Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

Tell me about it!!

Hope you are feeling better today. On way to see psychotherapist to offload some of my stresses.

I think she might need a gin or two by the time I'm done!

DS3 now has his orthotic shoe inserts, and the change in his posture and balance was immediately obvious. Which is GOOD. Lets hope it means he falls over less. Then I might be able to dare to walk him outside if I can get a Crelling harness to stop him running off.

(He manages to escape from all 4 sets of reigns I've tried. Leather ones with a buckle, those little life backpack reigns, cheap ones with a clip at the back AND a set of Tommee Tippee ones. I swear the kid is related to bloody Houdini!!)

And my effing bus is late so I'm freezing my tits off at yet another bus stop.

Hi Leonie, sorry I haven't been around. Period from hell accompanied by horrible migraine at the weekend, finally had my physio appointment for the CRPS yesterday and school stuff today.

Good/bad news is that I now have an NHS dx of CRPS, an absolutely lovely physio, an exercise plan and will be having regular physio appointments.

Had two episodes last night after a week and a day of none - so am more than a little p'd off about that, especially as I had to be at school for 9.00 this morning for dd's Easter Bonnet Parade.

Truth is, I am just not feeling very sociable and/or able to offer much advice and support at the moment. Sorry.

Last week's neuro appointment really knocked me down - even though I knew beforehand how it was going to go - and I'm still smarting. Pathetic, but true.

Sorry you are still having med problems. Hope you can work out a solution with your neuro soon.

And that's why they keep mooting NEAD for me - because it's not as easy as 'bung a pill' at me...

Not my fault Lamotrigine did nothing - i had no side effects either, so that's why they said it wasn't right for me.

Not my fault I was allergic to Epilim either.

Not my fault that Tegretol, while helping to lower the frequency of my seizures, started to affect my liver function - it's such a well known side effect that you have to have regular blood tests to check your liver function. I failed the third one when I woke up looking like Marge Simpson.

It's not my fault Topamax tried to blind me AND sent me loopy, either. It bloody worked on my seizures, I had NONE whilst on it!

Gabapentin helps, but I need something else (though maybe just a higher dose?) during the week prior to my period.

I HATE being a more complex case than they like.

Have you been on Epilim or Tegretol? I can't believe they would make you go to a 'different Neurologist' without at least trying you on those - they are very standard epilepsy meds!

As for the psychologist - even SHE was a bit puzzled why, given my childcare issues, that they were refusing to do the ambulatory EEG for me...she asked why they were being so 'difficult'. My answer - I don't know!

I am going to have 6 sessions with her, fortnightly to fit in with when DS3's dad is off work, as it at least gives me somewhere to offload.

On a brighter front...the SS thing? It IS to do an assessment of the DC's needs. Based on the visit that arose from DS1's dad calling SS.

I can't wait to thank him for helping me...

14 years I've been trying to get help from the CWD team, and all it took was my twatty ex saying that I was making things up about the DC's health, and me proving the REAL situation to the SW...

I almost wish I'd pissed him off sooner!

I can tell you why - Lazy Neuro. Like mine was.

Lamotrigine - 1st line.

Topamax - 2nd line.

Zowhatsit - 3rd line.

Not worked? See another Neuro or NEAD...

Ask the Neuro why you can't try Keppra. I've heard very good things about reducing the 'rage' if you take it with a particular B vitamin (can't remember which one though) and evening primrose oil capsules.

And ask why you can't try Tegretol too. What is there to lose at this point?

But please, don't make the same mistake I've made for years of letting it go wrt the epilepsy because of the stresses of dealing with DC's with SN's - it seems to be a guaranteed way to get slapped with an NEAD dx.

TheNHS has a long memory...