And on and on and on…

The bath and cream routine is still on going and will be for the rest of Alfie’s life.  It is what keeps him comfortable and helps to keep his skin healthy.  He doesn’t hate it now like he did as a baby, most of the time he actually enjoys a lot of it (but has his moments).

Our morning routine now is quite slick, especially on days where we have to be out for 9am like the days Alfie is in pre-school. I say slick but it still takes me 2 hours to get everyone up and out of the house.  But we don’t have time for errors in this routine, it can all go to pot quite easily especially when you have a 3 year old and a 15 month old to get ready as well as yourself!  Lee works from home 2 days a week but the other 3 days he has left the house before we get up so it’s up to me to run the operation.

Both Alfie and Rene get up around 7 so I try to get up and get myself ready before they wake up so I can just concentrate on sorting them out.  I get their clothes ready the night before along with any swimming bags/packed lunches/school bags they need.  I get ready and have the bath run  and the breakfast ready for the time the children wake up.  Alfie gets covered in dermol 500 and into the bath (still with dermol 600 or oilatum plus but once a week with some Milton in there to prevent infections). He eats his toast and his high calorie yoghurt in the bath to save us some time! Rene and I eat our breakfast whilst we sit talking to Alfie; it’s not ideal but on days where we have to be out early it’s just practical.

Whilst in the bath, I put a scalp treatment called Cocois on Alfie’s head to try to break down the thick scale on his head (a particularly stubborn area for those with ichthyosis).  He soaks in the bath for around 45mins now to let the thicker skin become soft enough to exfoliate.  We have a lot of bath toys and a radio in the bathroom to keep us occupied.  Rene has a quick bath and gets dressed in about 10 minutes while Alfie is still soaking.   At the end of the bath, it takes 4 washes with medicated shampoo (Capasal and E45 shampoo) to get the scalp treatment out of Alfie’s hair and we give his skin a little rub with a Debrisoft cloth to exfoliate the build-up of skin. We have to be out of the bath for 8am.

After the bath we dry Alfie using a hairdryer now because it takes so long for his skin to dry naturally.  After drying we do an exercise programme produced by Alfie’s physiotherapist.  The series of exercises help to keep Alfie supply and to encourage him to stretch his joints (he has previously held himself in certain positions meaning his muscles have got tight – more on mobility in another post). 

It is then time for cream.  The skin on Alfie’s joints is thicker and prone to cracking so we use a heavy ointment called Aquaphor (not available on prescription so we bulk buy when Lee goes to the USA) to keep him moisturised and supple.  For the rest of his body Alfie prefers a less greasy cream so we currently use Aveeno.  Alfie helps to apply his cream now too, sometimes Rene likes to ‘help’.  We leave the cream for 15 minutes to let it soak into the skin a bit before getting Alfie dressed or the cream just ends up soaking into the clothes and not doing its job. Alfie has an antihistamine medicine to help relieve the itching and sometimes pain relief if he is sore.

Day to day we generally don’t have to apply dressings and bandages daily now.  There are weeks when we don’t have to use anything but then Alfie will sometimes get an infection and we will have to go back to our supplies.  Alfie can also go weeks without getting any blisters and then they will suddenly appear (sometimes we don’t even know why) and we will have to burst and dress them until they have gone. 

We don’t have a set routine of applying cream now throughout the day, we are not strict about when this needs to be done and we do it on an ‘as needed’ basis.  Some days we need to apply loads, some days we don’t need much at all.  We never know what the day is going to be like though so we still have to make sure we take all of our supplies with us.  We still carry a bag full of cream, needles, dressings and bandages everywhere we go just in case.

Bedtime is a little easier now.  We could do a bath every day but we now don’t because Alfie gets so fed up of the routine and we have to strike a balance between what is necessary and what he actually wants.  If he is sore or his joints are stiff or he has blisters or an infection we will do another long bath.  If not then we go straight to creams.  At night we use a thicker cream so it keeps him moisturised during the night.  We use aquaphor on joints again and then either dermol cream or Epaderm cream everywhere else.  Most nights we also use skinnies clothes under his pyjamas which help to keep the moisture in the skin over-night.

Alfie’s skin can get very itchy especially at night so we use a medicine called Alimemazine to help relieve the night-time itch.

There are no breaks from this routine, we do it day in, day out.  We put a lot of effort into looking after Alfie’s skin because we want him to be as comfortable as possible.  At the moment, he does have some input into what cream to use at night and what things he would like to add to the bath as we want him to be included in the decisions.  When we try a new cream, we ask him how it feels and if he doesn’t like it, we don’t use it.  When he is older he will be able to decide how he wants to do things and we will step back.