Hello again

It has been a long time since I wanted to share things here.

Things have been ticking over so nicely over the last few years with Emma that I had reached point where I didn't really have a lot to say.

But that has all changed.  I guess that is the thing with allergies.  You think you know what you are dealing with and wham! something new happens.

Em is 12 now and hitting the turbulent years of puberty.  Puberty is well known in the allergy world as a time when things can change, you can grow out of allergies - YAY.  Not so good it seems for Em is that you can also grow into them.....

Yup another allergy.  Whilst not yet clinically diagnosed (waiting for the appointment at Starship) our GP has agreed with our self diagnosis that something we have been giving her is causing the chronic flare in her eczema.  I was hoping it would be something easy, but unfortunately all the signs are pointing at it being wheat :-(.

So our new journey is slowly taking off.  Today I am starting her on a wheat free diet.

I've found lots of information on feeding littlies on a very restricted diet, but not much info on what to do with an almost teenager eliminating all Nuts, dairy, eggs, shellfish, sesame, kiwifruit, most soy products and now wheat.  What am I gonna feed the girl for school lunches?

So today I sent her off with what looks like a kindergarten snack, not an intermediate lunch, but she was happy.  Her belly full of porridge with blueberries and coconut cream and the promise of a baked potato for afternoon tea.

Blueberry porridge is one of her favourite starts to the day - this is half eaten before I remembered to take a photo.

Corn thins with olivani & marmite, Chicken strips, bluebird potato chips, peaches in mango jelly and fresh strawberries.

I dont think she will be impressed when she gets home starving, but every other option was turned down by her.  She will learn me thinks.

DISCHARGED!!!!!

Last week Emma went for her check up with Dr Purvis, her dermatologist.  This wonderful doctor is responsible for the Emma we now have.  Her ability to the recognise the severity of Emma's eczema and skin infections and suggest and encourage us to try a new treatment of immunosuppressant drugs has changed not only her life, but ours as well.  We no longer have a child whose whole life revolves around scratching until she bleeds and all the behaviours that go along with that.  We have a child whose skin is as good as it will get - it isn't perfect, it's still dry and always will be.  But the thought that we have won our battle against eczema is phenomenal.  Dr Purvis doesn't need to see Emma again.  I will always be eternally grateful to her and I encourage anyone with skin conditions to see her.

Before

After

Yup, it was worth it.

Thanks for reading.

Barbs x.

Drug free

You might remember the problems we had with Emma's eczema.  I posted about them here and here.

Just before Christmas Emma saw her dermatologist as we have done every three months for the last 20 months.  This time it was different.

Dr Purvis took one look at her and said to Emma would she like an early christmas present?

Emma was like " Yeah of course."

"Well," Dr Purvis said "Now is as good a time as any to stop the methotrexate."

Emma was ecstatic.  I wasn't.

Self portrait - christmas time

Emma hated taking those 3 little pills each and every saturday night.

I hated the thought of the horrid eczema coming back.  I couldn't stand the thought of the child being itchy and scratchy again.  I wanted her to keep taking it forever, so good have been the results.

But stop taking it she did.

And so far, so good.  It has been six weeks.

The drug should be out of her system now.

And the eczema hasn't come back.

Sure she has been a little scratchy here and there, she has had the odd itchy skin.  But there aint no eczema.

She is enjoying the swimming in the sea and being buried in the sand.  She is as good as we could have hoped for.

And if we are not mistaken, this might be here to stay.

Of course it might not too.

We bumped into her kindy teacher at the supermarket yesterday.  She couldn't believe how good Emma looked.  We get these comments regularly from people who haven't seen her for a while.

Looking beautiful at our friends wedding

Emma looking fantastic tonight

Would I do it again?  Absolutely.  I am still so very glad we chose to go down this path.  It really has been life changing for her.  

Barbs x.

Methotrexate - a year on.....

It has been almost a year since our beautiful Emma has been on Methotrexate.  And it has been almost a year since she has had any broken skin or any infections and she has hardly even been to the GP.  We no longer need to smother her skin in steroid creams and she hardly ever needs anti-histimine and I can't remember the last time I had to sedate her to stop her scratching herself silly.

Before Methotrexate

A few weeks later

For the most she has had the best year of her life.  There have been a few hiccups, a couple of trips to hospital as a precaution, once for a tummy bug, once for a high temperature - If an immunosuppressed person gets sick, they can go downhill so very fast, so we have to be super cautious and get her sorted straight away.   But these were merely normal childhood illnesses. She has barely missed a day of school in the last 3 terms - compare that to missing almost half of the first term last year.  In fact, this year she hasn't even caught the coughs and colds the other two have had.

Methotrexate has some nasty side effects and I must confess, sometimes on Saturday night after taking her pills, she feels really nauseous and sometimes she is sick.  But even if that is the case, she is usually fine on the Sunday.  We haven't noticed any other side effects - she certainly isn't too knocked out by them like we were told she could be.  Her monthly blood tests have all come back positive.  The only annoying thing is she cant seem to get rid of the molluscum on her back as her immune system isn't fighting it.

For the most, her skin is amazing.  Her hands that have always been a chronic problem but now they look pretty normal - they are no longer cracked, raw and bleeding nor are they infected - and this means Emma will wash her hands better and therefore less germs are spread around.  The skin on her body looks good and clear.  The only area that is still a problem is her feet, but they are nothing compared to what they were a year ago.  Emma has even been brave enough to walk bare foot on the beach and go in the sea.  That is a major breakthrough for her.

Cheesy grin but look at the clear skin

Beautiful Hands

Feet that are healing up nicely

Her dermatologist is really happy with the results.  And whilst we still don't know how much longer Emma will be on the drug, I am hoping that we are about halfway through our methotrexate journey.

I am really pleased we decided to put Emma on Methotrexate.  It is no easy decision to give your child a serious drug.  I rarely take anything stronger than paracetamol myself and felt like the world's worst parent the first time I gave Emma Vallergan (a sedating anti-histimine).  Once we made the decision to go ahead with the immuno-suppressant drug, we knew we would be putting her at serious risk of getting really sick.

But for Emma it has been a life line.  A chance to start living a life that wasn't taken over by her eczema, an opportunity to play at the beach without it ending in blood and tears.  Her school work has improved, she is better at sport,  her attention span has got bigger (yes, really - she is reading books now) and we are seeing on a daily basis what a fantastic kid was hiding behind the itchy scratchy exterior.  Everything is better since we have got her eczema under control and stopped the constant reinfections.

It's hard to believe that a year ago I could never have imagined bed time being like this for Emma.  She would have been writhing around the bed and scratching till she bleed.

Content and happy at bed time

Yeah. CONTENT.  That is the word to describe where we are on our journey.


Barbs x.

Health update

It's been a couple of weeks since Emma has been on the methotrexate and we are waiting to see what happens.  The most pleasing thing is she doesnt seem to be suffering from any side effects.  We were told it would tire her out, make her grumpy and nauseous and generally not able to do things for a couple of days.  However she takes it on Saturday nights and has still been able to play Netball on a monday night and continues to train for the school cross country in a couple of weeks (all three of my kids love cross country!).  And she hasnt picked up any of the bugs going around school yet.  Although it is hard to tell in the photos, her eczema is certainly getting better with all the steriods and antibiotics she is on so she is a lot happier .

Two weeks after starting
 the immunosuppressant drugs

Before Emma started the Methotrexate

Eczema chaos

Well, Emma's poor skin has been so bad this year.  In January we spent a couple of days in starship with massive skin infections.  It turned out she had contracted MRSA, the penicillin resistant superbug. 

MRSA is a staph bacteria that lives on the skin and runs quickly over to any patches of broken skin and causes infections.  Loads of people have it and it causes no problems, most people's good bacteria will fight it if it tries to take hold.  Unfortunately Emma's skin is so red, dry and broken that the bug is continually infecting her.  Her immune system is low and her good bacteria almost eaten away by the bad.  She has had dose after dose of antibiotics, steriods, antihistamine, not to mention the creams we have been putting all over her for years.

Over the last week or so we have noticed that her skin is getting worse than ever.  Her face, normally clearish is red and splotchy, her hands are a weepy mess.  We got an urgent referral from North Shore Paediatrics to Pediatric Dermatolgy at Starship and today we got seen by Dr Purvis.  She took one look at Emma and said things were obviously not working any more and we had to do something serious.  So we are going to try Emma on Methotrexate which is an immunosuppresant drug.  Dr Purvis talked about doing this a couple of years ago, but her skin came right after a focused couple of weeks on skin care.  This time it is the only option available.  Today we had the first blood test to see if she can tolerate it, then if that is all clear we will give her the first dose tomorrow and follow that up a week later with another blood test next week to see if it is causing problems or not.  If we get the go ahead she will be taking it once a week for the forseeable future (maybe 6 months, maybe 2 years.....) but it should give her skin a break and a chance to heal and hopefully break the eczema, itch, scratch, infect cycle.

As a parent, it is a horrible thing to have to subject your precious baby to taking serious drugs but we cant leave things as they are, her quality of life has deteriorated this year.  I want my daughter to be as happy and healthy as she can be and this drug could be the lifeline we have been looking for.