Thursday, December 5, 2013

Merry Christmas to all!

I am struggling to write my Christmas letter... this year sucked for us, to put it lightly. I don't want to write a Christmas letter that is a downer, as they are supposed to happy, cheerful notes to read. I wrote a lot and will paste it here, but will probably shorten it for the final letter to send out.


Honestly, this year has been the toughest year of our lives. Not to make our Christmas letter revolve around one sole thing – Keegan’s skin – but this has consumed our entire year... this is what most of our time and energy has been focused on, this is what I thought about every minute of every day this year. We discovered in March that Keegan has what is called Topical Steroid Induced Eczema. Basically, he was over-prescribed topical steroid cream, and it wreaked havoc on not only his skin, but most of his internal organs as well. Google brought me to a blog about a mom and her son who happens to be the same exact age as Keegan. On the main page of her blog is a picture of the back of her son’s knees... which could have been Keegan’s. I contacted this mom, and she led me to the organization called International Topical Steroid Addiction Network (ITSAN) and added me to the support group through Facebook. I started talking with the hundreds of other people out there suffering from the same thing. Every symptom aligned perfectly and it was my answer... but what’s the cure? Time and symptom management through the withdrawal period. Simple as that. But go through a hellish withdrawal while you wait to be cured. This year, we have dealt with adrenal fatigue, poor digestion, bloating, leaky gut, boils, nerve/muscle/joint pain, increasing “allergies”, burning/raw/oozing/swollen/flakey skin. We only went swimming 2 times this summer, and we didn’t play outside as often as we would have liked. The chlorine made Keegan scream, and the heat tossed him into a scratchy, oozy nightmare. I had to carry him up and down the stairs often, as he complained of pains in his feet, and couldn’t bend his knees because the backs were so tender and swollen. We spent a lot of time this year crying, laying around watching TV, scratching skin flakes off, doing lots and lots of laundry, experimenting with different creams/bathing techniques, experimenting with diet and supplements, and talking with my support group to keep me sane. My support group has helped me immensely, as I kept referring to healed pictures and stories to hold me back from caving into the steroid cream again. Time for healing varies, and I estimate Keegan’s time will be 1 year; he’s almost 10 months in. He’s looking so good! Throughout this process, I’ve learned more about GMOs and their connection to eczema and leaky gut. Hence our family’s switch to an organic and non-GMO diet that consists of no dairy and no gluten for 3 of us (Matt hasn’t jumped on that wagon yet!)

Keegan's skin is looking great!! My 2 biggest struggles right now.... BOILS and BLOATING!
Now, to a healing picture of feet!



2 comments:

  1. Hi, I just found your blog through some links from others from the ITSAN.org page. I have a 3 1/2 year old little boy who is about 2-3 months off steroids. I looked at your pictures of Keegan's skin and started crying. They are so similar to my Owen's that I just couldn't believe it. Its just such a nightmare to watch him go through this. I was so sad to see your little guy suffering too but the pictures of his improved skin give me so much hope. We are in a much better place than where we were in October but still have so far to go. I need to post on the ITSAN forum but thought I would comment on your blog first. It helps just to see that kids are getting better and to also know that someone else is going through this as no one seems to get the severity of this problem. If I tell people he has itchy skin they just don't get how this is an unbearable itch so bad he can't go to preschool or be out in public, not just like a rash on their leg. Anyway glad to see big improvements with your son and I hope 2014 is a much better year for your family. I'm think of starting a blog just a place to include all of the pictures. I am registered at ITSAN as JulieT.

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  2. Hi Julie! I just saw your post, sorry I know it's over a month old! It DOES get better. Keegan's skin looks amazing right now!!!! I'm rarely over on the ITSAN forum but I'll try to get over there more. I'm registered as JillianT. I hope your little guy is doing well, it's heartbreaking to see them suffer. Keegan's withdrawal will be a year this Saturday, so maybe I'll figure out how to post pix on the ITSAN forum, but will definitely update here as well. :)

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