Wednesday, May 9, 2012

Garyn's Story...{it's a long one...}

As some of you know we have been battling eczema with our daughter since she was a baby.  BUT really been battling it for about the last year and a half almost two years.  As a baby she had patches here and there and we always put the creams (steroid and lotions) and such on them but it never really went away.  The eczema would clear up quite a bit in the summers but come back in the falls and winters (which isn't really abnormal).   

Almost two years ago she got sick, she had gotten strep.  Not to be gross but it was not just oral strep it was an anal strep too which is evidently the same as oral only she just had gotten hers on her bum as well.   I literally took her in because we had been trying to get rid of it on our own (thinking it was eczema)...and then with yeast infection stuff, more creams, lotions, powders, etc.   I was like man, this kid HAS to understand she can't be wiping that way.  My assumption was that she was doing it incorrectly.  She was put on not one but two antibiotics back to back...that ended up not clearing up her butt.   I literally had taken her in two to three times for that same thing but after the initial visit she never tested positive again for the strep.  Well that didn't make sense...what was causing that redness and weepy rashes then?  AFTER MONTHS I finally say to her pediatrician, this can't be normal.  Nothing clears this up and and we have tried everything, or so I thought.  I finally got the referral to the dermatologist probably in September. 

The last straw was when I went in to get the last cream that the dermatologist prescribed the pharmacist says to me, that will be $243 or something outrageous like that.  I literally gasped thinking oh my heavens how on Earth are we going to be able to give this kid what she needs to clear this up.  Insurance wasn't going to cover it...luckily we just had to go a round about way and they did cover it eventually.  We were given two options that day in the dermatologists office.  That cream I just told you about OR a coal tar treatment that would stink, ruin clothes and was down right messy.  I felt like I had no choice but to go with the black box warning drug.  You may wonder what that has been linked to cancer.  I know right?  ugh.  I was really upset when I left that office that day as I called my husband.  Now keep in mind at that time I didn't even know how much that would cost because I hadn't been to the pharmacy yet.  So my hesitations came from having to sign a release stating that I am aware this drug has been linked to cancer.  What on Earth was I putting my daughter on or rather what was I putting on my daughter?  Thoughts went through my head knowing nothing had worked before...would this work?  How long will it take?  Will it all come back?  and on and on.  Those of you who know me know I am a worry wort.  Well I have to be honest, the cream would work, it would clear it up BUT the minute we would miss one treatment it would all come back ten fold.  When I say one treatment I mean one, I missed one treatment before bed horrible the next morning.   Not to mention the fact that I couldn't stand touching the cream knowing it had such crazy risks and resorted to putting it on her with gloves.  Well after four months of that I thought this is NUTS!  I am afraid to touch this stuff it has been four months and nothing is working!  I AM DONE!  and with that I was done.  I called the pediatrician and told them I would no longer be putting that on her and I would seek something else out.  I was again referred back to the dermatologist.  Knowing I only had the TWO options when I went in there...I already had something else in mind.  

     One of my very dear friends I used to work with, has a son who has SEVERE food allergies.  I had talked with her a lot, read her stories about Ryan and I started to talk with her.  One very specific conversation in Target lead to the change Garyn needed!  So thank you JAYME!  Jayme will be starting a blog soon (if I have anything to do with it.)  I love you Jayme.  :O)  Now although her sons allergies are severe we obviously knew Garyn's allergies were not.  So after several conversations and me COMPLETELY SKEPTICAL...I called Jayme's chiropractor/nutritionist.  This was after I was going to totally try taking foods out on my own.  THANK GOD I didn't do that.  We wouldn't have been on even close to the right path!  That would have been horrible.  So I go in to meet with and Sheena Gordon was who we talked with.  I was so skeptical, the poor girl was probably like oh  I was like please don't talk to me about back  I need help with nutrition though.  :O)  Bless her heart, she was soooooo kind, sincere, sweet and down right amazing in the help department.  We got all the papers filled out and Garyn was going to go have a blood test to test for a food sensitivity.  Of course when I went to the pediatrician they had never heard of the test and they were trying to get me to go back to the dermatologist.  I said I think at this point I want to try this with Garyn and see where it goes.  Even though I was so not even thinking it would work I was praying that God would prove me wrong.  We went and took the simple blood test and got our results less than two weeks later.  Boy were we in for a shocker.  I assumed dairy and maybe wheat.  Well Garyn had MANY intolerance's, from milk, goats milk, orange, soy, gluten, wheat, yogurt, oats, and so on.  So me trying it on my own probably wouldn't have worked.  LOTS of things weren't even on my radar.  So we went back got our results.  She gave us LOTS of ideas, but that DID NOT prepare me for that first trip to the store. 

I went to the things we always buy.  a graham cracker for instance...NOPE she couldn't have it.  Peanut butter, nope peanuts were on her list.  I I literally about cried about an hour after being at the store.  I did realize ok, we are going to be doing meats, veggies, and fruits...often.  No goodies.  That wasn't entirely true, I then talked with Jayme as well and she had great suggestions too.  There is a peanut butter substitute, I just didn't know too much about what was out there.  She could have yogurt, just not what she was having.  I found not one but TWO new yogurts she could have.  One made from coconut milk and one from almond.  Then I could put a few of her chocolate chips in it and that was a treat for her, or breakfast or whatever.  So after the initial adjustment period it really wasn't as bad as one would think.  She can have cookies, just have to be made with "her ingredients".  Now don't get me wrong...there are times she wants a good ol piece of bad for you pizza.  I don't blame her.  She had all that good stuff and {poof} gone in one day.  Garyn surprised me TEN FOLD!!!  I honestly thought what am I going to do.  Garyn was super picky!  Yogurt was always Garyn's go to for breakfast.  She wasn't a big breakfast eater.  I struggled with her everyday over it.  Well she literally put on her big girl panties and went with it.  There are so many great products I didn't know even existed and with the help of Dr. Sheena and my friend Jayme I was well prepared on what to look for and just had to rework a bit to make it all work.  I make my own spaghetti sauce so I knew she could have that, i made my own taco seasoning, she could have that, and there were a few more things...but Jayme said, don't worry about the variety yet, that will come later.  She was so right.  We find more and more things she loves and can have each time we go to the store.  As well as my staples for her.  Meals are much easier today...even when I have to have something quick!  I don't have to cook for hours.  :O)  win win!

So, that puts us at the diet change...we have been on this for three months as of today.  Sometimes things are much easier than others.  This takes TONS of planning to make sure I have what she needs as well as the rest of us...but as long as I can plan and prepare we are GREAT!  Well I heard so many negative responses in the beginning I am not gonna lie I started to question whether or not we were doing the right thing.  I wondered if there was something being pulled over our eyes and Dr. Sheena Gordon just wanted to take my money.  lol-I now know that was ridiculous.  About a week or two later Dr. Oz had a show on that was talking about this blood test for food intolerance's.  I was like does exist.  lol  That doctor on there talked about the same things Dr. Sheena Gordon talked with us about.  So I felt better.  I also had people telling me they saw results in three weeks, some sooner.  I was so ready to see these changes I was ridiculously checking her.  Well I am here to tell you that is NOT our story.  Three weeks came and went, six weeks came and went, 8 weeks came and went...I started questioning all over again.  I was not seeing great results.  Am I doing the right thing for her, this is expensive, she would look better one day and back to the same the next.  BUT one day I lifted her shirt and her back was soooo much better I almost screamed.  Garyn was having significant results.  Ours just took longer.  Now to be fair Dr. Sheena Gordon did tell us it would take a while but I heard so many people say they had such quick results I was hoping we would too.  So if you are reading this and you are just starting your journey, please know we didn't see great results for a while.  WELL WORTH THE WAIT!!!!!  You will see the difference speak a thousand words.  Garyn is so proud of herself for working so hard and now she gets to see here where all of her hard work has put her.  I am not sure what the future holds for us quite yet on the diet, but our journey isn't over yet either.  We will continue to pray and work hard on this and see where three more months puts us.  :O)  If you are still with me at this point as well as diet...we have been doing Vaseline on those spots and that is AMAZING!  and much cheaper than all those steroid creams.  We have not had a steroid cream on her in over three months.  Oh and a little side note...Garyn got sick again a couple of months ago and had to have an antibiotic and I freaked out.  Well it didn't ruin anything we had done already so I was happy about that. 

So when I look back, and I do the math, Garyn's eczema got 1000 times worse after she had the strep.  The reason I took her in the last time was a few nurses up at a football practice were like Jean, take her in, if that is strep she can die.  Scared me to death.  So when I think about all of that...I have no doubts the prior visits and all that beat Garyn's insides down and that is how we ended up where we did. 

I know that was long and I am sorry, but if Garyn's story helps just one child and keeps one more person safe from all of the steroids it was worth every bit of my time to write this out for you all to read.  Please if you know anyone who may be battling this or psoriasis please share this.  The patch on Garyn's back was psoriasis...she really I think has both.  But you can't know that for sure unless you biopsy but treatment would be the same regardless was my understanding so no point in subjecting her to that too.

So I just want to take one last minute to thank Dr. Sheena Gordon and Jayme, my family, friends, etc. for hearing me, helping me, and giving me support.