Epilepsy Support & Advice needed - copious cups of tea at the ready!

[JustKeepSwimming]

Hi, I'm new to the SN boards but i know lots of you have seen/posted on my DS's EEG thread.

Attempt at brief history:

DS2 (16mo) 'normal' apart from sleeping lots from about 10months.
At 15months he had 2 'fits' in 2 days & 2 trips to a&e.
Then started 'nodding'/absences.

Had an EEG - abnormal result.
Had an MRI - bright spot seen.
Started on Epilim, at a quarter dose to build up slowly.

GOSH appt this week - very kind and helpful doc gave us lots of info, not sure we've processed it all yet.
An area about the size of a slice of a medium size tomato that did not develop in the womb.
Will not get bigger or go away.
Rest of brain should grow around it and take over whatever might have come from there.
His development is right on track and should continue.
He will not 'grow out' of it.
We can speed up the Epilim doses and get to the full dose next week.
Then give it 2/3 weeks. If no control, she wants us to change to Keppra.
If no control then she wants to discuss surgery.
(is prepared to discuss the keto diet first as she is a specialist in it & i am very interested in it)

DS2 seems to be getting worse recently, had another seizure this morning (only 30secs so not v bad), is certainly more tired, has big clusters of absences, is grumpy (previously never a grumpy baby) and so on.

His big seizures we were calling TCs but the doc doesn't think they are - looking at a leaflet from the hosp, think we could maybe call them Tonics. not really sure how to refer to them.

(sorry not brief at all!)

Anyway, all happened incredibly quickly, DH and I still in disbelief & shock. Though, we are trying to be positive and say, if we get control (with either drug) then we will just carry on as normal, thinking of it as something similar to diabetes/asthma. Doc was v insistent on not using it as an excuse not to do something.

Any tips, advice, support welcome.

thanks for reading this far!

Just wondering how the weaning is going? still doing well?

eleanor had the decompression - but there was nothing to actually decompress (!) so we are now waiting on them discussing AGAIN at the neurosurgery meeting with a view to invasive EEG and then onto resection - no idea what the time scale is but we are starting zonegran in the mean time - so i'm not expecting any news soon - grr - it would be nice if we could book a holiday or something!

Hi Nathard - know what you mean about booking a hol! We have already decided not to go ahead with our planned holiday to France in the summer as things are so up in the air with DS (see my update thread!!)
Looks like surgery isn't an option for us any more as there's no evidence that his seizures are focal.

Hope things continue to go well Justkeep. I often wonder how your DS is doing

Both,
JKSs DS is doing FAB! Continuing to go from strength to strength which is wonderful. I shall let her know you have been asking I'm sure she'll be straight over with an update

Hi, thanks FB for nudging me back over

Nathard - gutted to hear about the decompression not exactly working out, but really hope the monitoring & subsequent resection works as well for your DD as it has for DS. We put so much on hold/cancelled last year it was not fun. Still not really sure what we can manage to do this year so nothing is booked very far in advance, yet.

Fatzak - haven't seen your update thread, will look out for it in a mo.

DS is doing so well
We are nearly off Epilim, just one more dose tomorrow evening then we're done, yey

I have seen him do some weird movements, but nothing that is identifiable as a seizure so we are going with seizure-free for now.

He is developing so well, the first month post-op there was something new every day. Things have slowed down since then, but i think there was a bit of a plateau and now he's moving on again if that makes sense?

He's just started backing down the stairs and is making loads of new sounds, no words really yet (we have mama and dada which are cool) and we are hoping speech therapy can pull finger and see him soon, we currently have an April 7th appt...

We've also had some physio appts but nothing terribly useful.

And 'they' are arranging a Team About the Child (TAC?) meeting to discuss priorities and hopefully to come up with some sort of plan re education, though we have time on our side as he's not due to start school until 2012, but we'd like to get him into some kind of pre-sch setting at some point. Not yet as he still finds groups of children a bit overwhelming.

I am slowly adjusting to life with an SN child, and that may sound weird, but i didn't go anywhere with him the whole time he had spasms really as he was always asleep. Now i go places but he doesn't act 'normal' IYKWIM and i have to get used to that.

His hair is growing back but still patchy at the back near the scar so it's still obvious something major has been done which kind of helps in some ways.

Re sleep - well i've moved him back into his brother's room so they share, which i always wanted and it has it's pros and cons. DS1 goes to sleep later and wakes earlier than DS2 would like which seems to have resulted in DS2 sleeping a lot longer in the afternoon. Last time i posted he was cutting down his naptime, but it has gone back up again, to 3 or 4 hours. Means the afternoon is a bit of a write off at the mo. Still hoping he will cut down by the summer though - or i may split them up again and see if that helps.

right, long waffle sorry! Off to find Fatzaks thread

hi ya'll
just wondered if i can pick your brains JKS.
how long did it take you to get to surgery from referral? Were you under GOSH to start with?
the reason i ask is that i'm not entirely sure that sheffield have the organisational set up to actually get us to surgery any time this decade! We spoke to the epilepsy nurse the other day and apparently setting up the telemetry is more difficult to arrange than they first thought - something to do with the EEG provision being shared between the adults and kids hospitals. We will know a bit more after the neurosurgical meeting on the 12th of April. It was august that surgery was first muted and we are beginning to wonder whether we'd be better down at GOSH. Our neurologist is wonderful - he was the first person to do VNS watsits certainly in Europe possibly world wide, so he's very experienced and on the ball, what i'm not so certain is that the surgeons are very up to date with thinking on epilepsy surgery. So far it seems like they work on a 'committee basis' -it feels like no one is taking ownership of eleanor's case. i'm sure they can do a resection as well as the next person, but the whole logistics of getting her in to have the procedures seems like something they don't have to work out very often.
Anyway, enough about me.
how's everyone doing ?
JKS - hope the funny movements haven't come to anything. is he medication free now? I know what you mean about coming to terms with having a SN child. It's been a good week this week cos it's relatively appointment free. Last week was a nightmare - we are in the middle of statementing for nursery so lots of appointments there, waiting for new meds ( still haven't got the zonegran yet) and putting in a form for a blue badge. It feels like a full time job.

Fatzak - i'm sorry surgery isn't an option i'm going to go find your thread now ( if i can work out how to search this place !)
take care.
Nat.

Nat - off to bed now, will reply properly tomorrow

Right Nat, think i have 5 mins peace to sit down and reply properly!

We were referred to GOSH right from the beginning as all MRIs done on children at our local hosp are sent there.

So we were referred beginning of May 2009.

We saw the Prof/consultant there end of May.

Then we didn't go back until Sep which is where things went a bit wrong as we'd had telephone consultations with slightly random 'neurologists on call' as we didn't know precisely who to talk to and didn't give the right descriptions of his seizures as we didn't know what they were (we were calling them drop attacks, when they were spasms).

From Sep things sped up, we went in for the monitoring & op in Dec.

So, May-Dec = 7months.

The main delay at GOSH was booking the telemetry rooms too, though they are building new ones at the mo so that may help.

GOSH work very much on a team approach too, you have to meet with lots of diff people and they have 'get togethers' once a week to discuss cases as a committee. slightly frustrating but a good system overall i think.

If i were you i would ask someone, sheffield nurse? if you could have some kind of referral to gosh. We asked gosh if there was anywhere else we should/could be to be in a better place - hopefully phrased it better than that so we weren't rude, but you know what i mean!

The strange movements haven't come to anything, thank God! he still does odd things but they change and move onto something else so i think are just another form of 'stimming' and development.
He is off the Epilim, have spoken to Gosh this week, he will start his Keppra wean in June, most likely after we've seen Prof again, though we don't have an appt atm.
Scared about the possibility of seeing another Tonic sz but want to come off stuff if it's not doing anything.

We have a TAC meeting in a few weeks so will hopefully get started on education plans, though he's only just 2 so we have time.
We've put physio on hold for now as he gets more out of trampolining at home than crying at the physio sessions he's been to so far.
Have had 2 SALT appts which have gone well, and his speech is really coming along, he's trying to say garden & car & cat
And he is definitely understanding so much more of what we're saying too which is lovely.

He has chicken pox at the mo, his brother had it first, hopefully he'll have it as mildly too, so far just spotty but happy enough.

Lots of chocolate at the mo, hope everyone else is having a good Easter weekend

thanks for that - we'll see what the result of the 12th of April is.

really really pleased nothings come to anything, but sorry your little guys got the pox . We've just had it up here too - first eleanor then my poor little man who was six weeks at the time - still he was quite unbothered by it.

Tonics - know what you mean. we are seeing very few groups of spasms now - it's nearly all tonics, or myoclonics or absences.

physio - with you there. We rarely see our physio, except for the odd run of hydrotherapy. She gets far more from conductive education than she ever did from physio!

Anyway, have a lovely easter and thanks again.

Hello everyone, 6 months today since H's surgery, so thought I'd better update.

Firstly, H has been seizure-free since the surgery

He is developmentally delayed and has not quite regained everything he lost due to the IS.

But that's the only bad news. All in all he is doing fab

In the last couple of weeks he has brought his Gross Motor skills back on track for his age, just, but still it counts
This includes; kicking a ball, (even small ones) running, stepping up and down some steps on his own, climbing everything & everywhere, etc.

In the last few days, he has been working on his Fine Motor skills, by starting to feed himself with a spoon, and building towers of 2 bricks. He is still behind but working hard to catch up.

He can also wave hello & goodbye, nod his head for yes, bang a drum/cymbal/the bin! with a drumstick.

His speech/communication is his weakest area, and he is getting more speech therapy (though i'm not convinced it does much tbh). But he has starting making attempts at the beginning of words, 'nuh' for no for example.
He also has a few signs and has no trouble getting his point across, lol.

Mostly he is such a happy little boy and I don't really think we could have wished for more, certainly couldn't imagine how he is now in the dark days of last year.

He is weaning off Keppra, should be off it by the end of September which will be lovely to get rid of the drug chart!
Meanwhile he has started on an asthma inhaler which seems to have done the trick of keeping him out of hospital with his last cough/cold as he suffers badly from chest infections normally.

He sleeps a lot less, in fact we wake him after a 2hour nap after lunch now as he was far too lively at bedtime! He sleeps all night, though I am considering cutting his nap back a bit more as some evenings he's still a bit hyper for my liking!!

Think that's everything, how is everyone else doing? Nathard - hope your dates have been sorted.

Hi there -

This is a message of hope!

I am brand new to Mums Net and think it is brilliant that you are dealing with the subject of epilepsy here. My daughter was diagnosed with epilepsy aged two when she started having odd blinking and nodding episodes. The condition worsened and worsened until she was suffering six or seven pretty hefty seizures per day. No anticonvulsants worked for more than a day or two. When her neurologist first mentioned epilepsy surgery, I thought 'no way'. By the time she was eight and having grande mal seizures, wetting her pants and bed etc. my response was 'when?'.

Scans fortunately showed that the damage to her brain was local and in September 2009 she had a large part of her left occipital lobe removed. She has not had a single seizure since the op.

Obviously there were other problems - her peripheral sight was affected by the original brain damage (caused before birth) and she did have some learning difficulties but since the op, her sight it no worse, in fact, the absence of seizures has meant that she can cope a lot better. Her learning is improving by the day. She is in main stream school and has just got up to level 3 in most subjects (year 5). This is nothing short of a miracle. The most wonderful time in my life, I think, was the other week being able to take her to a Lady Gaga concert and knowing that the strobe lights, loud noises etc would not set off a seizure.

For those of you just beginning this journey into learning about epilepsy and watching it unfold in your child, I want to give you real hope. Trust in your consultant and even if they don't seem to be doing much but trying out drugs, try to understand that only time can show the extent of the condition. I was so impatient that I started trying the ketogenic diet at home after seeing it on the local news! Of course, not being a dietitian, I didn't do it right and poor old Abby was just very hungry for a few days and had to eat horrible eggy slop!

I am so grateful to Abby's consultant, Dr Livingstone at the Leeds General Infirmary, her surgeon, Mr Chumas and all the people who have given her the gift of a normal life.

Of course, she is not fully grown and we don't know what the future holds, but it is wonderful to see her happy and healthy after all those years of worry -

Hey all, I have to say reading this thread I have gone through all the emotions! My DS is now 10, v lively, happy little man. . . Has other complications too. . But after suffering a Stoke at 9 months when contracting meningitis he was left with frontal lobe epilepsy. . . It took a while for a diagnosis, and another 2/3 years to hit on the right medication for him. . . However (touching wood) we are currently just on Lamotragine, up until earlier this year it was Epilim
And Lamot. . Bit successfully weaned off the epilim and much better for it. There is light at
The end of the tunnel. . Just some of those darn tunnels are pretty long. . . And other times you come out of one to stumble blindly into another! Hahahaha. . . I'm in mid process of tackling education! Joy of joys !!! Wonderful posts though! Hand on in there an keep iling :0) jo x