Thank you

So Ichthyosis Awareness Month 2017 is now over but for us and many others, our life with ichthyosis continues.

The aim of starting this blog was to give you all an insight into our lives as a family and to give you an insight into something that you may not know much about.  Some of you that know us personally will know some of the stuff I have spoken about, some of it I have only told a handful of people and some of it I have never shared. 

Another reason for starting this blog was to hopefully help other new families starting out on their ichthyosis journey; we felt very alone in the beginning before we connected with other families and I wouldn’t want anyone else to feel like that.  I found that it was nice to be able to see how things would be in the future for our son, it helped to have an insight from other families so that is what I wanted to do here.

 I have really enjoyed writing the posts this month and will continue to upload new posts as and when I feel I have something to share with you all (definitely won’t be every day as I’m pretty worn out!!)  I hope that you have all enjoyed reading my daily posts, I hope that you have learnt some new facts and words and I would encourage all of you to now go and spread the word, tell someone about ichthyosis.  Next time I have to tell someone about Alfies condition it would be lovely if they responded with ‘oh yes I have heard of that’ instead of the usual blank look!!

Writing the blog this month has not been easy and there have definitely been some posts that were very hard to write.  I would like to thank my guest posters this month; Lee, Rebecca and Mum.  They have saved me from having to write everything completely myself (!) and it was nice for me to read things from another perspective too.  Also thanks to the star of the show Alfie for his input!!

Finally, a HUGE ‘thank you’ to everyone who has read or shared my posts every day and for the lovely positive comments I have received either via the blog, text, facebook.  And thank you to the wonderful ISG and to Ichthyosis Awareness Worldwide for letting me post on their pages every day during May.

 

Right, I’m off for a lie down in a dark room!  Someone send gin please!

Hopes and dreams for the future

When we had Alfie everything kind of got flipped on its head.  Our world sort of got knocked off kilter and we weren’t sure what direction we were headed in.  In my head I had a plan of how I wanted my life to pan out and having a child with a rare medical condition hadn’t featured in that plan.

I remember having a particularly tearful conversation with my mum fairly early after Alfie was born.  I was in that irrational, new mum, hormonal and also going through some post natal depression state.  I remember saying that my plans for having more children after Alfie had gone out the window.  I couldn’t see a way past ichthyosis and looking after Alfie.  I couldn’t see how we would get back to having a ‘normal’ (shudder at the word) life.  I couldn’t see how we would ever be able to do things that other families do, I couldn’t contemplate having more children and I didn’t know how we would manage.  My counsellor called it ‘catastrophic thinking’.

Thankfully I came out of that, a little medication, lots of talking and some therapy helped me to see that I was in a very negative spiral and was thinking about things way too much and putting too much pressure on myself.  Once things had settled down, I was starting to feel better and we had got in a routine we started to feel a bit more like actually this was going to be ok and we had to come up with a new, improved life plan.

We always wanted two children but after having Alfie and dealing with ichthyosis, post-natal depression and also a fairly nasty flare up of crohns disease for me, we weren’t sure that we would have any more children.  For a while we settled on the fact that we would only have Alfie but then as time ticked by it felt like we weren’t quite complete as a family.  Making the decision to have another child was not easy.  I had been fairly poorly after having Alfie, a combination of mental and physical health issues was not something I wanted to repeat again and was a negative mark against having another child.  Then there was ichthyosis to factor in.  How would we cope with doing all of our daily ‘skin’ stuff as well as dealing with a new baby and possible health problems for me too?  We didn’t know the reason behind the mutation on Alfies K10 gene; could it have been something to do with medication I had to take for crohns disease, was it an environmental factor; there is no way of us knowing how it happened so there was a possibility of it happening again.

When I fell pregnant with Rene we obviously had to describe ichthyosis to a whole load of new medical professionals.  It was on all of my hospital notes and we had to see a consultant at the hospital (who had never heard of ichthyosis obviously).   I was told that the baby could have genetic testing to determine whether it had ichthyosis too but that they would only test me if a positive outcome would mean that we would not go ahead with the pregnancy.  This was a no brainer for us; we did not have the test done. 

Alfie had a dermatology appointment whilst I was pregnant and our regular consultant was away and the person we saw was very concerned that the team at Birmingham should have a plan in place in case the baby was also born with ichthyosis.  My thinking was that we didn’t need a plan because in the, highly unlikely, event of the baby being born with ichthyosis a) we would know what it was straight away and b) we would know how to care for a baby with ichthyosis and had all the medical supplies we needed at home.  Luckily the nursing team agreed with me! Having another baby with ichthyosis would not have bothered us; if we were greasing one child up we could do two.  But no idea where we would have put another cupboard full of creams!

Rene was born on 15^th January 2016, 2 weeks over due and 23 hours after being induced, she had to be evicted from her cosy nest by emergency c-section.  Lee was able to come in with me to theatre and as soon as they whipped her out, I was asking how her skin was because needed to know if she had ichthyosis before anyone rubbed her down.  I think the midwives were a bit puzzled as to why I was asking such a bizarre question but I had to know!  I had to stay in the hospital for a bit after Rene was born and so many of the midwives who came to see me had heard about Alfie from the team that looked after us when he was born.  I think he is famous at Burton Hospital!

Having been through a tough time as a family, we are now much more positive about the future than we were 4 years ago.  Ichthyosis is a part of our lives now; it has brought some dark times, a lot of pain, tears and heartache.  But it has brought us closer as a family, it has given us lots of positive new experiences, it has changed our outlook on life and it has connected us with new friends from all over the world. 

We can never know what the future holds but I for one have learnt not to worry about it so much. Life dishes out some pretty shitty cards sometimes, but as in poker we put on our poker faces and go all in; sometimes you lose but sometimes you win.  We will just deal with stuff as it comes; as a family.

How does it feel

So many people ask me questions about Alfies skin and ask me things like ‘how does it feel’ and ‘will this hurt him’ or say things like ‘that must be sore’ or ‘that must be painful for him’.  Honestly, as a parent who does not have ichthyosis, it is impossible for me to really answer accurately because there is no way of me knowing for sure. 

I can never really know how Alfies skin feels on a day to day basis.  He can tell us when he is sore or itchy or when he has a blister but he can’t communicate how his skin feels on a ‘normal’ skin day because he doesn’t know any different, it is Alfies ‘normal’.  Describing how you feel daily is a funny thing; having a long term medical condition myself I kind of get it because I can’t really remember not feeling like I do now.  And again, like Alfie, I can say when I am in pain or when I feel more uncomfortable than normal but on those normal days when I know I don’t quite feel ‘right’ but I can’t explain exactly what that feels like.

But I like to think that I am pretty in tune with Alfie and I can read him pretty well by now.  Alfie is very brave and even when we know he is sore, he will never say that he is because he doesn’t want to stop what he is doing.  Sometimes as parents we have to stop him from playing so that we can deal with a blister or sore skin and we have to make that decision for him to stop him from being in any more pain afterwards.  Alfie would keep going despite anything that ichthyosis throws at him.

What I do know about Alfies ichthyosis is that yes, it is sometimes very sore, it is itchy and it does hurt.  It doesn’t always hurt and it isn’t always itchy but we can recognise when Alfie starts to feel that way and he is also able to verbalise it more now he is a little bit older.  Alfie will sometimes cry because he is sore or his skin feels stiff and that is when we know he is in a lot of pain because most of the time he gets on with things without complaint.

I have been asked a few times about handling Alfie, physically.  Sometimes people are scared to touch him or scared that they will hurt him.  And I can understand that because when Alfie was born I was scared about those things too.  My response is always that you just handle Alfie in the same way you would any other child but you bear in mind that he does have fragile skin and may be sore sometimes. Obviously we wouldn’t want you to be throwing him around and being particularly rough with him but equally we do not need to wrap him up in cotton wool.  You can usually tell by the way Alfie is walking or carrying himself that he is sore so you would then adjust how you picked him up for example.  Sometimes Alfie has a blister or a sore patch of skin that we don’t know about and he will say so if we pick him up and it hurts him.

When I think about how Alfie feels now when he gets a blister or a rubbed area of skin and he tells us that it is really sore and that it needs a dressing on I always get a little voice in my head saying ‘imagine how he felt as a baby’.  Thankfully Alfies blisters and peeling skin are less frequent as is the nature of his type of ichthyosis but thinking back to when he was a baby makes me feel quite awful because he must have been so sore all of the time but there wasn’t really anything I could do to take that pain away.

I always describe Alfie as hard as nails.  It is not nice to think about but Alfie has been through quite a bit of pain in his short life and as a result, can cope with quite a lot before it registers.  For example, Alfie can fall over and take a load of skin off; many other children would be in floods of tears but a lot of the time we don’t even know Alfie has damaged his skin.   We would never know that Alfie was getting another tooth because he never cried, never woke in the night because of teething.  The only way we would know Alfie was getting a tooth is because his skin would go very dry on his back right before a tooth popped through!  Alfie will rarely cry when we burst blisters and he will lie still if I have to remove a hair or something that has got stuck under his skin (if a pet hair or some fluff gets on Alfie, his skin will grow over the top of it very fast and we have to get it out with a sterile needle or he gets an infection.)  He never complains of feeling poorly even when he is. 

Alfie has only ever really complained about his skin once and that was very recently.  His skin had been fine when I had bathed him in the morning but by lunchtime a particularly big blister had just appeared on the top of his foot.  Unfortunately it was a physio day and we had to go out but I could tell that it was really painful for Alfie to walk so I let him sit on the pushchair with Rene.  When we got home he really was in pain and he sat with me on the sofa (which he NEVER does) so I knew something was really wrong.  Alfies foot was so sore that he couldn’t even walk with bare feet, he was crying despite our usual pain relief.   Alfie had previously been referred to wheelchair services and I wasn’t sure that it was necessary but seeing him unable to walk that day just made me think about the future and how he would cope with walking when he didn’t have Renes pushchair to sit on or if he was on a school trip.  We have since been to wheelchair services and they have approved him for a chair to use when he needs to.  I don’t want Alfie to be singled out for anything else but on the other hand, I would like him to be able to join in things even if his skin tries to get in the way.  Hopefully having the chair will mean that even on the (thankfully) rare days that his skin is as sore as that, he will still be able to do what he would normally be doing and not have to miss out.

I may not know exactly how Alfies skin feels but I can show empathy towards him.  I can try to put myself in his position and I know that like Alfie, I would not let my skin get the better of me but I would learn to listen to my body and give it a break when it needs it. As Alfie gets older I hope that he will be able to tell us more about how he feels and we can learn a little more from him.  Alfie has taught us the very meaning of being brave and being a strong individual; he is our super hero.

A post from Granny Granny Gran

Todays blog is a guest post from my mum.....

My name is Karon, Catherine’s Mum and Granny to Alfie or Gran when he wants to tease me - my little super hero!

I am going to try not to repeat what has already been said, but I do want to say something that I probably have not said directly to Catherine and Lee and that is they are amazing parents.

It has not been an easy 4 years for any of our close family but in particular Alfie and his loving and caring Mummy and Daddy.  From the day Alfie was born I have tried to help Catherine and Lee out as much as I possibly can trying not to forget the rest of my family. It has been a juggling act sometimes, but one act I would not even think twice about doing. 

In the first few weeks I spent a lot of time helping to bath, cream and bandage Alfie, feeling very scared that I wasn’t doing the right thing, using the right creams, cutting the bandages the right length and using the right colour bandages for each part of his very tiny body.  I felt the need to know how to do all of this in order to give Catherine and Lee a break if they needed it.

We have shed a lot of tears but we have also had a lot of laughter, the first time I said to Catherine and Lee, pop out and do some shopping, have a cuppa, don’t hurry or worry I will be fine looking after Alfie.  On their arrival home, skin-wise all was well! The sofa however had suffered a nappy explosion, I was trying to change Alfie’s nappy on my lap…. Never again!!

Catherine and Lee have probably thought I have been very heartless and emotionless (editors note: we definitely 100% don’t think that!) at times but I have tried not to get upset in front of them and never in front of Alfie, I saved all my tears usually for the journey home.  As parents and Grandparents all you wish for is for your children and grandchildren to be healthy, I would swap with any of them any day if I could.

As Catherine has already said, Alfie loves to come to our house for a sleepover and would dearly love to live here and when I asked him why, his reply was, because I love you Granny. I said what about mummy, daddy and Rene, his reply, well they could come too! He melts my heart. 

When he first came to stay without his parents I must admit I was very apprehensive, still worried I wasn’t using the right creams and bandages, whether I had burst the blisters ok and what dressings should I use. This is so much easier now, Alfie just tells me what cream he needs and is absolutely fine when I burst his blisters, which I am pleased to say are very few and far between now.

Alfie sleeps in Catherine’s old bedroom, (soon to be shared with his sister Rene and cousin Phoebe). We have a "drawerfullofcream" and dressings etc., but I am pleased to say I don’t have to use the dressings as often now.  I particularly remember 1 day last summer using about 7 needles to burst blisters. As I burst 1, another and another would pop up.  Holding back the tears while I did it, I was probably singing songs or Alfie was probably reciting the Alphabet forwards and backwards and then quickly, or he would be singing the "Granny's slippers smell of cheese" song. Not true I might add! (another editors note: they actually do smell pretty bad, sorry mum!)

Alfie is such a loving child, he has brought so much happiness to our lives I cannot remember what it was like now without our 3 beautiful grandchildren. Ichthyosis has brought us very close as a family.

Xx

Moving on...to school

Alfie is 4 now and due to start primary school in September this year.  The last 4 years have gone so fast and I’m not sure I am prepared for him to go to school yet!  Aside from the normal parent fears and emotions surrounding your child starting school, we have a whole load of stuff to do before he starts!

Alfies pre-school have been so good at looking after his needs that I worry that no one at school will match up to them!  Navigating the system can be complicated and we are currently in the middle of making sure that Alfie has everything in place that he needs ready for September. 

Because Alfie has mobility issues as well as needing skin care throughout the day, his pre-school suggested that he should be referred to the Early Years Forum and they would be able to offer some input into producing a care plan for when Alfie goes to school.  The referral system takes a very long time and is quite complicated so I was happy that I had support from staff at Alfies pre-school who have helped navigate the system!

We submitted paperwork (lots of it!) including reports from all of his various medical professionals and it was decided that Alfie should have an Educational Health Care Plan (or EHCP).  The process was started in October and we finally saw someone in May to produce a report which will feed into school in order for the care plan to be drawn up.   At the meeting in May, Alfie was observed in pre-school and then I had a half an hour appointment to say everything I needed to - which is not very long when you consider the complex nature of ichthyosis and the fact that the people dealing with his case would probably never have heard of it!  I wrote 3 sides of notes on A4 paper to prepare for this meeting to make sure that everything was covered. 

We now have a transition meeting between the pre-school, primary school, me, regional SENCO and the educational psychologist who produced the report and between us we need to make sure that everything is covered in Alfies care plan.

I have heard so many stories from other parents about schools and ichthyosis that I am determined to have a smooth transition between pre-school and school.  I know some of the pitfalls and issues that other parents have come across and hopefully I can navigate my way around all of those!  Having visited the school and from speaking to the head teacher, I feel confident that they will be accommodating and will look after Alfies needs.

But I still worry!  I worry that he won’t be looked after as I need him to be, I worry that he will get hurt in the playground, I worry that other children may be mean to him, I worry that he will be exhausted by school (he is so tired after2 days of pre-school and still naps on days when he is at home!).  I worry about everything!! I know Alfie will enjoy school because he is intelligent and hungry to learn new things.  But I worry about the effect it will have on his health.

Alfie will most likely need someone to be assigned to him to look after his needs.  He will need someone to apply creams, administer dressings and bandages.  It will need to be someone who Alfie likes and trusts and who is in tune with him enough to notice when he may be uncomfortable, sore or is starting to overheat.  The person responsible for Alfie needs to recognise those little cues that so many people wouldn’t notice.  Ideally I would clone myself! I know I have to relinquish control (again) and let someone else take care of my boy whilst he is at school in the same way I had to when he started pre-school but for some reason starting school just seems so much harder!

Like everything else though, we will find a way of making school work for Alfie, we will make sure he gets the care he needs while he is there and we will find ways of allowing him to be involved in everything that school has to offer.  But I am a mum and I will worry about him forever!

Shhhh...talking about difference

Following on from the blog about emotional wellbeing I decided to write todays post.  So many people (mainly other parents) ask how they should speak to their child about differences and how best to educate them.  I am in no way an expert on this and these are just my opinions.

If you have a small child you will know that they as a LOT of questions, sometimes not always at the most appropriate time.  By the time children get to Alfies age they will start to notice smaller differences between people as well as more obvious ones. How we respond to questions from our children is important.

Here is how I would handle Alfie asking questions about something like a visible difference:

• If I spotted that he had noticed something I would ask him if he wanted to ask me anything about it.
• Keep answers simple, answer as directly as I can and be honest if I don’t know the answer to a question. 
• Explain that there are lots of differences between people. For example, his skin is different to mine, as is his hair colour etc. Also emphasise that there are lots of similarities also – similar interests etc.
• Don’t speak negatively, and don’t say things like ‘don’t stare’ or hurry him along for looking at someone as that just makes the person he has seen uncomfortable.

Kids will always ask questions because that’s what they do and they are still learning about the world.  It is our reactions to those questions that shapes they way they develop.  In addition to speaking to children about differences in other people I think it is also worth mentioning here that we talk to Alfie often about his skin.  We talk about how it is different and we answer his questions.  The reason we do this is so that if anyone asks him about his skin (which they inevitably will) he is able to answer and won’t feel on the spot. We compare our skin and talk about the differences that we can see; I have eczema so we look at how that is compared to Alfies skin.  We should embrace difference and not shy away from talking about it.

There are a number of good resources out there if you want to discuss difference with your children. Good ones I have found are:

Elmer the Patchwork Elephant by David McKee 

https://www.amazon.co.uk/Elmer-David-McKee-ebook/dp/B009H5IVEG/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1495719330&sr=1-1&keywords=elmer

True Bluehand  by Ainsley Kyder-Gould

https://www.amazon.co.uk/True-Blue-Hand-Ainsley-Kyder-Gould-ebook/dp/B0191M2RVC 

https://www.facebook.com/truebluehand/

Wonder by R J Palacio

https://www.amazon.co.uk/Wonder-R-J-Palacio-ebook/dp/B00755MHXG/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1495719433&sr=1-1&keywords=wonder  

This has also been made into a film, coming out soon: 

https://www.youtube.com/watch?v=ngiK1gQKgK8

Its only skin 2: Emotional wellbeing

With a skin condition much of the focus is on the physical aspects and the things you can actually see but we must not forget that mental health and emotional well-being is just as important and just because it is not visible, doesn’t make it any less of an issue. 

Something I have noticed from being a parent of a child with ichthyosis is that a lot of the medical care (actually all of it in our case) is focused on the physical aspects of ichthyosis.  No one really asks if Alfie is ok (in a non-physical sense).  Luckily we as parents keep a close eye on Alfies emotional well-being and would flag it up with our medical professionals if we thought there was an issue but I   wonder how much support there is available for older children/teenagers or adults who may struggle?

As parents of a child with ichthyosis we have found it really helpful to join the Ichthyosis Support Group and connect with other families.  Other families and people with ichthyosis can really understand what we as a family go through and what Alfie as an individual with ichthyosis goes through and the kind of support he/we need.  The fact that we have formed strong connections with other families and individuals means that hopefully in the future Alfie will also have someone he can talk to about things if he doesn’t want to talk to us, he will have people around him who will understand first hand.

Pre-school/school can be a hard time for so many children and I worry that having a visible condition could make things even harder for Alfie at some point in his life.  Children on one hand can be so innocent and may not even be aware of or care about any differences but others can be cruel (not always intentionally but even unintentional comments or actions can be hurtful).  Obviously staff at schools etc are trained to recognise signs of bullying or similar issues and would hopefully step in and make sure it was stopped early on but I feel that it is important that they also recognise that certain individuals can be an easy target because they stand out more than others for whatever reason.

As Alfie is 4, he is just starting to become aware that his skin is a little different from other children but it does not bother him and I hope that it stays that way.  When Alfie talks about his skin we try to have a conversation about everyone being different in lots of ways and that it doesn’t make anyone better or worse because of those differences.  In the same way that I hope others will be kind to Alfie, I hope that he will also be kind to others.  I hope that having ichthyosis will have a positive effect on my child and that it will mean that he can show empathy and kindness to others as we would expect people to be like that towards him.

I have heard many stories from adults who had a hard time at school and I will be honest, it scares me.  But I am also a fierce mama and I will always be in my sons corner even when he is grown up, not to fight his battles for him but to prepare him to fight them himself and to ensure that he is a strong character who is able to deal with what life throws at him (that goes for all aspects of life, not just when dealing with ‘skin stuff’) 

In the future I would like to see more emotional and mental health support coming in as part of the care for people with long term medical conditions, not just ichthyosis.  I think that this side of things is not talked about much, and is often ignored until it is staring you in the face or you go and ask for help.  Perhaps more support would help to catch issues earlier? 

I think my main point here though is that as parents we should not forget to consider emotional well-being as well as all the physical stuff, there is help and support out there if you need it, you just have to ask which is sometimes the hardest part.  And also, watch out for each other and be kind!!

Its only skin

I talked a little bit about what ichthyosis was quite early on in the blog but I wanted to delve in a little further.  Ichthyosis is a group of skin conditions and it is very easy to assume that it just involves the skin.  This couldn’t be further from the truth.  When I use examples in this post I am talking from experience of being a mum to a child with EI (Alfies type of ichthyosis) but they are not exclusive to this type.  All types of ichthyosis come with their own set of issues but many are common across the different types.

Dry, flaky skin:  This is a staple characteristic of ichthyosis.  When I say dry, this is not the dry skin that people with (and I hate this word but can’t think of another more suitable one at 11pm) ‘normal’ skin get that can be resolved by a little bit of lotion; this is chronic dry skin that can absorb even the thickest of greasy ointments.  Alfie once described the puff pastry pie lid he was eating as looking like his skin and he was right!  The skin requires moisturising multiple times a day to stop it from drying out completely.  The skin flakes a lot and we often find large bits of skin around the house; this does not bother us in the slightest, we can always tell where Alfie has been and I like that he leaves a little trail.

Itching:  Mostly this comes from the skin drying.  Anyone with a skin condition knows that the dryer it gets, the more itchy it gets.  The itch can drive you crazy.  Alfie does get itchy, especially at night and as we have had to share a room with him recently due to building work at home we have noticed it more; he is constantly fidgeting in bed and rubs his feet together! He will itch his scalp when he is tired or hot and he will itch at other parts of his body when he needs cream on.

Blisters: This characteristic is (I think) exclusive to Alfies type of ichthyosis.  These are not like blisters that you or I get.  They can be caused by heat, friction, infection or trauma to the skin and they can also appear randomly out of nowhere.  These are also unlike regular blisters in that we cannot leave them to go by themselves because they are very painful and they just get bigger.  We have to burst them with a sterile needle and dress them if they are infected.

Fragile skin: Alfies faulty keratin gene means that the layers of skin do not hold together properly.  If he knocks himself or falls over he will take the top layers of skin off leaving red raw, sore skin that is easily prone to infection.

Thickened skin: Ichthyosis skin grows much faster than regular skin but it does not shed at the same rate.  The skin builds up into thick plates, scales or in lines.  For Alfie this is mostly around his joints.  The thick skin can crack easily which is sore and can lead to infection.  We aim to keep the skin exfoliated as much as possible to reduce the cracking without making the skin so soft and thin that it becomes very fragile.

Infections: Ichthyosis skin is prone to infection.  Over Alfies 4 years he has needed quite a few courses of anti-biotics for skin infections.  The first time that Alfie got an infection was very scary.  He had a small 10p size blister on the base of his back that became infected.  Over night the infection had spread to half of his back.  We now know what to look for and make sur we catch infections early before they have chance to spread.  We can usually catch the infection before we need anti-biotics and can treat it with hydrogen peroxide cream and specialist dressings.  If left untreated, in certain circumstances, skin infections can be life threatening.

Mobility:  Alfies mobility has been affected by his skin.  When he was a baby he held hi body in positons that were comfortable for him.  Over time his muscles and joints became tight and he needed physiotherapy.  He never rolled over or crawled as a baby and was late walking because of this.  He still walks slightly differently to his peers and his balance is not as good as his peers.  He find his own way of keeping up with his friends though and never lets his mobility get in the way of having fun.  Alfie has daily physiotherapy to help him with the joint and muscle stiffness and this has improved a lot.  Alfie cannot always walk as far as other children and we currently have a board that attaches to Renes pushchair and if he gets tired, he hops on and hitches a lift with her.  When Rene outgrows the pushchair we will have to consider the possible use of a wheelchair if his feet are sore or if he cannot walk far.

Overheating:  Many people with ichthyosis cannot sweat and therefore cannot regulate their body temperature.  Alfie does not struggle with the cold weather but the warmer weather is becoming an issue.  He seems to be ok in anything up to around 18 degrees C but anything over that, especially in direct sunlight, seems to be problematic.  Overheating and heat stroke can happen very quickly for people with ichthyosis so we have to be able to recognise the early warning signs of overheating and we act quickly to cool him down.  Early signs include scratching the back of his head, neck or ears, red face, irritability.  Alfie will sometimes tell us that he is hot as he is starting to recognise signs himself.

Ears:  Many people with ichthyosis have issues with their ears.  Ears can become blocked with a build-up of cream, skin and wax.  Alfie has his ears checked every 6 months when we take him to his dermatology appointments.  He has them cleaned out as needed but luckily because we have them checked regularly and we clear away any lose skin we can see, he has never had any problems with his ears. 

Diet:  Due to the high regeneration of skin cells, people with ichthyosis use many more calories than usual.  Alfie struggles to put weight on and can easily lose weight if his skin is sore or is healing from an infection.  As a baby Alfie was prescribed a high calorie formula to enable him to put any weight on.  He eats like a horse now but still struggles to put weight on so he also has 2 high calorie supplements every day which add up to an extra 350 calories extra per day.  Even with the supplements, he is lighter and shorter than most of his peers.

There are other things associated with ichthyosis that I haven’t mentioned, some things run across the board whilst others are very type specific.  The point of todays post was to highlight that ichthyosis is so much more than just dry skin.  It affects many aspects of life, not only the skin that you can see.

The actual cupboard full of cream

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!

Happy birthday Alfie!!

Today is Alfies 4^th birthday!!  It always seems fitting that he was born in Ichthyosis Awareness Month; he was supposed to be a mid-June baby but maybe he wanted to make an appearance early to make his point?!

It doesn’t seem 5 minutes since Alfie decided to make his dramatic entrance into the world and turn our world upside down as only a new baby can.  Four years of being parents and Lee has lost more hair and mine has turned grey (or special blond in the words of my Bro-in Law Owain)!! 

Here are a few facts about Alfie, according to Alfie:

What is your favourite colour: Blue and white (not blue AND white but blue and white together like in stripes, get it right mum!)

Favourite number: googleplex (ask Lee or google it, I have no idea)

Favourite animal:  Rabbits and if he had a rabbit he would call it Alistair obviously (for those of you reading that don’t know us personally, Alfie has a toy rabbit called Alistair aka Alis or Ali-bongo who likes to boing everywhere)

Favourite tv programme: ‘Do you know’ on cbeebies.  Alfie is slightly obsessed with this show and to be honest, as kids tv goes, it is pretty good and I have learnt some stuff!

Favourite song: ‘Good grief’ by Bastille!  A song about grief and funerals maybe isn’t everyones idea of the perfect pre-schooler play list but he loves it and knows most of the words. And has his own actions to go with it.  Also loves ‘Hammertime’ (You cant touch this by MC Hammer) and makes me do the ‘wobble dance’ on a regular basis (who needs the gym!)

Favourite food: Fingers chips and peas – obviously.  But also loves chicken pie, spicy sausage pizza and curry. 

Favourite person: Rene (or Renie-girl as Alfie calls her) his baby sister.  Loves her to bits and is always looking after her….until she wrecks the game he is playing and then she’s in trouble!

Being a parent to Alfie is a whirlwind experience.  He drives us crazy sometimes, he is stubborn, he is irrational and he gets serious ‘hanger’ (hunger-anger) and sometimes I would consider selling him on eBay (joking obvs!)  But Alfie is also funny, charming and mischievous.  He likes to play jokes on you and tease you. He is the most intelligent, crazy, caring and loving child I know.  He is super clever and inquisitive and is not satisfied by a simple answer; he wants to know the ins and outs of whatever it is that has grabbed his attention that day (why is it raining, what are clouds, where does rain come from, how does the water get in the clouds – cue mummy dusting off her a-level physical geography notes to explain the water cycle).  He can count to 100, knows the alphabet backwards and he can tell you what yeast in bread is for (thanks to Maddie Moat and cbeebies for that one!).  He is gentle, thoughtful and loving, kind to other children and sees the good in people.  Alfie nearly always has a smile on his face (not if he’s hungry though, seriously, watch out!), he is a happy boy and hardly ever complains about his skin even though we know he is sore at times.

Alfie has taught us that things don’t always go to plan, you have to be flexible, you have to think on your feet and you have to fight.  He has taught us how to be strong, that we are resilient and that a smile on your face makes you feel better.  Alfie has changed our lives for the better.

Happy birthday Champ!!.  Kiss, cuddle, cuddle, noses, love you xxx

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!! 

Let it go

Feel free to sing the Frozen song if you must!  Today is about that day in most parents life when they have to relinquish some of the control and let go.  I’m talking about child care.

From talking to many parents, sending their child to nursery/pre-school/child-minders etc for the first time is one of the hardest parts of parenting.  That child that you have been looking after since they were born suddenly has to be looked after by someone else..eek!  I decided to be a stay at home mum when I had Alfie and we found out about ichthyosis as it felt like the best decision for us as a family.  We have had lots of support from my family and have trusted them to look after his skin from the beginning.  But I did not feel comfortable with anyone else looking after him, let alone put him in childcare.

But, the time came when I knew I had to put my fears aside and send him to the village pre-school.  We knew a lot of the staff from the pre-school already as they also run the parent and child group in the village and we have been going to that for quite a while.  I spoke at length with them about my concerns and what kind of support Alfie would need and I felt confident that they would look after my little boy in the right way.

Alfie did not start at the preschool until he was 2 ½ which is later than most of his peers but I didn’t want to send him until I knew he was ready (physically and mentally).  He initially started for half a day but now does 2 full days and loves it.

Prior to Alfie starting I produced a care plan and went through Alfie’s skincare regime with the staff.  I provided them with a box full of supplies and they also received training and support from Alfie’s specialist dermatology nurse (another reason I wish people with all types of ichthyosis had this service).  Ichthyosis is rare and we wanted the staff at the pre-school to feel comfortable with it as much as we as a family needed to.  We needed to be sure that everyone was confident in how to look after a child with ichthyosis.  It was especially important to us that Alfie felt comfortable there  because having your cream applied is a very personal thing and is weird if you just allow anyone to do it. 

Alfie has done so well at pre-school.  He has accomplished so many new things whilst he has been there and he has a special bond with some of the staff.  The pre-school make adjustments as we would at home so that Alfie is able to join in with all of the activities and they have the same attitude towards this as we do which was hugely important for us.  They have been un-phased when dealing with Alfie’s condition which is just how I needed them to be as a parent.  I can leave Alfie there in the knowledge that he will be looked after, he will have his cream applied as necessary, if he falls over they will know what to do, they know what to look out for in terms of discomfort and overheating.

The pre-school have been a great support to me as a parent as well.  They have provided so much advice on additional support that is out there and have been instrumental in making the transition to school in September a smooth one.   I will be sad when Alfie leaves pre-school in July and I wish I could clone the staff there and send them with him to school.  I can only hope that staff at school are as wonderful as the ladies at Stepping Stones.

A life less ordinary?

Many of you have asked ‘How do you cope’ as a parent of a child with ichthyosis?  And I find it a hard one to answer.  Firstly because in the early days I didn’t cope very well, but also because looking after a child with ichthyosis isn’t all that different to looking after any other child, it maybe (no, definitely) just takes a lot longer to get them ready in the morning and you have to make some adjustments along the way.

In the beginning we had to adjust to an unexpected medical condition and we adopted a routine that worked for Alfie.  As time has gone on, that routine has become our new normal and we do it mostly without thinking.  Alfie was our first child so we didn’t know any different really, we had no real idea of what to expect as new parents let alone what to expect with ichthyosis.  So when we became parents for the second time, it felt a whole lot easier with Rene; partly because we knew about feeding and nappies and sleepless nights and also because the getting bathed and changed routine was way more simplified.  Sometimes when Alfie stays at my parents and I only have myself and Rene to sort out, I am up and ready so fast that I don’t know what to do with myself.

Our morning and night-time routine is different to most families but we have found one that works for us.  It is long, it can be torturous (when as any parent of a 4 year old will tell you they do not want to sit still!), it can be emotional but it can also be a lot of fun.  We talk, we play games, we watch shows on the ipad, we listen to the radio and sing along just as any family would, we just do it for a lot longer than most!

Having a child with ichthyosis can be mentally tiring sometimes especially if, like us, you want your child to be able to do everything that other children are doing, you want them to join in and be part of things.  Sometimes allowing your child to take part in certain things requires an adjustment or requires you to think ahead and plan for stuff that most parents don’t have to.  Sometimes my brain hurts from having to think ahead all of the time and I do occasionally wish that we could just go somewhere spontaneously without having to pack a bag full of cream, dressings etc.  We would like to not have to worry about the heat/sun/muddy puddles/sand, but we do because we want our child to be able to enjoy those things in a carefree way.  We worry about those things and we overthink everything so Alfie doesn’t have to.

I have been thinking a lot about disability and equality recently and what it means.  If you ask some people about what equality means to them they will say that everyone should be treated in the same way…but I don’t necessarily agree with this.  If you treat everyone the same regardless of ability, it would actually disregard any differences and would not be inclusive.  For example, if we expected Alfie to be able to walk as far as everyone else he would end up with sore feet and blisters, so we make an adjustment; if we expected him to be able to jump in the swimming pool without extra cream on first he would be very dry afterwards.  Equality for me means making those small amendments to life to enable Alfie to do things that others do, it means not discriminating against him because of his skin, it’s not expecting him to be the same as everyone else because he isn’t the same as everyone else, it’s accepting the differences and embracing the individuality. 

Many people also say to me “I wouldn’t have coped with what you have” and my response is that you would because you have to as a parent.  When you are faced with something unexpected as a parent you have to step up, you have to deal with things as best you can, sometimes you have to put on a smile even though you don’t feel like it.  Parenting is not easy in any shape or form, it’s probably the hardest job in the world (aside from being in the SAS or something, I definitely couldn’t do that!!) and whatever your child throws at you (figuratively and literally in some cases) you will find a way of dealing with it, maybe not instantly but you will. 

As parents we fight and push for things when we need to but we need to remember that we are human and it is ok to feel angry, upset, guilty and scared at times.  We must make sure that we have a good support network and that we have people that can understand what we are going through. As parents of a child with a medical condition we also have a responsibility to learn about the condition from other families and from people who actually have the condition.  We don’t have first-hand experience of what ichthyosis is like, what it feels like, so we have to listen to others and learn.

So a life less ordinary?  Maybe a little but it is our ordinary.

How amazing is the NHS

I think in this country that many of us take the NHS for granted and I hear a lot of moaning from people about the NHS (me included on occasion).  I hear that waiting times are too long for referrals, you can’t get in to see your GP, drs don’t know anything, they don’t freely give out prescriptions etc etc.  But have you ever considered what it would be like without the NHS?  What if we had to pay for our healthcare or what if it just wasn’t there at all?

As a parent of a child with ichthyosis we use the services that the NHS provides a lot.  A LOT.  We would be lost without it and we would definitely be financially significantly worse off.  Just off the top on my head from birth to now, we have seen in relation to ichthyosis:

• ·       Midwives
• ·       Paediatric doctors – lots of them
• ·       Neonatal nurses
• ·       Community midwives
• ·       Community childrens nurses
• ·       Health visitors
• ·       Dermatology nurse specialists – community and in hospital
• ·       Dermatology consultants
• ·       Geneticists
• ·       Physiotherapists
• ·       ENT specialists
• ·       Dieticians
• ·       Occupational therapists
• ·       Ophthalmologist
• ·       Cranio-facial consultant
• ·       GP
• ·       Practice nurses at GP surgery
• ·       Post Natal mental health support

I may have missed some off the list.  We see many of these professional multiple times a year at various locations, for free.  Have you ever stopped to think how much the cost to the NHS is for each of these appointments?  For example, missing a dietitian appointment at hospital would cost the hospital £102 – I know because my hospital tells me that when they send a text reminder in the hope that less people will be a no show.

We have a list of prescription items for Alfie as long as your leg (probably around 50 different items ranging from creams to dressings to pain relief and nutritional supplements.  Prescriptions for children are free and covered by the NHS but when Alfie is older he will most likely have to pay for his prescriptions as some of us do.  Currently standing at £8.60 per prescription item and needing around 10-15 items a month, this adds up.   The NHS has a monthly prescription pre-payment scheme for £104 per year and if you have over 12 regular prescription items a year then it is financially worth your while getting one of these cards.

But what if we didn’t have the NHS?  What if the UK adopted a healthcare system like the USA where you have insurance to cover your medical bills?  But what if, like in the USA, some pre-existing medical conditions are not covered by your insurance or your insurance won’t cover the amount you need on a monthly basis?  As an example, one of the creams Alfie uses retails at around £12 for a 500ml bottle, we use 3 of those per month alongside around 4 other creams in equal amounts plus all of the other things we need.  That would add up to a significant amount for us (and later Alfie).

We can’t always get in to see the consultant or the GP when we would prefer to but we have always been able to get a telephone appointment or contact via email to get advice.  We have issues with getting certain items on prescription previously but I have found that a simple conversation with our GP explaining ichthyosis in the first instance has helped (and backed up by dermatology letter if necessary) and we no longer have any problems.  I know we have been lucky with our medical team and others are not as fortunate.  I hear stories of other families having to fight with doctors regarding access to creams etc which really isn’t on. 

Yes the NHS is far from perfect and there is a lot of wasted resources but I for one am so thankful that we have this system in the UK and we should all be a little bit more grateful for the service it provides for us.  We should all do our best to not abuse the system and to make sure that it is protected for our children and future generations.

Big thumbs up for the NHS from team Lancashire!!

Microsilk

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: 

http://www.alrewasunitedcharities.org.uk/

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:

http://www.jasoninternational.com/wellness/microsilkfundamentals.aspx