Posts Tagged "Morphea"


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”.

Ugh.

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”.

Ugh.

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.

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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.
Scary right?
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.

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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.

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375 Hours + Gaps Diet


Posted By on Apr 30, 2013

374.75 hours. That’s how many hours my husband worked in April.

To put it in perspective, a ”normal’ 40 hour, Monday to Friday work week would’ve been 176 hours. But no one works normal hours anymore, right? So even if someone worked 10hrs/day for 6 days/wk in April, that would have been 260 hours. 114 hours less than Mike.

He had 3 days off.

I was forwarded an article about ‘Married Single Moms‘, and then got some more perspective. I could have it worse.  He was off on Easter Sunday. He’s not flying to a different city every week on business. He’s home most nights (was gone only 8 nights in April). He makes the kids lunches every night that he’s home. He was here for putting the garbage out every week but one. We were able to workout together at the gym twice (in between calls one day), went out for dinner once and to his Mom’s once, and we got to go to the Farmers Market together one day too. He goes grocery shopping between his calls for his patient transfer business, ad picks up my photo orders from my lab downtown.

Why does he work this much? I just asked him that question, and he said, “because I like to provide for my family!” It’s just who he is. It’s like a game to see how many hours he can work in a month. This was probably a record. And I hope he doesn’t try to beat it.

I’m grateful to have a husband who works so hard, so I can stay home with the kids. This was very important this month especially…one of the girls has been home sick from school 5 out of the 7 school days. I’m so grateful I didn’t have to be stressed about taking time off work.

But I am exhausted (as is he, I’m not comparing). This month has brought a new very strict diet (Gaps) for my daughter to treat her Morphea. This diet doesn’t allow her to eat grains (not just wheat…ALL grains are out, including oats, rice & corn), starch (potatoes), sugar or dairy (only the really expensive special yogurt from the Farmer’s Market, and old white cheese). Meat can only be grass fed, not just organic grain fed.  I had to special-order over $500 worth of grass-fed beef & chicken this week – the beef will be picked up out of the back of a truck in the Chinook Centre parking lot!

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This is bringing a lot of cooking challenges, especially for the nights she has gymnastics, and I can’t just toss her a yogurt & a granola bar for energy beforehand. She is living on smoothies and eggs. Organic eggs, of course. Added to this are her supplements. A combination of 8 bottles of drops, 3 bottles of pills and liquid (blech!!) Omega 3 Oils. We’ve been asked to try this for 4 weeks to see if we see any results.

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Why did we turn to this extreme natural way of dealing with her Morphea? Her Dermatologist has labelled it as ‘fast progressing Morphea’ and is referring us to a Rheumatologist, who is “more comfortable prescribing high-dose steroid medications to children”. Um no. Especially since all my research shows that there’s very little results from these nasty medications.

From the Mayo Clinic Website:

Corticosteroids. Your doctor may prescribe these medications early in the course of treatment to reduce inflammation and prevent thickening of the collagen. They can be taken either orally or topically or in both forms. An increased risk of infection, high blood pressure, bone loss and fluid retention are possible side effects associated with the use of oral corticosteroids.

Again: Um no. Not until we try the natural way first at least. She needs her bones.

How is Abby doing with the diet? Well, we’re in the middle of week 2 (I just had to double check that …it feels like WAAAAY longer!), and she’s doing better than expected. I’m *this close* to making all the kids change over to the diet though, to make it easier for her – especially for breakfasts. It’s not a happy morning when she’s watching her brother & sister eating cereal, english muffins & bagels.
She understands why we’re doing the diet, and she has said a couple times that she doesn’t care if the Morphea spreads (usually because she wants chocolate). The Naturopath did warn us that it would be hard for her psychologically, because the Morphea isn’t “pain”. When children know that if they cheat, they will feel pain, it’s a little easier.

Today we had to go for her first ever blood tests. The Rheumatologist requested them. She’s never had a blood test, and was freaked right out. As in, “I’m not going” freaked out. I kept telling her it was just like so many other things (the dentist, her skin biopsy), we’ll be laughing about this when we leave, about how it was no big deal.

We got there for our 3pm appointment and were still waiting at 3:30, when the nurse came up to me and said that she thinks there’s been an error because the Doctor has ordered some really ‘obscure’ tests. I tried explaining that she had a really obscure disease, but she still wanted to double check, so we had to wait longer until she got ahold of the Doctor. Sure enough, all the tests were requested. Then they realized that because she was only 55lbs, they couldn’t take enough blood for all the tests, so we’d have to come back tomorrow for another poke. Super.

But, I’m happy to announce, that after having 7 viles of blood drawn, my 9 year old admitted (again) that I was right…it wasn’t that bad. While walking out of the lab, she said, “Okay Mom, we can laugh about it now”. She’s so awesome. Worth every cent and minute of extra cooking & shopping. And, when she wrapped her arms around me tonight and said, “thanks for all the extra work you’ve been doing for me”, that’s when I knew what I had to say to my husband.

 

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