Persistence

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stacey

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Hi

i have been posting lately about being extremely frustrated with the hospital because they havent been listening to my concerns.For those of you who dont know....

My son xavier has tuberose sclerosis complex and also has major behavioural and development problems as well as 4-10 absence seizures a day.

He is currently on 3.5ml of keppra twice daily, 1/2 tab frisium morn 1 tab night and also 1& 1/4 tabs Tegretol CR tablets.

I have been fighting with them because i feel that 3 meds for a 5 year old is a tough thing for his small body to take and i have expressed my concerns to the doctor previously and it seems i was fobbed off.

I put in a complaint to the hospital yesterday and i received a call from them today and i spoke to the epilepsy nurse.they said that they would talk to the doc about cutting back the tegretol tablets until he was weaned but that they would have to up his keppra, i dont like that either but i'm trying to fight one battle at a time and i figure that once this is done i can look more at that.

I am also happy because they are gong to change neurologists for me because i dont believe the one he has at the moment is being objective.

Anyway i just thought that i'd put it out there that persistance can pay off so dont let them get you down!!!
 
A new neurologist! Hopefully he/she will have some new ideas about medication too!
Way to push on through!
 
stacey

I am glad to hear that persistence is paying off for you and I hope it keeps working. Glad to hear you are getting a new neurologist hopefully they will have more interest. At the moment I cannot say persistence is paying off for me. Hope all works out ok.
 
stacey said:
I am also happy because they are gong to change neurologists for me because i dont believe the one he has at the moment is being objective.
Click to expand...

Is this new dr. a pediatric neurologist? Are there any epileptologists in your area?
 
Agreed. You always have to fight on. It's hard for me to convince myself to keep going but I do. Always seems to work out eventually.
 
stacey said:
I am also happy because they are gong to change neurologists for me because i dont believe the one he has at the moment is being objective.
Click to expand...

Music to everyone's ears - congrats on that Stacey and good job on the persistence. You're so right too - I think three meds is too much for me, can't imagine how I would feel as a mom with a little one going through it.
Best of luck and HUGS.
 
Good job -- it can be hard to push back against doctors.
 
yep..

you gotta fight for your right - too XXXXX (leaving the XXXXX blank as so many words we can fill that with!)

hey, if it was thier own kids, what would THEY do in YOUR shoes....

Well done proud Mama!
 
Hi guys

Thanks for the support it's always lovely to know that there are people on our side .Fedup- what's happening at the moment then?

I think the next neurologist may be a paediatric neuro because I've never heard of a epileptoligist in Australia especially for kids :D
 
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