently had their child diagnosed and, like me in the early days, may be surfing the forum to understand what T1 is all about. I am told that our experience does not happen often and that most T1 kids will never have a seizure. I am also a old that my daughter may never experience another one.
> 
> My daughter wears a Cellnovo pump (which we have had our moments with, but which works pretty well) and a freestyle libre, a flash glucose monitoring system which gives a good indication of what blood sugar is doing though you still have to scan (there are no alerts) and there is a time lag in times of fast changing blood glucose. My daughter is well adjusted to T1 and happy. All the family have relaxed into the T1 lifestyle over the past few years and we even went on our first skiing holiday this Christmas. About a year ago, I stopped waking in the night to check her (unless I woke naturally). She is hypo aware and normally wakes up when she is hypo and comes to find me and we treat her together.
> 
> ...



I've had a big shock when I'm reading your story. Luckily, your daughter now is alright. Thanks for sharing.


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## J7BLE (Mar 17, 2019)

Shoshana said:


> Hello. Thought I would post following my previous posts to say that my daughter is now a proud wearer of Dexcom 6 since last night and it’s going great. Painless insertion, great app and all in all a great tool. Meanwhile before making the decision to go with dexcom 6 we had already purchased a Miao Miao to go with the libre as our daughter liked the design of this together with libre which she already knows. If it gets delivered from China we will try this too, although I understand that people wait a fair while for Miao Miao . I just wanted to share how impressed I am with CGM in general and in our case Dexcom. It is bang on the money so far as delivering accurate blood sugars and is therefore enabling us to start understanding the glycaemic index of foods and how they affect my daughter’s blood sugar. CGM should be available more widely. We are fortunate that we can afford it and I feel sorry for those who, like us, fall foul of the postcode lottery and cannot. I hope that this will change following the good reception that Abbott freestyle libre has had.


Hi, I have just joined this forum and have come across your post. It is every parents worst nitemare and I’m so sorry this happened to your daughter, hopefully it was a one off occurrence and will never happen again!! I was wondering if you have received you Miao Miao yet and if so what are your thoughts ?
Well my son was diagnosed in September and he is currently using Libre. Like you I check every night but would like more reassurance that things are stable in between my checks. Thank you


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## Shoshana (Apr 14, 2019)

Hello. So sorry that I’ve only just seen your message. I migrated towards several Facebook diabetes technology groups and haven’t been back on this site for a while. We chose not to start with MiaoMiao and are happy users of Dexcom 6 which I can really recommend as it alerts to as many phones as you want, when blood sugars are too high or too low. So we sleep easy. I believe libre will eventually have an alert but it does not at present.  I hope you are getting along well with it. We used libre for years and it was fantastic but once we needed alerts, we felt that we would prefer the customer service available with dexcom that is not so readily available with libre and MiaoMiao.


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## SB2015 (Apr 14, 2019)

Shoshana said:


> Hello. So sorry that I’ve only just seen your message. I migrated towards several Facebook diabetes technology groups and haven’t been back on this site for a while. We chose not to start with MiaoMiao and are happy users of Dexcom 6 which I can really recommend as it alerts to as many phones as you want, when blood sugars are too high or too low. So we sleep easy. I believe libre will eventually have an alert but it does not at present.  I hope you are getting along well with it. We used libre for years and it was fantastic but once we needed alerts, we felt that we would prefer the customer service available with dexcom that is not so readily available with libre and MiaoMiao.


Great news.
That all sounds good Shoshana.


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## J7BLE (May 12, 2019)

Shoshana said:


> Hello. So sorry that I’ve only just seen your message. I migrated towards several Facebook diabetes technology groups and haven’t been back on this site for a while. We chose not to start with MiaoMiao and are happy users of Dexcom 6 which I can really recommend as it alerts to as many phones as you want, when blood sugars are too high or too low. So we sleep easy. I believe libre will eventually have an alert but it does not at present.  I hope you are getting along well with it. We used libre for years and it was fantastic but once we needed alerts, we felt that we would prefer the customer service available with dexcom that is not so readily available with libre and MiaoMiao.


Hi....thank you for your reply. Yes I’ve also joined a few Facebook forums and have been gathering lots of knowledge from everyone. We have only been using the Miao for 2 weeks. It has its good points and not so good.....I do find being able to check my watch for Matthews levels amazing
 We are having issues with calibration of the blood levels at the moment though...I think there must be a problem with the tomato app. We find the Libre runs a bit higher than his actual blood so being able to calibrate to actual blood levels was great. I’m hoping and praying they get it sorted out soon


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