Outside the box

I have talked a little bit out the fact that we make adjustments for Alfie to allow him to do things as other children do.  We have to accept the fact that living with ichthyosis does mean that certain things are harder, we can make adjustments for some things but there will possibly be things that Alfie just cannot do because of his skin; we are still learning.  I wanted to give you an insight into some of the adjustments we make.

Holidays: We have to have a bath wherever we decide to stay – easy right? You would think that it would be easy to find accommodation abroad that had a bath but last year we decided to go to Lanzarote and we found it really hard to find somewhere.  We wanted an apartment as opposed to a hotel but most only had a shower and we could let Alfie go for a week without a bath.  We ended up paying a bit more to get a villa so we could have a bath!  We also decided to go away in November when the weather is not as warm as Alfie struggles with the heat a lot. 

Swimming: I wanted Alfie to have swimming lessons. My main reason for this is for safety and I want him to be able to be safe around water but also because swimming is a lot of fun.  We found a great swim school local to us and I signed him up for lessons which he absolutely loves.  But swimming with ichthyosis isn’t a quick get changed, in the pool and then get changed again.  We have to apply really thick ointment (think along the lines of lard!) prior to going in the pool and as Alfie swims with a float belt, I have to apply a dressing around his middle so it doesn’t rub his skin off.  Sometimes if his skin is sore, he swims with arm discs instead of the belt as they are more comfortable.  Alfie is less flexible than other children due to his ichthyosis and he has his own technique for swimming.  He also struggles to get out of the pool unaided which we are working hard to find a way of him doing this by himself.  He has been swimming for a year now and has made a huge amount of progress in this time; he has gone from crying and clinging to me for the whole lesson to wanting to do everything without me holding him and even jumping in by himself.   After swimming, we have to shower the pool water off and dry thoroughly.  We wait until we get home and reapply loads of cream because Alfie’s skin is very dry after being in the chlorine pool.  When he swims with school he will need extra time to be able to get changed and apply cream.  It may be the easy option not to go swimming but we will continue to do it because Alfie absolutely loves it.  And credit to Vicki Jones @ Little Rockets for coaxing the swimmer out in Alfie!!

Heat:  Alfie cannot sweat efficiently due to his ichthyosis and does not tolerate heat very well.  He overheats very easily which can be dangerous if not spotted and dealt with quickly.  Initially Alfie didn’t seem too bad in the heat but over the last year he seems to have become increasingly intolerant to it and anything over around 20 degrees C becomes uncomfortable for him.  If we can, we try to stay out of the direct sun as this makes overheating worse, we go outside in the mornings or afternoons if we can.  But sometimes we do have to be out when it is hot and for days like this we have an array of cooling methods.  I am obsessed with checking the weather and if I know it is going to be hot when we are out I make sure that we have a cooling scarf (designed for hot flushes!), an evaporating cooling towel, a cooling spray and a handheld fan with us.  Alfie has started to tell us if he feels hot so we are able to deploy our cooling arsenal!  We are currently waiting for a cooling vest to be delivered and this will help a lot in the summer.

Suncream: You would think this was easy to sort out but having tried a lot of different ones out it is hard to find one that suits ichthyosis skin, especially for a child.  Most childrens suncream is thick, white or coloured to make it fun…not fun if you have ichthyosis; if you use that blue suncream it will stay on ichthyosis skin and your child will look like a smurf for 3 days until it comes off!  Many suncreams are drying for ichthyosis and they stick to the dry areas making them even more dry.  We have now found a spray that works for Alfies skin but we need to make sure that we apply his regular cream at least 30 mins before we need to apply suncream (try explaining that to a child who just wants to go outside to play!)

Messy play: Sand, paint, glue and glitter – all stuff that small children like to play with and all stuff that can play havoc with a child with ichthyosis who is covered in greasy cream.  This was a discussion point when Alfie started at pre-school because, like many pre-schools and nursery schools, they do a lot of crafts and messy play.  We as parents and staff at pre-school all felt that it was important that Alfie was able to join in with things as much as possible.  He is allowed to use paints and glue as any other child would, we just ask that his hands are washed straight after so that the paint or glue doesn’t stay on the skin.  We do try to avoid sand and glitter if it is early in the day and it can’t be washed off quickly as these do stick to the skin and make him sore.  But he is allowed to play in the sand if we are taking him home straight after and I can hose him down!! We also have some prescription silk gloves that Alfie can wear if he wants to; they are thin enough that he can still paint etc but they act as a barrier to whatever material he is using.

These are just some of the adjustments we make on a daily basis.  Alfie isn’t really aware of them happening, they are just part of his normal day to day life.  But every new experience and activity for us as parents means that we have to think of possible ways round them for our child.  You hear about ‘life hacks’, those little things you do to make your life easier – we are experts in those!!