Well, Emma's poor skin has been so bad this year. In January we spent a couple of days in starship with massive skin infections. It turned out she had contracted MRSA, the penicillin resistant superbug.
MRSA is a staph bacteria that lives on the skin and runs quickly over to any patches of broken skin and causes infections. Loads of people have it and it causes no problems, most people's good bacteria will fight it if it tries to take hold. Unfortunately Emma's skin is so red, dry and broken that the bug is continually infecting her. Her immune system is low and her good bacteria almost eaten away by the bad. She has had dose after dose of antibiotics, steriods, antihistamine, not to mention the creams we have been putting all over her for years.
Over the last week or so we have noticed that her skin is getting worse than ever. Her face, normally clearish is red and splotchy, her hands are a weepy mess. We got an urgent referral from North Shore Paediatrics to Pediatric Dermatolgy at Starship and today we got seen by Dr Purvis. She took one look at Emma and said things were obviously not working any more and we had to do something serious. So we are going to try Emma on Methotrexate which is an immunosuppresant drug. Dr Purvis talked about doing this a couple of years ago, but her skin came right after a focused couple of weeks on skin care. This time it is the only option available. Today we had the first blood test to see if she can tolerate it, then if that is all clear we will give her the first dose tomorrow and follow that up a week later with another blood test next week to see if it is causing problems or not. If we get the go ahead she will be taking it once a week for the forseeable future (maybe 6 months, maybe 2 years.....) but it should give her skin a break and a chance to heal and hopefully break the eczema, itch, scratch, infect cycle.
As a parent, it is a horrible thing to have to subject your precious baby to taking serious drugs but we cant leave things as they are, her quality of life has deteriorated this year. I want my daughter to be as happy and healthy as she can be and this drug could be the lifeline we have been looking for.
Oh Barbara that's so sad and must be so awful for you all. Poor sweet girl going through all this already at her age. I suppose that at least there are still options for you all to improve this for her, albeit being full on drugs. Am hoping for you that this will work well for her.
ReplyDeleteHello Barb.
ReplyDeleteJust browsed through your blog. You are doing such a good job with your child.
I have an eczema child too and she eats very well, but the skin still plays up sometimes. I have a cream I put on her which helps with the healing if she has scratched, so I've been able to avoid medication for a long time now~ 2yrs, not even a steroid. For more info: zanechooselife@gmail.com or txt 0210738430
Poor darling, I hope that the medicine works for her. I imagine that it will be life changing. I made your scones the other day and they were yum!
ReplyDeletehi my son had really bleeding eczema and chronic asthmatic as well as he nut allergy. Well after changing his diet he very rarely gets asthma and eczema is slight and only in winter. Our diet change has shocked allergist that he is not needing prventive meds for his asthma at all and thats been years now.
ReplyDeleteMaybe worth writing a food diary and have a step back to see it in a big picture. Hope all is well :)