[Hayley]

My sister has been diagnosed with diabetes since she was 10 years old, she is now 18. She currently does the injections where you inject when you eat rather than always 2 a day.

For the past 2 and a half years now she has been having fits and over the past 6 months these have become more regular, averaging at approximately 1 a week. Whilst at times, these can occur after nights out which offers some explanation for them, they still do happen randomly at different times in the day. I have tried to talk to her about it but this is extremely difficult with her age.

I have just moved home from university and did not realise the extent of the problem and am really worried as she now drives and has had a fit in the car. Luckily she was with a friend who managed to control the car to a halt but this has really really worried me. The fits also wipe her short term memory and she can never remember having the fits afterwards.

I was just wondering if anyone else either suffers from this or knows someone else who does and if they could offer me any advice?

Thank you so much x x x x x

[xMenace]

Been there and done that. Most of us have.

How you convince an 18yr old is a tough question, but SHE needs to take control of her diabetes. It can be done with some knowledge, attention, and work. These people feel they are being 'free', but actually with better control you end up more free. We can help her, her doctor and D educator can help her, but it's no use if she's not willing to help her.

[GrammyByer]

I'm not sure what you mean by "fits." Do you mean episodes of low blood glucose (hypoglycemia) or do you mean an actual seizure?

[Cyborg]

If your sister is having extreme hypoglycemia, she needs to test more often. If it's accompanied by seizures, there is anti-seizure medication available that my help.

[Hayley]

Thank you so much for that advice.

It is comforting knowing that other people are/have gone through it also.

I do keep trying to talk to her and she is gradually becoming more open about being diabetic.

I will defo see if i can get her to look into the anti-seizure medication because they are getting worse and worse with it sometimes taking me or my mum up to 2 hours to get her to come round.

Another major issue is how violent she is running up to the fits and during them...any advice with that? Throughout the fits her body really does thrash around and it can be difficult to get the hypostop gel in her mouth, I dont know if this just inevitable or is there something else that she could do to help prevent this?

She is always really really tired and getting her out of bed can be an absolute nightmare, often taking up to an hour. I think this can sometimes be the reason for her fits as she's sleeping too long and therefore going too long without food or injecting. Is this a common feature of being diabetic and is there anything she can do or i can do to help with the tiredness?

Thank you so much to everyone writing things on this forum

[lgvincent]

I'm confused about the fits, too. Are you talking about low blood sugar or rage? I feel you may be talking about low blood sugar. Your sister does need to check her blood sugar regularly. Perhaps that could help some. However, when I was at her age, I rarely checked my sugar so I know getting her to do it can be a problem. She MUST check her blood sugar before driving. I've destroyed three cars and badly damaged another by having insulin reactions while driving. Of course, these took place before blood glucose monitors were available. I don't want that to happen to anyone else.

[Hayley]

Also, I have read quite a lot about something called the pump?
What is this as nothing like this has ever been mentioned to us? All we know is that it isn't a form of treatment available through our national health service but we would be willing to pay if it was beneficial...

[Hayley]

sorry, by fits i mean when my sisters sugar drops so low that she is unconscious and her body is jerking....sorry my terminology isnt the best x

[notme]

If these episodes are lasting over two hours, I would suggest seeing if your sister also has another seizure disorder as well as low blood sugar. All of us have had episodes of low blood sugar that causes difficulty. Usually, with glucose or sugar it is reversable within ten to fifteen minutes. Loss of memory and "thrashing" around for a two hour period needs to be reviewed by a doctor. Low blood sugar can wipe you out for a day. If your sister is having one a week, that can be exhausting.

Pumping is an option for your sister as it is an option for anyone with diabetes. Low blood sugar will still occur. You can gain good control, but you must be diligent about testing and the foods you eat.

I would suggest talking to the doctor about her "fits". Generally, when your blood sugar goes low, you can treat yourself before it gets to a level of unconciousness. Your sister may have hypoglycemic unawareness. I would also want to make sure it wasn't triggering seizures.

[lgvincent]

It does sound like your sister needs to make some adjustments to her insulin. While there are many causes of an insulin reaction, having them on a regular basis probably means she's taking too much. It would also be a good idea to keep some Glucagon on hand. A member of her family could inject it if she's having a bad insulin reaction. Glucagon is expensive but I don't remember how much it costs right off hand.

[sofaraway]

For starters she shouldn't be driving at all if she is having fits/seizures. I believe most peopel have to be seizure free for a year before they can have their lisence back.

has your sister been seen by doctors? gp, diabetes team, neurologist? have they any idea why she is having these bad hypos?

pumps are avaliable on the NHS, for those that need them, each person will be individually assessed and they need to fit a specific criteria.

i always thought that hypostop was not really for use in people who were unconcious, due to them not being able to swallow. mayeb you could look into glucagon instead.

sounds like it's a really hard time for you and I admire you wanting to help your sister, she is lucky to have your support. maybe suggest she joins here too?

[BlueSky]

Hayley,

Sounds like a difficult problem. And good on you for seeking info to help deal with it. Doctors don't have a good handle on this kind of stuff and we need to find our own solutions.

Hypo induced seizures are not uncommon in type 1 diabetics. But, from what you have said, it sounds like there could be more going on. I suggest getting her to a neurologist. She could have epilepsy as well, in which case even a moderate dip in blood glucose could precipitate a seizure. If an eeg shows abnormal activity when blood glucose is in the target range, she needs to be on anti-convulsant medication.

I lived with both epilepsy and T1 diabetes for 25 years, and yes, good blood sugar control is very importatnt. The trick is to avoid excessive volatility in the blood glucose level. The best way to achieve this is to minimise the amount of insulin injected before meals. And you are able to do this by minimising carbohydrate consumed with meals. It should reduce both the depth of lows and number of them. And seizues will become less of a problem.

Is she using Lantus or Levimer as basal insulin? Because the older NPH basal insulin is notorious for causing big unexpected swings in blood glucose. And it goes almost without saying that regular testing is essential. At one stage, I was testing 15 times a day. Until the BG level has been stabilised, your sister should test twice before going to bed, perhaps half an hour apart. That way she will be able to see what direction her blood glucose is moving in and be more able to prevent lows in the first place. Good luck.

[Hayley]

THANK YOU ALL SO MUCH!!!!!!!!!!
Everything you have said is really really really appreciated!
I have discussed it all with my sister and despite a bit of a temper tantrum...to be expected i guess haha....i think she is thinking about some of the things you have said and has also agreed to sign up to a forum such as this!

She agreed with the comment that it often does not seem like the doctors are much help so hopefully speaking to other people with diabetes will be good for her!

No doubt il be back asking more questions in the future but thanks for your help up to now

Its really wicked that you all take the time to help answer people's queries and give support to people!!!


xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxx

[xMenace]

One thing to keep in mind is that guilt is not tolerated. When she joins, she joins as an equal partner. We are all guilty of bad management. We've done things that make your sister look like the child she is. We don't really care. It's all about moving forward. When she's ready to rock, we're ready to roll

[xMenace]

Originally Posted by Hayley

Also, I have read quite a lot about something called the pump?
What is this as nothing like this has ever been mentioned to us? All we know is that it isn't a form of treatment available through our national health service but we would be willing to pay if it was beneficial...

Insulin pump - Wikipedia, the free encyclopedia

Under MDI I was living a wild and whacky existence. Hypo followed by skyrockets followed by hypo, with the odd 911 thrown in. After a year of pumping, my hypos are virtually gone! My last hypo that needed treating was four months ago!, and that was a minor one The biggest control difference is the treatment of basal requirements; many of us have roller coaster patterns. My first thought with your sister and her many fits is she might too. At least her basal dosage is probably off and needs adjusting.