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.
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.
