You may be wondering about the
title of this blog and where it came from.
Well, we do actually have (as many other people with ichthyosis/other
families do) a cupboard full of creams and dressings.
Since having Alfie, I have become
a little obsessed with skincare and am always on the lookout for new
products. Not because I am obsessed with
finding a ‘cure’ or because I am unhappy with our current regime but because
different products have different effects and we are open to trying new things. Over the last few years we have tried a
number of products which on paper are essentially the same thing – think along
the lines of tea bags, they all contain tea leaves and are basically the same
but we all have a preferred brand for whatever reason. You would think that
creams that are made of the same or similar ingredients would do the same thing
but they are all ever so slightly different and when you are using this day in day
out, those slight differences are magnified.
All types of ichthyosis are
different and even two people that have the same type can vary
dramatically. Everyone has their own
skin care regime, everyone uses a different combination of products and what
works for one, won’t necessarily work for another due to those variations. For
new parents it is easy to fall into the trap of ‘that works for xyz so we
should try that on our child’ and you think that it will work the same but in
practice this may not be the case. We
learnt our lesson the hard way when we were prescribed a new cream for Alfie
that our then dermatologist recommended but after using it once made his arm
blister really badly (thankfully we are cautious and only try new products on
one arm first!)
The ichthyosis community are very
good at sharing skin care regimes and products though and if you ask for
opinions on a product you will almost always get a multitude of opinions,
reviews etc. Getting a sample of a new
cream is an exciting thing (I know this sounds really sad but #ichthymums I
know you are all with me on that right?!) and I have a container full of sample
sized pots of stuff ready to try. When we get a new cream I like to try it out
on myself as well to see how it feels on the skin because certain ones are
sticky and feel horrid and I wouldn’t expect Alfie to have it on his skin all
day if he felt uncomfortable. Alfie is
getting to the point now where he has a say in what cream he wants to use and
is able to tell us if something hurts his skin or doesn’t feel nice (although
he is 4 and sometimes says things hurt just because he doesn’t want it on and
it actually doesn’t hurt him – 4 year olds are a little bit cunning!)
We have a lot of prescription
items every month and to make things easier we use a prescription delivery service
called Bullen Healthcare. This was set
up by the dermatology team at Birmingham Childrens Hospital and makes our lives
a little bit easier. Once a month we get
a phone call from Bullens and we give them a list of everything we need. They then contact our GP, obtain the
prescription and dispense it. We receive
our prescription items a week later via courier. The items usually arrive in a very large
heavy box and we have the same courier most of the time (I think he wonders
what on earth is inside!) I would recommend this kind of service to anyone with
ichthyosis as it saves lugging large amounts of cream etc back from the
pharmacy. We use Bullen Healthcare as
that was the one we were set up with but there are other companies running the
same kind of service.
I am a little bit obsessive about
my cupboard full of cream, I like to keep my shelves neat and tidy (no thanks
to Rene who likes to empty them daily), I like to know how much is in there and
we have a few weeks supplies because we have had occasions where we can’t get
hold of a certain product for various reasons (panic!). Our cupboard is an ikea billy bookcase with
doors on – bet not many other people buying a Billy bookcase use theirs for
this purpose!
To make our lives a little bit
easier we also keep a small supply of creams etc (just a drawer!) at my parents,
a box at pre-school and a bag that we take out and about with us. We also have (and this may seem a little
neurotic to some) an ichthyosis friendly first aid kit in the car just in
case. I know this seems a little bit
weird but I saw a car crash once and it made me think about what would happen
if we were in the same situation. Alfie
has a sign on his car seat advising first responders of his condition and his
special first aid kit in the boot. The
first aid kit has non-adhesive dressings, needles and scissors in as well as a
list of all of his prescription items, details of his condition and contact
numbers for his dermatology team. I hope
we will never need to use this kit but I feel better knowing it is there.
I don’t think there are any rooms
in our house that don’t have some sort of cream knocking around. We have supplies in the bathroom that we use
daily plus special hand wash at all of our sinks and lotions dotted around the
house for convenience. I have pots of
cream in the car and in my handbag just in case.
If anyone shouts for hand cream then I’m your
go to woman and if I need a bit of lip balm then I just give Alf a quick kiss
on the cheek!
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