For those of you who don’t know, Tahi (my son’s middle name) and Rose (my daughter’s second name) started as a creative outlet inspired by my kids, it has developed over the years to a much more holistic creative outlet as we’ve learnt and grown along the way. The last 3 years have been our biggest learning curve yet, and it is also how Tahi and Rose Skinfood was born.
This time last year, I had to close the Tahi and Rose online shop as it was impossible to do anything other than care for Little Rose. I remember posting her updates on my personal FB page for our family and friends to keep informed about how she (and us) were doing, but it became harder and harder to share, as most of the photos, videos or updates were too graphic and heartbreaking for us to even look at, let alone share.
These updates have become our daily reminders of her journey as FB likes to share “on this day last year, and the year before…etc”
These memories have also reminded me how far we’ve come, and how important it is to keep sharing our journey, even when I’d rather not have to think about it.
I’m not exaggerating when I say the last 2 years, especially 2016, has been nothing short of hell. Little Rose (her nickname I use when talking publicly about her) struggled since she was born with being able to detox her own body, she was unable to handle dairy and gluten, I couldn’t use bleach when cleaning as it would cause her severe asthma. She’d have eczema skin rashes from eating anything with preservatives or colours, and would often vomit if she’d overloaded her “bucket” with too much of anything really. This is how Tahi and Rose all started, finding natural solutions for our kids and sharing our wins (and fails).
Long story short (well as short as I can make it), we needed to test her for Celiac disease so we put her back on gluten for 6 weeks (as we had already removed it for her diet and can not test for Celiac disease without it being in the system.)
This caused her eczema to flare constantly. She also had terrible sinus (from dairy) but we were advised to keep her on dairy and use a nose spray instead (steroid nose spray). We also were living in a very moldy old house and were doing our best to move out as we knew it was making her more and more unwell.
Previous to this I refused to use topical steroids on her. The first few times we ever tried it she would cry because it hurt her skin and I just knew it wasn’t going to help, so I used the usual natural options of oat baths and coconut oil etc etc
After her Celiac test her health continued to decline, we were applying topical steroids as prescribed, but it would only clear for short periods of time.
Her asthma was increasing (at times needing her puffer twice a night) as well as her allergic responses increasing to all different types of things (face flares, vomiting, swollen face, spreading rashes).
We went from doctor to doctor, we tried everything we could, elimination diets, creams, supplements, extreme trigger elimination, diet alterations, medications, tests…
She was unable to sleep, her skin was so thin it would rip and bleed at the slightest scratch, we bought special bedding and gloves, sleep shirts and clothing. We moved house, we replaced our fabric lounge, we removed as many toxins as possible.
This continued from ages 3 – 4 and a half years old. She became walking anaphylaxis, her IgE blood levels (your body’s allergic response) was suppose to be less than 40 U/ per milliliter of blood, hers was 14,000 per millilitre! We removed the last remaining possible trigger, the only constant during her downward health decline, the steroids (this was under the guide of our GP).
What happened next was unimaginable. No amount of researching and reading could have prepared us for the crippling, heart-wrenching, life stalling condition that is steroid withdrawals.
We had NEVER heard about RSS (red skin syndrome), or TSW (topical steroid withdrawals) or TSA (topical Steroid Addiction) or SIAD (Steroid Induced Allergic Disease). We stumbled across it while endlessly researching what was happening to our girl.
We found a story of a man named Jake who had been through TSW, and his pictures, his skin, his story was the same as Little Rose’s. We thought – Oh My Gosh, how could this happen to her at the hands of all these specialists? How come we’ve never heard of this? Why has no one mentioned this?
We were also naively excited that we had found out what was wrong with her and that meant we could get her better…. well 16 months later and we are still getting her better.
Not to mention her dermatologist specialist that ceased all communication with us when we asked for steroid free treatment (that did not include immunosuppressants either).
Nor did we expect the refusal to accept RSS as a condition from the medical community. The complete denial of TSW from doctors, specialists, and the immunologist who have told us she has severe eczema and needs steroids for treatment, that (quote from her original immunologist) “nothing else is going on internally, she just needs stronger steroids and antibiotics”. Or quote from her dermatologist “there is no viable treatment for her that does not include steroids”.
Well, its been a long hard journey, and trust me the above novel barely scraped the surface of what we have been through, what we have learned and what I wish I had of known. But the only thing I can do now, is share our story.
Share our healing strategies. Share what worked and what didn’t work.
Because you only know what you know at each point in your life, and we did not know any better, I truly believe a lot of the medical professionals we have met along the way didn’t know any better, but one by one I will go back and tell them the rest of our story.
They too will at least have TSW and the very real systemic side effects of steroids in the back of their minds (and all the other factors including antibiotics and gut health, healing with food and nourishment, natural treatments and trigger elimination, finding the causes and healing the immune system …)
We are still healing, her skin may be back but we are still working on her immune system and keeping her infection free, her diet is still limited and we have to be careful with everything. We are still overcoming the loss of the last two years, it is a grieving process.
I am often overwhelmed with happiness that our girl is getting so much better, but then I am overwhelmed with grief and anger that this happened in the first place.
We are helping her over come her anxieties and fears from being different, helping her move on from what she has been through and giving her the chance to be a kid again. We are still working on the stress levels of Tahi (her brother), he has become so caring and responsible watching his sister go through all of this, but that also brings with it a burden of feeling like he has to take care of her at all times, and that is not something that is easily switched off. He too has missed out on so much.
I will endevour to share more of our healing strategies as I am able. The first step is sharing RSS/TSW. Because it is preventable, and needs to be prevented.