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 ...

SUPPORT

Eden's exams are starting on Monday ... she wrote 2 tests today (comprehension test and creative writing) ... the school have been incredibly accommodating, understanding & supportive. They informed me that I can collect Eden's work every week from the office for as long as I need to until Eden is better. So I'm basically home schooling her (using their school system). We are both so grateful because this way Eden feels less stressed out and don't have to be exposed to bullies and insensitivity of those around her. She will be going into the school office every day ... write her exam and come home strait after. We took Eden to our doctor that's been working with her for the past 3 years ... the doctor is very supportive in our decision to stop cortisone treatment and allowing her body to heal itself...she knows Eden and her medical history in detail...she even wants to read more about TSW so I've emailed her as well as our homeopath the Itsan website... I am so grateful that they are not simply disregarding what I am saying but that they are completely open to this idea. She suggested I use Cod liver oil, Omege 3, 6, 9 as well as Evening Primrose oil. Eden's tonsils are looking a lot better ... our homeopath is amazing! I took the kids for a walk to the park and managed to take a picture of Eden's legs at the back: extremely red ... not as itchy ... more burning ... her face is little swollen (especially around her mouth and eyes) ... she has red patches and A LOT of flaking ... she hates that part the most ... I think she can handle eczema being on her body but not on her face ... She wears a hat and sunglasses when she's out in the sun because her eyes are slightly sensitive to the sun at the moment and the wind us irritating her ... having said that ... they loved their walk to the park.

Cortisone withdrawal and tonsillitis

Turns out Eden's got tonsillitis (I'm guessing that all the poison in her body is working it's way out and hence the tonsillitis). The doctor showed me her throat this morning ... apologies for the graphic description: she has pimples (or what looks like pimples) in the back of her throat that's oozing/dripping puss. He added some stuff to her current natural medication ... she's already feeling better and looking happier. She was lying in the sun with her baby brother today (it's winter here by us so we can't really lie in the sun outside, so they just made a nice comfortable blanket bed on the floor in our living room where the sun shines brightest ... she loved it and felt all lazy and relaxed after about 1/2hour of relaxing... then we brushed the dead skin off and moisturised her body. We joined the Itsan forum today ... I am so happy ... finally feel like we have support ... people that really really understands. Been a good day despite our trials.

1 Month Cortisone Free

Yesterday was a really emotional day for us ... hence the depressing blog post. But I'm not making excuses for it ... this is life!! This is our trial ... and trials are blooming difficult ... it's a constant roller coaster ride and some days (as the mom of a child with atopic eczema) I feel like I am literally just holding my breath ... putting my head down and going. After a good nights rest (my wonderful husband looks after the baby at night so I can rest and be there for Eden when she needs me)life looks a little bit more hopeful again today. Eden's still in bed ... resting. I've kept her home from school, she will rest a lot, study (seeing her exams start on Monday) and lie in the sun with her baby brother (he loves sun tanning through the window every day ... bare bum in the sun). We are taking her for another check up at the homeopath. I realized that Eden is 1 MONTH CORTISONE FREE!! She had a flare up exactly a month ago ... and now she has another. Then I came across the following link and website: www.itsan.org which just reminded me that what Eden is experiencing is a normal part of cortisone withdrawal. http://itsan.org/eczema_questions_answered.html they answered many of my questions and brought a lot of comfort to me ... I am going to show Eden some of their patient studies / case studies the before and after photo's. The reason why I decided to stop Cortisone us was because: her eczema kept spreading, uncontrollably uncontrollable, spreading eczema. weve used cortisone for too long (years) It stopped working and she needed stronger stuff every time. Every time I stopped using it (for example, she will go to her dad every second weekend and he will take care of her skin with the use of cortisone cream) and then when she gets home I wouldn't use it on her and within days of not using it her skin would go Crazy until she goes back to her dad after 2 weeks where he applies cortisone and after 2 days when she arrives home she looks all good but then then I stop using cortisone and the skin breaks out into red itchy burny rashes all over....and the cycle continues. I realized that this couldn't carry on. We cannot carry on using cortisone ... we have to help her body strengthen and heal itself in a natural way. Even though it's a difficult road ... I am grateful that the Lord have helped me see this ... I really believe we are on the right road...even though the road ahead is still a long one. Eden managed to give me a little smile in the picture below: you can see her face red and blotchy the rash is under her neck,tummy, arms, legs ... her eyes are swollen and slightly red inside ... I give her antihistamines for the itchiness ... it makes her drowsy too so she gets to sleep at night. She's a beautiful little girl that deserves a normal happy life ... and even though the road ahead is still a long exhausting and bumpy one ... I believe in the blessing she was given by her step dad ... that she will heal ... that this will not continue forever ... even if it takes a miracle ... she will heal. I am holding on to that promise.