The last couple of posts have been about our bath and cream
routine and the daily skin care Alfie needs.
The daily skin care is absolutely essential to keep Alfie comfortable
and can never be replaced. However, we
came across a technology that some families in the USA said had helped the
condition of their ichthyosis so we started to research it.
I have decided to share our experience of using this
technology 1) because it is now part of our routine and 2) because there is a
lot of discussion within the ichthyosis community about it and I wanted to
write an honest account of our experience.
So, firstly, what is it?
The Microsilk pump can be fitted to baths (not available for sale in the
UK but can be imported from the USA) or
some hot tubs (Marquis is the make we have).
If you think of a regular jacuzzi bath or a hot tub, they produce large
bubbles that you can see; the Microsilk pump produces bubbles that are tiny (50
microns diameter) and the pump makes the water appear cloudy. According to the bath manufacturers website
(they produce the baths in the USA, see website below) in very basic terms, the
micro bubbles are able to penetrate the skins pores to remove impurities, help
to exfoliate the skin and hydrate the skin.
The bubbles are tiny so they do not collapse straight away in the water,
they stay suspended in the water and slowly release the oxygen.
To be honest, I don’t really care how the technology
works! All I am interested in is DOES it
work for my child? The technology was
developed as a high end beauty product essentially and at first I was very
sceptical as the initial information coming from the USA was a little sketchy
and I wasn’t sure I trusted the source.
However, I kept hearing more and more about it from families within the
community and it made for interesting reading.
By chance I was put in touch with a local family who had a son almost
the same age as Alfie with the same type of ichthyosis and after chatting a
little with his parents, they mentioned that they had tried the technology at a
hot tub retailer and had bought a hot tub with a Microsilk pump. They invited us to try it out and we did a
couple of times. I was still a little
sceptical prior to trying it, I didn’t see how it could work. But we did try it and we could see a
difference in Alfie’s skin after the first try.
After the second trial we really could see a difference and so we
decided that this was something we needed to invest in for our son.
We did a lot of research on different options. We decided against importing a bath for a few
reasons, 1) the cost was almost as much as a hot tub, 2) we had just had our
bathroom re-fitted, 3) we weren’t sure that we would be staying in our current
house for a long time and didn’t want to have to rip out the bath to move and
most importantly 4) we wanted the hot tub so that we could use it as a family
and make it less of an ‘ichthyosis thing’ and more about family time.
After looking at lots of hot tubs, pricing
things up etc, we decided on a Marquis Spirit with additional Microsilk pump
fitted. https://www.marquisspas.com/hot-tubs/models/marquis-signature-series/the-spirit-hot-tub/ We didn’t want a HUGE hot tub and we wanted
something to fit on a bit of concrete we already had in our garden. The four of us can fit in comfortably.
We are very lucky that the village
we live in has its own charity and we were able to apply for a grant towards
the cost to the hot tub. If anyone would like to support the work of this
charity it would be greatly appreciated:
We have had our hot tub now since April last year. We use is twice a week for around 45 minutes
and I can honestly say it helps the condition of Alfie’s skin. Since having it, he has definitely had less
infections and the thickening of the skin is kept down. The excess skin growth
is easier to exfoliate after using the spa.
With Alfies skin, we have to strike a balance between keeping the skin
supple and thin enough to prevent it from cracking and to prevent infections
but we don’t want to completely shed the thicker skin as it does protect the
skin from knocks and from becoming too fragile – hence why we don’t use it more
than twice a week.
Having the hot tub does not mean that we don’t have to use
creams and do all of the other stuff we had to do before and on days that he
doesn’t have a hot tub he still has a bath.
What it has meant is that the overall condition of the skin has
improved, the skin is easier to exfoliate (as opposed to having to scrub after
each bath which Alfie hates, we now only exfoliate after going in the hot tub
and not on bath days). It hasn’t cut
down the length of time that we take to look after Alfie’s skin but it has made
him more comfortable. Once huge benefit
to him is a reduced amount of skin infections and need for antibiotics (I think
there has only been one lot of oral antibiotics in the last year). Since using the hot tub, the skin on Alfie’s back
has improved the most and to look at it, looks almost unaffected. There has been the odd occasion (a handful
of times) where we have got back home late from being out for the day and we
have been able to put Alfie to bed without cream and this would be unheard of
prior to having the hot tub.
In practical terms, we use the hot tub twice a week for
around 45 mins to an hour. We then
shower Alfie afterwards to exfoliate his skin and remove the chemicals we have
to put in the water to keep the hot tub clean (bromine and a mineral
cartridge). There has been some
discussion about how hygienic the hot tub is compared to the bath. Obviously with a bath you are using clean
water every time but with the hot tub, the same water stays in for 2 months
(for regular users you can leave the water up to 4 momths). The chemicals we add to the water keep the
water clean and we use a net to remove any loose skin at the end of each
session.
Cleaning the hot tub takes a
while though. I pump another chemical
through the system for an hour, then empty the water (takes about 30 mins with
our pump), clean the inside of the spa, clean the filter (with a toothbrush to
remove any skin stuck in there which takes ages!), refill the tub (3 hours) and
reheat (10 hours). We have to check the
water every few days to ensure the water chemistry is safe.
There is also a running cost which you need
to take into account – the electricity to run it but also to heat it, the cost
of chemicals and servicing. There was
also the cost of installation – we needed a crane to lift it over the house as
there was not enough space to get down the side and then we had to get
electrics put in. We also needed some
sort of rain cover as we need to be able to use the hot tub all year round so
our very lovely friend Paul Kerr designed and built (with the able? assistance
of Lee) what we now call the ‘Kerr-gola’ which has an opening and closing
roof.
We did a lot of research and
investing in the hot tub wasn’t something we took lightly.
I think it is really important to say here that this is just
our experience. This technology may not
work for every type of ichthyosis, it may not even work for others with the
same type of ichthyosis as Alfie because how the ichthyosis presents varies so
much between individuals, it may not help Alfie forever, there has been no
research and it is expensive to buy (and to run). But for Alfie, at the moment, it works.
My advice for people who are interested in this for the
treatment of ichthyosis is to try it before you make your decision. Many hot tub retailers will offer wet test of
tubs with microsilk and retailers in the USA will often be able to arrange wet
tests of the baths. The cost of a hot
tub or one of these baths is significant to then find out that it either
doesn’t work or even worse that it makes the condition of the skin worse. Do you research, ask loads of questions,
weigh up your finances and please please please
try before you buy!
Information on the microsilk technology can be found here:
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