Neurology update

Well yesterday was interesting!
Joshua wanted to go to King's Lynn to look at trading in his DSgames and DS Lite for a DSXL..hopeing the screen would lend itself better to enlargement and enable him to continue being a Gamesconsol addict!

We managed to find a fantastic parking space even if we did have to pay in the disabled spots!

Not to far from the centre and Game was not too far along the road either....cutting a long story short here because the unhelopfulness of one shop was totally offset by the extreme helpfulness of the other and Game won his money!

I had managed to lose the building society passbook so had to make an emergency call to the Building Society to put a stop on the account so we didnt lose all our holiday spending money to the finder...I usupect the book is somewhere in the house and will be found eventually but I feel happier knowing it is secure now!

Deffinietly in need of a sit down and a cup of coffee by this time we find a lovely friendly wheelchair accssible cafe and indulge in hot drinks...well except for Joshua who had coke!

Across to a few Charity Shops who wanted far more than I was willing to pay for holiday clothes a size larger than I wear usually. Comfort Eating has taken it's toll on my wardrobe and I cant get anything of my summer stuff on!

So we head back to the bus....lovely moment when our Carer shouted out I see our bus!!!!! Yep Sarah is home and part of the family again! LOVE IT!

Off then to Matalan...Yeehaaa I love Matalan for the girls clothes and Eve loves their Pretty Dresses.
Unfortunately as we enetered the car park Rosie entered a Tonic CLonic Siezure....it was a really long one for Ropsie and we couldnt just stop had to get out of the way intot he back and find the Diazepam...undo the straps on the chair and Hoik her out to actually administrate! There are real draw backs to being allergic to Buccal Midazolam! Thankfully she did stop fairly soon after administration and 5 minutes of Oxygen later we were able to head off into the shop. ROsie dozing and resting as we went.
We found some good stuff! Matalan had a half price sale on much of the stuff we liked so Rosie Eve Christina and Mum did very well...Mum managing to get clothes new for less than the charity shop price!

And so we headed home! Via Kentucky for a bargain Bucket to make our trip complete!

Swapping a Sarah for a Bethan at the Hasnip house we arrived home at 2.35 just five minutes later than we had aimed for not bad!

The afternoon passed swiftly I collapsed in a chair and let the others put stuff away, Joshua played on his new toy, Christina watched TV with Eve and Rosie and Bethan sat reading book on the swing outside and ducked inside during the thunderstorm to play in Rosie's room. Eve was very quiet and I knew really she needed her ventolater but I was just too tired to go upstairs....Eventually it was bath time for Rosie and then we decided to Bath Eve before putting her to bed with her much needed Vent. But just as we got her onto the bath aid, her twitches turned into a tonic clonic seizure. Eve has had a couple of episodes that I have not been sure whetehr they were just lots of twitches or a TC....This was a TC and the others I really dont think were! It only lasted 45 seconds but left her wiped out, she did enjoy the relax in the warm water but was soon sound asleep on the ventolater in her rooom.
A really funny moment as we connected her to the ventolater and the CD she likes to lsiten to changed song to.......

Breathe On Me Breath of Life!!!

Very Apt! I think Eve really agreed as she giggled then closed her eyes as the ventolater took over her breathing for her!

And so fast forward to this morning when we had the Neurology appointment. Dr R is brilliant, Really listens and is really interested. I was not too impressed though to learn our Pead was not available this morning, and another, Dr H was there instead. Dr H was Rosie's Pead when we first moved here, He was not a very nice Dr for Rosie and never listened to us, refused to refer Rosie to the nEuro as he didnt agree with his suggestions. We requested a change of Peadiatrician and Dr H will now not even put his head in the room when either of the girls are on the ward! I was very unhappy he felt a need to be present!

Anyway we carried on.
I have been wanting to try to reduce Rosie's Epilim for a long while. Dr R agreed to reduce it down by 200 mg twice a day in small stages two years ago but it has stayed there ever since, whenever a change has been deemed necesary it has always been the Keppra that has been increased and made the difference. So I had wanted to discuss this as an option again today. The big Seizure yesterday made me think it may not be such a sensible option. However Dr R was willing to discuss it anda greed with me that it could be possible that it was the Keppra that was holding her so it was worth a slow reduction and see how she goes. So we now have a plan to reduce it down and out over the next 4 months. Any problems and he is just an email away!
We talked about the agitated nonconvulsive seizures. Again trying to establish if they were deffinitely seiazure or hormonal/reaction to pain as they happen around her Monthly Cycle....even when her Cycle doesnt quite happen. We talked aboutt he difference between behaviours that are distractable and where we can interact with her and make a difference they are totally different to the episodes that are not distractable and not intereactable with. We talked about how before Keppra these behaviours would sometimes carry on for 72 hours without stopping, now they happen for hours at a time but do reduce with Clobozam. The agreement was reached again that Seizure is the most likely answer.

So we moved on to Eve. The fact that Eve's Myoclonus has now manifested in a Tonic Clonic gives an indication that there is progression, measurable in her disease. The drug she is on for her Myoclonus is not the best treatment to be on as it negates the use of rescue medication for the Tonic Clonic Seizres. and is in itself the rescue medication for prolonged episodes of Myoclonus so needs to be removed as a treatment to free it up for a rescue.
So we are going to reduce that slowly over the next 3 months and add in Keppra....hoping this will reduce the episodes and wipe out the TOnic Clonic prgression.

The other bits of Eve are prgression related and not really much can be done. The most worrying being her epsiodes of bradycardia which are life threatening and which not a lot can be done about...it is autonomic and as such is a part of the autonomic dysfunction.

Eve did manage to give him a huge smile and made his day.
There is a bit of a straw to clutch because Keppra is much less sedative than Clonazepam we may see a bit of a wake up in Eve...that'll be good!

So there is our update...hope that the changes make a difference for them both.

One day I will try and catch up....life just rushes on...so sorry if you are hoping for pictures, I will try!
Hugs
Tina