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Online forums for epilepsy support - not sure I'm in the right place

(23 Posts)
JustKeepSwimming Sun 23-Aug-09 21:39:12

Not dissing MN in anyway but....I was trying to find a specialist forum for E support - joined Forum4e but it's pretty quiet and i wondered if there was somewhere else i should be posting my questions?

JustCutAndPaste Sun 23-Aug-09 21:44:59

hi there I use the National Society for Epilepsy forum. It has a specific parents' section. It's slower than mumsnet (naturally) but there are some really helpful people there and it's so great to find other parents in the same boat as you. In fact with the DM column going on I am considering spending more time on there and less time on mumsnet sad (sob).

JustKeepSwimming Sun 23-Aug-09 21:46:13

Yes re the whole DM thing.

I guess i'm used to the speed of MN, there's always a response in, well 5mins grin, the forum4e site often has nothing going on all day.

so thanks will try that one

r3dh3d Sun 23-Aug-09 21:48:43

Would second NSE. [nod].

feelingbetter Sun 23-Aug-09 22:40:32

There might be a yahoo group you could try. I'm a member of an Infantile spasms one and tho its a bit American, the parents are unbelievably informed. I found it very helpful and have stayed a memeber there rather than move on to the LGS one.

TheDMshouldbeRivened Mon 24-Aug-09 08:54:43

POKWE - Parents of kids with epilepsy plus several yahoo groups aimed at the 'big' syndromes like LGS, infantile spasms, Doose etc

JustKeepSwimming Mon 24-Aug-09 09:09:04

Thanks FB & Riven - will look them up too (may end up on too many as well as MN!)

Can I ask an LGS question?

Would you know if it says wave patterns of 'approx 3Hz' is that clearly NOT LGS as it has to be <2.5Hz?

Or is it too vague to be sure?

(have asked docs just not heard back yet)

TheDMshouldbeRivened Mon 24-Aug-09 09:14:52

too vague. And as I learned, different neuro's require different conditions to make a firm diagnosis. So dd's neuro says she doesn't have LGS yet despite the classic slow spike and wave pattern hmm whilst others would make a firm diagnosis despite no clinical seizures. He also says there are 5 axis of epilepsy rather than discrete syndromes so they actually all shade into each other.
The message I got was 'synchronised pattern = bad' 'seizures = bad' 'the two together = really really bad'

JustKeepSwimming Mon 24-Aug-09 09:56:41

That's what I thought you'd say

I think it's something we are going to have to seriously consider. Fingers crossed the docs will turn round and tell us we are being silly.

TheDMshouldbeRivened Mon 24-Aug-09 10:31:24

fingers crossed too. LGS is a bastard and my biggest fear and now dd has the classic EEG pattern I'm petrified. If she has an 'off' day I think she is regressing sad

feelingbetter Mon 24-Aug-09 18:45:45

Well, just to cheer you, ever so slightly.... despite the rufinamide seeming to have little physical effect so far, DS has learned to roll over and over last week (falling off the bed on hols blush) and is vocalising in a 'conversation' pattern now. Even his vocalising seems to be developing more word like form and his trunk support is improving every day grin
I hate 'off' days too sad, but at the mo, its mostly good <keeps fingers crossed for us all>

JustKeepSwimming Mon 24-Aug-09 20:06:01

FB - that all sounds really postive, yey grin

Riven - LGS does seem to be a bastard, so much unknown about it too.

We are the same re off days, and re 'on' days too tbh.

H just now would NOT settle at bedtime, was up and shouting in his cot for ages so we brought him downstairs and he was happy running about....hmm we started thinking hey maybe the drugs have kicked in all of a sudden....<optimistic DH mostly!>

then he looked at me funny, and started dropping

so he's in bed now.

think it was just because he'd actually slept at nursery today.

oh and meanwhile, nursery tells dh (who picked them up today) that they've asked their SENCO for assistance with him shock without asking us first.
think DH was not entirely happy with them...

JustKeepSwimming Fri 28-Aug-09 17:59:28

well lots going on here:

lots of phone calls to-ing and fro-ing but news re H:
- Tues am, go in and register for MRI
- then go to Epilepsy Development Clinic & see a Neuro-Psychiatrist
- go back to ward for MRI
- go home
- Wed am go in for 24hr EEG (telemetry), stay in overnight
- Thurs come home

oh, & fit in a meeting sometime Tues with the Professor whenever suits us between appointments!

They are taking us seriously at last and things are moving.
there is a possibility of surgery within 2/3 months.

fingers tightly crossed for good results and fast moving appointments!!!

Otherwise, H is not on routine today, think teeth are bothering him.

How is everyone else?

TheDMshouldbeRivened Fri 28-Aug-09 19:07:39

'Epilepsy Development Clinic & see a Neuro-Psychiatrist'
woah. We want one of them! We dodn't even have a epilepsy nurse!

JustKeepSwimming Fri 28-Aug-09 19:12:02

It's at GOSH Riven.
what big hosp are you nearest for children?

we keep saying how lucky we are that we can get to GOSH (live in essex), they have had some not-so-fab moments recently with admin but treatment-wise i think they are fab (so far!).

JustKeepSwimming Fri 28-Aug-09 19:12:40

FWIW, we are meant to have an epilepsy nurse in our area but the post has yet to be filled......

TheDMshouldbeRivened Sat 29-Aug-09 07:42:24

Bristol. No epilepsy specialists or clinics at all. you just see a paed neuro as an out patient every 6 months. Despite dd having the severest type of epilepsy that always causes developmental delay. sigh.
There's not even anyone to teach us how to use paraldehyde.

r3dh3d Sat 29-Aug-09 08:51:36

Riv, the way it works at GOSH is they are very specialist in the "more than meds" area so tend to do a lot of surgery and run a keto clinic. So they have neuro psych because that role is part of surgery work-up which is a big chunk of what that GOSH team does. The prof specialises in those areas and I've not seen the same number of specialists working outside her team. She has specialist physios etc. too... envy because you need them post surgery.
But as DD1 turned out not to be a surgery candidate, we've been dropped rather unceremoniously and have no access to any of those services. hmm

JKS, telemetry there will be OK now - it's a new ward, used to be upstairs round the back in an absolute hell-hole, baking hot in summer. Now it's a separate telemetry ward and much better equipped. Bear in mind that LO will be wired up to a wall for at least 24 hours. Quite possibly longer. Your challenge is having someone hands on a) to entertain him and b) to keep his hands off the electrodes, for that whole period. And if the results are inconclusive they'll just add days... You'll probably have to do shifts.

TheDMshouldbeRivened Sat 29-Aug-09 09:03:39

wish we had this. When dd had botox there were no joined up services for physio so we didn't get any. And keto diet is run by one dietician by phone.

JustKeepSwimming Sat 29-Aug-09 09:43:49

Riven - that's so awful about the extreme differences in care/services available.

r3dh3d - thanks for the extra info. so they are quite keen on surgery at Gosh then? we haven't felt pushed into it or anything but way back at the beginning, after i'd just seen Do No Harm, i was anti it and wanted to try the keto diet first. but now i'm keener on the idea of removing the dysplasia.

not keen on the idea of them adding days!!! 24 hrs seems plenty long enough to try and entertain him 'tethered' they must put something over the electrodes though?
and as he has episodes all the time hopefully they'll see enough in 24hrs?

Riven - just a thought, Plymouth Hosp has more keto support, could you travel there/deal with them on the phone?

r3dh3d Sat 29-Aug-09 10:09:27

Well, I guess it depends on the seizures. We've always been booked in for 3 days (which is really 4 days as you start recording Monday lunchtime and finish Thursday lunchtime) and then if they find what they need by Tuesday lunchtime they boot you out after 24 hours. But maybe that's not the same for different seizure types. Worth calling the ward (I think it's Tiger Telemetry) nearer the time; the ward sister or whatever was helpful on the phone.

The other thing - discuss with the prof up front whether she wants to do a meds withdrawal. It's fairly routine on the telemetry ward and they tried to do it to DD1, I had to get them to check with the Prof who of course wanted no such thing but there was quite a bit of arguing just to get them to check hmm. Depends on who you get but the on-duty docs on Telemetry can be a bit .. er .. arsey. lol.

I don't know about "keen on" surgery. DD1 has a condition where they routinely do a hemispherectomy in about 70% of cases. Have done for years and it's pretty successful so they were very much "ok let's start the pre-surgery investigations". Which I was OK with because DD1 had spent a fair bit of time in the paed neuro ward in Tooting and that's all post-surgery and the whole thing was much less scary as a result iyswim. I'd seen a lot of kids wheeled in after brain surgery and whining about the rotten hospital food just hours later! I think they will only operate if they can't stop the seizures any other way - the reason we got dropped from the prog was that at the time of telemetry DD1 was on top form and reasonably controlled by meds. Not always the case, but they didn't catch enough on telemetry to justify surgery. Which I suppose is a good sign - even though she has a routinely operable condition they won't operate unless they feel they have to. I suspect also that the Prof has a very good feel of the risk/reward balance of operating on different kids with different MRIs, conditions and seizure profiles. The only criticism I'd have - and it's a general "feel" I get of GOSH not just this dept - is that they have a tendency to prioritise the "ill but cognitively unaffected" cases over the learning disabled. I get the slight impression DD1's Epilepsy is taken less seriously because if it affects her developmentally - well, it's not like she has a lot to lose, is it? Possibly I'm being unfair. They are very busy, and very important and all of that.

It will be your decision in the end, I'm sure. If he turns out to be a good surgery candidate you would still have the option to say - can we try keto first? But you have to bear in mind that some of these surgeries have a much better recovery the earlier you operate, because the brain is still developing and can rewire for any loss of function more easily. So there could be a down side to putting it off. But they'll talk you through all that exhaustively, I'm sure.

JustKeepSwimming Sun 30-Aug-09 06:40:14

Thanks for so much info r3dh3d

Questions for first thing Tues morning (sodding BH Mon getting in the way!):

Does Prof want meds withdrawal during telemetry?
H's admission time for MRI is 9.30am Tues, the paperwork says no food from 3.30 and no water from 7.30 but...he is checking in at 9.30 then we are going to the development clinic for assessment over there for the morning, we know his MRI is not until the afternoon, so can he eat and drink until later times?
(from out prev MRI experience here he should be able to)

Actually need to try and ring someone today/tomorrow (should have tried yesterday really) as the timings are so close. he will not be a happy chappie on no breakfast!

And how is your DD now? would you 'reapply' for surgery?

I think from all i've read now we are keener on going for surgery, and i'm liking the idea of getting rid of the bad bit <naive & simplistic emoticon>!

Any tips on what to take for us & him (he's 1 btw)?

JustKeepSwimming Sun 30-Aug-09 17:29:54

bah, typed out a post and lost it!

anyway, he can have breakfast on Tues grin

food until 7.30 am, water until 11.30.

Just have to hope everything goes to plan & they get lots of good info...

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