Tuesday 26 February 2013

Kids Farms - how they should be...

I'm going to reminice here about "when I was young" but been looking back at our France photos and smiling at the pictures of Riley with the animals - recon she's going to be a vet!

In France we went to a zoo and they had a kids farm there.  You could go in with the animals and stroke them if they got close enough.  There were no signs saying wash your hands all over the place.  It reminded me of what kids farms were like when I was a kid, and all my friends and me survived the experience.

Now in England you can't get anywhere near an animal without a staff member to remind you to wash your hands, there are more signs about washing your hands than about the animals themselves and to feed them you have to put the food down a tube or onto a wind along contraption!  How sad is that and all because people are so terrified of e-coli, which lives everywhere... it is very sad when kids get very sick and even die from it but they are definately a tiny tiny number... is it really fair to take an experience away from a child because of that.

I will leave you with some photos of Riley with the animals, I think she enjoyed it enough to justify the risk...

Riley's been sick! Tummy bug number 2!

Yes Riley's been being sick for the last 24hours... hopefully we're over the worst and touchwood she hasn't been sick since yesterday afternoon and seems much more cheerful today.  She is amazing though because even while she's throwing up absolutely everything she eats she still has a smile on her face.

I was getting quite worried yesterday afternoon when she had had no fluids for getting on for 24hours and she was starting to look exhausted and pale.  I had tried blackberry dioralyte in cooled boiled water and ribena from a tippy cup (sterilised) and she was having none of it.  I am so thankful for having such wonderful friends and family who always save me in a crisis, thank you Madeline for getting me dioralyte and digestives!!!

She chewed on a little bit of digestive over the day (as recommended by my health visitor).  Eventually in a last ditch attempt I put some plain dioralyte in a bottle and it took her a while to get the first 50mls down, but then she glugged the rest!  She must know what's good for her, she perked up after that and had some toast, she cluster fed overnight and had a piece of toast and some dioralyte for breakfast and touch wood it's all stayed down.

Hopefully we're out of the woods and neither Rich or me get it.  Will write an activity and recipe of the week later this week when things have settled down a bit.

Sunday 24 February 2013

France - a wonderful break away

France was fantastic.  All the fears I had were silly.  The drive there and back was fine, actually much more relaxing than getting the ferry.  It was lovely to be out there and see Riley's Nanny and Grandad Mick.  She loved them, she started copying Mick banging on the table, was great to see them all together as they haven't seen her very much.  They also have 2 dogs, Kilo and Gram, a bit bigger than Lily but Riley thought they were great and very funny!

We had a fun filled few days, we visited some lovely towns, went to the zoo and walked up to a couple of waterfalls.  Here's a few pictures of our trip to france :)

Friday 15 February 2013

Travel Insurance ~ Insure and Go

Insurance and epilepsy ~ another big issue... I have been turned down for life insurance, always good to know I'm at such high risk of death they won't even charge me a ridiculous premium, just a letter saying blank no and try again next year... if I live that long hehe.

The most frustrating thing I have found is insurance companies don't understand there's a difference between focal and generalised seizures... I found myself desperately trying to explain to someone whose grasp of the English language is summed up in the tick boxes they are reading off, the difference, that the seizures I have most often last a fraction of a second and don't effect my consciousness. But they don't get it, just continue with the grand mal, petit mal babble.

Then I found out about Epilepsy Action working with Insure and Go to provide travel insurance. They have a specific number, ask sensible questions and although it sucks we have to pay more at least it's not ridiculous and is related to the type of seizures you have. Plus with epilepsy action membership you get 10% off and they donate something to epilepsy action :)

Here's the link:


Yummy Baby Recipes

Just added a few more yummy recipes we've found to teh Yummy Baby Recipes tab :)

Packing ~ we're off to France tomorrow

We're off to France tomorrow to visit Riley's nanny in France. It's a bit daunting going abroad. It's a long journey and have lots of silly little worries. The biggest of which is I don't have the option of just popping to the doctors. I'm not one to panic and take her to the doctors for anything. Only been 3 times, twice when she spiked temperatures after getting over colds and once for her eczema (which is still bad)... but the options always there. My French is poor to say the least which scares me!

Anyway, been packing Riley's things, she's filled a suitcase! My stuffs going to be squashed on top! How can such a little person need so much stuff ~ truth is she probably doesn't, I just worry so pack everything!

It'll all be ok when we're out there and Riley will be very excited to see her Nanny.

Thursday 14 February 2013

St Valentine ~ Patron Saint of Epilepsy!

Ok, I'm not really one for this Valentine thing... seems very commercialised and everything very expensive just to say I love you which I think should be said more than once a year.  Having been single every valentines before I met Rich to me it was a bit of a depressing day.  So I am a bit humbug to it all. But each to there own... Anyway this post isn't about that!

This year I read about St.Valentine being the patron saint of epilepsy... I'm not sure whether that makes it better or worse... on the one hand he's someone to gain comfort in but on the other he does rather support the old belief that epilepsy is some sort of possession by evil spirits which can be driven out of a person...

I did a presentation on the past myths of Epilepsy, it was very interesting, will have to post it sometime.

Here's a link to the Epilepsy Action article, bit long winded but worth a try if you've got the time


So valentine's day has another meaning for me be it good or bad, you decide :)

Wednesday 13 February 2013

Life before Meds

Some days I find myself trying to remember how I felt before I started the Epilepsy meds... that was 9years ago now... a third of my life. Don't get me wrong I feel very lucky not to get any major side effects but sometimes I feel maybe the world is a little less sharp, I am more tired and sleep very deeply. But when I think back to compare it is impossible, my Lamotrigine has increased slowly over the years as my seizures are so infrequent and now I'm on a big dose of 450mg a day. But I'm very happy with life and if I never have a seizure again I can certainly live very happily like this. Just a thought I have sometimes.

Tuesday 12 February 2013

The Magic of Bubbles

I can never get over how magical babies find bubbles... always puts a smile on Riley's face :)

Monday 11 February 2013

Treatment options for people with difficult to control epilepsy

On Saturday I was a volunteer at a conference run by epilepsy about treatment options for people with difficult to control epilepsy.

It was great to help out and very interesting... here's a brief summary of the issues spoken about:

Epilepsy Surgery - I missed most of this talk as helping someone but it seemed very interesting and going to try to get hold of the lecture notes so maybe able to tell about more at a later date.

VNS - Vargal Nerve Stimulation, which is where impusles are sent from a small box to the Vargal nerve at intervals and has been shown to help many people with hard to treat epilepsy.

More info at:  

Massage Therapy in patients and it's benefits... such as relaxation,  reducing anxiety, helping self confidence, giving you some me time.

Ketogenic Diet: Matthew's mum (from Matthew's friends) gave Matthew's very moving story and went on to discuss the benefits of the diet, addressing the myths and gave information on Adults using the Ketogenic Diet... it is possible, just not considered by many specialists at current time.

More info at: 

Buccal Midazolam: information on it's administration, people had a lot of concerns over it's use over rectal diazepam... having given both all I can say is Midazolam is much easier to give and from a dignity point of view you cannot argue it.  I think people were a little concerned that the presentation was by a drug company rep but usually they know a lot more than some professionals.

Some more info from Great Ormond Street Hospital:

It was also wonderful to meet other women who are thinking of having a family as it has been really hard to get in contact with anybody. So just wanted to say hi if your reading this after the conference.  It was lovely to meet you guys and I hope the epilepsy action campaign and this blog might help you feel confident to become a mum :) feel free to contact me, would be great to hear from you :)

Driving ~ a bigger issue to me than some may think

People think that because I don't act bothered about driving I am not bothered about driving. They couldn't be further from the truth.

Having lost my licence 3 times I don't exactly feel confident that even if I get it back I won't become reliant on it, then lose it again and go through the whole emotional and practical ordeal of doing without it again. And worse still I have the worry that seeing as I can go 2 years without a seizure and then have one out of the blue with no warning, how do I know I won't be driving at the time and kill someone. Now with Riley, it's just such a daunting prospect.

But don't get me wrong, I'd give anything just to jump in the car on a cold morning and drive the 20minutes round the corner to a baby group rather than having to wrap Riley in 20 layers or waterproofs(or both) then walking 15minutes usually up a long hill, to a bus stop, standing in the freezing cold or pouring rain for a bus that's late, get another bus or train and then walk for another 15minutes usually up another hill. Let alone the fact that it's not possible to travel further than a 20mile radius and get back the same day, so visiting friends further away for a day is near impossible. Buses that are already full of pushchairs so you can't get on. Or avoiding school time or commuter time cos there's not enough space. Or trying to fit meal times and nap times around all this chaos!

But when you just can't drive what is the point in dwelling on all the stuff you can't do, it just makes it all the more upsetting and frustrating. So I like to think about all the positive things... to Riley a trip on the train or a bus is a day out. I have lost all my baby weight and more pushing her around and getting lots of fresh air. I was lucky enough to have a fantastic relationship with my Grandad who picked me up all the time, I miss him so much but in a way having epilepsy brought me closer to him and I felt so lucky to have him. And now my Mum picks me up and we love seeing her and along with Rich they are my closest friends. On top of that so many people know how hard it is for me, so I get so many offers of lifts and visits that it makes me feel very lucky to have such wonderful friends and family and I get to see people so often, I never feel lonely :)  But I still feel bad relying so much on other people.

All I ask is that people don't take having a driving licence for granted, you never know when you might lose it for reasons out of your control, I have little sympathy for people who do things to jeopardise their licence out of choice.

Not being able to drive is challenge, don't let it stop you getting out and about, there is so many baby groups locally to most people, sure start centres are everywhere and mum's net is great. Once you start meeting other mum's often you can grab lifts with them.  Just remember all the positive things, forget the negative :)

First proper day on my own!

Saturday was the day! I know it probably sounds silly but for me it was a big thing. Other than Rich taking her away while we were in Peterborough but it didn't seem as big somehow... it didn't seem like the whole day or so far away...

Ok it was only a trip to London, I left at 8am after starting her breakfast an was back at 5.30, gave her her tea and put her to bed, then went out for a meal.

Rich had a lovely day with her, they went to Polsden Lacey and when I got back she was waiting at the station she didn't even seem to have missed me, no massive smile just an acceptance I
was back!

The evening didn't go so well, she was asleep when I left and then apparently woke up and cried until I got home at 10.30pm, I gave her feed and then she fell asleep all night... so maybe she did miss me... or was worried where her night feed might be coming from... I like to think the former!

I did miss her, it seemed very strange getting the train and bus without her... but it was also quite nice, a chance to listen to my music, not have to worry about getting a buggy around and also just to be independent, don't get me wrong, I thought about her and Rich all day but I also enjoyed the day and the meal in the evening.

It was a big step for me, in a way sad as she doesn't need me as much anymore, but in a way good as I am back to work soon and I don't want it to be a huge ordeal for her :)

I will talk about my day in a later post - was volunteering for epilepsy action at a conference on treatment options in difficult to control epilepsy... was very interesting :)

Wednesday 6 February 2013

Activity of the Week ~ building blocks

Ok. So building blocks, you can get some from early learning or we picked up a huge bag from an NCT sale and some massive Lego Quattro blocks too. Just make sure the paint on them is child safe (they mainly end up in Riley's mouth)

So aside from them being stuffed into their mouth, there a re countless games to play:

Knocking down towers (building them is never as successful!)
Investigating different shapes
Colour choice
Banging them together
Passing them from one hand to the other or between you
Hiding them under things for baby to find
Using them with other toys to make up stories eg making a field for some farm animals...

Use your imagination, stick some happy music on and have fun :)

Tuesday 5 February 2013

BBC looking for a Mum-to-be with Epilepsy

The BBC are looking for a pregnant mum to be with epilepsy to share their story for a tv programme. If you're interested in helping give Julia a call on 02077651210 or e-mail her on julia.ross@bbc.co.uk

Breastfeeding ~ epilepsy shouldn't effect it

Just wanted to write a bit about Breastfeeding as don't think I really ever blogged much about it. I've read a few people's comments that health professionals told mum's after giving birth they couldn't due to the meds.

FACT: most mum's can breastfeed when taking epilepsy meds.

There are a couple of meds that are an exception, but always talk to your specialist or epilepsy nurse before the birth so you know the score and can stick to it whatever anyone else says. It's so unfair to be told you can't straight after the birth only to be told a few days later you can by which time it can be very hard or impossible to start.

If you think about it they've been taking a small dose throughout your pregnancy, the small amount in your milk is negligible when they are growing so fast.

Epilepsy Actions Info:

I knew I could so have solely breastfeed and I am still now, more because it's so easy. Was a bit worried about night feeds and seizures because I was tired so we always said if I'm too tired Rich would help at night either with expressed milk or formula.

Breastfeeding not for everyone, it can be hard. I found the first few months a challenge, not due to my epilepsy, just normal mum things, but after 3months it became easy. The main thing is you have the same choice as everyone else, having epilepsy doesn't change that. But never think just because you don't breastfeed you don't develop such a strong bond, people who say that are very unfair, it's not for everyone but don't let your epilepsy effect that decision.

Some info on breastfeeding from the nhs:

I have found breastfeeding overall a very positive experience, there is something amazing that for the first few months everything she does and all her growing is from what I'm eating! It's also so easy no sterilising bottles etc and it has built an emotional tie, starting to stop now as she eats more is quite hard, I have never been away from her for more than a few hours as she always needed me for milk.

Saturday will be my first full day away from her. Volunteering for an Epilepsy Action study day. But the fantastic thing is she gets a daddy daughter day :) when I'm back at work there will be a lot more of them so need to start letting go a bit more, just very strange leaving her behind!

Monday 4 February 2013

Yummy Baby Recipes

Thought another thing I'd do is publish a baby recipe that Riley's liked each week.  Figure it will be an insentive to keep trying new recipes...  putting in a page to keep a record of them all.

This week is one I made up myself... first did it with the left overs of the turkey but now I do it with chicken instead...  (amounts are pretty much as you thinks best, bit of trial and error)

Cook chicken in a pan with some chopped onion or leek until cooked through.  Then add cream and some chicken stock (home made or baby stock) and bring to boil.

Meanwhile cook some broccoli and cauliflower in a pan until soft and cook some pasta.  Combine all ingredients and put in a oven proof dish.  Sprinkle cheese on top and put in oven (at about 180) until it browns on top.

Baby Proofing the House

Our house is almost sorted for if Riley starts crawling (having done so she probably won't crawl for ages but none the less it is done).  From an epilepsy point of view we have as far as possible tried to think about what she could do if I were unconscious after a seizure, however there is only so much we can do.  The main part of the plan is to mainly keep her in the lounge, we're getting a stair gate and have a play pen we can put across to keep her out of the kitchen.  It has an added bonus that our stair case has gaps between the stairs so is impossible to just block the stairs so keeping her out of the hall entirely is a plus.  We just need to put up the upstairs stair gate and put on some cupboard locks and we are done.

I think my job also makes me quite paranoid about what could happen to a child.  Working on a brain injury rehab unit you see lots of accidents, most are so unlikely to happen most people wouldn't think of it.  But having seen the outcomes I do worry... there are a few things I have done based on accidents... got rid of blinds, always strapped her into her buggy (from day one) and she is not eating grapes til she's 18...  The biggest thing we have done is got rid of the glass doors, they're not safety glass and I'm paranoid about her going through it so I am very happy (plus they were aweful to clean).

So now she just needs to start crawling... at the moment I'm not sure it's going to happen anytime soon.  She seems quite happy just to sit and have things brought to her!

Friday 1 February 2013

Welcome to Anyone from the Epilepsy Action Page

I just posted on the Epilepsy Action pregnancy diaries comments, so just wanted to welcome anyone who has got here from that.  I hope that you might find this blog interesting and that it might help give everyone a little more confidence to be a mum, it is a truly wonderful thing, don't let epilepsy stop you from experiencing it.

I was amazed at just how many people posted about the diaries, I have been writing this blog as I felt so alone going through this, but reading all your comments made me realise I am not alone.

Feel free to comment and I'm going to set up a page for everyone to add comments to chat and share there experiences and any concerns both of epilepsy and just being a mum :) or mum to be, or just thinking about being a mum.