Quick Update

We went for Parker's infusion yesterday and, of course, with the week we had, the doc came in to see him.  His Actemra infusion was increased.  He was also given additional pain meds in IV and his regular push of steroids and his benedryl, chemo, zofran (for nausea), and acetaminophen.  His pain is out of control....we are changing his daily pain meds in hopes to get better control.  He is starting 2 different patches with pain meds in them.  His joints are less swollen but still in pain and warm to the touch.  Lymphs have been swelling too.  The crackling in his joints is to be expected and the doc called it crepping (I have to look that one up). 

The doc also ordered another round of double antibiotics because his H-pylori is still active.  Hopefully this next round will do the trick.  Otherwise we will be going to the gastro doc next for a scope.  She is hoping this is just a "blip" and we will see the Actemra continue to work.  If it doesn't, then we are in for weekly visits with alternating infusions of Actemra and Remicade and we just can't even go there with our thoughts right now. He has been cold and losing his hair more.  The doc said that sometimes the body reacts this way.

One of the problems with systemic JA is kids' immune systems have little to fight with...please continue to keep Parker and our family in your prayers and throughts.  Today, he woke asking to soak in the bath.  He said he does feel better since his infusion and he seems a bit more energized to me. 

Almost 1 Year!

I know this is a long entry, but I have totally been avoiding blogging.  I am having such a hard time emotionally…for about a week now.  Parker has been very sick.  He has h-pylori and is now on 3 additional medications to treat it.  Parker is allergic to five antibiotics to so we are on pins and needles hoping he doesn’t react.  We just need to get him through this next week.  His past reactions have mostly occurred around day 7-10 of taking the med.  So far, so good…no reaction.  Tomorrow is day seven.

Once again, he is missing school.  The h-pylori is a stomach bacteria and it has put him in tons of stomach pain, horrible bowels (won’t go into the details), decreased appetite, and it is totally flaring his JA.  His pain is intense and he is very very fatigued.  Last Friday he seemed to be turning the corner and so we had one of his little friends over who has JA on Saturday.  She is 6 and she is into frogs and so we gave her Parker’s old frog tank.  The two of them had a pretty fun day and went swimming, cause we thought it would be “good for him”…not so much.  He got so much worse that night and next day.

So let me just share a little tid bit about pain…it is not something to take lightly.  He is trying so hard to not let the pain get the best of him but it’s turning him into Mr. Grouch.  I know he doesn’t mean to be mean.  Not only does the pain make him edgy but he is also on massive steroids and they are contributing to this horrible mood…we are trying to be patient but at the same time using it as an opportunity to teach him how to calm and breathe through it.  The pain is so bad; he is waking up totally drenched, with a temp in the 95’s.  I do think that it is worsened by the infection he is fighting; so I keep saying “this too shall pass”…

But my emotions are a mess…I just realized that we are approaching ONE YEAR since his diagnosis…We have learned a lot, have met some wonderful people, and we have actually seen some progress since he started the actemra.  So for these things I am very thankful; yet I find that I am fighting back tears…

When Parker was diagnosed we were told over and over, “at least it’s not cancer”…And people still say this, so I need to talk about this a moment.  Many of the families I have spoken with have had “cancer scares” and have gone through multiple tests to “rule it out”…including us with Parker.  And yes, I am very thankful it’s not cancer…but it is said to parents as if having JA is better than having cancer (I know they don’t realize what they are saying).  But JA should not be considered acceptable or better.  It deserves recognition.  It is a vicious, horrible, painful, and life altering disease.  And it can even be life threatening, as in Parker’s case.  And the medications that are given to children with JA warn that they can increase the chances of cancer and yet we choose them…because there are no other choices.  Parents hope for “good days” and remission.  We use these meds because our hope is to stop the progression and give our children a quality of life.  We need a cure!

We deal with very real issues.  I watched my son run a few weeks ago because he won a raffle at the arthritis walk and he ran up to get it.  It’s the first time I have seen him run in a long time.  I was excited and then I looked over at my husband and we both realized his balance was totally off and he was waddle running.  This was a moment of excitement and fear all in the same moment, for both of us.    Then there are the days he sleeps and sleeps, like this last week.  When this happens, I find myself checking to see if he is still breathing.  But the worst is in moments like tonight…he asked me if he was dying….

One of the receptionists at the hospital, who checks in all the children as they come in for their infusions, got into a conversation with me recently.  She has seen us come in to see both the rheumatologist and the oncologist because the docs share clinical space and the infusion room.  She shared that she sees so many children but she watches the children with RA experience so much pain and that is really hard for her to watch because they come for treatment until they are adults and age out of the pediatric care.  And she sees them at their worst.  And yet these children try to smile…

Don’t get me wrong, there are moments that children with JA have fun and run and do what other kids do…that’s what the public sees and it confuses them.  But when kids with JA are in a flare, they are NOT seen.  They are home, at doctors, in labs, in therapy clinics, getting tests in radiology, in infusion rooms, in the hospital….  Thus they are not heard…They need a voice.  Be their VOICE. 

It is Arthritis Awareness Month.  I cannot believe that the anniversary of my son’s diagnosis is in the same month as JA awareness month.  I need your help.  My family needs your help.  My son, Parker, needs your help.  Tell others about Juvenile Arthritis.  Send them to this blog…help others learn that YES kids do get arthritis and it’s very different than grandma’s arthritis…it’s very real and involves real children with real families with real hopes and dreams for the future and a cure.

Happy Days are Here Again!

We have lots of good news to share…YES!  Makes for a happy blog…

For the many that were so concerned about the lunch room issue, well I am happy to report that we used it as an opportunity to reflect, problem solve, and educate.  This week has been great and Parker is very happily chowing down and chatting it up with his peers.

As many of you know, we had our much awaited homebound meeting yesterday.  Another success!  As always, we were incredibly impressed by his school administrators, support staff, teachers, nurse, and ESE coordinator.  They totally supported us and all that was needed for Parker.  His 504 plan was discontinued and we developed an Individualized Education Plan (IEP).   He has missed 93 days of school this year, and that doesn’t count the “early dismissals” due to illness/pain.

We were very nervous about this meeting because we had been told on multiple occasions that the only way we could get hospital/homebound services was if he was either in a “local” hospital for treatment (meaning they would send a teacher into the hospital while he is getting his infusion…not the most optimal learning time) or if he un-enrolled from his gifted classes (where he is still making a’s and b’s) to enroll in regular ed telephone classes that are scheduled at set times.  At one point, I was told prior to the meeting, that if we were not interested in doing this, then we shouldn’t waste their time and homebound was pushing for virtual school.  But virtual school couldn’t honor his 504 Plan that included physical accommodations and work load accommodations.  And we were asked if we understood that even though the doctor indicated that he could “intermittently attend school”, that they couldn’t provide part time services.  When I asked for policies in writing, I was told there were not any.  So I said that I wanted his meeting, so the team could discuss his needs and possibilities for support. 

I am very familiar with the IEP process, since I am a special educator.  I am also very familiar with inclusion, since this is something that I promote and support in my work.  But I was having the hardest time navigating the homebound services and so was the school staff.  Parker is really the first kid that they have had with this situation, so we were all learning together.  But note that I am purposely using the word “together”…there is something very special and empowering when people come together and especially when it is for a child who will be learning and growing and contributing to our community.

So after we shared who Parker is and what he is experiencing medically, we then asked about his education options.  We were so impressed when one of the people from homebound said, “Well I think we need to think outside of the box here.”  She was spectacular!  She even called the county office to get permission to do what we as a team thought would be best for him.  She here is what will happen.  From now until the end of the school year, he will try an altered schedule.  He is going stay home on Wednesdays so that he has a day to re-coop and rest.  On Tuesdays, after school, the homebound program is going to pay one of his teachers (who was gracious to volunteer) to come to our house to bring missed work and review lessons that he may need help with.  And Parker absolutely adores the teacher who will be doing this!

Then the team discussed starting an eval for alternative and augmentative technology and look at a possible “other health impaired” classification for his IEP for next year.  So we are starting this process in hopes to get it done prior to the start of next school year.  The team will bring various forms of technology out to test him and let him try out the technology to determine what will be the easiest and most effective in assisting him with “writing”.  Some days he can barely hold a pen/pencil and to use the pressure it takes to write is very painful and exhausting.  His IEP is a work in progress.  We wrote up the homebound dual enrollment and all of his needed supports and accommodations/modifications.  We are very very thankful to Parker’s team!

And the good news doesn’t stop here…our primary doc recommended that we request a “case manager” for Parker with our health insurance.  We got a case manager today.  We have ONE person to deal with now….ONE!  And if something isn’t approved or if the doctors are having trouble with approval or if we have questions, we have ONE person who will help us get approvals.   We have had much difficulty around meds and tests, so this is huge!

We are relieved, blessed, happy, and ready to face the new days ahead.  We continue to see progress with the newest infusion treatment that Parker is on.  Thank you to each and every one of you who has been a support to us, a listening ear, and for your constant encouragement.

Celebrations are in order but…the Lunch Lady stole our thunder!

So we are so thrilled because Parker made school all week…So why was Parker so grumpy when he came home?  I was cheering and encouraging, but something felt off.  At first I just thought he was exhausted or in pain, but no…it’s cause of the Lunch Lady.

Ready for this…because I must vent a moment…today, when Parker went to lunch and tried to sit with his friends, like he ALWAYS does, the lunch lady told him that he couldn’t sit there.  Then, she told him he had to sit at the “handicapped table” and she made him move. 

So I must interject here…it took us weeks at the beginning of the year to convince him to even use his wheel chair at school; so he could last longer and not get so tired.  This all stems from when he was in elementary school because he was made fun of.  The kids were calling him the “idiot with arthritis” and “don’t get too close to him cause you will be an idiot too”.  So he didn’t want to stand out as different.  But it was critical that he used his chair to increase his stamina, plus he was falling a lot. 

So back to present time…his friend reluctantly pushed him over to the “handicapped table” where no one was seated and he was very upset. He asked if he could please go back and sit with his friends and she said “no you need to sit here by yourself.” And to make matters worse, the lunch lady then told kids that if they went and sat with him, then they would get a ticket (tickets will be part of a raffle later in the year).  Parker was totally humiliated and kids he didn’t even know sat with him to get a “ticket”.  So what kind of message is this sending our youth? 

We are so proud that Parker didn’t lose it at school.  We are even prouder that he has more empathy and understanding than most.  And we are incredible proud that he went to school all week.  Why didn’t he get a “ticket” for that?!?!?!

Pounding JA with Actemra!

Where would we be without our JA friends?  They truly understand how difficult our days have been and have periodically checked in with us to see how things are going.  We were showered with their support this week, as we endured our wait for medical results.  We are so appreciative.  We had a hard week not only with Parker, but Logan was also really sick.   I too was undergoing many medical tests; and our dear dear friend has been very sick and is in intensive care.  So for those of you who called, sent messages, and the very special person who sent a very lovely card…we thank you all from the bottom of our hearts. 

We are happy to report that Parker does not have JDM, however, he does have vasculitis in conjunction with his systemic JA.  To learn more about this condition, here is a website that explains it:   http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment

We also found out why his jaw is giving him trouble.  There is little space nor cartilage between the joints on both sides of his jaw.  His rheumy wants to keep a close eye on that; and we are going to an ortho for a special splint night guard.  We also found out that many of Parker’s blood levels are still off and he is quite weak.  Thankfully, I found one pediatric physical therapist that takes our health insurance and so we are now on a wait list to resume PT, 2 to 3 times a week. 

As many of you know, we have had some difficulty around approvals with our health insurance.  This week our primary doctor (I just LOVE her!), recommended that we call our insurance and ask for a case manager because she believes he would qualify since he has a “severe disease that is difficult to manage”.  She even gave us the direct phone number.  Who knew we could do this!?  I will let you know how that goes…

As for me, we found out that I don’t have lupus (both my primary and my allergist had this concern).  We are very thankful for this news.  I do have another small goiter on my thyroid, but we just need to continue to monitor it.  I did find out that I have a severe vitamin D deficiency (already working on this) and….ready for this…significant arthritis in both shoulders and hips with the start of osteoporosis.  Parker says we are still two peas in a pod (he has always said this about our allergies and asthma)…but I know that my pain has been nowhere near the level of his.

As for Logan, he is doing much better.  Still coughing a bit, along with Parker, but we think both boys are finally on the up-side of this infection.  Thanks again to our aggressive primary doctor who quickly started treatment.  And as for Michael, he is taking care of all of us…and I love him dearly for that.



We have successfully completed Parker’s second round of his Actemra infusion.  We truly think it is starting to work.  We hear joy in Parker’s voice again and although he still is requiring tons of sleep, he has more alertness when he is awake.  His swelling also seems to be going down and he appears to be moving smoother.  He is still in pain, but we are so incredibly hopeful that the Actemra is doing its job.  We will continue to go back every 2 weeks for infusions.  We think we are beginning to see light at the end of that tunnel; and as our friend WilmaSue has joked, we hope it’s not just a kid down there waving a glow stick.  But if it is, maybe some day soon Parker can join that kid!



Parker is the Spring 2011 Walk Honoree for Tampa!  To Donate visit:
http://2011awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=424537&lis=1&kntae424537=8FE6E8AD54324E3782E75E22155F5C86&supId=308384465



First Round of Actemra and MRI

 

So we headed to the Gainesville for our first Actemra infusion treatment on Friday…but first we made a very important stop.  At our last visit we met the medics who fly the ShandsCair and they invited us to come see them at the helicopter pad.  It was one of the most amazing things we have ever done.  These men are so incredible.  They helped support Parker so he could walk into the hanger and then they lifted him into the front of the helicopter.  They totally engaged him and then I saw the biggest smile I have seen on Parker in the longest time as they told him they were going to drive the helicopter out of the hanger, with him in it.  Tears of happiness streamed down my face as Parker road backwards into the sunlight.  They were so compassionate in taking the time to make this visit so special.  Their heartfelt time was truly a gift that he and I will cherish.  I thanked them for making this trip so incredible.  Simple acts of kindness are so beautiful.

As many of you know, Parker’s doc changed his infusion treatment Friday from Remicade to Actemra.  We were concerned that they would want to cancel it because Parker had the starts of a sinus infection but we got enough antibiotics in him prior to his infusion and he wasn’t running a fever. Whew!  The first infusion started with pre-meds. Then he got the Actemra…no reaction and so that’s a success so far.  We got there at about 1:45 and left about 5:45.  Faster than Remicade; that’s a plus.  And we stayed an extra half hour to keep our little friend Sadie and her mom company; since they were the last 2 in the infusion room.  It was so nice to connect with them and the kids enjoyed each other so much that we went to dinner together.  Us, moms also got a chance to connect.   Sadie gave Parker "Happy" the hippo.  After dinner, they came back to our hotel to swim...but it was too cold. So Sadie's stuffed dog, Lemondaide, met Parker's tiger. It was a nice end to the day.

I had the chance to talk with the doc and PA and they helped me better understand what we were dealing with.  Parker has probably had systemic JA for some time and they still think he also has psoriatic JA also because of the nail pitting.  They are going to keep a close eye on his blood levels and symptoms, along with the joints and organs.  They also explained that his blood work shows weird patterns and that in combination with some of his extreme muscle weakness and blood vessel patterns it is leading them to do further diagnostic tests.  One of the glaring concerns is his CRP numbers.  He had a CRP of 79.6 and norm is 0 to 4.9.  They said that this is a big inflammation marker.  They also feel that his platelet count is on the high side.  And his kidneys are dry (proof that he needs to drink more).  So they explained that they are hoping the MRI will give them some more answers.  They admitted that Parker has been a challenge and the doc feels that what is going on with him is rare.

Parker and I both had a hard time sleeping that night in our unfamiliar hotel bed.  I am sure because we were both anticipating the next day, but also because there was a dog barking next door.  But when morning came, I gladly awoke to face the day.  I let Parker sleep…he was running a low grade fever.   When he got up; he was all about the buffet.  He loved his eggs and waffles.  He is so funny…he thinks buffets are the best thing about hotels.  It’s the little things that just make me giggle these days.

We then headed over to the Butterfly Garden and the History Museum.  We had such a great time together.  Two butterflies landed on each of us; so we knew we were going to have a good day.  What a lovely garden.  A must see.  Parker took a gazillion pictures.

The MRI went well and I thank the doc because she had him take benedryl and morphine prior to the scan.  They scanned his pelvis and legs; then they repositioned him and did his jaw.  For the final scan, a crank was placed between his teeth and his jaw was slowly opened, until it hurt.  He went back in the tube for the final scan with his jaw locked in that position.  That moment was hard for me to watch.  I just couldn’t hold it together any longer.  As they did this last scan, I silently sobbed in the corner, fully aware that I had to pull it together before he could see my face.  I am so very proud of him.  The tech said that most adults can’t do that test without protest and he held perfectly still.  She didn’t have to rescan anything.  I do think he was determined to spend as little time in that thing as possible…he is so resilient.  We had to bring in a non-magnetic wheelchair to get him off the table to his wheelchair in the hall.  He almost fell in the transfer to his wheelchair but he did it.  We were done!  The good news is the tech said that she was sending the pics over to the radiologist to read that day so the results would be waiting for the doc on Monday.  They did say they would probably also get an ortho consult and that might take another day, but that means we may know Monday or Tuesday if he has dermatomyositis and/or vasculitis. 



Parker Shares What JA is Like

March 16, 2011

So I am writing today to try let people understand what arthritis is like. Now just let me tell you it is not fun; it is painful.

For example, look at this picture...

Pain-zilla!





To see the vessels and the pain in my back angle the screen.



Also for optimal view, angle the screen.

Now for those doctors that say, it was all in my head; look at this. Bet you don’t think it’s in my head now.

I also have to go through a lot of tests along with the pain.

For example, look at this.

Not fun.

And for all my friends who say I’m lucky because I don’t have to do all the homework and school work. Well their wrong. I have to do all the work they do but while I’m in pain.