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International Epilesy Day

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International Epilesy Day

Postby Andyp » 10 Feb 2020, 19:02

Only just found out it is International Epilepsy Day.
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Our daughter is going through a torrid time of it recently. As well as the impact it is having on her it takes its toll on dearest and dearest too.

She has had three seizures today since 4.45 am, it will take another day for here to get over it. Not the sort of epilepsy that responds to any of the available drugs nor the recently approved but not easy to get cannabinoid medicines.

We await further MRI, DNA and EEG results and consultations with the experts in Paris next month.

Can only hope things will get better soon.

Hope this doesnt sound too much like a rant.
cheers

Andy
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Re: International Epilesy Day

Postby Woodbloke » 10 Feb 2020, 19:19

I sincerely hope she gets better Andy...I can relate a true story about epilepsy but it's not pleasant reading - Rob
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Re: International Epilesy Day

Postby DaveL » 10 Feb 2020, 19:56

I hope she over comes this problem.
I worked with a chap, back in the 70's who was a great electronic design engineer who had this. He was liable to crumble and fall over at any time, but his work as second to none.
Don't let it stop her from aiming high, it can be done.
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Re: International Epilesy Day

Postby Malc2098 » 10 Feb 2020, 20:18

My daughter, too, lives with this every day. It arrived following a car crash 2 years ago.

She ran her own successful PR business. She has had to close it down and make staff redundant.

I have had to pay the company's tax bills, because the unsympathetic staff at HMRC declined to believe that her new condition existed to prevent her working and did not believe she would pay in instalments.

I have just take 3 weeks, remotely, to help her complete her PIP2 form. Her short term memory loss due the brain injury means she forgets which questions we answered yesterday and where she filed them.

She is now down to 4 or 5 tonic clonic seizures per month, but maybe 5 to 10 myclonic seizure per hour as well as the focal seizures!

We await the result of the PIP application and see if they believe in the 'going out' section that when she has a TC seizure in a public place that she cannot walk 20 paces or any paces at all because she is unconscious and needs to be carried to a place of safety.

I ranted after I read the questions on that form!
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Re: International Epilesy Day

Postby RogerS » 11 Feb 2020, 08:49

No rant, at all, Andy. I'm just so sorry to hear that she's not responding well to treatment. Fingers crossed that they get to the bottom of it.
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Re: International Epilesy Day

Postby TrimTheKing » 11 Feb 2020, 10:54

Sorry to hear that Andy, I'm not a religious person so don't pray, but I'll think positive thoughts for her. All the best.
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Re: International Epilesy Day

Postby HappyHacker » 11 Feb 2020, 12:06

Andy,

My thoughts are with you and your daughter. I did not know there was an Epilepsy day!

One of my daughters suffers but fortunately she responds to medication and lives a normal life, as long as she takes the medicine but it is always a worry.
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Re: International Epilesy Day

Postby Rod » 11 Feb 2020, 13:05

I hope they get it back under control Andy ASAP

Strangely I take medication for nureophatic pain which was originally developed for treating epilepsy so it’s often on my mind.

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Re: International Epilesy Day

Postby Andyp » 13 Feb 2020, 07:25

Thank you for you thoughts. Some of the meds prescribed have quite scary side affects which in part is part of the problem.
cheers

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Re: International Epilesy Day

Postby SamQ aka Ah! Q! » 13 Feb 2020, 12:40

Andy, like Mark, I am not particularly pious, but like him, I wil send you and your daughter all good thoughts. As a former teacher, and the school's only First Aider for a while, I am aware how unpredictable, distressing and disruptive this condition can be.
I admire your candour sharing this and would add that I found - directly contrary to present political correctness - that open sharing like this made a lot of instant supporters. The other boys in the classes of epileptics, once informed and told how to contain a seizure until I got there, formed a truely admirable support network.
My daughter found exactly the same responce and backup in a totallly different school when diagnosed as anaphylactic. Her yeargroup formed "The Kiwi Police", dedicated to preventing any lunch containing one coming close to her. People can be so good.

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Re: International Epilesy Day

Postby Andyp » 13 Feb 2020, 16:43

Thanks Sam,99% of my daughters seizures have been at home and she has never had one at school. She also has to cope withe cerebral palsy, she is not wheelchair bound but does tire very quickly. The school have been brilliant in tailoring the baccalaureate in business admin around her needs and limitations. She can only manage 24 hours a week ( and misses about 1 day in 10 due to seizures) and has a teaching assistant with her the whole time she is there. When the assistant was off ill her classmates were brilliant in helping her too.

Meds are just not working and seem to have had a detrimental affect on her cognitive abilities. Much to the consultants ire we took her off one of the meds which we felt was hindering her sleep. Our very detailed records show no change in frequency or number of seizures, an EEG taken some time afterwards confirms no change either and she now sleeps much better.
cheers

Andy
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Re: International Epilesy Day

Postby SamQ aka Ah! Q! » 13 Feb 2020, 23:27

Teaching assistants are much maligned, but for 'deep' needs, such as your daughter's, they are gold.

Good call, and respect for standing up to your 'consultant' too. They act in the patient's best interests, but realistically, they have only a synopsis of all the symptoms, not 24/7 direct experience; sometimes, not always, a parent's observations and CAREFUL, mindful, changes can lead to a better solution.

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Re: International Epilesy Day

Postby Woodbloke » 14 Feb 2020, 15:06

Andy, reading this thread with much interest and my recent sleep problems were as nothing compared to what your daughter is suffering. However, I would suggest her much improved sleep pattern has to be a 'good thing'; from my recent experience last year of sleep deprivation, it's not something to recommend - Rob
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Re: International Epilesy Day

Postby fiveeyes » 16 Feb 2020, 01:48

I cannot imagine what your daughter is going thru, but I pray success in this battle. :eusa-pray:

As the father of four daughters -no sons-I have great empathy.
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