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

She then said that she was alright, this happens a lot, she would be fine, and she tried to sit up. She seemed very woozy. The nurse told her to wait, and for once she did as someone told her, which isn't usual cos usually she would have just got up then and gone home to rest, so I knew this was worse for her than usual.

Me and the nurses then helped her into a wheelchair and took her to the recovery room. This took about 10 minutes.

In the recovery room when she was still in the wheelchair she had about 5 more seizures quickly after each other. Her eyes rolled back in her head again, her head slumped down and forwards and the nurse had to hold her head up to keep her airway open.

Her tongue lolled to the left and she was groaning in a droney way.

Each of these seizures was about 1-2 minutes long, with gaps of about 20 seconds between each one.

Eventually her muscle tone improved and then she retched and vomited phlegm.

We were trying to get her on the examining bed in the recovery room and she was quite abrupt with us, telling us to "just get off me, I need to sleep" or something like that.

We got her on the couch where she was only semi awake. She complained of being thirsty, drank some water the nurse got her, and apologised to the Gynae doctor for making his clinic run late.

The nurse asked her if she was still in pain from the procedure and she complained of stomach cramps. The nurse injected her with Buscopan and gave her 2 paracetamol suppositories. Couthy then fell right asleep for 1.5 - 2 hrs.

Altogether this started at 10.45am, and she didn't wake up until around 1.45pm.

Apparently this description of how I was during each individual seizure is what I'm like during every seizure.

The tongue lolling to the left thing, and my head always slumping to the left, and the 'slurpy' breathing thing that happens with most of my seizures (according to Ex & DD & DS1's written accounts of a general overview of what they see when I have a seizure) concerns me.

If all of it is left sided, then surely that points to a problem with the right hand side of my brain, maybe right TLE?

I can't see how it would happen like this from NEAD?

So, the nurses asked me before I left to see my GP with a view to trying to ensure that there is LESS chance of me having seizures whilst in recovery when I have the procedure done under GA.

So I go to see GP, armed with knowledge that probably adding an adjunct AED for the week before my surgery would probably help to avoid that situation. He tells me that he can't do that without talking to a Neuro, and he would contact the local Neuro ASAP. At this point I still didn't have my op date.

He says that in the meantime, I can raise my dose of the Gabapentin to 1500mg/day, as that's all he can do, and he waves me off with an additional Gabapentin prescription.

So I do as I'm told.

Get procedure date, contact surgery stressing the urgency of GP contact with Neuro.

Surgery assure me that it will be done in time.

It's not.

I have my op, luckily not one seizure after the general, and far from staying in overnight, I'm discharged home. Now the nurses say I'm fine to go home, I've had no seizures etc. so I get sorted to go home, book taxi etc. (Ex was coming with me, so wouldn't be alone).

Discharge papers turn up - form says I'm leaving AMA, and I have to sign it. Taxi already booked, so I think fuck it, I feel fine, I'd rather recover at home. So I sign it and go home.

Fast forward to DLA reconsidering my claim.

On phoning them & finding out why, and that it's because of the GP's letter (which was dated 16/01/13, but didn't arrive at DLA until 10/03/13...shows just how shitty my GP surgery is at doing their paperwork - think my bus pass form that took 5 weeks to get them to get around to as well!), I start doing some research.

Ring GP, and have a telephone appointment with him yesterday, where he claims his letter to DLA DID say that I have 'fits', and he HAD to send the Neuro letter from 2008 that dxd NEAD, as it's the most recent consultant letter. And that if I wanted him to fix this, I should hold off the appeal for DLA (you can't, dumbarse), see a Neuro, and see what they say.

I explained on the phone that it doesn't work like that, and I have just 4 weeks to PROVE to DLA that I have seizures and it is badly affecting my quality of life and how independent I am able to be.

GP then told me in the telephone appointment that he is happy to provide me with a sick note that states that I am unable to work, an open ended one. I tried to explain to him that a sick note won't make any difference to my DLA appeal.

So, I do more research, find out the usual protocol, and got angry. My icy-calm exterior type of angry!

I write a list of questions I want to ask the GP, and also get the fucking witness statements the GP asked for.

So, I ring for an appointment.

Get into the appointment, and ask the GP to copy the witness statements (no facilities locally to do so, no library, no shops that do it).

He waves his hand dismissively and says "oh receptionist can do that" and turns to his computer.

I say that actually, I have a few questions I'd like to ask, to clarify a few things.

My list of questions :

Q1) If my dx is NEAD, why am I being prescribed Gabapentin as an AED?

"Gabapentin is used for other things besides epilepsy, so it is being prescribed for the NEAD"

I told him that AED's aren't the usual treatment for NEAD, usual treatment protocol is referral to a psychotherapist.

Then Q2) If it isn't epilepsy, then why is it that they Gabapentin works to start with, then seemingly my body gets used to it, and my seizures worsen? Surely that shows that it's more likely to be epilepsy than NEAD, if AED's help, without any psychotherapy?

He replied that he didn't know because he was just a GP, not a specialist.

This then jumped me to my Q3) If I do have NEAD, rather than epilepsy, why is it that 4.5 years AFTER my supposed dx (which, btw, shouldn't be dxd without a vEEG or another type of longer term EEG monitoring, to fully rule out epilepsy), I STILL haven't been referred to a psychotherapist?

His answer - "well, I was never told to do that, I'm just a GP, not a specialist, and the letter the Neuro sent me said nothing about psychotherapy".

I said "Surely as a GP, you don't just get a dx, and then leave that dx with no follow up treatment, so when I was 'dxd' with NEAD, you should have referred me to a psychotherapist?"

He said again that he "hadn't been told to do that".

I asked him if it was standard for him to leave a patient without the correct treatment for their dxd condition.

At which point, his demeanour started to change, and he took on a more aggressive position, leaning forward in his chair.

I then asked my Q4) Why is there such a hormonal element to my seizures? Why is it that the amount if seizures I have more than doubles in the week before my period? Surely that told us that it is catamenial epilepsy rather than NEAD?

He replied that that did sound possible. In a grudgingly conceding way.

I also pointed out that my seizures stopped totally for the whole time I was pregnant, the whole time I was bf, but literally AS SOON AS my periods restarted, my seizures came back.

Oddly, at this point, his eyes seemed to flash with almost 'recognition'.

Then I asked why I had been given a diagnosis of NEAD rather than epilepsy, without any form of longer term EEG monitoring, as Neuro's are NOT meant to dx NEAD without that?

He then got into the fact that I hadn't gone for the vEEG that the consultant in Queens had told me to, and that it was impossible to treat me because I was non-compliant.

At this point, things took a turn for the worse. I explained that staying for 4 days, 3 nights 60+ miles away was just impossible in my situation, and that I HAD suggested an alternative to that Neuro of an ambulatory EEG, that would confirm that it was epilepsy OR rule it out, at which point I would be perfectly fine with a dx of NEAD.

At this point, he blew up, and shouted at me that "You don't get to choose which type of test we do, this isn't some pick and mix shop, Go and book am appointment with Dr. X, he makes all the clinical decisions for the PCT, ask HIM for this test, see what HE says"

Which made me cry. I'm SHIT in situations like that, and the minute I get frustrated, I cry. Every time. No matter how much I don't want to.

I pointed out to the GP then that surely it was negligent to accept a dx (of NEAD) when the differential dx (epilepsy) hadn't been PROPERLY ruled out by vEEG or ambulatory EEG.

The GP responded by saying that I chose not to have the test, so what could he do?

I explained, in tears, again, how impossible it was to get the childcare when 3 of my DC's have dxd SN's.

The GP then said, in a menacing tone "how do you manage to look after your DC's if you are having seizures then, surely it's not safe for them?"

I explained that my Ex was at the other end of a phone, and if I had a seizure that rendered me totally unable to look after the DC's, I phone him and he comes up for a few hours until I've recovered enough to carry on, after a sleep.

He then said "well, if he helps you, then HE can have the DC's while you have the test"

I explained that he was only the father of the youngest two DC's, and he would not be able to cope withot me with all 4 DC's, for 4 days / 3 nights. (Ex admits he can't, he's never even had his OWN two together on his own for more than one night yet...)

So the GP said "Well, leave them with your family then". And I explained that my Mother isn't suitable to left in sole care of my DC's, if she wasn't capable of being in sole care of me as a child...

So he said "Well then, Foster Care while you have the tests done, if that's the only solution"

I replied that I was NOT willing to involve SS in my life and put my DC's into 'voluntary FC' just for a medical test when there IS a perfectly good, viable alternative that would still enable me to care for my DC's.

At this point, he picked up the phone...

My first thought was FUUUUUUCK, I ask him if he's negligent, and he's phoning SS to get me to back off!!

Which scared the SHIT out of me...

So I ask if he feels his behaviour was negligent, and he threatens me with SS...

I asked him who he was ringing, and he refused to answer.

I asked him again, and he refused to answer.

So I told him that I did NOT give him permission to ring SS and 'request' some help for me, and he snapped at me that he was ringing the practice manager. The practice managed cane in, and my Dr turned to her and said "take her out if the room, I've got other patients to see", and she took me into another room.

I'll update on what happened with the practice manager tomorrow. Well, later today tbh!

My biggest question right now is why the clinical decision maker for my PCT is now seeing patients for 3 hours a week at my local surgery.

Is my GP under some sort of supervision??

And if he is, how fucking unlucky can one person be?! First my GP at my old surgery ends up struck off, and then I end up with another GP who is ?possibly? Being investigated, and IS negligent at best...

WTF did I DO in a former life??!!

All I want is the CORRECT dx, and the CORRECT treatment for that dx, is that too much to ask?!

I don't give a pig's bollocks whether it is epilepsy or NEAD, the effect on my life is the same.

What I DO want is the correct tests to rule epilepsy in or out, and the correct treatment for whichever of the two it is.

Too much to ask of the NHS?

I don't HAVE the option of going private.

Going back to bed now! (I feel asleep earlier, slept from 8.30pm - 1.30am...so more sleep than I'm used to, as Ex has DS3 downstairs and did bedtime for the older ones for me)

I can't remember the FIRST person who prescribed me Gabapentin. I was ALREADY on Gabapentin when I saw the flashy doc at Queens.

It was EITHER the GP himself, or the Neuro at the private hospital - but I don't recall him prescribing ANYTHING, so my guess is that it was the GP when I had to stop taking the Tegretol because of the liver issues and jaundice...

I'm NOT 'anxious' though! Only frustrated and irritated that me and my DC's can't get the medical help we need.

Oh, and get this - my GP's practice has a 'counsellor' attached to them. I've had a phone call asking me to contact them. What's the betting that they are going to try to 'placate' me with some counselling sessions?

They did that round about the time is seen the flashy Neuro from Queen's too, actually. But she ISN'T a psychotherapist - she's a counsellor.

AND to start with, they only offered be 6 sessions. I had DS2 as a preschooler then. The first two appointments were ok, but after that I had issues because of school holidays and not having childcare. And then they changed the time if the appointment so that it would have meant I couldn't have reached my DC's school in time for 3pm...

I'm NOT being fobbed off again!!

I give the hell up!! I've tried umpteen times to get hold of this 'counsellor', as she stressed it was urgent, but am never getting an answer.

My HV told me she would call me back before the end of YESTERDAY, and all I'm getting is her answerphone on the mobile number, and her office have left a message this morning and a message just now.

The thing is, without the HV telling the GP practice manager that there IS no answer to the lack of childcare for me to have the vEEG, the practice manager isn't going to push for me to have an ambulatory EEG.

(Can I have yours, Moose?!)

This counsellor ISN'T a psychotherapist, and I'm not going to see a psychotherapist UNTIL epilepsy has been FULLY ruled out by an ambulatory EEG.

I'm happy to admit it's psychological and NEAD just as soon as they have done some sort of long term EEG that shows beyond a shadow of a doubt that there is NO brain wave issues that remotely point to epilepsy. And I'd like an MRI scan too.

At that point, if there are no findings that correspond to epilepsy, I wish to be sent to a QUALIFIED psychotherapist.

However, if there are any findings that might be consistent with epilepsy, I want a referral to the new local Neuro we now have.

So, what do I want?

1. An ambulatory EEG, preferably for the week before my period is due.

2. An MRI scan.

3. Depending on EEG results and MRI results, I either want a referral to the new local Neuro, OR a referral to a QUALIFIED psychotherapist (NOT a counsellor).

Too much to ask for?

Couthy, I don't know what to say - other than I think you had the GP bang to rights and he knew it, hence the sudden aggression and upscaling your complaint to the Practice Manager. I think he was probably worried that he would insert his foot in his mouth even further than he already had if he said anymore and could already have been warned by PM about not saying anything that could go 'legal'.

You don't deserve this treatment and I wish there was something I could say or do to help.

I'm tired now, DS3 has been awake since 5am with no nap. I'm shattered.

Still no call from the HV, still no answer from the counsellor.

Leonie, not everyone gets the side effects, let alone badly and harsh as it might sound, now you know someone who has had their eyesight affected, it is statistically less likely to happen to you.

But you know that anyway really, you're just having a wobble.

Had ds1's IEP review earlier.

Hilariously they had to climb down and say that checklists do not work with ds1. Which is exactly what I told both them and the LEA when they snuck it into the statement after we'd already agreed the final copy.

They also finally grasped how his diary is supposed to work and his teacher was visibly relieved, because it made absolutely no sense at all the way they had them doing it up until now.

Other than that the IEP is staying exactly the same (can't be arsed to even pretend to work with them on strategies at this point) and they are going to contact the indie to arrange an AR time that they can definitely attend. Only thing I thought was a bit off was that they said LEA Officer won't be attending, but will be informed when it is taking place. I'm not comfortable with this, given the battle we've had this year, so dh is going to have a chat with her and see if she's willing to attend.

Need to finish packing for ds2's trip and have a meeting about the new Grammar SAT tomorrow and I am still bubbling with rage under the surface about yesterday. Can't wait for the weekend and am positively dragging myself to the Easter holidays now.

I have been the only person the manufacturers knew of to get permanent sight damage from Topamax - the handful of others the world over had temporary sight problems that reversed on cessation of Topamax.

So I wouldn't be too worried - I'm just VERY unusual!

I have no experience of epilepsy but stumbled on this by accident - OMG shocking that they are not helping more to get a proper diagnosis. :( Wankers!

I now know why my HV didn't get back to me yesterday and hasn't been answering my calls today.

Despite her being my HV yesterday, suddenly today I have a new HV that I have seen in clinic before and REALLY don't get along with.

I asked why she was my HV yesterday and not today and got told 'we have swapped a few things around in the office'.

When I asked if my HV had asked to be removed from my case, I got told "I am not at liberty to disclose discussions that took place in our office today".

I then asked if other people's cases had also had a change of HV, and got told "I am not at liberty to discuss other people's cases with you".

So in other words, NO.

This is going to fuck up DS3's ADOS assessment in May. If I have a VERY unsupportive HV, trying to obstruct the process, he's not going to get his dx, is he?

Why are they doing this to us? I'm ttrying to hold in the tears till I get in.

The new HV is the same one who denied for 5 months about DS3's dairy allergy and didn't tell the GP like she said she would...

Like I said, obstructive and I've already proved her wrong once because his dairy allergy was proven by skin prick tests done by the paediatric allergist...

Fuxake.

Maybe the DC's would be better off in care. Maybe then they would get the help that they need. Because I'm at a loss as to what else I can do.

I'm branded a non-cooperative nut job without even proper clinical tests done, my HV asks to remove herself from my case simply because I ask a seemingly innocuous question...

"My GP surgery practice manager has asked me to ask you if you have any suggestions as to what I can do for childcare for 4 days and 3 nights because they want me to do a vEEG. Do you have any suggestions? The GP suggested voluntary foster care, but I'm not willing to put my DC's in VFC for the sake of a medical test when there is a viable alternative in an ambulatory EEG that would be possible to do whilst I care for my DC's."

Old HV response? "Well, I can't think of anything, and saying VFC for a medical test is laughable, because there just isn't the FC's available to do that, is there?!"

I then explained to old HV that the practice managed had asked for HER to ring and tell them this, and she said she would do so and contact me before the end of the day (yesterday).

This is just breaking me.