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Letter from a sufferer – Cyclosporin

 

I thought I would share with the EANZ my challenging experience of dealing with my daughter’s eczema. (Testimony from a Australian EAA member)

 

Dana was first diagnosed with eczema at 6 months old. My doctor assured me it would be nothing to worry about, just keep it well moisturised and it should be completely gone within weeks. Well I guess my daughter didn’t read my doctor’s handbook (why would she, she never waited for the “suggested” milestones, sitting unaided at 12 weeks, crawling at 6 months and then walking unaided 3 weeks later, and hasn’t stopped since). Dana’s eczema continued to get worse, first the usual knees and elbows, then legs, arms and torso. My doctor was very supportive but about the only “comfort” he could give me was at least her face wasn’t affected and “kids will grow out of it” hopefully by the time she is 3 – 4 years. Even the dermatologist we saw gave the same advice, only for me to find out later that the dermatologists in my local town don’t like treating children. So the drama begins. While Dana’s eczema became worse, so did her behaviour. As a single parent I used to wonder when DOC’s were going to knock on my door and take Dana away from me. She used to yell at the neighbours that I kept her locked in her room and never fed her – not a nice way to meet the new neighbours, but at least they were understanding. At 3½ years the eczema and behaviour became so bad I was ready to break. My doctor suggested I take the trip to Sydney and see a paediatric dermatologist. Sydney may have been a big pain in the butt to go to, but if that was where the answers may lie, it would be worth it. After waiting 6 months to get in I was totally disappointed – the specialist gave me the impression I must be an over reactive, paranoid parent. The first visit was over and done with in less than 10 minutes after being given a new regime of creams and oils. The chemist bill was monstrous, but at least I have an understanding pharmacist. Six weeks pass, no improvement and then BANG it must have been the worst Dana’s eczema had ever been. Quick dash to the hospital (she was bleeding and weeping from everywhere, not one inch of “good” skin left) only to wait 6 hours and be sent home with a sedative dose of antihistamines. Next day an emergency appointment was made to see the specialist. Finally I was being taken seriously, my daughter needed to be admitted to hospital for intensive treatment. Wet dressings must be the cruellest thing to let your children go through. I couldn’t even stay with her during the dressings because it was too painful for me. This is when my daughter’s behaviour became aggressive – hitting, punching even biting if you got too close. When the dressings were finished, she calmed down and would return to my beautiful little girl everyone loved. This went on 3 times a day for a week before her skin began to look “normal”. For the next 12 months our routine included 1 week out of 4 spent in hospital. We were both losing our minds and now my family had deserted us as well because Dana’s behaviour had become so bad. During this time we did all the usual allergy tests. The elimination diet was the worse. I agreed to it after being told it would only be for 1 month at the most – we ended up staying on it for 4½ months because of eczema flare ups.

 

Our dermatologist referred us on to a clinical trial only to be knocked back because Dana’s eczema was too flared up at the time. The next big step – Immunology. After being told about this wonderful drug, that doctors were not quite sure why it worked, I figured anything was worth a try. Cyclosporin has been my best friend for the last 13 months. Dana was a little slow to respond to it but the results speak for themselves. While Dana still has her little bouts of flare ups, these are isolated to her knees and ankles. Cyclosporin makes the body more susceptible to viral infections but they are much easier to control than the eczema. Dana still needs daily antihistamines and the cyclosporin will continue for at least another 12 months or maybe longer. For me, it doesn’t matter how long she needs the cyclosporin to lead a normal life, I will never swap it for wet dressings and constant skin infections again. The biggest downside to the cyclosporin I can think of is, because Dana no longer needs antibiotics to keep the skin infections at bay, we have now found out Dana has had chronic tonsillitis and will need to have her tonsils removed, so I guess the antibiotics were doing something after all. When I go shopping with Dana I wonder what other people must be thinking when they see me holding my daughter’s hand – me, I can’t let go of that hand because it feels just so nice and soft – I want to hold it forever.

 

I would love to let all parents of children with eczema know that there actually is light at the end of that very very long tunnel. While some may have longer tunnels than others the end is always worth persevering for.

 

Thank you, Lisa

 

Note:

Cyclosporin unfortunately is not an option for everyone, if I didn’t have a Health Care Card it would also be a very costly treatment.