Around this time we also found http://itsan.org The International Topical Steroid Awareness Network. ITSAN, was originally formed to raise awareness about a condition called Topical Steroid Addiction and Withdrawal, now known as Red Skin Syndrome. Since its founding in 2012, ITSAN has grown into a wide online community of RSS sufferers around the world contributing ideas, funds and inspiration. If your story sounds like mine, check out this website. We now knew we were never going to use steroids again.
Lets go back to where it all began...
When Lakyn was a few month old he developed eczema on his cheeks, a little on the back of his knees and the folds of his arms. We went off to the Doctors and they gave us some Hydrocortisone 1%. (Hydrocortisone cream is a topical corticosteroid. It works by reducing skin inflammation, redness, swelling, itching, and irritation).
I asked if it was safe and was told yes. How little did I know...
We used the steriod cream and Lakyn's eczema cleared up but a few days later it returned. We were told to use it again and again AND AGAIN.
Lakyn's eczema would always go away after a few days of using the steroid cream but as soon as we stopped, it would return. Lakyn's eczema started getting worse, it started spreading to other parts of his body, staring off with small patches and soon it was all over his little body.
We started to become concerned about the use of steroids and the Doctors kept telling us that the steroids were completely safe and that we should most definitely keep using them.
At about 9 mths old we thought Lakyn reacted to eggs, I gave him the tiniest amount and he's eczema flared and he's breathing was a little husky. I decided to wait until he was one to try eggs again.
At one he reacted again, this time swelling and hives around his mouth and neck and itching uncontrollably. Off we went to the hospital and it was so horrible to watch him struggling, his little body covered in hives, vomiting and itching, he was so uncomfortable. We were given a referral and made our appointment with an allergist, although we were put on a 9 month waiting list.
A few month's later on my birthday Lakyn got to my cake, this time the reaction was so much worse, his mouth swelling and vomiting, another trip to emergency.
So so scary!!!
Finally our appointment rolled around and yes Lakyn was allergic to eggs. He was tested for all nuts also and thank God he only reacted to the egg. The allergist prescribed a stronger steroid cream for Lakyn's eczema and I was told to apply more of it and more often to get his skin under control. We were also referred to the eczema clinic at the royal children's hospital.
Lakyn's Allergy Testing Appointment
The eczema was still getting worse and worse, it was around his eyes which it had never been before, he's eyes were swollen all the time, he started wheezing at night. The doctor's said asthma, I didn't want to believe him so went to another doctor for another opinion. They wanted to put him on a preventer even though he wasn't old enough and I just couldn't, the side effects were crazy.
I wanted more answers, thinking maybe he had seasonal allergies or maybe something the allergist hadn't tested for. I ended up taking him to the royal children's hoping they would refer us to a specialist. Nope, the doctor said steroids, MORE steroids.
I was so angry and upset driving home crying, I just knew there had to be something else going on in his little body.
We saw a naturopath and for once someone made sense. We were told to stop steroids as they only suppressed what was going on inside Lakyn's body, which in turn would harm other organs resulting in things like asthma. We were also told to stop dairy for a few weeks, then grains, then test to see a reaction when introducing them back into Lakyn's diet.
We saw little change with dairy, but within two days of taking wheat out of his diet, Lakyn's asthma stopped, his runny nose cleared. This was amazing, but his eczema was still there and we thought maybe the allergist could test for more. The allergist would not test for anything else, he prescribed us more steroids and told us we were not using enough after we told him we did not want to use them anymore. He was happy to charge us an arm and a leg and laughed when we mentioned naturopath and refused to believe that wheat could stop asthma.
We had been researching so much on the internet and found maybe a Dietician could help so booked in to see one also, we wanted to cover all bases before deciding what to do. The dietician gave as a diet plan for Lakyn and he was put on a very strict low chemical food diet.
So all up we had him off so many foods, plus added gut healing and probiotics.
We didn't see much of a change when we first started as we had also stopped steroids around the same time. We stuck with it and when his skin started to clear we introduced foods back in and saw a reaction straight away.
I am so grateful we have had the courage to stick it out, it's the hardest thing I've ever done. The way we look at food, medicine, personal care and household products will never be the same again.
I hope to share with you our journey and any other thoughts, tips and more to help as many people struggling with eczema as we can.