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!!