Wednesday, 16 November 2016
Tuesday, 15 November 2016
Reading Robbie Williams comments on Loose Women as he described his mother -in-laws dancing filled me with mixed emotions...
The first thing I thought is did he really say seizure and not fit... at least he got the terminology right! I don't get offended by the word fit however I go out of my way to always use the word seizure myself as I feel seizure is the correct medical term and pushes forward the fact epilepsy is a serious condition not to be confused with a 'fit of laughter'.
However sadly if you look deeper the fact he used the word seizure is a little worrying. It shows while we are pushing for correct terminology to try to make epilepsy less of a joke it isn't working. He still made a joke of something we all live with day in day out and didn't think anything of it. Let's face it no one would light heartedly joke about cancer.
Don't get me wrong I am not angry at Robbie Williams I am pretty sure he didn’t mean anything by it, he probably didn't think twice about what he said it was just a figure of speech and that's the sad thing I hear jokes like this all the time.
I grew up with Take That, they were my favourite band as a young teenager and Robbie was like so many my favourite. There album was my first album, bought on cassette tape from Woolworths (showing my age now). Wow how the world of technology has changed.
It is just sad that the world of epilepsy doesn't change at the same rate. I wish people could understand what living with this condition really meant epilepsy is so much more than seizures, it's not a joke.
Stories like this aren't going to change how people see epilepsy. We need more real stories in the media, people talking about how epilepsy is so much more than the seizures but those stories are hard to get into papers.
You have to ask the question did the media even run the story because they felt Robbie's comment was wrong, to raise some epilepsy awareness, or just because it was Robbie Williams and it was an oppertunity to critise him and sell some papers?
Sunday, 13 November 2016
When a child turns two suddenly the word on every parents lips is potty training… if you think the pressure for your child to walk or talk first was intense… you have experienced nothing until you enter the unchartered, unsupervised waters of potty training. At least there was no bodily fluids involved when learning to walk and talk and there was a health visitor checking their every skill level intently with surveys and check-ups, giving you tips and ideas.
No when it comes to potty training you really are alone and weirdly surrounded by parents and children who are apparently natural masters of the potty… you will hear ‘my child just decided one day he didn’t want to wear nappies anymore and potty trained himself’ ‘have you tried the three day technique, it’s amazing, I just don’t understand what all the fuss is about?’ ‘my little one was dry within a week of getting rid of nappies’ ‘I can’t wait to get rid of these expensive nappies’ ‘isn’t it awful the number of children still in nappies when they start school? Lazy parenting’.
That September school deadline looms over you, you know they NEED to be dry by then or you are going to be that lazy parent who expects the school to toilet train your child. The media are pushing it, nappy companies are trying to squeeze every last penny out of you with pull ups and training pants and health visitors are weirdly no where to be found at this point and you feel like EVERYONE is judging you.
The reason 10% of children aren't dry by five...
The last two years have been the hardest two years of parenting for us. I have felt like a failure as a parent, like the only one who couldn’t teach their child the simple skill of using the toilet rather than their clothes to wee and poo in… there have been tears and temper tantrums from all parties involved… but then I found out something… 10% of children are not fully toilet trained at 5 years old… even more are not toilet trained at 4… so where are all these parents and why do we have so much pressure placed on us to achieve a goal which for 1 in 10 children is unachievable?
I am going to speak out for those 10% now, I hope that someone reads this and doesn’t feel like the failures that we did.
There are lots of reasons why children might not want to use the potty or toilet, for example, anxiety, fear or just plain stubbornness but what I am going to talk about is a medical reason which I now know affects 1 in 10 children aged 5 and which I feel every parent should be given information about.
Even more importantly is that having started talking to women whose children have been exposed to anti-epileptic drugs in uterus, this seems even more common in this population of children. Obviously there is no research, no reliable data to support this claim as with most of the impact of AEDs on unborn babies, it isn’t a priority for anyone to research at the moment.
If I had been told this could be a side effect of my medication would I have not had children? Definitely not, however if I had been told to watch for signs of an overactive bladder would I have approached potty training completely differently… absolutely and the last two years would have been very different. Hindsight is a glorious thing and I will definitely be looking at potty training Benji very differently.
So what is an overactive bladder?
We now describe Riley’s bladder as a naughty bladder. You may also hear this condition being called a ‘twitchy’ bladder. When the bladder fills with urine these ‘naughty’ bladders send messages that the child needs the toilet before the bladder is fully full. This means that the child will have a small bladder capacity and so will need to go to the toilet more frequently. When the bladder squeezes this can be so strong that urine leaks out then and there, causing damp pants something we have been struggling with for years and meaning Riley has to change her clothes multiple times a day.
So the symptoms are:
- Frequent weeing (8 or more times a day)
- An urgent need to get to the toilet quickly
- Smaller bladder capacity
- Urinary tract infections
- Children will often try to stop the need to wee by squatting, sitting on an ankle or standing on tiptoes.
But with Riley these symptoms have only become clear in the last year or so as she has grown older and more able to communicate complex ideas. Before that it was much more vague, she just didn’t seem to get potty training and yet she was meeting all her other milestones even ahead in things like imagination and emotional maturity. She just had a lot of accidents and never told us when she needed a wee so we just thought she was being lazy or we were doing it wrong.
We tried every reward we could think of, marbles in a jar, sticker charts, Velcro charts, a shop that she got coins towards every time she did a wee or poo. We tried rewarding wees and poos, we tried rewarding staying dry instead. We bought a wobble watch to remind her to use the toilet every 30 minutes. We got her to change her clothes herself after an accident to try to show her it is much easier to use the toilet. Every time we introduced something new she improved but within two weeks she would slip back again it felt like taking three steps forward then two steps back and it was exhausting.
Finally I couldn’t take anymore I went to the drop in health visitor clinic and when I was told they were too busy to see me and the clinic was really only for babies I broke down in tears in the waiting room and finally got to see a health visitor. She came and did a home visit and it quite quickly became clear we hadn’t done anything wrong and they weren’t able to really offer much more advice. Finally we got a referral to a paediatric urologist…
The moment everything changed
So I wrote everything down and went along to the appointment, the doctor was lovely talking to Riley as well as me. She sat and listened to everything, my two years of a nightmare. Then she smiled, a kind but knowing smile… she said to me I wish I could tell you that your child is unique however almost every parent who walks through that door tells me the same story. She then explained to Riley and me that Riley had a naughty bladder and she said to me that Riley was particularly receptive for a 4 year old and so we could introduce an easy exercise to try to help. But the main thing is that most children grow out of this problem… so we just have to wait.
Why did no one mention this before… why did no one say 1 in 10 children won’t be dry by school at it’s not the child or parent being lazy… it’s a medical thing that no one can change. Suddenly I looked on the whole situation differently. We had just spent two years trying to get Riley dry in pants… I had even bought some ‘Dry like me’ pads but didn’t want to use them in case it made her lazy.
I left that appointment and went straight to the shops, I bought Riley a little bag, some nappy sacks and a packet of wipes and the next day I showed her the ‘Dry like me’ pads. I explained to her that the pads would mean that when her bladder was naughty and squeezed some wee wee out that it would go in the pad, it wouldn’t smell, it wouldn’t make her clothes wet and all she had to do was change the pad herself when she went to the toilet. This has been a game changer. Suddenly our life isn’t ruled by toilet training. Riley can manage her own pads and when to use the toilet 95% of the time, we still get the odd accident but it is so much more manageable.
My top tips for managing an overactive bladder:
Make sure your child is getting enough fluids, they should have over 1000mls of water at the age of four, that is quite a lot and it does take persistence to achieve. This helps the bladder to fill and stretch and also stops the urine getting too concentrated which can make the ‘twitching’ worse.
Only allow your child to drink water. Other drinks can again increase the twitching, caffeine is the worst, so tea, coffee, cola are definitely off limits. Artificial colourings and flavourings can make bladders more ‘twitchy’ too so we always avoid these and even natural blackcurrant juice can have an impact. With Riley we give her watered down apple juice as a treat as this tends to have the least impact.
Take your child to the toilet at regular intervals to try to do a wee especially when they are busy, a vibrating watch can make your child more independent with this. It can be hard for them to differentiate between their bladder being naughty and squeezing and when they really do need to go to the toilet so when they are busy it is easy for them to forget.
Measure how much urine your child is producing when they wee. The problem suddenly became clear to us when Riley had a kidney scan and the radiographer said she only had 60mls of urine in her bladder and so couldn’t possibly need a wee even though Riley said she did. I went home and started measuring each wee and suddenly realised she wasn’t ever producing more than 80mls of urine. Her scan was sent back as normal so I had to go back to the GP to make it clear this wasn’t normal.
When they go to the toilet make sure they empty their whole bladder. It can be good to encourage them to count while on the toilet and blow out.
If your child is struggling with poos, or doing poos in their pants, even if they go everyday they could be constipated. We give Riley a small cup of prune juice each morning which seems to really help her. Being a little bit constipated can put pressure on the bladder and make it even harder for a child to work out when they need a wee.
Don’t be afraid to use ‘Dry like me’ pads. These are like sanitary pads and go in their pants. If your child’s pants are constantly damp the pad will stop them having to change their clothes so often, will stop them being smelly and getting sore. Forget trying to get them dry, just aim for them to be able to manage the problem independently. It turns out schools aren’t so bothered about dryness, they just want the child to take responsibility for their toileting.
Try to encourage your child to try to hold their wee, the doctor said to Riley to try to count to 30 elephants when she feels she needs a wee and see if the urge to wee has gone. That way you can train the bladder to fill and stretch a bit more, increasing its capacity.
Get the school onside, explain your child’s problem, make it clear they can’t wait for toilet breaks and if they are using pads show them that they have a little bag that contains everything they might need. Our experience has been that the school has been amazing and really supportive.
Don’t worry about night time dryness, it may seem like everyone else’s children are out of nappies at night but if your child’s bladder can only hold 100mls of fluid in order to keep them dry at night your child will have to be getting up quite a lot to manage a dry night. Also the twitching doesn’t stop at night so they may well leak without waking up. Surely a goodnights sleep is more important for everyone. Night time dryness is also reliant on the child producing enough of a hormone called vasopressin which your body needs to stop you making so much wee at night.
I really hope this blog helps another family struggling with toilet training feel less alone and empowers you to look at things differently. I will be looking at the whole process very differently when I potty train Benji, I have learnt so much from the past two years about the amount of pressure we put on ourselves and our children to achieve developmental milestones.
ERIC is a brilliant charity who have some brilliant resources for parents, children’s and school and who have been fantastic with giving us advice through their helpline so I would definitely encourage parents to contact them if you are struggling.
Tuesday, 8 November 2016
Thursday, 3 November 2016
I can’t thank the empatica team enough for this amazing product, it is helping me to feel more confident when looking after my kids on my own or while out running and training for the marathon. I really do feel this is going to be life changing for so many people living with epilepsy.
Sunday, 16 October 2016
Date: Saturday 29th October 2016
Time: 2pm - 4pm
Venue: Horizon, Assembly Walk, Carshalton, Surrey, SM5 1JH
Items in the auction open for pre-bids (send bid by email to firstname.lastname@example.org)
2 hours in a professional recording studio with an award winning producer and leaving with a professional quality recording on CD or online
CV and interview advice by a professional recruitment consultant
Horse transport (up to 100miles) and groom for a day (excluding plating tails)
Linked in profile copywrite
5 hours of babysitting in the Redhill/Reigate area
Improvers ski lesson by professional ski instructor (at Brentwood ski slope, transport can be included)
3 hours of base guitar lessons
Cooking tutorial from a professional chef culminating in a restaurant quality 3 course meal in your own home
An amazing made to order cake from Little Blossoms Cakery (truly works of art)
Vintage China for an event for 30 people perfect for a baby shower or hen party
Fudge factory experience
Pony experience - spend half a day learning to care for and then ride a pony (children under 8 years)
Auction items available on the day only:
Transport to and from the airport
Beginners knitting lesson
Family meal including desert delivered hot to your door
1 to 1 make up lesson by professional make up artist
2 hours of ironing
Kids rainy day craft box
frozen slow cooker throw bags
2 hours of gardening
Meal for four people cooked in your own home
5 beginner piano lessons
We are also going to have a raffle on the day and raffle prizes so far include:
Family ticket to Godstone Farm
Afternoon tea for 2 at Edibles in Banstead
2 person ticket to Bockett's Farm
Garson's Farm gift voucher
Woodcote Green garden centre gift voucher
Free bowling at Tolworth Bowl
Mini canvas by the talented artist Jenny Greenland
£10 dry cleaning voucher for Banstead
1/2 case of wine
30 minute go karting session in Crawley
And much much more...
Also on the day there will a cake sale with tea and coffee, crafts for the children, face painting and Riley will be singing a song to make everyone smile!
If you aren't able to come along to the event but would still like to support my marathon attempt anything you can donate would be greatly appreciated. My just giving page is:
Friday, 16 September 2016
In the years since there have been moments where my anxiety has seemed to get worse, during my pregnancy with Benji when I was worrying about labour was one of those times but it was then that I learnt about mindfulness and really used it to take some control back over my thoughts and worries.
So when I was planning going back to work I thought it would be ok Benji starting nursery, me starting work, Riley starting school and running my first half marathon all in the same month... not sure exactly what I was thinking but all I can say is this last month has been a tough one.