Rotavirus Hits The Sloan Siblings......

The day started off perfectly! We were headed to Orlando for our " JRA Family Picnic".  Jake and Hannah were excited to see their friends and meet a few new friends who also have JRA.  We could not have asked for a better day, weather was perfect, good food,and great company.  CamoKids team was recognized with trophies for raising more than $10,000 in 2010 Arthritis Walk.   Several hours passed as all of us mom's and dad's sat along the benches talking away while our kids played and shared similar stories to each other.  After a few hours, it was time to say good bye and head home.  It was a long hour and 20 minutes home....Hannah fussed and cried almost the entire way home about her tummy hurting.  This is nothing unusual-- her tummy is often a area that is very painful and after increased activity it seems to hurt even more.  

After an hour of being home----- Rotavirus kicked in high gear and didn't stop!  Hannah first had diarrhea and then she talked about her tummy hurting and how it was grumbling loud.  Of course this all had to start at bedtime- everyone is tired and I hadn't even unpacked from our Washington DC trip. Within minutes from her first episode of diarrhea , the vomiting began and continued for 19 hours straight. Poor Hannah threw up every 5-15 minutes throughout the entire night and Sunday morning. She was so sick, weak and exhausted.  Many times she was having diarrhea and throwing up at the same time.  Of course, fever always comes with illness.  When my husband finally got home (worked 24 hours then goes straight to church) I called the pediatrician.  He recommended me taking Hannah to the Emergency Room if it didn't slow down within the next 3-4 hours.  Nothing slowed down and I wasn't able to get any fluids to stay down more than 5 minutes. My husband and I made the decision to go ahead and take her to the emergency room for IV fluids and meds to help her to stop vomiting.  As I was carrying her to the car-- she rolls her eyes back and tells me "she can't move her fingers and they were tight". I looked at them..... I panicked!  I yelled for my husband to come.....neither one of us could open her fingers, they were so contracted and very tightly closed in her palm of  her hands.  Then she opens her eyes and says in a panicked voice, "Mommy, it's happening to my feet and knees, too".  She begs for me to stop it from happening.   I had no idea what was going on...... I thought to myself, did she have a stroke on me?


I couldn't get to the emergency room fast enough.  She was in/out of consciousness in between throwing up on route to the ER.  Luckily, the staff was kind and let us go directly to a room without any wait.  The usual questions are asked, medications discussed and it was obvious I should have been here many hours ago.  Nurses had a difficult time starting a IV to administer  fluids and zofran for nausea.  On a good day, Hannah has bad veins and this is always challenging for nurses to start IV's.  Finally, after several attempts.... IV started to initiate blood draws and get some fluids in her. Rectal swabs needed to properly diagnosis what we now know was rotavirus. (Hannah didn't like this- but who would?)  Meanwhile, the doctor examined Hannah and asked me how I felt about sending her to Shands for hospital admission??  I assured her LRMC  will be able to give her fluids and she'll be fine.  Within an hour, the doctor shared with me that she was positive for Rotavirus and needs to be admitted.  By now.....Hannah is finally resting and the vomiting has slowed down. 

I was ok with rotavirus...but wanted answers  as to why did her hands and feet contract up so tightly?? This was something new  and I had never seen his happen to Hannah.  As more tests came back- it looked like her calcium was low and may have caused tetany. Neurologic symptoms can occur in severe cases of rotavirus which results of electrolyte imbalance (i.e., low calcium).   Hannah was given calcium, potassium in her IV as we wait for a bed available in pediatric unit.

As the doctor kept checking on her, she explained more about rotavirus to me.  It was then that I figured that Jake has it, too.  Jake hadn't been feeling well, abdominal cramps, throwing up after some meals and diarrhea. I totally contributed this to his new medications.  I had even researched more about Orencia and figured it was one of those lovely side effects. Jake had his first dose of Orencia about a week and 1/2 ago.  I NEVER thought he had any type of stomach bug or rotavirus.  The guilt kicks in.....and then I look back and feel bad that we walked all over capitol Hill with him complaining about his tummy, came home throwing up and sent him to school the next day. I knew if I kept him at home his teacher or school administration would think I kept him home because he was tired from trip. I find myself constantly evaluating and trying to put pieces together....... Why is it happening? What meds did we change? Is this part of JRA or something else?  This time I was absolutely wrong- had no idea Jake was sick and positive for rotavirus!

The norm to expect from rotavirus is fever and vomiting for 2-3 days, then diarrhea for the next 4-5 days. The virus typically lasts 10 days.  The common treatment is simply to replace fluids and electrolytes.    Dehydration is the biggest concern for the children  without any other medical issues.  For children like Jake and Hannah who have a immunodeficiency, it  may cause persistent infection lasting for weeks to months. This is exactly what Jake and Hannah's pediatrician shared with us-- it can take several weeks before kids are back to themselves, expect decreased appetite.  And what always comes with a common illness..... A JRA fare-up!   There is a rotavirus vaccine, but this is one of the many that Jake and Hannah can NOT have ever because of the medications they both take and because of immunodeficiency diseases. 

Hannah's favorite visitor- her brother, Jake!

Four days  later, Hannah was discharged from hospital.  Happy to return to home, but still not feeling the best! Jake returned to school, per doctor's advice.  We certainly hope we didn't share this virus with any friends at school or especially our JRA  family and friends.  These poor kids have such a suppressed immune system, not as easy to fight a common cold or flu or a virus like this one.  Nobody wants to have rotavirus, I am sure of that!

Hannah was happy to be headed home!

A Visual Reminder About "Aurthur"

Splints.....
The past two weeks Jake and Hannah have been asked repetitively, "why are you wearing splints"?  I think they have had mixed emotions about wearing their splints.  Initially, it was kinda cool and they could take it on and off, as desired.  But within a few days it became uncool to have splints and only a visual reminder about "Mr. Aurthur". They have talked about and rehearsed as to what they'll tell their friends.  I have done my best to encourage them to tell the truth--- "tell them you have arthritis and this splint is to help with my pain".  Many adults have even questioned me about why Jake and Hannah both are wearing splints with arthritis.  What people may not understand is that splints help keep joints in the correct position and relieve pain.  When Jake and Hannah's joint is becoming deformed (bent in the wrong position) or it is at risk for it, a splint may help position or stretch the joint gradually back to its normal position or try to keep it in a normal position. 

Hannah wearing her wrist splint & ring finger splints

Jake thought it was neat how his splint was costumed made

Jake sporting his day time splints.

 

Not as comfy as they look!

Night Splints

This month Jake and Hannah both got splints. Jake got 5 new splints, which include bilateral wrist splints for day time usage, and bilateral wrist splints for night usage and a left foot splint.  Hannah got a right wrist splint and ring splints for her two fingers on her right hand. 






Not sure how compliant kids have been wearing their splints as ordered by their rheumatologist.  Jake is now asking "can he wear just one splint at night or can he skip it tonight?"  Hannah has lost a ring splint from last week's dance class.  I have already heard the many excuses as to why they don't want to wear their splints.   Some of these complaints include: it's uncomfortable, sweaty, hot, can't write with them, can't drink with them, can't wash hands with them, the fastners get hooked on clothing, it hurts more.  The biggest complaint is the appearance of the splint generates many comments from people (friends and adults).
This makes Jake and Hannah  feel different from others! 

Another Attempt To Stop" Mr. Aurthur"

 The "Sloan Siblings" did it!  They both got their Remicade together at Shands on February 9th.  I have to admit, I was anxious about having Jake & Hannah both getting their IV's together and trying to figure out how to split myself in half and be there equally for both of them.  They both did great-- I even left them in the infusion room for a Wendy's french fry run. 

As Hannah begins her start of Remicade treatment today. We find out that Jake will be stopping Remicade after today and moving on to another treatment option.   Trying to be hopeful that Remicade will be successful for Hannah without side effects.  Dr. M tried to encourage me to try not to compare Jake and Hannah and be hopeful  for Hannah's treatment.  Jake has failed two out of the three Biologic medications (Enbrel and Remicade).  So the next step is Orencia (abatacept). Orencia is saved to use with patient's who fail TNF medications.  Orencia  has not been on the market for very long and has limited effects of the medication available.  And what I do know from other children's experiences- it SCARES me!  Orencia is not a TNF blocker as Enbrel, Remicade and Humira is. It is a T-cell co-stimulation modulator ( T cells play a prominent role in inflammation).  It blocks the signal in the blood that is necessary for T-cells to do their damage.  I'm not thrilled about putting Jake on Orencia but we don't have many options.  The good news is that Jake can stop taking Enbrel shots and Orencia is a much faster IV medication. He is happy to have 3 less shots a week. He'd like to get rid of Methotrexate shot- but no luck with that! We'll still have to make the drive to Shands for infusions- but less time in the infusion room for Jake. 

Jake's quite as he awaits for the day to finish!

Overall, Jake has not made any improvement and has immune system is simply not fighting any simple infections. His SED Rate has doubled in the past 4 weeks and his joints are inflamed and hot head to toes!    We are discontinuing  Jake's Clinoril because of increased abdominal pain. We will add Celebrex (100mg -2x daily) and Prevacid (30mg-1x daily). Jake currently gets physical therapy, occupational therapy and aquatics each once a week.  He has got 5 new splints in the past month ( left foot splint, bilateral wrist splints).   We have invested a TENS unit and para-fan wax machine for home use. He continues to do his best to go to school most everyday- but that is about it for the day. Fevers are getting common for Jake in the late afternoon and evenings.  We struggle to keep up with homework, studying, therapy, and doing the basics that need to be done.  It doesn't help that Jake is getting sick often and then always seems to get a post-sinus infections. Dr. M also discussed that Jake and Hannah are also hypermobile.   She emphasized the concern of them both doing too much at school (carrying backpacks, playground- free time, PE class) and then having increased joint pain later in the day.  Because Jake and Hannah have excessive joint laxity it can easily lead to wear and tear to the joint surfaces and strains or fatigues the soft tissue surrounding these joints.   We are trying to focus on a lifestyle modification, altering our exercise regimen, protecting our joints better and proper body mechanics.  Dr. M is working on a letter for LCS to explain their JRA a bit more and some other considerations for Jake and Hannah to be more successful at school.  As always......things never stay the same with battling an auto immune disease.  So back at the Swamp in 2 weeks for Jake's first Orencia infusion. 

So......I had one child receiving his last Remicade infusion while my other child gets her first Remicade infusion.  Staying hopeful and positive that Remicade will be successful for Hannah.
Hannah was a big girl and luckily didn't have any infusion reactions today!  She did have big tears as the nurses tried to get her IV's started - but after a few minutes she was fine.  A very nice lady  in the infusion room came over to talk with Hannah( while I helped Jake get his other IV pre-med's) and got her mind re-directed.  She was a bit mad at me for a few minutes, even put her blanket over her head. She simply didn't want her IV and I don't blame her! This is not the way a 6 and 8 year old should spend their days!  Within a few minutes of adjusting - she came out from under her blanket and was fine!  It helped having our friend (Gavin) and his mom there next to us!  Gavin even made us laugh. He says to Hannah, " where is your boyfriend, Hannah".  {Gavin was talking about Jake} Love it when kids say the funniest things and we needed a good laugh! Thanks, Gavin!

Hannah also got the good news of stopping her Enbrel shot, too.  Yes-- that is 6 less shots in the Sloan house a week!! Yea--  we are all very happy about that!  Not happy that Enbrel failed, but happy to stop  Jake & Hannah's Enbrel shots.  Dr. M was not pleased with Hannah's swelling and limited range of motion in her hands (wrists, fingers) and noticed a lot of fluid in her right knee and heard clicking in her jaw.   Hannah's worse complaints are always her TUMMY, knees, hands, and NECK!  Hannah is also in physical therapy, occupational therapy and aquatics each once a week.  She  wears a splint for her right wrist and has ring splints for her fingers.  We are hoping that Remicade does it's job to help Hannah feel better not only in her joints but also her "TUMMY".   We are pleased to rule out Crohn's (for now) but am frustrated to not understand exactly what is causing Hannah significant abdominal pain.  Hannah's GI doctor just put her on Levsin (125mg) to help with tummy pain.  So Hannah will also be returning to the Swamp in 2 weeks for her next Remicade infusion.  I was told if Hannah fails Remicade- the next step is Anakinra (Kineret).  I do NOT want this for Hannah-- DAILY shots that HURT!

Jake & Hannah did it! Now if these medications would just help my children to simply feel better!

We will continue to do our best and do everything we know what to do and pray for good outcomes as Jake and Hannah both start a new treatment in battling their JRA.  A special thank you to my parents and those friends who have been a support for Bobby and I.  I trust God will touch Jake and Hannah one day and this will be just a chapter in their lives! 

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.  ugh...it 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 explain.....so 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 side....as 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):
Remicade
Solumedrol
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!

Preparations....

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. 

Overall..no 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."

www.drugs.com/pro/remicade.html 
More information about Remicade for those of you who are not familiar with it.

From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it.

Our family had the pleasure to join Camp Boggy Creek's holiday party in December. It was here that I read something that I can totally appreciate and it sums everything up. "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it." That is how I feel when a friend or family member or school personnel says, "but they look so healthy and are so happy". I find it very hard to explain to someone what JRA is and how it is more than just achy joints! A friend recently asked, "what does Hannah's liver have to do with her arthritis"? I'm getting a bit drained and almost don't have the energy to explain....

Another day in the swamp for Jake on December 14th. Hoping to get another dose of Remicade/Solumedrol to get him feeling good for the holidays. Jake's rheumatologist took the extra time to talk with Jake today. Jake told her on his own that he hurts all over and wants it to go away. Dr. E looks at Jake's joints,hears his jaw and neck popping and listens to mom about his recent chest pains, increased joint pain and CRANKINESS! I didn't have to explain to Dr. E about Jake being miserable-- he was indeed miserable today at Shands. Dr. E even told him to "be nice to his mom, it's not mom's fault and that your mom is trying really hard to help you". So today's game plan was to increase Jake's Remicade and to schedule his next Remicade IV in 3 weeks rather than 4 weeks. Today we also added another pain med (toradol - he got as an infusion). We also got a prescription for Tylenol 3 with codeine (prn)to use on Jake's bad, bad days. . To top it off- we added his Enbrel injections back! I didn't even know you could take Enbrel and Remicade at the same time! Jake was not thrilled to hear he's back to 4 shots a week and continue his Remicade infusions. At this point-- whatever it takes to get him feeling better- I'm willing to try!
But O My.....how much more medications can a little guy take?

Since our experience with the TMJ Doctor was not a positive one-- we will be exploring another TMJ specialist who can do the steroid injections into the TMJ joint for Jake. Jake's jaws are getting bad again- clicking, popping, shifting and locking! There are some days...Jake warns me, "mom, I'm not going to be eating today because my jaw won't open". It breaks my heart to watch Jake grab his jaw and scream "ouch" as it locks on him with no warning!

Jake's recent chest pains are from his costochondritis. The poor kid has no break where his arthritis has affected him! Not as common- but yes Jake has inflammation and severe sharp pain in the costosternal joint. People describe the pain that mimics of a heart attack. He also takes clinoril twice daily which is suppose to help especially with spine inflammation. These are a few of the things people can not see from the outside looking in. So when Jake and Hannah's PE coach didn't want to follow 504 plan-- and Jake comes home talking about significant chest pain and he had to run to play game with friends........ Again, from the inside looking out-- how can I explain it so he understands??? Does he really want to hear that his toes look like sausages? His ribs are so swollen it is causing him severe chest pain? His wrists are so bad that he can't unzip his own pants some days? And he selects which foods he eats because his jaw may be locked during lunch? Or he may have stomach cramps and nausea due to his medications? And he has no appetite and, tired and feels like vomiting because he took his methotrexate (chemo) 2 days ago? Meanwhile- Jake attends school everyday despite how he feels, or how long it takes him to walk without bending over like a old man. He manages to maintain his grades (most all A's) despite how much pain he is in or days he has to miss school because of doctor/medical appointments, infusions. And if anyone asks," How are you Jake? " The answer is fine. My kids have learned already in life- very few people really wants to know how you are feeling, and they most likely don't understand, so why share!!


Hannah...... we awaited to hear from her doctor regarding her abdominal ultrasounds that were done in November. We weren't surprised- her liver, spleen and lymph nodes are enlarged. We did the next step and saw a pediatric GI MD. It was way past due- but as a mom-- I was not wanting to put Hannah through the "work up" at such a young age. We tried no fruits/veggies diet with high fiber foods and a very high dosage of Prevacid for a few weeks- no positive results. Hannah continues to complain a lot about her tummy, and has awoken many nights crying with severe abdominal pain. Next week- Hannah will have the pleasure to have a EGD (upper endoscopy with biopsy) and colonoscopy. I'm not looking forward to a two day prep with a 6 year old. How will I ever convince her to drink magnesium citrate and no foods for 2 days prior to procedure? Won't dulcolax and enema's be fun for her.... Do I even attempt to explain procedure to her or just hope the anesthesia does its job? The GI doctor was outstanding, and truly put me at ease. He believes Hannah has crohn's disease, but none the less systemic JRA affects the organs as well. Dr. K explained that if it is just her systemic JRA or if it is crohn's disease-- the treatment is the same. REMICADE -A drug that we are all too familiar with! Hannah's rheumatologist had just talked to us about starting Remicade or maybe Anakinra (depending upon her eye status and GI results). Not sure what to expect from the colonoscopy and EGD. I have accepted that Hannah will have to start Remicade, too. Trying to keep an open and positive mind- praying for the best of what can be possible! We will wait and see what is next for Hannah in her JRA journey!

Am so thankful for Camp Boggy Creek and my parents (and their home in TN). These are two places where Jake and Hannah can forget about what they have and be a kid! Camp Boggy Creek is a special place-- Thank you Camp Boggy Creek and donors for building dreams for Jake and Hannah and many others with chronic illnesses. I have a hard time explaining to others what a piece of our life is like on a daily basis- but friends at camp Boggy get it without saying a word! Again, "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it".

An overwhelmed Mom..... treatment changes times 2

Fall is for fun festivities not fallbacks...... Trying to make things easier on me, decided to have Jake and Hannah's Rheumatologist appointments at Shands on the same day. Not sure if that was easier on me or not.....my head is just now stopping to spin!

Many of us living each day with a chronically ill child have days or weeks that are overwhelming. This was my week to be on overload! While Jake is hooked up to the Iv pole- getting his solumedrol and zofran- I try to explain Jake & Hannah's past 30 days to Dr. Elder and her nurses. 30 days- that shouldn't be difficult. Meanwhile, Jake and Hannah had special surprise visitors. Their family pals from Camp Boggy Creek came to visit Jake and Hannah in the infusion room. Positive distractions are always nice, but today Jake was in no mood for visitors. He was mad to be hooked up to IV's and not down on the floor playing board games with his pal, Roj.

So after Dr. Elder gathers info, reviews current labs and examines Jake from head to toe, she shares that his aggressive Enbrel/Methotrexate/Solumedrol/clinoril treatment was not affective. We have reached the point to move on and try another biologic agent- Remicade. Thoughts are racing through my head....knowing long term health effects are unknown, the increased risk of cancers, and the toll it will take on Jake's immune system. Besides a miracle and healing from God, we don't have any other better options to help Jake to feel better and try to get this disease under control. He has active joint pain/arthritis literally in every joint in his body (even between his ribs, jaws and his toes). On the positive note, Jake was pleased to know that he will have 3 less shots a week (Enbrel) once he starts Remicade infusions.

Dr. Elder moves onto kid #2- Hannah. She is impressed with a photo of a recent rash, notices swelling on several joints, swollen lymph nodes, sensitive jaw and tummy. She is mostly concerned about Hannah's eyes and the status of her internal organs. Hannah has always had a history of increased joint pain leads to severe abdominal pain. Hannah has been awakening at night, screaming crying about tummy pain. Dr. Elder discusses the need to consider changing Hannah's medications too. Choices include Anakinra (kineret) or Remicade. Both of these are more effective treating systemic JRA. So we decided to wait until next eye appointment ( Hannah currently being treated with Alrex steroid drops and is seen every 2 weeks by ophthalmologist) and have abdominal ultrasound. Meanwhile, we increased Hannah's Enbrel to 75mg a week (3 shots a week) and discontinue Mobic and add Celebrex 100-200 mg daily. Discussed doing a MRI of her jaw, but will wait until she shows signs of difficulty eating or weight loss.

As Jake finishes his infusions, I sit next to him and think about all the things that need to happen within the next few days. I very quickly became overwhelmed! Jake is moving onto Remicade, I start Rituxan myself tomorrow and Hannah increases Enbrel and starts Celebrex as we wait for more answers on her eyes and abdominal issues. Not sure if it is wise to have Jake and Hannah appointments together on the same day. Another day in the swamp...... a treat to see Grace and Raj, our Boggy Creek friends!