Decisions...Decisions....And More Decisions

I don't know if any one of us parents were actually prepared to make so many decisions for our children. We are all faced with making tough decisions that affect our children, not only immediately but years to come, too.  Raising two young children both living with chronic illness puts Bobby and I in a position we are constantly making HUGE decisions for our children.  We take our challenges to God and I most always follow my heart, but sometimes I am lost as to what to try  next! Why can't I just take all this crap away from my precious kids and live life??

Today was one of those days where I just wanted to cry! Hannah describes her day as "her worse day ever." It wasn't her worse, but not a easy day for her when she woke up feeling horrible and it only got worse. It wasn't  fun holding down a screaming, crying, kicking 7 year old with the help of 4 medical staff as we try and try and try to get a IV line started to pump these NASTY drugs in her body which are NOT helping controlling her disease.  It tears at your heart when your child is screaming for help and begging "MOMMY, please help me, get me out of here and don't let them hurt me".  I tried to hold back my tears as our favorite nurses do everything they can to get a IV started! Finally after 3 attempts-- We got it!  Hannah was MAD at everyone, including her own Mom! She was upset, and simply not wanting to be at Shands today. She  took awhile to calm down and accept she was hooked up to a pole, next to her brother who was also hooked up to a IV and we could NOT leave until all meds were finished! Thank goodness a young college volunteer was brave enough to sit with Hannah and watch a movie together!

No Chemo shortage for Jake!

Dr. M made her rounds to the Sloan Siblings. Jake was disappointed- he was hoping that his mouth sores and national shortage of Methotrexate would maybe give him a break and he can stop it for a bit! He woke up today and said, "yes, I have 4 mouth sores and the doctor can see for themselves that I can't take Methotrexate anymore". I didn't dare tell him that there wasn't a chance he'd be taken off the chemo drug that causes so many issues but possibly helps the disease???  Six infusions of the new and only approved drug (Actemra) for Systemic JRA and we are not seeing the results expected. In two weeks- we'll be increasing the dosage and hope to see better results! Joint injections were discussed again today.  Shands new Pediatric Rheumatologist does the joint injections at clinic but with no sedation.  How do I convince Jake that injecting wrists is a cool thing and this will work! I got so lost in the conversation today, I may heard injecting ankles, too? I knew his ankles were one of the hot spots, but she said they are becoming just like his wrists!! LOVELY---  flexion is limited! (My boy needs to be able to pull that trigger on his shot gun and run home with his turkey on his back! LOL)  He has figured it out.......NOTHING has worked so far! Jake has almost stopped talking about his daily pain and the hopes of a new drug working! I am actually proud of him- he has accepted a lot for such a young man! Good news- Dr. M believes she found a oral facial surgeon in Orlando area who can inject Jake's jaws.  We have been searching and searching for someone in Fl for atleast a year! Jaws are a big concern and Dr. wants to do a MRI of jaws and inject the jaws. I say that is good news...... not really but what is good about all of this?? Thank goodness we didn't discuss GI issues today. I don't think I am up to scoping Jake just yet! It has been mentioned, but he has had fewer episodes of throwing up and diarrhea  in the past month!

Hannah's biggest complaint is her neck.  What do you do for a neck? Yes- therapy would be lovely non-pharmaceutical start but insurance only approves 60 days of therapy.  Didn't you know that PT and OT can provide therapy and 60 days magic happens for our JRA kids! NOT!!!! So frustrating--- and  Shands has requested for additional visits, DENIED!!  Md is scheduling Hannah for a MRI of her neck with sedation.  During this sedation period- we're going to coordinate joint injections in Hannah's wrists. She has already warned me, "nobody is touching my wrists again with a needle".  Hannah needs some relief in her fingers and wrists, so we made the decision to try another approach directly into the troubled wrist joints. So we'll be taking a closer look at her neck, injecting her wrists and increasing Actemra. 

The day has come.....we are making the decision of  inserting a foreign titanium object into my kids body which may cause infections and at risk for much more while giving them a break of needle pokes and re-pokes at least every 14 days!  Adults that have had ports quickly say, "Yes, do it".  But for our children it is much more complicated.  This journey does not have an expiration date, we won't hear the bell ring after 6-12 months of treatment. There won't be a celebration party , ports removed and a thing of the past!   If we choose to have a port surgically implanted under their skin directly into their central veins, it will be for the long haul. Which also means Jake & Hannah will outgrow their port and need it removed and another one replaced so it won't get displaced and cut off circulation in affected tissue.  It can be dangerous due to high risk of infections and even blood clots can be common problem.  It breaks my heart to make the decision for Jake & Hannah: No contact sports, no rough playing, no blows whatsoever to the chest area! I am once again taking away and robbing my kids from a childhood they so deserve, too!  Then the nurse quickly reminded me, no 4-wheeling for Jake.  I said, "what, he isn't going to stay off his 4-wheeler". Purchasing a chest protector is a option for Jake to wear. Yes- won't he be thrilled to hear mom remind him, "put your knee splints on, wrist splints and your chest protector".  I can almost feel in my heart its the right thing to do for Hannah, but then how do I justify for Jake?  I was told if they get any fevers then they must be taken to hospital and blood cultures drawn as the basic protocol.  I laughed......Jake gets fevers several evenings a week as it is right now!  Where's my magic wand? I do take all my worries and concerns and needs to God, but it still is not a easy decision!!

On a positive note, I followed my heart and am thrilled to have Jake & Hannah attend Sloan Siblings Academy.  (Also known as, Hospital Homebound program.) Kids are thrilled to be home schooled and love it!! Homeschooling isn't for everyone , but it seems to be exactly what we needed this year! I'll blog soon and share my zillion reasons why I love homeschooling my children.

Our new stomping grounds.....

A day at the Sloan Siblings Academy.

And......our most exciting news!!!! We have decided to fulfill our family's dream.  We will be moving to Sparta, TN and raising our children in the country! If you know me well, or my husband and children, we all love the outdoors, animals and TN.  Our dream is going to come true...... Next month, we'll spend some time getting to know our new 33 acres and getting antiquated to Sparta before we move. Had hoped to meet our future  Rheumatologist  and be able to get infusions up there over the Thanksgiving break. Not sure if that can happen- insurance dictates so much!! ugh .... Every 14 days for infusions fly by quickly- we may have to settle for Enbrel shots while we are in TN. But the thought of adding another imuno-suppressant on top of another..... Yikes!  We won't be moving anytime real soon, but we made the decision to be closer to Grandparents and live in the country!  I look forward to sharing TN  story's  with you oneday....... I hope the good, clean country air will wash Mr. Aurthur out of my children's bodies and all these drugs are not necessary to survive! We are really excited to make a change and focus on some new interests. Bobby is looking forward to spending time with his family and being a retiree!

Hannah was wiped out, a long day!

Our family & friends who have been there for us, THANK YOU! This disease is invisible and very difficult to explain to others so you can even begin to understand a piece of our everyday life.  But those of you who have loved my children and prayed for our family, thank you & please don't stop the prayers! The Sloan Siblings journey isn't over, there has not been a bell heard and they will most likely never hear that bell ring! So we will always count on your support and prayers to get us through each day! And today was a long day!

Jake is just a grinning....focusing on TN!

The Sloan Sibling's Summer Buzz

   

Jake & Hannah at Camp Boggy Creek

We started our summer off by celebrating Hannah's 7th birthday.  By her turning 7 meant that she was eligible to be a camper at Camp Boggy Creek.  Needless to say- Hannah's bags were packed and she was ready for a week at Camp Boggy.  Walking away from Jake and Hannah at camp in the care of complete strangers was one of the hardest things I have done.  Even the best of the best nurses and Ped. Rheumatologists at camp, it was not ME! Neither of the kids had been feeling well days prior to camp, so naturally I was worried.  I reminded myself everyday that Camp Boggy Creek was designed  for chronically ill children and  to provide a experience for the kids to forget what they have and simply be a kid. I wanted that more than anything- so I survived a week without Jake and Hannah.   I was anxious to pick up my darlings and they were WORN OUT, but had the time of their lives! They can't wait to do it again next summer and hope our entire family will be back in September for Family JA Weekend.
 
  

Hannah & Jake both getting 1st dose of Actemra

In between camp and a week at the beach, Jake and Hannah started their  first treatment of Actemra- the first biologic approved for systemic JA.   It is always stressful switching medications and wondering if this is the right decision.  It's easy to feel discouraged, but we strive to remain positive and hope Actemra is the medication to help Jake and Hannah fight this battle!   Following infusion day, we repacked our bags and flew out to Washington DC for the annual JA Conference.  The Florida Chapter Arthritis Foundation had sent 12 families to this conference.  It is always such an amazing experience to be surrounded by 1,000+ people who all "get it". I spent several days listening carefully to presenters from across the US to share the very latest in treatments of JRA, sharing my story with others, and consulting with a few of the best pediatric rheumatologists in the country.  I feel assured that we are doing everything we can to help Jake and Hannah slow down the progression of this disease.  I like to know what's ahead and be prepared for the next steps.   I am concerned and scared that there is NOT anything past Actemra.  Our option will be to be part of a clinical study.  (I'm not sure how I feel about letting my children being the ones to test it out..... We'll cross that bridge when we get there.)
 
Even more reasons why we all need to speak to our local Congressman and let them know arthritis is not ok! We can't possibly accept that it's ok to cut research dollars which will result in  fewer opportunities for new biologic medications. I don't want to let go of my dream....FINDING A CURE for ARTHRITIS!  Spending those few days in Washington DC was the BEST! Jake and Hannah were able to reconnect with JRA buddies and be assured that are not alone with living with JRA.  Hannah asked me almost everyday, Mommy, why are our JRA friends like our best friends?"

Family Night at JA Conference in Washington DC

 

 

 

 

 

 

Jake and Hannah's favorite part of summer was spending a month with Grandma and Grandpa in TN.  I don't know if it was the 4-wheelers, good country air or the love from Grandparents, but I almost began to wonder why we are going to Shands every 14 days for infusions??  Jake did amazing in TN and it really gave us  hope that Actemra may just be what he needed for some much needed relief! Hannah did not feel as well as Jake, but being pampered from Mommy and Grandma wasn't so bad either! 


I feel like we just got home and summer is over. Our family is ready to begin our newest adventure--- Homeschooling. For MANY reasons, we have decided to try something new in hopes it will be better for Jake and Hannah.  They are both super excited and don't have any reservations about missing happenings at LCS. The flexibility and being able to work around medical appointments, infusions (every 14 days),  flare up's and illnesses is just one of the advantages of homeschooling.  We are beyond fortunate to have been placed with the most amazing Hospital Homebound teacher, Miss Nancy.  I will NEVER have to explain anything, she has lived with arthritis as a young child herself and battled the disease as well as lymphoma several times.  She understands being nauseous a few days after Methotrexate shots, and the hyper moods after bursts of steroids,  the lack of concentration during a flare and the sudden fevers and quick illness onsets.   I am looking forward to this new Homeschool adventure and praying Jake and Hannah will benefit from the Hospital Homebound program.

The Sloan Siblings Raising their Hands Against Arthritis!

New Drug & New HOPE for the Sloan Siblings

  Finally.... the day has come where FDA has approved the first therapy for children with Systemic Juvenile Rheumatoid Arthritis.  April 20, 2011, The U.S. Food and Drug Administration  has approved the NEW biologic drug- Actemra or tocilizumab.   Actemra's approval for this drug comes after a study of  only 112 Systemic JRA children between ages 2 and 17. Eighty five percent of those children  who got Actemra had at least 30 percent improvement. It may not sound too exciting, but as a parent who now has TWO children who have Systemic JRA-- It is better news to know there is possibly HOPE!

I often struggle with to share or not to share our JRA journey.  I'd like to put make up on, get dolled up and walk out the door like "Life is Good".  But for the Sloan family that is far from the truth. Although, Jake and Hannah may look  great and may certainly not act sick........ Let me say simply..we have MANY stories behind those smiles!  The stories are what I choose to keep personal for the most part.  Do you really want to know my husband came home this week , unable to talk and was gagging until he threw up. Yes- the news that our son, Jake , is also SYSTEMIC just like our daughter, Hannah.  And that we are now going to TRY another NEW drug that only 112 children tried! 

Trying to get excited about the opportunity for  Jake and Hannah to both get their first Actemra infusion on July 5, 2011. Actemra is the first drug to block the inflammatory cytokine IL-6 or interleukin-6, which also plays a key role in driving the inflammatory process. It is administered as an infusion- every 14 days and preferably in combination with Methotrexate.  Jake is currently taking Methotrexate , but we choose to discontinue it for Hannah about 2 years ago. ( Hannah was unable to tolerate it regardless of how much we lowered the dosages, added leucouorin and Zofran, ect....)  So the thought of Hannah & Jake both on MTX ...  let's just say it literally makes me sick!  Side affects of Actemra appear to be very similar with the current Biologic's that Jake and Hannah have been taking ( Enbrel, Remicade, Oriencia). I guess we can deal with extra colds, upper respiratory infections, headaches, sore throat, congestion, and diarrhea.  But what I  HOPE does not occur is the potentially deadly condition known as MAS (macrophage Activation Syndrome).  MAS is a complication of systemic inflammatory disorders in children like Jake & Hannah that involves overactive immune cells  and can lead to "trouble" very quickly! This is always my fear when Hannah gets sick, and now my new worries for Jake. MAS worries me more than the increased cancer risks! Always HOPING & PRAYING for the BEST as we make decisions for Jake & Hannah! 


Monday- I am sending Jake & Hannah to Camp Boggy for 6 days in hopes they will have the opportunity to "forget what they have and feel normal."  They are so excited to go away and be surrounded by kids who all understand and can relate to life- the Sloan Siblings Life! I trust the staff and medical volunteers to take care of my children and all the others who also suffer from JRA.  When they return-- we will take the next step at the Swamp and start our initial Actemra infusion. With HOPE this new drug may be answers to some relief for Jake & Hannah. Then we will re pack our bags to fly out to Washington DC for the JA Conference.

 

Hannah & Jake

Bobby and I are holding on to HOPE that Actemra may help Jake & Hannah.  We appreciate those families and individuals who are continually praying for our children and family.

Sloan Siblings Stomping Out JRA!

 Sloan Siblings 2011 Team

The past few months were long, busy days as we prepared for Lakeland's arthritis walk.  But as May 7 came-- it was worth every effort we each put into the 2011 "Let's Move Together Arthritis Walk".  I am so proud of Jake & Hannah for helping to recruit friends from school, church, dance classes and family.  The Sloan Siblings team was the largest team and raised over $7,000.  A special Thanks to Law Offices of Burnetti, P.A. and The Sports Section for sponsoring Jake and Hannah and providing all our team walkers with shirts.  It was incredible to look around and see all the yellow shirts supporting the "Sloan Siblings". It was one of Jake and Hannah's best days! Our family was humbled at the support that was given to Jake and Hannah.

Arthritis has not only affected our family, but has also affected 46 million Americans, including 300,000 children. Arthritis is the #1 leading cause of disability in the USA.   Did you know that 1 in 3 Floridians are living with at least 1 of the 100 types of arthritis, and it is life-threatening in many cases?  The generous donations made by family and friends will be used to help further the mission of the Arthritis Foundation which is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.  Eighty three percent of every dollar goes directly into research.  Without the support from family and friends- we would not be able to hold on to hope that better treatment options will be available for adults and children suffering from arthritis and related auto-immune diseases.

It was my pleasure to serve as Lakeland's walk chair and work under the leadership of Tony Ward- Community Development Director of Central Florida. I am most proud of our Lakeland walk committee. Each and every person contributed in some way or another. It is difficult to do the extra things when we are struggling to take care of ourselves or children who have chronic health conditions as well. But the Lakeland walk committee did it!! We pulled together and it was the BEST walk ever!! Each committee member  touched my heart and with their support made 2011 Arthritis Walk successful in Lakeland, Fl.

Family Connections wth JRA? No- I didn't know I'd be raising two children with JRA!

 

1.2% chance siblings can both have JRA!

This is going to be one of those blogs that I am actually venting and sharing a few facts I was able to put my hands on recently. For those of you who know me personally, I am not a chronic complainer and try my best to stay positive.  Everyday is a struggle in some way or another raising two kids with chronic disease like Juvenile Rheumatoid Arthritis (JRA)  and living with it myself.   But when somebody asks me "why did you have children knowing they'd have JRA" or "ohh..so it's a genetic disease and runs in the family". It really bothers me and hard to let go of those ignorant comments.  So this blog is just for me to be able to type out the facts I found and to justify I did not have children knowing my kids would have JRA.

Sloan Siblings both living with JRA!

When I meet someone new who learns Jake and Hannah both have Juvenile Rheumatoid Arthtritis. I expect the typical response, "didn't know kids can get arthritis" and "but they look so healthy".  Now that Jake and Hannah both wear splints everyday- there is  a visual cue for others that something is there?? Seems like we are explaining  more and more to strangers everyday that Jake & Hannah both have JRA.  Many people ask if anyone else in the family has arthritis, too?  I cringe and casually say "yes".  Several people have gone the next step and asked who in the family, so I have to share my mom and myself.  Then.... these same people automatically assume JRA is a genetic disease and it was a given my kids would have JRA.  This really upsets me....... NEVER in my life did I dream I'd be raising two kids both with JRA (Polyarticular and Systemic JRA).  It wasn't a choice Jake and Hannah had and it certainly wasn't a great risk of me having children with JRA. I have accepted it was simply God's plan for me.... Why? I don't understand that yet- but trust it was His plan despite what my chances were of having two children with JRA.

Here's what I found in a recent article from Kids Get Arthritis, Too,Volume 10,  2010 issue.  An article Linda Brown wrote on JRA: All in the Family?  We already know that there is 300,000 children with JRA.  That is one in 1,000 children under the age 16 has JRA.  A new study was done by Dr. Prahalad showed that there is a 1.2 percent greater risk of a sibling getting JRA  (when there is already one child in family with JRA).  "So there is a 98 percent chance that the family would  NOT have another child with arthritis."    As for our family, Hannah wasn't diagnosed until she was 2 1/2 years old and she was our second child.  NOBODY wanted to believe me that Jake had arthritis, too!  Yes -I was told..."No, you can't have two kids with JRA".  Well, maybe Bobby and I should have played the lottery because we have two kids with JRA.  We were not fortunate to fit  into the 98 percent who would not have another child with any type of arthritis.  
First Cousins..... Dr. Prahalad found the risk drops to six times greater than the general population.       (That would be about 1/2 percent chance that 2 first cousins would have JRA).  I'd like to say this should not be of any concern for parents and adults who are considering having children with auto-immune diseases like arthritis in their immediate family. But we are living proof- it can happen and did happen to The Sloan Family! Many parents who have a child with JRA ask me what I think about them having another child and they worry will they have another child with JRA?  Here is what researchers know as of today-- 98 percent chance that you won't have another child with arthritis! All I can say is thank goodness Bobby and I got my girl and we stopped at 2 children!! Don't think we could afford any more medical costs and mental status of me would be a scary thought!

Jake & Hannah both getting infusions at Shands Hospital.

Something we all have shared together.... SHOTS!

The article also shared that if you were found to be one of the few siblings to have JRA- that the age they develop the disease tends to be similar.  He also found if you have two siblings in a family with JRA, they more often have the same subtype of arthritis than different kinds.  I can't stand the thought that Jake complained & complained as a young child about joints hurting, asked to pray for his achy joints EVERY night and thought he hurt like his Grandpa and sister for a very, very, very long time! So I can't really say what age it all started for Jake? His diagnosis was delayed...... maybe this is why we are having a hard time controlling the disease?? EARLY AGGRESSIVE TREATMENT is the way to treat this monster disease! Unfortunately, Jake didn't have that chance because NOBODY wanted to believe me and him that he was hurting and really did have arthritis like his baby sister, mom and Grandma!



One of the things that bother me the most is..... will Jake and Hannah be able to have a family themselves due to all these many years of heavy drugs that I choose to give them and will their kids also inherit JRA??   There has not been any studies on JRA kids having children of their own inheriting  JRA.  At this point researchers know more of sibling pairs than parent-child pairs with JRA.  Like I said, I should of played the lottery! What were my chances of me having JRA just like my mom and then having a child with JRA, then another child with JRA??  So for those people who are inconsiderate..... I did not choose to have a family knowing they'd have JRA! 

This is why I am committed  to the Arthritis Foundation and support research. I want to have grandchildren one day and don't want them to have the same life that Jake and Hannah are living everyday!  We need to find a cure and better medications for these  precious children!
  Arthritis is the #1 Disability in our country and is simply Not acceptable!!

The Sloan Siblings and family visit capitol Hill to share our JRA Journey.

Our family had the opportunity to visit Washington D.C. to meet with members of our Congress to share our JRA journey.  For those of you that know me- it shouldn't surprise you to hear that  the Sloan Family is raising our hands & voices against arthritis.  It was amazing to be surrounded by 312 people representing 47 states , including 80 children who all believed the same thing!                       Arthritis is unacceptable!  

Our first afternoon in D.C. consisted of our family participating in a home town radio interview. Bobby seldom has the chance to be with us and participate in arthritis events- so he shared how arthritis impacts his life and his family's life.   We also attended a new advocate training session that covered information about political and legislative processes. Jake and Hannah attended kid's group where they learned about government and how to advocate for themselves.  Lots of information to take back to the hotel room and prepare for our U.S. Senate appointments the next afternoon.

The "Sloan Siblings" ready to share their story!

Bright and early we begin our second day with Chrsitophrer Kush of Soapbox Consulting, leading an interactive training session to help us conduct successful meetings with our Senators, Representatives and their staff.  Within a few hours, we were ready to take the metro (subway) to Capitol Hill to share our story.  Our first appointment was with Senator Bill Nelson with his legislative correspondent, Gene Schlesinger.  It was great to have the opportunity to share our story and to tell them publicly what we need!  I wasn't able to hold back the tears. It was a lot harder to share our story than I thought it would be! Gene listened closely as our family expressed concerns about pain, disability and cost of arthritis is unacceptable!I shared our personal story as I have had JRA since 3 years old and then to raise both of our children with JRA is beyond difficult.  Bobby was there by my side when I couldn't choke out any more words- he moved on the business side of the meeting asking for just a few simple things from our government. Overall it went well and I am confident that Gene learned something about JRA today.


Our second appointment was with Senator Marco Rubio with Sally Canfield, the legislative director.  She was such a delightful lady!  Jake and Hannah both talked with her as she asked them many questions about living with JRA.  Jake told her that friends make fun of him for wearing his splints and that he hates having arthritis. We kindly asked for consideration of the following:
1) Join the Congressional arthritis caucus
2) Make arthritis a national priority and send President Obama a letter
3) Continue to fund  arthritis research through the NIH
4) Put arthritis on the list of diseases researched through the Congressional directed medical research program.

Another busy day ahead for the Sloan Family on Capitol Hill. We had three appointments with House of Representatives, Rep. C.W. Young, Rep. Dennis Ross and Rep. Ted Deutch.   Unfortunately, Jake woke up today not feeling well.  It was a long busy day of walking the halls on capitol Hill, but we continued to do so and had another day of successful meetings.   Jake and Hannah did amazing, too! I was so proud of Jake for speaking out and telling Congress exactly how he feels.  At one meeting- someone said, "it must be hard to have days when you don't feel well'. Jake replied, "I don't remember when I had a good day". 

The Sloan Family with Rep. Dennis Ross.

We get back on the plane and have a few quite moments to reflect our trip to Washington D.C.  I would do it again and again and again! Our government officials that we elect are going to continue to hear from The Sloan Family.  My children are counting on me to be their voice and attempt to find better medications and most of all to continue research to find a cure.   Thank you Arthritis Foundation for trusting our family to be the voices from Florida and the 50 million Americans who suffer from Arthritis everyday of their lives!


I encourage you to become an Advocate, if you are not already an advocate through the Arthritis Foundation.  Wouldn't it be nice to be able to take a pill form of a biologic drug?  We need our government to continue to fund research through NIH and help us get a few steps closer to this new biologic pill, rather than infusions and shots.  I need to know is there really a genetic link with arthritis? Most importantly, how can we prevent Jake and Hannah's children from also having JRA? Why do 12 of our states not have any pediatric rheumatologists to treat children with JRA? Arthritis is unacceptable to me and we need the government to make arthritis a national priority, too!

President Jake Sloan

Future First lady..Maybe??

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!