5 QUESTIONS WITH: Isaiah Quinn (and Stephanie)

I have a rather special 5 QUESTIONS WITH for you today. A warning in advance, it will break your heart completely but also make you rather angry about the senselessness of our condition. Topical Steroid Withdrawal is a hard enough battle when you are an adult - I started my withdrawal when I was a twenty-five year old woman and it was mentally and physically the hardest experience of my entire life, so whenever I hear about a child or baby having to go through it, I feel a little bit ill.

I will say now that hands down without my mum, I would never have been able to get through TSW. Period. She not only gave me her unwavering support, something I needed more than anything, but also looked after and cared for me when I was unable to do it myself. Because of that, my respect and love for all carers having to watch their loved ones go through something like this knows no bounds.

With all that being said, it is my absolute pleasure to welcome Isaiah Quinn and his wonderful (superhero) mother Stephanie to my blog. He began his withdrawal as a six month old baby on 22nd May 2013 and his story is truly extraordinary. All photos featured in this post have been taken from his blog http://isaiahquinn.blogspot.co.uk (which I highly recommend reading) with kind permission from Stephanie.

I shall hand it over to both of them now (and prepare to fall in love with this family):

1) Tell us a little bit about yourself and your skin journey.
Hi, everyone! My name is Stephanie but most know me as Isaiah’s Mom. Thanks for featuring us, Cara! Isaiah began TSW after only 10 days uses of OTC Hydrocortisone between 3-5 months old – we just did not realize it at the time. He was then hospitalized and received 4 rounds of IV Prednisone in his scalp - because he was so dehydrated that they could not find veins anywhere else - and multiple topical Rx steroids and Protopic during that hospital stay. That is when our hellish journey truly began, and he spiraled into renal failure and suffering beyond our wildest imagination. We ended up seeing 35+ doctors and specialists in 3 extended hospitalizations and no one had answers – all but 2 of them wanting to push steroids of all types. In the beginning, it was the most hopeless feeling seeing our sweet baby in such a torturous situation and having no help in the medical field.

2) How did you find out about TSW?

The week we came home from the first hospitalization, all hell truly broke loose in his little body. The ooze was so severe, that it looked like someone sprayed him with a water hose. It was wet, sticky and EVERYWHERE. It dripped off of his ears and ran down into his eyes. Our family could not have skin to skin contact with him in any form. He screamed for days on end and lived in our kitchen sink, as that is the ONLY place he found a little peace, rest and comfort. My husband and I were desperate for answers and were crying out to the Lord in prayer for help. Two days after we were home from the first hospital stay where the last steroids were used, my husband typed in a Google search, “steroid side effects” and then I typed something along the lines of “topical steroid side effects” and we found Joey and Jake – which led us to the ITSAN site and the old video from Dr Rapaport where he stated something along the lines of, “Stop the steroids cold turkey, brace yourself for hell on earth, and with time YOU WILL HEAL!” The heavens split and the angels sang… we KNEW we found what we were dealing with, and from that moment on, we tossed ALL steroids and pushed down deep the belief that Isaiah was going to heal.

We took the info to our precious pediatrician, and he agreed that this seemed to be what we were dealing with. Such a blessing, as he held our hand through two more hospital stays and helped us fight off the derms and allergists. He also put that steroids of all types were an allergy in Isaiah’s medical file. That helped, even though most every other doctor we saw raised eyebrows and tried to convince us otherwise. It was such an uphill battle, going against the grain, but the perseverance paid off! And in the end, Isaiah healed and now has the most beautiful skin.

3) Did you find that anything aided your healing?
He LIVED in our kitchen sink for months, with dish cloths draped around his face/neck/body, with really warm – almost hot – water running over him. I believe the hot water stopped the nerve pain and itch, at least momentarily. He even slept in the bath. We added Dead Sea Salt or Magnesium Flakes, and in the latter stages Pink Himalayan and sometimes Bragg’s ACV when he was in bumpy/itchy flares.

Modern prescription meds were failing Isaiah in the early stages - rampant infections, and allergies to most medications. In a time of fasting and prayer, God revealed to me how to begin making some balms to help him – the main two were our Lemongrass and Zinc. We used those thickly under wraps for over a year during the withdrawal, and Isaiah was the most comfy gauze wrapped in them. Before he could even speak, he would point to the balms on our kitchen island – as that was his triage center for months! – and then point to his face. They were soothing and helped the ooze and lesions. We make those and other balms in an old Etsy shop we re-opened in 2014 due to demand in the TSW community. Many have now found comfort in the same balms that first comforted him. Truly amazing and humbling.

We love Klaire Labs Therbiotic probiotic 100 billion powder for him – dosed daily, and also Sovereign Silver hydrosol orally and topically when we battled infections and sicknesses of all types. We used Similisan Irritated Eye homeopathic eye drops multiple times per day for him too in the thick of TSW.
In the early stages, we also used Walgreen’s dye free version of Benadryl – WalDryl – multiple times per day orally. That helped the itch mildly and helped him rest.

4) Sum up TSW in five words.
PREVENTABLE – xo to Briana
Torturous
Unnecessary
Sinking
Isolating

5) What positives, if any, have you found from going through TSW?
I have met the most beautiful, incredible, courageous, selfless, generous, remarkable and amazing people. (!!!) Those that have cried with us, embraced us, helped us, pushed us forward, pulled us up, kept us on course, encouraged us, loved us and helped us when there was no one outside of the community that truly understood. I am forever indebted to the TSW family of Mamas and friends that have surrounded us in our time of suffering, PTSD and our ongoing journey of mental healing. There are just no words that could ever adequately describe my love for each and every one that was part of our journey – and still are! I have said so many times that I can not wait for the day to meet those face to face that have been so supportive to us. Cue the tissues!!

I have been asked if I would still have gone through with it, knowing what I know now, having lived through so much suffering.. the answer is YES. Almost every doctor that we saw said Isaiah was “atopic” and would have to be on immunos and steroids his entire life to even have some form of normalcy. They were ALL WRONG. I know we made the best possible choice given the circumstances we were dealt and now we are reaping the rewards from pushing forward, far away from steroids and those opinions! Isaiah is a normal toddler with beautiful skin – med free! Life is good! And we are blessed.. blessed to be a blessing!

I am thankful to God for making beauty out of ashes and being our Rock when all else was sinking sand. Christ is our life and the Hope for all we believe. xo

On one of Isaiah’s blog posts I shared this quote that I love:
 “The best view comes after the hardest climb…”

Some words that I can share now about Isaiah and our journey:
HEALED!
Happy
Normal
JOY
Peace
SLEEP (!!)
Friendships
LOVE
HOPE
Courageous
TSW TRIBE
Brave
NEVER GIVE UP!

Isaiah’s full blog post with pics can be found here.
Isaiah’s pic only blog post can be found here.
Their fantastic TSW balms and Etsy shop can be found here. Stephanie has kindly shared this coupon for her store too. TSW coupon: REDSKINFRIEND – 15% off, no min order.

Thank you SO much for sharing your story with me <3

I feel immensely lucky to have gotten to know the most extraordinary group of people within this community who have inspired me so much and I think this post has highlighted the urgency of our cause. Something has got to be done and very, very quickly. We've got to keep spreading awareness about the dangers of these drugs so children and babies (and their parents) NEVER have to go through this ever again.

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)

Love to you all out there <3
Cara xxxx