1 YEAR TSW

We have finally made it to 1 YEAR TSW!!!!

Eden is busy recovering from a nasty 2 week flare ... she's left with a lot of skin damage, sores etc but the flare is better ... she's still itchy... but the worst is behind us in terms of the past 2 weeks.

We have bathed her in organic apple cider vinegar and recently I've added dead sea salt. Put an anticeptic cream on the open sores and bepanthen baby bum cream on her face ... it's worked miracles for her dry skin the past week!

She's on strong probiotics and trace minerals.

I haven't given her any antibiotics yet as I really want to give her skin time to heal by itself ... but will see how it goes.

She'll return to school tomorrow and got so many supportive messages from the kids in her class and their parents saying how they will be there for her and that she must get well soon.

It makes this journey so much easier.

Below are pics I've taken last night ... still need time to heal but she looks a lot better than 2 weeks ago.

2nd week flare NEARLY 12 MONTHS IN

So frustrating!!

Eden is now in her 2nd week of flaring ... the redness have gone down and a lot of her flare has calmed down ... she's not so sore anymore ... she can lift her neck slightly again but but BUT her skin is dry and flaky and itchy and she's butchering herself ... her face is full of sores and infection and skin is peeling.

I am taking her to our GP tomorrow to get a course of antibiotics as the infections are bad...I prefer the homeopath but at the moment nothing seems to help...not even our homeopathic treatment.

Guess it's just one of those things that need to be waited out.

Here's some pics taken this morning of her face: It's so frustrating when you have come so far and have had such a lovely relative calm and recovery period and then out of nowhere a flare from hell hits.

Almost 1 Year TSW

I've heard of many people that have flared around the 1 year mark.
We have flared at the almost 11 months and now again at the almost 12th month mark ... every day her flare seems to be getting worse ... probably because she has infection now ... she is so so sore!!

I have only taken pics of her face (not her body) ... she cleared beautifully and at one stage I was almost certain we were on the path to full recovery but now I have to give into another dose of antibiotics and hope for the best.

I have seen Eden's skin improve dramatically over the past few months so I know it is possible ... healing is possible ... it's better than being in that awful stagnant phase ... just have to keep the faith.

These photo's were taken Yesterday ... I am too scared to see what she looks like today (she's still sleeping) :(

Extremely tight and dry skin

Perhaps it's the change of seasons? We are heading into winter now and every winter Eden flares really bad ... it started on Friday and her flare in terms of intense redness etc haven't actually gotten worse but the dryness is so unbearably uncomfortable, she cannot even lift her head as her neck is too tight.

I'm contacting a Dermatologist that does UV light therapy ... perhaps it's a good idea to start her on light therapy for the winter.

She's staying home for the next few days, she's very teary and miserable today ... just staying in her bed.

I am curious to see how long it takes to settle down again.

I don't have the best quality camera so the detail of Eden's skin could not be captured ... hopefully you get some idea ... even her eye lids are flaking at the moment.

 Not lifting her head too much as it hurts around her neck (skin too dry and tight)

Legs are extremely dry and flared but we've seen a lot worse and won't ignore the fact that there's definitely progress.

Doing better again

Eden had a tonsillectomy 2 weeks ago and was in bed for the entire 2 week holiday ... so much rest she caught up on and de-stressed after exams and school (although I must add she loves being back at school again).

She looked terrible when her tonsils were removed (everyone at the hospital commented and gave advice wrt her skin and was shocked to realize this was the effect of topical cortisone addiction).

Anyway, one of the nurses told me that when she had her tonsils removed, her eczema vanished (perhaps related, who knows ... but what I do know is she went through a terrible flare and then as soon as her tonsils were removed and we started her on the course of antibiotics the flare lifted and her skin started to clear ... so much so that she's back at school again for the second term).

Much to be grateful for ... and even if another flare hits (which is possible) ... I know that it will disappear again and her skin actually heals now after every flare ... I am so grateful for these breaks in between and little (and big victories).

Eden's skin prior to the tonsillectomy & anti-biotic treatment ... NASTY 10 1/2 month flare 

Eden currently after the tonsillectomy & meds ... doing so much better. Feeling happier and more relaxed ... so grateful it's gone for now.

Almost 11 months!!

Apologies for not blogging as faithfully as I would have liked to ... but, life has just been crazy the past 3 months: morning sickness and kids back at school ... toddler running around and all this while dealing with occasional mini flares.

We have had such a wonderful past 2 1/2 months (despite the mini flares) ... Eden's skin was so clear and beautiful at one point I thought she was starting to heal (for good), but in the back of my mind I remembered what everyone on the forum kept telling us: "watch out for that nasty 11 month flare"

And lo and behold ... Eden is 2 weeks away from 11 month TSW and currently going through a flare from hell!

She's back to oozing and having that strange plasma smell on her
She's back to skin flaking (this haven't stopped at all for the past nearly 11 months but we have had days where she had so little it was almost nothing)
She's back to itchiness, red patches, parts that is infected and and and.

That is the thing with tsw: you never know when the next flare will hit or how severe... so you just have to brace yourself and try and stay as positive as you possibly can.

I must admit ... I had a complete emotional break down Yesterday ... it is awful to see someone suffer like this ... and to have your own child experience this is heart breaking!

I still feel a lump in my throat today ... and moments where the tears well up in my eyes but, then I remember how beautiful and healthy she looked not so long ago ... and that it will happen again.

She is currently lying in the sun (with her face) we haven't found a dermatologist that can do light therapy on her yet but at least we have the blazing African sun in all it's glory to do the job ... maybe we don't even need light therapy?

I am grateful that she's been healthy enough to go to school for the past 3 months and it's almost perfect timing as they are writing exams (so no real need to be at school) AND school's are closing for 2 weeks on Friday.

I took Eden to a ENT a few weeks ago ... we discovered that she has very active tonsils and they need to be removed ASAP ... so this will happen this coming Thursday. She will also be writing 3 exams this week (thankfully it's not too much studying this week as the past 2 weeks have been intense studying and probably added to her flare).

We are all looking forward to the school holidays ... a much needed break for kids results in a much needed break for moms.

Eden's face is extremely flared and irritated

This is how beautiful she recovered ... this was taken on Valentines Day ... she looked so lovely and healthy .... and almost completely normal again.

9 MONTHS TS FREE and 1 month back at school

2 weeks into the first school term and Eden started to flare (but it was nothing in comparison to what it use to be and eventually I kept her home for 3 days and then she could return after the weekend). She's in good spirit and even though her skin is once again trying to recover from yet another staph infection ... she is doing very well.

I have come to the conclusion that Eden's skin will heal so much faster if it wasn't for these recurring staph infections ... the question is ... How does one treat them?

Thankfully we have an amazing homeopath that treats the inside of the body and specifically staph infections but the outside is still pretty much a mess.

When we went to the coast in December, Eden's skin healed from infections within 2 days of being there (due to the salt sea water) ... unfortunately we live 8 hours away from the nearest beach so that is out of the question ... but I have started bathing her in dead sea salt ... sometimes epsom salt ...and I read again today on the forum that Apple cider vinegar is good for infections (to bath in) and coconut oil and then Isaiah's mom mentioned she used lemongrass essential oil and mixed it with shea butter and cleared her baby's skin in 4 days.

A family memeber also suggested I contact a lady by the name of Diana www.dianas.co.za that sells a product called Bulbinella ... so I am going to give it a try and see what happens.

Will keep posting regarding Eden's progress.

PICTURES BELOW WERE TAKEN 2 WEEKS AGO (EDEN HAVE HEALED A LOT SINCE THEN EXCEPT FOR THE STAPH INFECTION)

Slight flare in her neck and face but  nothing compared to what it was.

Her arms were really sore and red with water running out of it.

the source of my frustration: Staph infections ... Eden has these little open sores, bumps and infections all over her legs (it looks like she's recovering from chicken pox) and I simply can't get it better unless I take her to the sea again (which is not a possibility) ... I will in the meanwhile keep on looking for solutions to this problem.

Also, some other (Random) news (non tsw related .... my husband and I are expecting another baby! We are 12 weeks along and I have CONSTANT NAUSEA urgh!! But, we are thrilled.)