Alexa's Story

This is just a quick summary of what Alexa Rowley has been thru.  She has been having stomach pains off & on since she was a child.  I am Mindy Rowley writing this story & I am her Mom.  In 2011 she got her appendix removed & we thought that would be the end of the pain but she continued to have attacks at times.  The summer of 2012 we signed her up to go to EFY camp & her pain was so severe that I had to pick her up early & she couldn't finish out the week.  After that she had girls camp & had to just go up for the day & come home at night.  The pain was getting worse & more constant by then.  By the time school started she was only able to go to one full day of school & we realized it was not going to happen that year.  The pain was so bad we had to get her on something stronger for her to be able to cope.  That's when I decided to enroll her in American Schools, a home school correspondence program where she could work at her own pace.  I had had two other daughters graduate from there & knew it was a very good school.  

That is when all of the testing, guessing, ER visits & my research began!  She had CT scans, ultrasounds, Endoscopes & hida-scans done.  Everything seemed to look normal except on her hida-scan her ducts seems a bit enlarged.  That made Dr. Cook think that she needed her gallbladder removed.  At this point in Oct, 2012 we were willing to try it since we were making multiple visits to the ER every month.  Well that surgery didn't seem to make a bit of difference or help with the pain.  The thing that was even more frustrating than that was that Dr. Cook wouldn't believe that her pain was "real" & actually had the nerve to say to me that "it is all in her head!!!"  

That is when I really started doing some major research & found out about Sphincter of Oddi Dysfunction.  Dr. Sharp, our neighbor & primary care doctor, is the one who first mentioned it so I started really looking into it.  I joined a facebook site & started talking to people who have it & read article after article about it.  I was convinced that it was exactly what Alexa had.  There was a surgery that could be done to help but there was one test called a monometry test that could not be done here in Utah because they didn't have the proper equipment.  I talked to a friend I had met on the facebook site & found out about Dr. Robert Hawes  in Florida who was supposed to be the best & made an apt for her to go there.  This was one of the scariest things I had ever done in my life!!  Anyone who knows me knows how directionally challenged I am & to go to another state all on my own & rent a car in a big city was crazy for me.  I was pretty desperate to get my daughter better so whatever it took!!  Well, after trying foot mapping, acupuncture, chiropractic, changes in diet, cranial sacral therapy & lots of other stuff, in Nov of 2012 we went to Florida to see Dr. Hawes.  He did an Endoscope Ultrasound, a monometry test, along with an ERCP & sphincterotomy.  That is where they cut the sphincter muscle on both sides to relax it & put a stent in it to keep it open.  Well, that set off pancreatitis, although I didn't know that was what was happening at the time.  They had to admit her into the hospital & we ended up having to stay there for about a week.  I have never done anything harder than watch my daughter suffer so much!!  We were so hopeful that she would have some relief finally but no, there was still not much relief from that.  She felt better for about 3 days & then was back to her usual pain again.  

In March of 2013 Alexa was admitted in Primary Children's Hospital which turned out to be quite a joke!  Here is a little part of my journal that I wrote at that time:

We did learn that Primary Children’s hospital is NOT the place to go if your child has something that doesn’t show up on any tests.  They were absolutely ridiculous!!  In Florida when we were in the hospital the dr came in & had a one on one discussion with us but not there!  They have 4 doctors come in together & made us feel as though we were on trial or something.  At one point when I asked why they thought she got better for a while after her sphincterotomy one dr said pointing to another, “Oh, he can answer that for you.”  Then he said, “We know it isn’t that anymore since the sphincter has been removed.”  Dad & I just looked at each other thinking that he was nuts.  Also I asked them about the article I had brought in & if she could have Celiac Artery Compression Syndrome & they immediately said, “It couldn’t be that or she would just have pain after meals.”  They were so quick to dismiss anything we had to say since we were just the lowly parents & they acted like they were Gods.  After they left I email Greg & asked him if he only has pain after meals & he wrote back & told me that he has constant pain that gets worse after meals.  He also sent me some articles about people diagnosed with this & one lady had constant pain with no change with meals.  These doctors don’t even bother to research anything & won’t admit if they don’t know about something.  They also were trying to tell me that they had no evidence of blood in her stool.  I told them that the ER dr named Dr. Hayes had done a test & it was positive for blood in the stool.  She just said she would have to look into it.  Basically, they decided it was “all in her head” & she needed to see a psychiatrist.     

That's our opinion of them, haha!  We continued to run test after test trying to figure out what to do for Alexa.  Oh, did I mention that she also has Endometriosis?  In April of 2013 she went in for surgery for that.  We took her to an Endo specialist over in Ogden & he said he removed all that he could see.  He also said she had some endo close to going into her bowels, she has always had severe pain with every bowel movement.  Well, that surgery really did help a lot with the pain of her endo at least.  We just HAD to get that under control as she really couldn't handle having the pain from SOD & that!  

So one day as I was chatting with a lady name Corrine on the pancreatits facebook site she asked me if Alexa had ever had the genetic test done for pancreatitis.  I told her no since no one in our family had probs with their pancreas.  She then told me that no one in their fam did either but that their son's test had come back positive.  Their 22 yr old son had just had this surgery called TP/AIT where they remove the pancreas & take the islets cells from the pancreas & transplant them into the liver to prevent diabetes.  When I found out that the test was just a simple blood test I decided to call Dr. Alsolaiman, one of our GI doctors, & see if he could order it, which he did.  It took about a month or so to get the test results back & we were in complete shock when, in July of 2013 the lab called & told us that her test came back positive!  I was even more in shock when I asked them what that meant & she told me she had no idea & that she had never seen one of these tests come back positive before.  I called Corrine that day & talked to her for some time & she told me that if the test is positive that Alexa would for sure need to have the TP/AIT surgery.  She said that since her test came back positive that all other testing could stop because that means that for sure she has pancreatitis & it will never get better on it's own.  We then made an appointment to take her to the pancreas specialists in Tucson, AZ.  We spent a week there in Aug of 2013 & they ran all kinds of tests & confirmed for sure that it was pancreatitis.  When she had the EUS done it set off an attack of pancreatitis & she had to be admitted into the hospital again.  Well, wouldn't you know it, a couple of weeks after our visit there their program closed down!!!  Some kind of bureaucracy was going on with one of the doctors.  There we were having to find another center to go to!!  We had our choice of Dallas TX, South Carolina, Minnesota, or a few others.  I was on the facebook site daily talking to people to find out their experiences at different hospitals.  There was a girl named Melanie who had a miraculous recovery from the surgery in South Carolina & I had talked to her Mom, Shelly, several times & she couldn't say enough good about the hospital there.  We prayed & prayed about either going there or to Minnesota.  We had decided on Minnesota & had everything all booked with flights & hotels & everything & a week before we were supposed to go prayed some more & decided we felt better about going to South Carolina.  I even lost money on the hotel in Minnesota but I quickly changed everything to SC.  In March of 2014 we went there & both Alexa & I knew it wasn't right.  Everything was wrong about it.  When we got back I waited & waited for the feeling of peace to come so I could make the appointment for the surgery there but we just didn't feel right about it.  We watched the church movie by Elder Holland called "Wrong Roads" & that is exactly our situation!  I suppose we had to go to SC to know without a doubt that Minnesota was the place we were supposed to be.  I called & made an appointment in MN & we went there in May of 2014.  Oh, I forgot to mention that our wonderful friends & kids planned a fundraiser for us & surprised us!  The Merchants who were our neighbors & great friends in AZ have a band called Firefly & they performed as a fundraiser for Alexa!  They were able to raise over $12,000 which more than paid for our deductible!!!  We feel so blessed & know that Heavenly Father's hand is in our lives.  There is a reason & a purpose for Alexa & us to have to go thru these trials.  We will go thru them with gratitude in our hearts even though they are hard!!   

ALEXA LOUISE ROWLEY

    

Alexa at party with friends before she was sick

 

Alexa in Fiddler on the Roof before she was sick

 

Alexa at hospital in Florida. It was called the Disney Wing

 Alexa waiting for endo surgery