Blood tests with tegretol users

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stacey

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Hi everyone

My latest update for xavier is that they have upped his meds yet again, he is now on 4 meds- keppra, tegretol CR, frisium and tiagabine.

Thankfully he is getting off the keppra slowly because I honestly got such a shock that a 5 year old could have so much rage and aggression. Now I'm pleased to say his manner has improved markedly. Unfortunately he is having more nocturnal seizures and in result is he requires a sleep during the day. I am going to have to talk to his school to advise them if the changes and see if they can let him rest during the day at some point. Poor kid :(

So as I was talking to the epilepsy nurse at princess Margaret hospital she said that it wasn't urgent but I need to get a blood test to check the levels of tegretol in his system. This was advised by a separate neuro because the one xavier has( I wasn't able to change neuro)normally was at a conference.

I have has my own personal experience with tegretol and had heard that they are supposed to check your liver and kidneys but the neuro never did for me. Am I not been given the whole story then and does that mean that I should be more worried because I feel like they don't want me to know something?

It makes me wonder if they are making it sound like its not important so I don't panic but then if there is something wrong:ponder:

Thanks for listening guys
 
I'm surprised that your Doctor didn't inform you that you needed to have regular blood tests done. I know certain Anti-epileptics do, but not sure which ones. I would be pretty confused/irritated if they disregarded telling me something that important. Hope Xavier starts doing better though!
 
Hi muay

Yeah that's why I'm so confused about it because I understood that it was supposed to be routine testing but they never did it with me.

He has slept today for a few hours already and it's a risk of him not sleeping right later.
Catch 22 too much sleep he won't sleep later and then he may get a seizure from the lack of sleep .

Thanks for your thoughts :)
 
It does say regular blood tests do have to be done on every site I see. So that is odd. I hope he explains why he left that out. Hope he gets some regular, sleep. Probably not easy with all the pills changing and what not. Best of luck.
 
My almost 21month old is on Tegretol, has been since I think around 15months. His Nureo has never said he needs to have regular blood tests to check liver and Kidney function. He has had a couple of blood tests since starting but one was for metabolic issues, done when he had his MRI and LP at 18months and then yesterday he had another lot of bloods done checking to see if he has a mitachondrial disorder and also for arthritis. Well ask his Paed when I see her next week re this as we don't see his Nureo until Feb after his next MRI in Jan. We are in contact with his Nureo at least once a month to give him updates, or earlier if we are worried so I might ask him in our next update as well.
 
Forgot to say that the chemist did once mention to us the we have to be careful giving him paracetamol regularly for more than 24hours as it doesn't work as well due to the Tegretol and it also can affect his liver due to the Tegretol.
Thanks for the info.
Donna
 
hi

thanks Donnajane i guess i just need to know what the hell is going on here, if it should be done as routine,there is something really wrong with the neuro.

god i feel like i wanna explode with them!
 
Hi

Thanks guys for your advice, I have an apointment with the neutro on Monday for my younger son so I'm going to ask why it hasn't been a routine test.
 
I've been on Tegretol for 10 years & my local neuro used to order regular blood tests for the Tegretol.
I'm currently going through an epilepsy clinic in the city & the neurologist I see at the clinic hasn't ordered any blood tests for a while. I don't know if that is because he was happy with the last blood tests I had done or because he is currently slowly taking me of the Tegreol.
 
Thanks for the info. I will be making sure I ask re bloods for my little man. Tegretol is helping but he rarely has any days without a couple of events and his nights are so how do I say it "active". I know it is a trial and error with meds but its so hard when he is so young and not able to tell us whats going on.
Thanks again.
 
i was told about having regular blood tests before i was given the tegretol. when i said i was ok about it they told me to just make an appointment with my doctor about every six months
 
Hi guys

I'm actually thinking maybe an idea for me is to speak to the paedetrician and see if each time I see him we can organise a blood test and because I see him about every 3-4 months that may work out good, plus it's a separate hospital so they may be more proactive in xaviers care ( I hope anyway :) )
 
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