Diabetic for 18 years need advice

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kirstylynn

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Type 1
Hi all
Need a bit of help and advice. My daughter now 26 is type 1. Diagnosed when she was 8. Had all the usual issues growing up but got through it. She now has a 5 year old child jer own house and manages very well day to day. However from about the age of 17,18 she has been having unexplained seizures very similar to what she would have when she's hypo. She has had mri and various other tests and everything comes back normal! We have put it down to hormonal imbalances but her doctors don't seem to want to push it any further to find out what it is or how to help her, one doctor asked her to film it while it was happening! How she is supposed to do that I don't know. She seems to have given up herself and is accepting that they will continue to happen and she has to live with it. Sorry for the long post but any advise or similar situations anyone can give me.
 
Welcome @kirstylynn Sorry your daughter is having problems. That must be very hard, especially with a young child.Have you contacted an Epilepsy charity like Epilepsy Action for advice? There are many different kinds of seizures and they can provide support about what to check for, etc.
 
She was tested for epilepsy a few years ago as she has a cousin who is epileptic. But everything was ok. I feel at a total loss, as she is now older I don't have the same input. She is a young adult who has given up, feeling no-one believes her or is doing anything.
 
I'm sorry to hear your kiddo is in this position.
My 21 year old got told by a consultant that there was nothing wrong with her knee (after surgeries) and he was basically done with her. We sought a second opinion where proper investigations were done and issues were found (and are awaiting more surgery).
The impact to her mental health was huge and there are still issues on that front.
I know their situations are totally different, just wanted to say from one parent to another, I understand how hard it is to see them defeated and questioning their own (clearly present) medical issues, let alone having to deal with the conditions themselves.
We were also asked to film her knee dislocating (yeah like it comes with a 5 min pre warning of when its going to happen).

Wish I could offer some practical suggestions apart from keep fighting and advocating for her where you can.
Many hugs x
 
Seizures can be really hard to diagnose and very difficult to live with. First up get her to make a full list of all medications she’s on and have them checked by her GP or a pharmacist as to if they can cause seizures - I know 2 people whose anxiety meds were contributing factors to their seizures.

Yes filming them is one of the key ways of getting a diagnosis. Frustrating but it helps to see what sort of seizures she’s having which then can lead to a diagnosis. Keep a diary. Note down things that she can see triggers them - photosensitive seizures aren’t limited to epilepsy.

Has the GP offered any medications to try?

Non epileptic seizures can be caused by or made worse by stress. Part of keeping a diary should be feelings as well as symptoms.

It may be that having seizures when she’s hypo has set her brain to think this is a normal response to stress. Is her diabetes well controlled? Does she have a sensor and/or pump to help with that?

The NHS is really hard to deal with at the moment but offering to do some of the legwork of pushing for appointments etc may help her.
 
Hi she is on no other medication except for her insulins. We have pin pointed that it's hormonal. They seem to strike at certain times around her periods etc. She knows roughly when one will strike but it's hard to video when she us in the house alone and there is no real warning. What warning she has is spent making sure her daughter if she is there is safe and that she is in a safe space so as not to hurt herself.
 
Hi. Speaking just as a techie and addressing the videoing herself issue - if she is usually able to get herself in a safe area, perhaps a cheap CCTV camera with SD card for recording placed in that area might be an option?
 
kirstylynn said:
Hi she is on no other medication except for her insulins. We have pin pointed that it's hormonal. They seem to strike at certain times around her periods etc. She knows roughly when one will strike but it's hard to video when she us in the house alone and there is no real warning. What warning she has is spent making sure her daughter if she is there is safe and that she is in a safe space so as not to hurt herself.
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I agree with Amberwood, but in simpler terms-- get a baby monitor? Of the right sort; I just checked, and there are baby monitors that do video recording, and they're not all terribly expensive.

If she can get herself to a safe space in the brief warning time she has just before a seizure-- set up the babycam in the safe space she most often heads for?

Agree with The Bear, too: the medics' suggestion that she film herself having a seizure may sound outrageous, but seizures can be very difficult to diagnose. Getting one of her seizures on record would make a big difference, above all for how she feels; it must be awful for her to feel "no-one believes her or is doing anything." Wishing her and you all the best.
 
kirstylynn said:
Hi she is on no other medication except for her insulins. We have pin pointed that it's hormonal. They seem to strike at certain times around her periods etc. She knows roughly when one will strike but it's hard to video when she us in the house alone and there is no real warning. What warning she has is spent making sure her daughter if she is there is safe and that she is in a safe space so as not to hurt herself.
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@kirstylynn If you’re certain it’s hormonal, then that might be related to this:

https://www.medicalnewstoday.com/articles/catamenial-epilepsy-cause-diagnosis-and-treatment

and here: https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy

You’ll see possible treatments mentioned there. Has anyone witnessed one of her seizures? If so, writing down a description can help the specialists. Has she tried hormonal treatments? Does she have a seizure every month?
 
kirstylynn said:
Hi she is on no other medication except for her insulins. We have pin pointed that it's hormonal. They seem to strike at certain times around her periods etc. She knows roughly when one will strike but it's hard to video when she us in the house alone and there is no real warning. What warning she has is spent making sure her daughter if she is there is safe and that she is in a safe space so as not to hurt herself.
Click to expand...

Surely no matter what cause of seizure is she should be on anti seizure drugs to prevent them, wife has seizures so she takes meds to prevent them.
 
kirstylynn said:
Hi all
Need a bit of help and advice. My daughter now 26 is type 1. Diagnosed when she was 8. Had all the usual issues growing up but got through it. She now has a 5 year old child jer own house and manages very well day to day. However from about the age of 17,18 she has been having unexplained seizures very similar to what she would have when she's hypo. She has had mri and various other tests and everything comes back normal! We have put it down to hormonal imbalances but her doctors don't seem to want to push it any further to find out what it is or how to help her, one doctor asked her to film it while it was happening! How she is supposed to do that I don't know. She seems to have given up herself and is accepting that they will continue to happen and she has to live with it. Sorry for the long post but any advise or similar situations anyone can give me.
Click to expand...
Have the looked into functional neurological disorder? Can be a stress trigger and non epileptic seizures can be one of the symptoms.
 
@kirstylynn I also meant to add that she should keep a diary of her seizures and her menstrual cycle to see if there’s any link.

The short answer to your question about advice is to push for answers. Rule in/out a link to her cycle, and then look at non-epileptic seizures. Again, Epilepsy Action has great information.
 
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