Off Topic, but please read...

[Lullaby2010]

I am begging all of you to please sign this online petition to get a young gentleman an urgent medication review.

He is a 26 year old former weightlifter who led a very active and healthy lifestyle, who in 2004 was struck down by a severe seizure and has suffered from epilepsy ever since.

The problem is that his medical team refuse to change his medication even though it has not had any effect on manageing his seizures at all (which are now becoming much worse and more frequent). He has been on Epilim for 5 years and is now at an extremely high dose which is inadviseable.

Tonight Nicholas Rangeley lays in a hospital bed after 4 very serious seizures that lasted around 15 minutes each. His wife and children are inconsolable as the hospitals reaction was to offer to increase this medication yet again, even though it is not the correct treatment for him.

The family are desperate for help to make his medical team look at alternative therapies.

I have spoken at length with his wife and have created this online petition for people to sign to put an end to this madness and get Nicholas the help he needs, before it is too late. The further it is left, the more his chances of brain damage and even fatality from these seizures increase.

It will only take a moment of your time, but may mean this courageous young man will be around to see his children grow up.

As an epileptic myself, and personal friend of the family concerned, this is a topic very close to my heart.

Thanks everyone,
Best Wishes,
Lullaby xx

https://www.ipetitions.com/petition/NicholasRangeley/index.html

 

[StirCrazy]

Good cause, but just a tip: ipetitions really isn't a very credible site. You may get lots of signups but those that matter wont pay attention to it. Your best bet is to use media to get attention.

 

[Lullaby2010]

Thanks Stircrazy, I wanted to use the 10 Downing Street Petition Service but they're not accepting new petitions until Sept 7th and at this rate Nicholas could be severely brain damaged or dead by then. The seizures he had yesterday all lasted around 15mins each and took his oxygen levels to dangerously low levels, so much so that he ended up in resuss. We are getting various media involved as well, I just couldn't go to sleep last night without doing something, anything I could to help him xx

 

[Lilicat]

I am sorry to say but I don't think your petition will get him a meds review although he sounds like he does need one. Could you ask someone (wife/girlfriend/parents) to speak to his main doctor and ask why they choose to persist with a medication that appears not to be working? Ask them to explain in detail rather than fobbing you off. If you don't like the answers ask to speak to a neurologist, you have the right to have a second opinion.

Has he tried other medication in the past? Does he have any allergies / take other medication that limit his medication options?

It might be the case he needs a multi medication treatment, those need to be carefully balanced and monitored thought and there are no guarantees.

If after discussions with his doctor and neurologist you still believe he is not getting the care he should then I suggest you contact the charity Epilepsy Action who would be the best people to help.

I am sorry to say it might just be that medication may just not work for him, everyone with epilepsy has a different outcome, some people (myself included) take medication and that stops or dramatically reduces the seizures. For others though this just doesn't work and its heartbreaking.

I am deeply sorry for what your friend and his family are going through, I hope he recovers and is able to find a medication that works for him.

 

[Lullaby2010]

Thank you Lilicat, however I have some great news to report!

The fact that my support group got involved in the case and created a public awareness of the case has in fact made a difference and Nicholas's medication review was done today after the hospital insisted that his neurologist come in on his day off to get something done about the situation.

He is finally being weaned off of the Epilim and onto Keppra. It is such a relief to know that he is finally being taken care of.

The hospital were horrified to find out that Epilepsy Support Group were taking up the case and about gain national media support on the matter.

In answer to your questions Lilicat, Nicholas has never been on any other anti- epileptic medication and is not on any medication for anything else. The dose of Epilim he has been on is above the recommended maximum dosage and creating toxicity in his bloods. It has never had any kind of positive effect on his seizures, which have gradually got worse over the years.


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Changing subject how are you finding your epilepsy is responding to your pregnancy?

I went seizure free for 4 months but they've started up again tyhis past couple of weeks.

 

[Jemma_x]

Im so glad he got a medication review as this is a subject close to my heart aswell as suffering with epilepsy myself

 

[Lilicat]

Thats wonderful, I am glad he is on something that will hopefully be better for him. Is scary that they can be so narrow minded to keep pushing the same medication over and over to such a high dose when it is having no effect.
I have known someone on levetiracetam (Keppra) and he did very well on it, he was also put on it in combination with another tablet when other medication failed to help him. Hopefully it will do just as well for you friend.
He is lucky to have you there fighting his corner.



With regard to the pregnancy thing, its nice to meet someone who is the same situation. Its such an extra worry particularly as on the advice of my neurologist I am continuing with my medication throught the pregnancy. He considers it safer as long as I take a high dose of folic acid but I worry I am making the right choice. I also get a lot of rather judgemental comments, including someone telling me I shouldn't have a baby because being epileptic I couldn't look after it
I have complex partial seizures and absences, I haven't had a complex partial sezuire in almost a year. Unless I get overheated they are controlled well with meds. The pregnancy hasn't caused any more but I am only eight weeks so far. I have had more absences in the last few weeks than would be usual in that time period and that is a worry, but I am more tired and more prone to them when I am tired.
Morning sickness is a problem, I worry about keeping the meds and prenatal vitamins down. At the moment I get up at 4am, take them and go back to bed till I am due to get up to work. Seems to have solved the problem for now!
I am also concerned with the hereditary aspects of it, I have been told my child has an enhanced risk of having epilepsy. If it does it could have it in any form, mine is relatively mild but I used to work looking after people who at times had multiple serious seizures each day. I know its unlikely, epilepsy that serious is usually caused by brain injury but I am a worrier!

Sorry for the huge post. How have things been with you? Have you opted to stay on your medication? Did you get many ignorant comments?

 

[Lullaby2010]

I'm on Keppra myself, 2000mg a day, although in the first 12wks I managed to persuade my neuro to let me halve my dose due to it being such an important development period for the baby. I take 5mg folic acid a day which I have to take until giving birth. My Epilepsy is due to brain injury so hopfully will not pass on to my child. I get tonic clonics.

My 7yr old DSD's mother refuses to let me be alone with her even if H2B is only popping next door to take the newspaper round, and has told us over and over again how stupid and irresponsible we are for having a baby together. She says leaving a child with me is like leaving them on their own. Never mind the fact that I get warnings before a seizure hits so I'm able to ensure their safety first, and I'm also fully functional and back to normal within 10 minutes. DSD says it's not scary and I just look a bit twitchy for a minute then fall asleep. She also says she's old enough to play quietly till I wake up, especially as her mother goes back to bed for a couple of hours in the mornings and leaves her playing on her own. She also has a partner with very severe anger management problems who she leaves alone with her, but that's different apparently. Because he says sorry after losing his temper for no reason. Some people!

The way I see it, if I'm able to make sure the kids are safe, then what's the problem??? My neuro has no concerns over my ability with children, not least because I'm a fully trained childcare worker!

Still, each to their own. I've tried to explain my epilepsy to them and it's not my problem if they refuse to accept the facts.