Wednesday, February 29, 2012

Keep Calm and Fight Crohn's

Today Jim and I took Super Sweet Sophie to Children's hospital for her 3rd colonoscopy and endoscopy in as many years.  Yea - she's 6 and this is just another day in the life.  SUCH A TROOPER!

I know everyone thinks their kids are amazing and fantastic and beautiful and perfect but seriously my kid really is amazing and fantastic and beautiful and perfect!  Sophie is a ROCK STAR.  

Sunday we started a low residue diet with a little Ex-Lax on the side until Tuesday when we went to an all clear liquid diet combined with 32-oz of Miralax in 3 hours followed with an Ex-Lax chaser.  That's right the girl didn't have anything but clear liquids all day Tuesday!  She didn't complain once.  I fasted with her and I was freaking hungry!!  We had juice, water, sweet tea, a popsicle and some chicken broth and that's it!  

We started the Miralax at 2p and had it complete a little after 5p.  That's really hard for an adult to do but sweet Sophie managed to get it done with little complaint.  She certainly didn't enjoy it but she did it and I think she is just the bravest little girl I know!

So, back to today . . . we arrived at Children's starving from lack of food but also starving for answers! Sophie has been on steroids for 2 years on and off and for 9-months straight without being able to get off without having severe UC symptoms.  She's been on Aziathiaprine for 9-months with various other drugs in the mix along the way.  All with no success.  We decided to do the scopes today because even on the steroids right now she is losing A LOT of blood each time she goes to the restroom.  Her blood work all looks good so we needed to figure out what is going on inside her sweet little body.

After the scope was done we met with Sophie's wonderful doctor and he showed us the the pictures of her colon.  The inflamed area has moved from just the left side of her colon to the entire colon in a classic Crohn's Disease pattern.  Her diagnosis has officially become Crohn's instead of Ulcerative Colitis.  This is something that although we thought would happen eventually was still a very hard pill to swallow.  

You can read about the differences between UC and CD here.  

Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like.  We need to change that. 

At this point in our journey we feel like and Sophie's doctor feels like the only thing that will bring her some relief is to start her on Remicade.  

We will get the results of the biopsies next week as well as the result of a TB test that she had to take before starting Remicade.  We are hoping that the Remicade is the answer we have been looking for but we are also scared at the same time.  It's a big drug to give to such a little girl and the warnings and side effects frankly scare the hell out of us. 

Jim and I came together as parents today and made the decision that this is the course of action we need to take, this is what is best for Sophie, and we will have faith that everything will turn out the way it is supposed to turn out.  As parents we are often faced with tough decisions and we can only do what we feel is best ---- not ever really knowing what the correct answer is or should be ---- this is certainly one of those times for us.  

Keep Calm and Fight Crohn's . . . 


Tracy said...

She really is a rock star! Love her and Love you! Praying for the steps to come.

Misty said...

Sophie is a trooper, just like her mama! Praying for better days ahead for this sweetie!

Stephanie said...

Sophie IS a rock star! Seriously, what that sweet child has to go through...and the fact that she probably does not even know what "good" feels like just breaks my heart. I will be praying that this medicine is the answer to get her feeling better.

You are a rock star mom and you handle it all with such grace. Much love to you, Laura!

Beautiful little girl! What a fighter! Wonder where she gets that??? Praying this is the answer to brighter days! Love you!

Sarah said...

Thank you for including us in this journey, I hope that this medication is an answer minus any of the side effects. Take care, and yes she IS a rockstar :)

No doubt about it! Sophie IS amazing and fantastic and beautiful and perfect! And so is her mama! Love to you and your sweet girl!

Love how you join the kids in their sufferings...fasting with her...I remember, too, you saying you wore the omnipod or dex (or both?) ... such compassion you have for your little ones.

Meri said...

She is due for a miracle too. Let's add her to the prayer lists. Love you dear sweet friend!

sky0138 said...

what a beautiful brave girl! and you are an incredible Mom!

Amanda said...

Laura, my heart just breaks for your little Sophie. She is so young to deal with so much! My sister has uc and I have crohns. We have both been on remicade since 2007 and it has been amazing for both of us. My sister delayed starting it for a long time because we were nervous about the side effects. However, once she started her health improved soooo dramatically. When I was running out of options a short time later I was less nervous to start it because of her success. Neither of us have had any bad side effects. We are actually both pregnant with the second baby we have each had while on the medicine and have had very healthy pregnancies and babies. I hope your sweet Sophie will have similar results and can get back to being a healthy little girl who remembers what it feels like to feel good!

Penny said...

Oh sweet Soph! I am sorry to hear the diagnosis, but glad you have found it, for it means you can start treatment. She is such a brave girl, and you are such a brave Mom.

Leigh said...

Super Sweet Sophie is just amazing!!! I so pray that even if it sucks at least you got answers that will help Sophie feel GOOD again!! We will definitely be praying for a cure for CD too!! You ROCK, Laura and so do your amazing kiddos!! Love ya!!!

Cindy said...

Sophie is seriously the most gorgeous little girl, inside and out! I'm glad you've gotten answers and there's a path forward for improving her health and well-being. Wish it didn't come with so much fear, but trust in God to take care of what you can't and that fear will ease a bit. Give her lots of hugs and remember that you have a huge community of people pulling for all of you!

Jessica said...

Wow..I am amazed at Sophie! What a trooper, and so sweet. Glad the scope is over and hope you all figure out what's happening so she can feel better soon!
Thinking of you all~

Jessica said...

Amanda: Sorry to hijack this thread, but we have a very similar health situation and I wanted to contact you via your blog, but didn't see how to email or subscribe to your blog. Can you contact me via mine? Thanks!

NikDuck said...

Laura, I'm so sorry for all you and sweet Sophie are having to go through. I think you are right when you say, "Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like. We need to change that." That is just heartbreaking. Reminds me of kids before they are diagnosed with T1D and then once they start receiving insulin, they feel SO much better.

I'll be praying this drug is just what she needs with NONE of the scary side effects. How encouraging to read Amanda's comment about her and her sister being on this same drug with success!

Unknown said...

There's something so sad about seeing those words in black and white. Oh, my friend. I'm so proud of how strong you have been in managing both of these amazing kids.

Sweet Sophie is a superstar to the highest degree.

And so is her mommy.

Go Super Sophie! It never ceases to amaze me how our children cope with medical adversity, very humbling.

Amy said...

She is a reflection of your parenting and love, sweet Laura.

Information and clarification will only help you and Sophie's Dr.'s treat her, and treat her well.

Being scared is just a sign you love and adore your daughter . . . you will make the right decision for her, I just know it :)

Kelly said...

Im hoping and praying the accurate diagnosis brings the promise of the right treatment and eases the symptoms and agony (for you both!) ((Hugs))

Diane I said...

My sister was dx with Crohn's at age 8, after almost a full year of mostly minimal symptoms. I think it was 1980 or so. She was on Prednisone, flare ups every 18 months or so till high school. She will be 40 this August, had 3 uneventful pregnancies, was off all medication for more than 10 years, has had 2 bowel resections, and started Remicade about 3 years ago, I think. She tells me she can feel the difference before & after the infusion.
I was dx'd with Crohn's also, at 18, just after graduation & little over 6 months of abdominal symptons & almost daily diarrhea. I am 44 now, 2 successful pregnancies, 2 bowel resections, and still on Pentasa & 6-mp.
Sophie will do fine, especially with a mother like you to care for her!! Hoping & praying that Remicade is your answer & that Sophie feels better soon.

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Just a Mom

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I AM my son's pancreas.

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