Kim and her daugher with Crohn’s Disease

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Zoe was completely healthy for close to 10 years. Then out of the blue she
wasnt.
It started the summer before 4th grade when she went to sleep away camp for the first
time. Her stomach hurt the entire time at camp. The counselors thought she was
nervous- and we agreed. Then she came home home tired and never seemed to feel
great the rest of the summer. 4th grade started and Zoe is a Type A straight A student.
She was worried that 4th grade would be hard and her stomach hurt all the time. Still
easy to explain. But then a new problem arose. Zoe is a tennis player and started
coming home saying her feet hurt. At first we thought growing pains, too much tennis, or
maybe just a low tolerance to pain? After a few weeks, the pain became more severe
so we went to an orthopedist. He diagnosed her with some fairly simply structural issues
that made perfect sense. So good.. that is taken care of. Only it wasn’t. The pain got
worse-so we went back to the orthopedist for a diagnosis of “Viral” and it will run it’s
course. Fast forward a few weeks and Zoe is now on crutches because she is in so
much pain that she can hardly walk with out them. But she is a trooper and goes to
school on crutches. Her best friend carries her books for her every day. Between the
crutches and pain in her feet- she can not walk the normal pace of the other kids. She is
mortified- but keeps going to school. All the while that the foot pain is getting worse- so
is the diarrhea. We are now up every night at 2am with massive diarrhea and I am
sleeping with Zoe to help get her to the bathroom. My 10 year old child can NO
LONGER get to her bathroom on her own because her feet her so badly that she can
hardly walk. So of course we go back to the pediatrician about her stomach aches, and
now added nightly diarrhea. She has also lost weight- but with all the diarrhea and the
fact that she doesn’t eat that much anymore- we are not surprised. The pediatrician
does blood work that showed an elevated “Sed Rate”. Of course we are saying Sed
Rate- what is that and what does that mean?? Our Pediatrician explained that it means
there is inflammation somewhere in her body but she can not diagnose it, and we need
a specialist. So we go to the Levine Children’s Specialty Center and explain what has
been going on for the past few months. They treat her stomach with some medications
and agree that this bizarre foot pain could be viral. If these medications do not workthey
decide that we will then run further tests and possibly begin to look at the two
different problems as related. We get our prescription and hope this is our cure. Zoe is
on this medication for 10 days. We go on winter vacation, crutches and all, trying to get
some relaxation after all these months and enjoy ourselves. EVERY time Zoe goes to
the bathroom was are obssessed- better? Better now? We are happy that she does
seem to feel a little better and diarrhea is not that bad. Though foot pain is still horrible.
But just a few days after she finished the round of medication- everything comes back..
worse. Massive diarrhea and she can hardly walk- with our without crutches, and she is
not really eating. Terrified we realize school is over for us until we get this figured out.
We call the Gastro Dr. back Monday January 7 and they ask if we can come down right
then. They schedule a colonoscopy and endoscopy for the next morning.
My husband carried Zoe into the hospital for that procedure and on January 8, 2013,
Zoe was diagnosed with Crohn’s Disease. We then come to understand that 20% of
patients with Crohns disease have so much inflammation it goes into their tendons or
joints- and can cause excrutiating pain anywhere in body- including the feet.
Zoe is immediately admitted to the hospital and put on IV steroid. The next day after 12
hours of the steroid, she walks down the hall in the hospital like no big deal. We cry. She
actually went back to school the following Monday. It took 2 rounds of steroids and 4
months- to finally wean off the Prednisone. She had a major set back that February
when she was almost off the Prednisone the 1st time. We think she got a high fever
virus (105) and the steroid was too low to protect her. She had a terrible flare with
bloody stool that we had never even seen during all the months before. Her Sed Rate
was higher than when it was first tested. Unfortunately she had to go back up on a full
dose of prednisone and start the weaning process all over again. All the while beginning
her medication 6MP- and wondering if the 6MP works or if this will happen again when
she weans off the steroid the next time.
Fast forward to April 7.. and some good news… she successfully weaned off the steroid
the second time no problem. She did gain alot of weight form the prednisone and was
so swolen that she did not look like herself at all. But the 6MP worked and is still
working because she has been fine and healthy since then. She has not missed any
more school. She is back to all of her activities- including tennis. She has lost all of the
weight and looks like herself again. And in August she did blood work and the best news
is that her “Sed Rate” is now 1 (from the highest being 75). 1!!!!
Our prayer is that nothing changes in our future. But at this point we are thrilled that
Zoe’s medication works and she feels fine. We have made healthy changes in her
eating habits that we also feel contribute to the success of her medication. A phrase
that I despised every day when she was weaning off the steroid, but have learned to
embrace is “Time will tell so take it day by day.” So this is what we continue to do.
Last- I have to add that through a terrible, awful and scary time some good did come out
of it.
We participated in the “Take Steps” walk on June 1. I simply sent an email to all of our
friends and family to see if anyone was interested in walking with us. In a short time- 60
people had signed up and we raised $4000 for Crohns and Colitis. It was the best day
we had had in a long time. A very long time. Zoe looked at me and said “Wow mom- all
these people are here for me?” Words can not describe what this meant to all of us.
Not to mention- Zoe saw hundreds of kids at Freedom Park that day in her same
situation. I believe ever since that day she has embraced her new diagnosis of Crohns
Disease.
Our family is happy to support any family in this situation. Crohns can look different on
every child and can take a long time to diagnose. EVERY family has their own scary
story. But it can also have a good ending and will most certainly welcome you in to a
group of supportive and loving families and open your eyes to a very important cause!

Kim

Kim’s daughter is treated at an ImproveCareNow center.

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