Back in April, my oldest daughter Abby had a Dermatologist appointment, where we discovered that her Morphea had spread. Morphea is a type of Scleroderma, and is very rare. It’s a skin disease that so far, is only affecting her skin. Worst case scenario, it can affect her tissues and muscles and can cause deformity. So it’s quite serious.
At that appointment, the Dermatologist had told us that he was referring us to a Rheumatologist, who was “more familiar with treating children with high-dose Steroid medication”.
A little about me: I hate most modern medicines. I avoid Antibiotics at all costs. I had all three babies naturally. I rarely even take a Tylenol, and I think people who take cold medicine are crazy.
And the one medicine I dread and avoid at all costs is Steroid medications. Abby needed a steroid to help her breathe once when she had croup and I lost my mind. But yes, breathing was pretty important.
Oh, and I should mention here that I’m married to a Paramedic. Mr. Medical. Mr. Medicine. Mr. “we should put some polysporin on that paper cut so it doesn’t get infected”.
So, the day we were told that a Rheumatologist was our next step, I called a Naturopath.
For the next 7 weeks, we put Abby on a crazy diet. No sugar, no dairy and no grains. No GRAINS! Not even gluten-free grains! She couldn’t even have grain-fed meat. It had to be grass fed. We bought meat that we had to pick up out of the back of a pick up truck in the mall parking lot. Almost contraband. I paid $35 for a chicken. A chicken that would normally cost me about $12 at a grocery store. I became very familiar with the Farmer’s Markets. I familiarized myself with the Paleo websites. I spent tons more money on Almond flour and Coconut Oil, trying different recipes that she would enjoy. There were also drops, vitamins and supplements.
It was a lot of work.
But it was also a HUGE education. Which I’m grateful for.
Ultimately, we ended up letting her cheat for more days than we had her eating properly. And she wasn’t getting enough energy. She was tired and weak. Although, I do have to say that this diet did WONDERS for her attitude. She was like a different kid. Maybe it was because she was too weak to fight & argue. But we saw no improvements to her Morphea patches. It hadn’t spread, but would it have otherwise?
I also need to say that anyone with Autistic kids should really check the GAPS Diet out. I did a TON of research, and I think they are on to something with Autism & diet. #Imnotjennymccarthy
This week we met with the Rheumatologist, For 3 hours. It was our first ever trip to the Alberta Children’s Hospital, and everything I’ve heard is true. Ahhhh-mazing! For the first time, EVER, I felt like they really cared about my questions. The doctor didn’t have her hand on the doorknob while I squeezed another question in. There was a TEAM of people who were there to answer questions. The gave me a BINDER of information. A direct phone number to call if I thought of a question later.
So that was the first thing.
Secondly, the Rheumatologist told me she has ‘lots’ of Morphea patients. I was so surprised by this, as I thought the disease was way more rare than it is. But so many patients get funneled to this hospital, so she knows her stuff. She also trained at the sick kids hospital in Toronto, where they had a Morphea Clinical group! Um…sold. She has seen the drugs work. She has seen great success in only 3 months.
So, I sold out. I’m going against everything that I preach. But, I tried the natural way. So I feel good about that. I’m a huge believer in ‘Everything happens for a reason’, and I believe that the 3 month wait to see the Rheumatologist happened in order to give me time to try an alternative method first, so I would feel batter making this decision.
Now, the Naturopath’s ‘concoctions’ (witch’s brews) are being replaced by Methotrexate. Yep, that’s the Chemo drug.
She takes 5 little pills every Friday, that might make her sick. Or they might not (positive thinking). In addition to that scariness, she has to get her Steroid medication intravenously. At the hospital. So for three consecutive days every month, she will have an IV in her arm for 4 hours. We’re hoping to only have to do it for 3 months.
Hopefully that will be the end of it.
But please don’t think she’s a sickly little thing. She’s currently doing 20 hours of gymnastics training a week. She has the strength and determination I could only dream to have. At this moment, she’s doing aerials in my Bonus Room.
Click to see video on Instagram.
Update: August, 2014
It’s been a year since Abby started her IV Steroid Therapy and Methotrexate.
The results have been amazing.
After 3 months of the Steroid therapy, her spots were a lot better. The skin was softer, and the purple rings had become brown – which means they are ‘inactive’. The IV part of the therapy was not fun. She hates needles, and had to get blood tests every month, and continues to do so every 3 months, and the Steroids made her feel gross and miserable. Pretty ‘icky’. Fortunately, that was only for 3 days a month for 3 months, and is a distant memory already. The Alberta Children’s Hospital was amazing,the entire Staff blew me away. Every day we went in, there were crafts planned for Abby and her brother & sister, lots of smiles and the best Nurses ever.
She continues to take Methrotrexate every Friday, and will for an undecided amount of time. Her Rheumatologist has seen patient’s Morphea become active again after going off of it, so we’re just going to continue. If we stopped, and they became active again, we’d have to start over with the Steroids too, so it’s easier to just continue. Abby has zero side effects from the Metho, as long as she takes her folic acid.
I couldn’t be happier with the results. Her spots are way less noticeable, and she even wears tank tops around her friends now, which she didn’t do a year ago.