My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, January 13, 2011

The GI Experience no child should have to endure...

 Hannah's GI issues are not a new issue...been there for a very, very long time. We remember when Hannah was a toddler- she never wanted to keep her panties on, she would cry and cry to have to wear a seat belt across her tummy, she would never wear a pair of shorts or pants/jeans.   She was totally potty trained by 19 months old- we now wonder if the discomfort of diapers across her tummy forced her to potty train much earlier than the average baby. To this day- we can't put our arm/hands across her tummy. This is Hannah's sensitive spot on her body.  Why? We don't really know why.  We do know that her recent abdominal ultrasound showed  her liver , spleen and lymph nodes are enlarged. We also understand that having Systemic JRA can cause inflammation to her heart, lungs, lymph nodes, liver and spleen.  We have ruled out medications through the past few years.  We have tried many tummy medications to help this abdominal pain. Nothing has seemed to help. The only thing we do know is that as Hannah has increased arthritis joint pain/swelling...her tummy complaints worsen.  Some days she will throw up and keep going like nothing ever happened.  Occasionally Hannah has bright red blood in her stool, and loose stools.  We continue to search for answers as the months pass by and the journey of Systemic JRA continues.
Abdominal Ultra Sound- November 2010
We finally made the GI consultation appointment  in November 2010.  We were directly lead to a phenomenal GI doctor in Tampa affiliated with All Childrens and St. Joseph Hospital.   I don't usually like to blog and include physician names- but he is an exception.  Dr. Greg Kaiser- an amazing, caring, funny,educational,  loving man!  After a zillion questions and examination of Hannah- Dr. K shared his thoughts in depth and we discussed a plan to try to find out why Hannah has so much abdominal pain.  First, we increased Hannah's Prevacid to 30mg twice daily for 14 days.  He did not think this would help, but wanted to to try an easy, non-invasive approach before we move on to the next step.  Dr. K was right- no changes in Hannah's abdominal pain during these 2 weeks.

Sprite, 7-Up and Sprite Popsicle
The next step was to schedule a Colonoscopy and EGD for January 7, 2011. truly made me sick to think about how I was going to explain to Hannah that she wasn't going back to school with her friends the week after Christmas break, no food for 3 days and we had to prep for this special "tummy test".    I remember the conversation so clear and it could not of been better.  Hannah wanted to buy her 7th grade friend, Jennifer, a gift when she returned to school.  I felt it was time to I did! I had rehearsed what I was going to say so many times, but when it was happening....I made up a song about "The cat in the Hat drinks Sprite here & there".  Hannah loved my song and I kept adding lines as to where we can drink her sprite and how Sprite can be served.  For a girl that loves Sprite..she was thrilled to go on a clear liquid diet and drink as much Sprite as she desires over the week.  Hannah excitedly shared her upcoming diet with her brother, Jake and dad and Grandparents. We even took a trip to Publix together and bought $70 worth of Sprite,7-UP, Gatorade,  light colored Popsicles, clear hard candy, gum, and clear chicken broth.  We were prepared - Dulcolax, Magnesium Citrate, Enema's and all in cart!

Two days before colonoscopy and EGD- we sent Jake off to school and the clear liquid diet began.  I had packed a cooler full of variety sizes of Sprite cans/bottles and 7-UP and we were off for the day. I thought if I kept her out of the house- away from pantry and food options- it would help Hannah!  NOT--  Hannah begged to go home and was miserable.  She was done with Sprite and wanted FOOD!  I tried to redirect her constantly, thought of everywhere we could go or even buy!  This was one of those days- whatever she wanted...she could have!! So we made stops at Target to buy LIV dolls, Justice for new outfits and every store that sold Icee's.  We never found an icee that she would settle for, she wanted FOOD!  So by 10:30am- we were home sweet home!  Hannah fluctuated in her mood- tried to be happy Hannah, but would then cry in my arms as she demanded food.  Peanut butter was on the top of her list! Unfortunately, I had several jars of peanut butter in my pantry. Hannah would take a jar and open it, smell it and beg to let her take just one finger lick of peanut butter.  Hannah went to bed on night one with a jar of peanut butter in her arms- saying" mommy- please let's give up and let me have peanut butter".  She slept in my bed, close to my I listened to Hannah's tummy grumble through out the night.

One day before colonoscopy and EGD- So I learned that leaving the house didn't work for Hannah. So we spent time outside hand feeding our chickens with peanuts, bubble baths, manicure/pedicure spa from Mom, and lots of imaginary play with her new LIV dolls.  Grandma visited Hannah during the day- and brought a bag of Justice goodies for when Hannah has to drink her special juices in preparation for procedure.  Hannah was a bit more quiet today and complained less about wanting food. More tears today, but never angry or mad. She simply was hungry and wanted food!  The jars of peanut butter were laying in many rooms in the house.  She never tasted it, just cracked open the jars and smelled it!  Hannah managed to drink nothing but Sprite all day- her second full day of Sprite only.

5pm  Preparation Begins...
What a trooper!
Each sip...worse and worse!

The clock was moving faster to 5pm.  This is the time we were to start the dreaded "cleansing out" preparations.  I  pulled out my fancy wine glasses, china dishes and cloth napkins for our fine dining experience.  Hannah walks into the dinning room and says, "ohhh....Mommy you got your china out for dinner tonight".  I said kinda....this is your dinner tonight.   2 Dulcolax tablets, and 10 0z of Magnesium Citrate, which has to be drunk in less than 30 minutes.  We set up the timer, and discussed the rules to be able to get Grandma's Justice goodies.   We were on schedule.... and the fun began!  No need to explain.... NOBODY likes Magnesium Citrate.  This is the same kid who wouldn't touch jello, soup broth, clear  candy, light colored icee and now she HAS to drink 10oz of this yuky stuff in less than 30 minutes!!   She surprised me- we got almost every sip of it in her in about an hour.  It did take begging and bribing.....but I'm so proud of Hannah for doing it! Daddy got her two lava lamps to finish up the very last few gulps!

So I expected results within a half an hour or so. I warned Hannah not to travel to far away from the bathroom.  We waited, and waited and NO RESULTS!  Hannah was so tired and wanting to go to bed. I wouldn't let her go to sleep- I knew she had to have bowel movements! After awhile, I text a friend who knew from experience what to expect- she recommended calling pharmacy.  I tried- no answers and he thought what she took should of worked immediately to 30 minutes.  Next, I called her GI on-call Doctor.  She advised me that we had to give Hannah a teaspoon of murlax powder with 4oz of Gatorade every hour until 4am.  Then do a adult Fleet enema at 5am.  She clearly said," If we do not totally clean Hannah out, then procedure will be re-scheduled."   I panicked- and sent my husband to Walgreens at 10pm  to buy the Murlax Powder.  Just then Hannah walks into the kitchen and said "what's wrong, Mommy- can we please go to bed now."  I could barely tell Hannah..."No- we can't go to sleep because you haven't went poop yet" and "you have to drink more, and more...all night, sweetie".   I was so upset and didn't understand why this did not work- no results???  I tried to tell myself that she hasn't ate anything since Monday at dinner and it was Wednesday night.  Maybe nothing there??   In desperation- I tried an adult Fleet enema while Bobby was at Walgreens.   Yes- it worked! Hannah had one bowel movement, but I was literally jumping around, so HAPPY!!  Hannah layed back down and was fast asleep.  I did not have it in me to wake her up and try to make her drink another 4oz EVERY hour through the night!  So in a way...I gave up!  I never slept a minute and was so upset thtat I did something wrong and put Hannah through this and not able to proceed with colonoscopy and EGD.

Arrived at St. Joseph's Hospital at 6:45am.  Of course, this is the day that it rained cats and dogs!  We did our pre-admit paper work and was directed to the pre-op admission area.  Many children laying in hospital beds, Iv's and nurses busy completing paper work for each of their patients awaiting for surgery of some type.  Hannah was a bit nervous, but was a trooper. She picked out "Tutty-Fruitty" flavor for her mask she was explained she would have to wear. Her only job was to breath....   Next- Hannah is wheeled down to the operating room area. Two different anesthesiologists visit us..... Lots more questions and very inquisitive about Hannah's heat murmur that comes and goes.  Everything was explained to us...lots of "maybe, and possibly......" Hated to sign the paper work that the anesthesiologist circled" may cause death". It is rare- but thoughts cross my mind...what if Hannah was that rare case with complications??  Finally, it was 9:30am-- Hannah was wheeled down into the operating room. Her eyes got big as she looked around the room briefly with several doctors and nurses close by.  The nurse handed Hannah her IPod and let her watch a movie.  It wasn't long after has mask was placed over her nose, eyes rolled back and Hannah was fast asleep.  The hardest part......Mom and Dad had to walk away from our baby girl!   I looked at Dr. Kaiser and said, "Please take care of my baby".

So we sit in the waiting room.....tears roll down my face and I question myself, did I make the right choice?  Should I have put my 6 year old daughter through this and what for?? Is this really going to answer Hannah's long history of abdominal pain?   I watched my watch as each second passed by.  Wondering if Dr. K was going to be able to go down far enough to reach the Ileum, was Hannah cleaned out enough to proceed with procedure? About 45 minutes later- Dr. Kaiser walks out and said ,"she is ready".  I about flew behind those doors to get to Hannah.  She was all curled up in a blanket, holding the stuffed animal she received from nurse and sound asleep on her side!   Dr. K didn't have a whole lot to report.  He took about 6 biopsy's or so (Esophagus, Antrum, Duodenum, Rectum, Colon, Cecum and Ileum). He was mostly concerned about the Ileum area because this is the area that Crohn's usually first shows signs and most all immunology issues lay here.   So nothing alarming was noted on the screen and biopsy's were taken.   Results should be available in 5 days.  Perfect timing- the day before our Shands visit to Pediatric Rheumatologist.
It's done.... Sound asleep! Resting peacefully!
Hannah was so BRAVE to hold back all tears. She woke up to a sore throat and bottom and truly didn't understand why! The nurses told her she would rest while Dr. Kaiser would take special pictures.   It's all over.... NEVER want to go through that again!!  I hope this is not something that needs to be repeated in the near future.
 The recovery nurse wanted Hannah to sleep at least 30 minutes or so. She warned us that Hannah will most likely wake up miserable, sore, yuky taste in her mouth and tearful!  Bed rails pulled down- Mom slide next to her to awaken my princess.  She was a bit surprised to see an IV in her hand, heart monitors, and  in a different room.  She was given Gingerale (generic brand)-- nope....Hannah didn't like the  flavor despite she had gel in her moth - down her throat, ect...   The nurse reviewed discharge directions and reminded us that Hannah may have blood in her stools and throw up blood and have a low grade fever for a few days.  Bed rest and light activity was advised for the next 2 days.

Hannah is home...Finally eating her pancake with peanut butter!

We may not know all the answers as of today. But we did get the biopsy results from Dr. K's office. We are happy to share they were normal.  Not sure what is next.... Hannah has another GI appointment in 2 weeks. We hope to find out more and be reassured some things were ruled out!  Hannah will start Remicade on February 9th, along with her brother, Jake. hard to believe both my babies will be getting infusions together!

Thank you for your continual prayers, generous hearts, constant text messages and emails. Mom & Dad- Thank you for staying in FL to help with Jake and making sure your girls are good!  It was a long week, a week I hope to not ever do it  again with Hannah!  She was such a trooper and am so proud of her!

So much not understood.......But we do know it's all a autoimmune disorder!

I often ask myself, "why is there so much not understood about JRA". All that doctor's and scientists know is that it is a autoimmune disease. And just about everything falls under the "autoimmune disease" umbrella. Even though we know there are no right answers, no right treatments and no cure. It is still frustrating that we just don't have so many answers and so often we hear  " because it is a auto immune disease".                            
For family & friends who are following Jake & Hannah. Here's the latest scope with the Sloan Siblings....

Jake and Hannah both had their rheumatologist appointment at Shands on Wednesday, January 12, 2011. Jake IV's (Remicade/Solumedrol/ Zofran/Benedryl) got started very smoothly this morning. He got a higher dosage of Remicade today. We are hoping since this is his fourth infusion of Remicade and giving a higher dosage that this is the month that we will see the difference in Jake.

Jake's current medications include:
Methotrexate .06ml weekly injection
Leucouorin 7.5mg 1x/weekly
Clinoril 150mg 1/2 tablet 2x/daily
Zofran 4mg every 8 hours/prn
Enbrel 25mg 1-3 shots weekly (depending on how he feels)
Tylenol 3 with codeine 120mg 5ml every 8-12 hours/prn
Melatonin 1.5mg 1x/daily
Cyproheptadine 4mg 1/2 tablet 2x/daily

Infusions (every 3-4 weeks):

Zofran/ Benedryl/Toradol

Hannah shares the infusion chair with Jake.  Not sure if Jake enjoyed the company, but Hannah tried to be kind and help her brother in anyway. Next month- Jake & Hannah are both scheduled for Remicade infusions together!!  O my....Is mom ready for that?? I'm hoping Hannah will be brave like Jake , and Hannah's smiles will rub off on Jake.

Jake puts on a fake smile for Mom. Smiles are very few on infusion days!

  During the Christmas break, Jake got the H1N1 flu and was put on Tamiflu for 5 days.  Jake recovered fine from the H1N1 flu then simply wasn't feeling well again. He then had a sinus infection/fevers/ increased joint pain  and started Augmentin XR for 10 days. So it was hard to tell in December if the Remicade is starting to work with his joint pain/inflammation. Typically, a cold or virus will put kids in a JRA flare up and they struggle to fight a common cold.  It's hard to tell what doesn't hurt during these times.

Dr. E gave Jake a prescription for Tylenol 3 for school. When he is not feeling well- he can take Tylenol 3 to help him get through the school day. Hoping Jake's attitude towards school won't ever change- He LOVES school and doesn't ever want to miss school or have to be checked out for any reason! She also gave him new orders for Physical Therapy/Aquatics and Occupational Therapy. He will need bilateral wrist splints. In wearing these wrist splints we hope to decrease chances of joint deformity for Jake in his wrists. Not sure how Jake will handle wearing these new splints.  His first question was, "do I have to wear them to school, because everyone will want to know why I have them on".

We are still searching for a TMJ doctor who actually treats children with JRA and are able to treat by using the aristospan (steroid) injection into the temporomandibular joint (TMJ) . Had another eye opening experience..... Jake went to a new doctor recommended by his dentist and he encouraged Jake to chew gum and thought it was a muscle issue. Yes- he did hear Jake's jaw pop, grind and shift. I walked out of that office wondering who was crazy? Me or the dentist? Another waste of $100, Jake's time out of school and mental distress!!  Dr. E at Shands reassured me that it is arthritis in his jaw causing these problems and not a muscle. So the search is on....again! We may just have to take a trip to Alabama where we know of a doctor who knows what he is treating and does it right!
Not a fun experience!

Hannah..... today was the day we were to hear from her GI doctor about her biopsy results from colonoscopy and EGD she had last Thursday. Still waiting for results & answers- as we sit in the swamp- no results yet! Dr. E wants Hannah on Remicade despite what the biopsy shows (Crohn's or not). So if the biopsy is normal- Hannah will come to the Swamp with her big brother and get her first dose of Remicade on February 9th. If biopsy results are positive- we will stop Enbrel immediately and start Remicade in a few days. Hannah also got Physical and Occupational Therapy orders. Hannah's knees, hands were swollen and especially her fingers on right hand. OT will hopefully determine a good pencil grip to help Hannah and evaluate for other accommodations. Am thankful that Lakeland  {LRMC} has a wonderful rehab center with a therapeutic pool. {Actually 2 pools- one for pediatrics only} It's one of our few appointments that we aren't driving out of town for treatment. surprises or shocking news at the swamp today. I am staying positive that Jake will finally get some relief this month from his Remicade infusion. Hoping to get my happy kid back! The grumps gets very old,  very quickly! Poor Hannah and mom gets the worse of Jake's crankiness! Not looking forward to having both my babies lined up in the infusion room getting Remicade! But if this is the best option we have- I'll give it a try and trust God to protect my children from all the other possible risks involved!
Hannah was amazing- so BRAVE! Not something a 6 year old should ever have to endure!
Thank you to the family and friends who are such a great support to Bobby and I.   I do understand that the bits of information we share with you- may not make sense. No worries- we don't ever understand the entire picture ourselves, and it changes from day to day.  Like I said, "there is so much not understood and the only thing we do know is JRA is a auto immune disease and with that- anything can happen." 
More information about Remicade for those of you who are not familiar with it.