Monday, 1 June 2015

Ice Ice Baby.

A little while ago I mentioned that Sophie had started ice skating lessons and was doing rather well.
She was picked up by a coach who wanted to coach her privately and as Sophie loves skating we allowed this to happen.

Well things moved very quickly and her coach mentioned an inclusive skating competition being held in Glasgow in April. She wanted Soph to enter.

Inclusive Skating is a fairly new form of competition and it is open to anyone who has any form of disability, long term medical condition or an impairment that may cause issue or disadvantage in skating. These can range from being deaf, blind, asthma, Cystic Fibrosis, heart conditions, physical disabilities and also any cognitive issues etc

Each person is assessed and given a classification score. This score is then included to final judges scores. You don't know what your classification score is but it's done fairly to allow people with conditions and impairments that otherwise couldn't be fairly judged to compete against each other.

The hope is that the scoring criteria can be used to allow Ice skating to be included in the Paralympics!

People from all over the world came to compete and Sophie got to skate representing England.

As nervous as she was competing for the first time she did super well!

And I'm incredibly proud to say she won not one but two silver medals!!!

Which is incredible as she had only being skating about 5 months by the time this competition arrived!

She's now got the figure skating bug and is working very hard in training as it looks like the next competition is possibly going to be in October in Iceland. ICELAND!!!

As crazy as this world of skating has become, I'm so happy Sophie has found a sport which she loves. Not only does it build her confidence it also keeps her lungs working hard!! Sophie even continues to skate when her port is accessed, she's that dedicated!


Shingle bells.

Sounds lovely doesn't it? Nice little ring to its name you'd say.

A tiny little 'dry' patch of skin, which someone (that would be me) assumed was a small graze from a tumble Sophie had taken while playing. 

Off to school we go.

Ian picks Sophie up from school as I'm curled up in a ball suffering from a kidney infection and takes her to her swimming lesson.

I receive a phone call from the hubster to inform me of a weird rash Sophie has. 

Trying to get a description of a rash from a man is hard work.

'What kind of a rash is it?'

'It's a rash'

'Is it red, raised, all over her etc etc'

'It's a rash, you need to see it'

Was pretty much how the conversation went.

On their return I take a look at this rash and am a little puzzled as it looked like this..

There was a lovely little diagonal line of this rash from back to tummy. Luckily we managed to get an appointment at the doctors.

I joked that if I didn't know any better it looked a bit chicken pox-like and as soph had those a few years ago it couldn't be that. Could it be shingles? She's too young isn't she?

Doctor took one look and confirmed it was indeed shingles and handed us a prescription for 80 aciclovir tablets to be gobbled up over 5 days-fun times!

Knowing several people who have had shingles and had an excruciatingly painful time, we were prepared for a rough ride!

Pleased to say though, that Sophie has had no symptoms other than a bit of an itchy rash as the anti viral medicines were started in time. No fever and most importantly no pain.

I honestly didn't know shingles could happen in children but it is more common than you think!

And to clarify a few details about shingles:

-You cannot catch shingles.

-When you have chicken pox, a small amount of the virus lies dormant near a nerve in your body. That dormant virus can activate itself at any point and for reasons not fully understood. When it flares up it follows the position of the nerve it has settled near, which is why you usually see the rash follow a line.

-You can catch chicken pox if you come into physical contact with shingles blisters if you have never had chicken pox before.

-Like chicken pox, once the blisters dry up you are no longer infectious to anyone.

-If anti viral medication is started within the first 48 hours of shingles starting it can often lessen the symptoms & duration.

-Some people develop neuropathic pain with shingles along the nerve affected. This can last up to years in extreme cases.

-Shingles can affect anyone at any age if you have had chicken pox, and unlike chicken pox it can strike more than once!


Tuesday, 24 February 2015

Super Doc

Hi all!

Long time no blog :)

I'm going to do a big update on Sophie but I'm waiting until March for reasons I will hopefully be able to divulge then.

For now I'm asking for your help (begging if it suits).

As the NHS is low on funds and pretty much providing the bare essentials currently, Sophies amazing consultant (fran) is taking matters into his own hands.

Sophies CF centre needs vital equipment to provide to patients when staying on the wards. This is essential equipment to help improve the health of those with Cystic Fibrosis.

Fran is going to be running the Manchester AND London marathons. Yes you heard right, not one but TWO marathons and is trying to raise £10,000.

This is far beyond his role as a consultant but we are incredibly grateful to have a doctor who is willing to run a total of 52 miles in 8 days to help his patients.

So please, if you are able, help him reach his target of £10,000. Any amount no matter how small will help.

You can donate/sponsor Fran via this link.

Thank you

Friday, 14 November 2014

Four little letters.

For anyone that has hidden under a rock for the last week I'd like to draw your attention to this.

For those of you who don't feel inclined to read it allow me to summarise.

Jon Snow is a reporter for channel 4. He broke the above news story via his blog and followed up with a report on channel 4 news and it sent the majority of the CF community into a spin.

Okay, I hear you say but why has it caused such a frenzy?

The frenzy induced madness was caused because the report was about some research that has been jointly done by Researchers in Dundee, France and Italy.

Well that's perfectly normal and happens all the time right?

In this case no. The attention grabbing headline was something to make even the most dubious of folk a little curious.

"Eureka moment offers hope of Cystic Fibrosis cure"


Currently we are in a very exciting time in CF land. So many studies, trials and research are in progress for medications that treat the underlying defect/cause of CF. However they are exactly what they say on the tin. Treatments, not cures.

So to hear about results of a trial that no one has really heard of before be declared as a major game changer for CF got people slightly dizzy.

I'm a sceptic at heart and always like to see evidence, stats etc so with the help of a few friends we did a little 'research' of our own.

It turns out the research, which appears very promising is at a very early stage in its development. The trial was completed with only 10 patients and they each had double DF508. It also appears that this treatment may only work on adolescents and young children only. This is something to do with the lining of the lungs becoming tougher the older you get, but as its so early in trials there aren't masses of results to chew over.

So back to earth we fall. Well not entirely, the research looks very promising but it needs a larger scale study to really see if the results are as good as they have seen in the small group used in the trial.

Another point i'd like to raise is this particular study is using two drugs that are already in use for other conditions so I'm not sure whether safety trials will be as lengthy as others are. It is however a long way off becoming a potential treatment for people with CF.

Back to the magic word. Cure.

To me a cure is a one off treatment that you receive which gets rid of the illness/condition. This particular drug combo, to me is not a cure as I'm assuming the medications would be taken for life?

The media have a lot to answer for by throwing about these types of words in a world where people live in hope and often desperation for something, anything, that will nuke Cystic Fibrosis once and for all. 

I watched a lot of the CF community get excited in a way I haven't witnessed since vertex initially announced the early results of VX770 (kalydeco) quite a few years ago.

It was very sad to then see that hope almost deflated as the reality of the headline began to unravel for those who took it as literal.

People that have lived with CF for a long time are seasoned professionals at being very sceptical when headlines like this are announced, but for those with newly diagnosed children or people who get baffled by science, it raises false hope in a cruel way.

Cautiously optimistic is probably the way I feel but it definitely pays not to stack all of ones eggs in one lonely basket. 

The day my daughter has a treatment prescribed for her that can change the game dramatically is the day I'll celebrate. 

Until then, we will work our backsides off to keep her as healthy as we possibly can.


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