Friday, September 12, 2014

This week....

Has been another crazy one with my eldest bug having a few seizures at school on Monday...
I spent most of Monday at the hospital's Casualty Unit (the second time these past 3 weeks) and managed to get her an appointment  for the next day with one of the top epilepsy specialists (her original appointment with him was only supposed to take place on the 16th) .

So Tuesday morning it was off to the specialist.....
By Tuesday afternoon she was admitted to the specialised Epilepsy Unit at the hospital - we were truly lucky as the waiting period to get into this unit is about 6 weeks, but as they had just received a cancellation from someone who had been due to go in.....we snapped up the chance and had her in before lunch!

They stopped all her meds and had her hooked up to the EEG monitors 24/7 running a battery of tests with the hope of finding a trigger for the seizures. Eventually she was given a Red Bull (yes,.....the energy drink!!) and she flipped and had a full blown seizure. Scary I know but this was what the doctor wanted and needed to happen to see what her brain does when she has an episode.

And what they have discovered is a blessing.......she had been misdiagnosed over 2 years ago and is NOT epileptic! The seizures that she's been having does not involve her frontal lobe at all and seems to be triggered by an over stimulation of the brain stem (the "primitive brain" if you will) by adrenaline. To paint a very simple picture - when she gets anxious about something she goes into hyperdrive and if this is not stopped .....she has a seizure. The crabbiness, mood swings and head aches that we had assumed was normal in a teenager were actually some of the symptoms of her condition. The other things that we now know are physical manifestations of her illness includes the "pins & needles" feeling she would constantly get in her arms, or fingertips, or legs etc) and the constant pain in her shoulders (which we had thought was because of the hockey she played). Her condition is not common in a 15 year old (anxiety and stress in a 15 year old who is in a loving home which manifests as seizures??!!).....and yes, it is worrying that her seizures are psychosomatic. But now that we are made aware of the problem...we can get to dealing with it and more importantly, get *her* to deal with whatever makes her feel so anxious and stressed and down that she has a seizure.

The journey is far from over but we have a path and I'm pretty positive that we'll get this under control :)

Have a wonderful weekend!

Take care


12 comments:

Mrs. GraceWorks said...

I'm so glad you have a diagnosis!! Now you can start on the journey to controlling it and recovery. {{Hugs}}

Tricia

Pull the other thread said...

Glad to hear they have gotten to the bottom of the problem. Hopefully now you can all concentrate on solving the issue.

Annie said...

Sending prayers and good thoughts your way that they can get her straightened out and feeling better!

Linda said...

Sending hugs and happy thoughts your way Thoeria.

Linda

cucki said...

Sending lots of hugs and prayers my dear xx

Gillie said...

Oh my, Thoeria, glad you've found out so much and as you say, can deal with it. Sending hugs and prayers to you all. Chart is on its way, posted Monday!

Mouse said...

well that is great news in one sense but a long journey in the other to find out what is causing all this ... it may be as simple as something that was said to her which has blown out of proportions .... I hope you manage to find the light at the end of the tunnel quickly :) love mouse xxxxx

Carol- Beads and Birds said...

Thoerica, you are so very lucky that this situation was discovered. It makes you wonder about the first diagnosis. We are all glad that you can work out how to control it. Teens have far too many OTHER things to overcome these days.
xx, Carol

Angela P said...

Great to hear they know what is the cause :) Best wishes to your Daughter :)

Denise SA said...

Wonderful that they found out what is causing the problem hope she is now on the road to recovery

Kaisievic said...

Thoeria, that is good news. I am sure that with a good counsellor, your daughter will work out how to deal with her stress and anxiety. My daughter has a different physical complaint triggered by stress and anxiety and her therapist has helped her enormously. Like your daughter, mine has grown up in a loving, caring home but it is very common for teenage girls to put a lot of pressure on themselves to be perfect in every way (even when we, as parents, do not ask them to do so). Also, my youngest son at 8 got shingles which is usually brought on by stress. Now, he was and still is the happiest go luckiest of people and a beloved youngest child - so you tell me, what stress did he have? I firmly believe that it will all work out okay for your daughter now that you know which direction to look in for help. hugs to you all, Kaye

Jo who can't think of a clever nickname said...

Wow, I have not heard of this before. It's so good that they have ruled out epilepsy because at least she can stop taking the meds for that. I hope you can sort out this new condition soon.