The dreaded 3rd Month

Yes it has arrived in all it's glory!! ... The 3rd month ... and as we've been warned ... the nasty flare up have started .

Eden is now 3 months Cortisone Free and in A LOT of pain!

The red burn is spreading like fire over her body ... her skin is tight ... red ... hot ... and itchy.
Her eyes are swollen, face is flared, mouth is flared.

I kept her home today ... might send her to school tomorrow.

At least we know that this will pass ... she had her first major flare up around 6 weeks ... and that was terrible ... we thought it would never pass ... but it did ... and this time we feel more prepared...not that it makes it any easier....but we are more relaxed this time around.

Now for the good news!!

Even though Eden was so incredibly sick with her first major flare up right in the middle of her exams ... she still managed to make her school's top 20 grade 4 academic learners  ... with 6 distinctions!!!)

We are so proud of her ... and love her so very much.

Back 2 School & starting to flare up again

After a 3 week holiday and staying at home due to terrible flare up 3 weeks prior to the holidays ... she's finally back at school today....so all in all a SIX WEEK "holiday".

Her tummy and chest area is flared up again ... I'm guessing the next full on flare up is going to hit us soon but at least we know it will pass ... and so far she's been incredibly blessed with her recovery. Everyone at the Itsan forum says months 3 to 4 is bad ... and we are heading into our 3rd month.

Below are some pics of Eden during the holidays (she had her friend Kyra visiting). This was the highlight of her holiday as it made her feel normal again ... while Eden's friends are doing everyday normal kid stuff ...Eden is recording her feelings and dreams in her "dream journal" ... all about being normal and eczema / cortisone free ... for good.

So having Kyra over for a couple of days helped Eden to forget about her problems and just enjoy being a little girl.

2 Months Cortisone Free

2 months Cortisone FREE!!!!

Eden's been very emotional, itchy and sore the past few days ... 

We've seen improvement (3 weeks ago she wasn't even at school due to the pain she was in) ... now she's looking a lot better and will go back to school after the holidays.

She's reached that stage where her skin gets so dry she can't straighten her arms properly because it cracks open.

AGAIN ... I must emphasize ... There's HUGE improvement!

My sister saw her for the first time in 2 months the other day and was shocked at the difference ... she said it looks as if someone poured porcelein dust over Eden because her skin is so white (on her face) ... not so much her body).

I guess ... on a scale from 0 to 100 ... Eden is probably 10 % healed.

Her legs are still red at the back and upper thighs ... in fact it runs down her calves. She's got sores (from scratching) from her hands up to her arms, the folds of her arms especially dry and painful....and the rash have slowly started spreading to her back now.

She often cracks and leaks fluid ... and it smells ... strange.

Something else that is shocking to me is how much weight Eden have lost.

She's on a gluten free diet but we have cheat days ... especially when she visits her granny :) (below is a picture of her tummy 2 months ago and what it looks like now) ... I guess she was so bloated from water retention due to the cortisone use.

Eden started a private diary (she calls it her Dream Diary) ... in it she writes all her wishes / dreams. She tells me that unfortunately she can't read any of those entries to me because then her dreams won't come true but she did tell me that it's mostly about her skin and that she wants to be normal.

It's the hardest thing to watch the self confidence in your child go from average to zero...but  I keep telling myself that this is temporary and one step at a time ... at least she's still very young and we've started this journey long before she's a teenager.... I can only imagine how difficult it must be for teenagers.

We've also moved into a new house and Eden has a bedroom with no carpets in ... so happy about that as it's less dusty that way... she sheds skin like crazy and this way we can make sure we sweep up all the dead skin in her bedroom.

So basically ... in a nutshell ... the past 2 months have been incredibly exhausting ... busy ... crazy with a roller coaster of emotions...but we are 2 months cortisone free and not looking back.

All-in-all ... we are happy despite life's challenges.

almost 2 months ago when we started our journey

1 month ago with Eden's first major flare up

Currently... Eden's skin looks a lot better already ... weight loss is shocking.

Eden's face 1 month ago with the major flare ... this BURNED!

currently.... managing a smile again

happy progress

The past 3 week's have been a crazy whirlwind ... I literally feel like parts of those weeks are "missing" in my mind. First Eden started with a terrible flare up together with tonsillitis...the flare up was excruciating ... red, puss, oozy, itchy AND burnt like hell ... then last week she started shedding skin like a reptile ... itching a lot ... skin was improving but cracked and leaking fluid ... she's been following a healthy strict diet and been relaxing in the winter sun every day ... she's been seeing a homeopath every week that's been a lifesaver for all of us. Through all of this Eden's been writing exams and the school have been kind enough to allow her to stay home until she's recovered. This week her skin started improving drastically ... but she was incredibly ill and feverish ... I at one point wondered if she had shingles as she developed a odd looking rash on her back leg ... luckily it's not shingles and we are all relieved but she does have .... tonsillitis together with a bladder infection so the Doc (homepath and GP ... who by the way is FULLY SUPPORTING us with the TSW journey both agreed to get Eden on a course of antibiotics).... she's doing a lot better now ... and ... Her exams are finally finished!! YAY!! Below are pictures of her legs 6 weeks ago, last week and how it is looking today. Little victories ... Little blessings ... so grateful to have them.... oh and one more thing ... we've started adding Epsom salt to her bath every day (which I've now learned is a mineral ... magnesium and not salt ... who knew :) )

Even though ....

Even though Eden is far from 100 % healed ... we are not going to allow this to drag us into a tunnel of despair and darkness ... we are going to celebrate every little victory...no matter how small. Even though she's itchy ... it is bearable. Even though she's still covered in red burning rashes on both her legs and arms...with cracked areas and smelly water running out of them ... Even though she is flaking like Crazy ... Even though she has a sore throat, reflux (which she had last time as a baby), tummy aches, nausea at times, bladder infection and have lost a lot of weight because of her decreased appetite... Here's our little victory: Her face is looking sooooo much better (I don't know if it's busy healing or if the flare up is just gone ... for now ... what matters is that her face is looking better."..and she is happier. Our second little victory is that for the first time in 2 weeks she could actually go for a long walk today ... without discomfort and pain. Our third little victory is that her first week of exams are basically done and dusted and it went well ... she studied really hard (I had to sit next to her the entire time to remind her to study otherwise she would scratch constantly and forget to study). 3 Victories in one week!! 3 Blessings in one week!! So grateful to see the light at the end of the tunnel even though it's still far away and at times even gone. Below are some pictures (skin flaking, how her legs are currently looking (it's shiny because we applied ointment) and how her face looks currently ... and then a nice sun tan through our lounge window :D (I really think the sun is helping A LOT!!)

Red burny rashes & gluten free food

This past week have been hell!! Eden's skin's on fire ... burning (not as itchy), red, flaky, cracks in certain places and leaks water...she also had tonsillitis but is doing a lot better now...our homeopath gave her medicine and tonsils cleared up without any antibiotics (little victory!!) I'm also very grateful to have found gluten free products (see pictures) in a local health shop: rice spaghetti, brown rice pasta/ gluten free/ egg free dairy free/ wheat free pancake mixture, rice milk (she hates the taste so I'll be drinking it ... at least she drinks coconut milk). Below are some of the pictures of how her skin was looking earlier this week ... the redness have lightened a bit(took the pictures today where she's slightly lighter) I am reminded by the words of one of my friends to Eden: "Don't get discouraged, celebrate every small improvement and know that you are not alone"

Marvin J. Rapaport, M.D. interview on Red Skin Syndrome: Corticosteroid ...