NIH Status and Other Updates

Well, I am just going to be straight forward…there is no NIH (National Institute for Health) in Parker’s near future.  Although his doctor made every effort to get him in and even though she talked to the lead doc there, it seems that because of the 17 week long government shutdown, they are now very backlogged.  They are only taking kids that fit criteria for one of their studies.  She did ask the doc to ask other docs if anyone would be interest in a “very unique” kiddo; so he is posting on their JA doc groups. 

Parker was quite upset with this news; we are, however, please that Parker’s health has had some improvements.  His lungs have improved and pulmonology is happy that capacity is increasing.  And he has not had any other internal organ involvement in quite some time.  For this, we are incredibly thankful.  He is still in incredible pain; having skin issues off and on (minor vasculitis, rashes); fevers come and go but are not as high; and he has some joint swelling, but ankles are not as constantly huge as they use to be.  We do feel that the Rilonacept has slowed the progression of this disease.  And we are pleased with this drug in combination with prograf and his hizentra weekly infusions; it seems to be a pretty decent combo for him.  Of course, we wish it was even better, but we are pretty pleased with the progress because it has kept him out of the hospital and he has had less illness.  This is a huge blessing.

After a mini battle with our health insurance, we got Parker’s foot orthotics approved.  His left ankle has turned down towards the ground quite a bit, despite PT and his current orthotics.  So he is upgrading.  At first, the insurance denied the new orthotics saying that only diabetes patients qualify…but we are so thankful that we were advised years ago to ask for a “case manager nurse” with his insurance.  Plus, I am pretty darn persistent.  So after calling her and pleading, she advocated on his behalf and they were approved.  I advise anyone raising a child with chronic illness to ask if your child can have a case manager nurse.  It really helps to have one individual to talk to at the insurance company who knows Parker’s case.

Parker is now seeing a local pain management doctor (this is doctor number 13…jeeze louise).  He is totally on the same page as us and wants to work on getting Parker off the narcotics and use other routes to help with pain.  He did two rounds of tests with him and it looks like he is a candidate for nerve ablation.  We are seriously considering this for his back.  For the first time, in about 5 years, Parker had zero pain in the area the tests were done and it held for about 4.5 hours.  He told this doctor through tears, "thank you for the best Christmas present ever".  Of course, the doc and I got all teary with him.  We are also going to discuss his ankles further because his rheumy is wondering if botox injections in his ankles would help.  Through PT, he has had much improvement but his range of motion is still quite limited due to the destruction that has already occurred in his ankles and she feels botox might help.

 

As for a quick “Logan update”, his JA (spondy) has progressed some but is still somewhat manageable.  We have not had to add biologics.  He is on Celebrex and after discussion with the rheumy, he has decided to try adding plaquinel.  First, we need to get him in to the eye doc to get a baseline on him and also to look at his eyes because he gets some really bad reddening in them (especially just prior to, and sometimes after, migraines).  We want to get the ophthalmologist’s blessing before starting this new med.  Right now, this kid walks around with salanapas patches on his joints…it is just not cutting it.  The doc feels that he too has some mild vascular stuff going on…and we joked that it seems to just be one of those weird family issues.

So in closing, we are so very proud of our two boys.  Logan continues to push through dual enrollment and loves his college classes.  And Parker is juggling massive amounts of medical appointments…Yesterday, he went to PT even though he felt miserable (a little concerned he might be sick)… On the way home from PT, I think Parker summed it up best when he said “I am who I am, and I am really strong!” 

 

An Update on the JA Journey…

Update on Parker…  last Friday, Michael took him to his rheumy appointment as I was told I really shouldn’t travel due to my Grave’s Disease.  His doc is about 2.5 hours away.   I phone conferenced in.  The good news is that his joints looked less swollen and his hands had better color.  Parker shared that he is working hard with the physical therapist and that he also thinks that the acupuncture is bringing some relief.

The not so good news is that he is living with a chronic illness and it is by definition, chronic.  It is a daily battle.  The doc paid some extra attention to his left ankle and foot and even called over their PT to look at it too.  She believes that he needs to now see a podiatrist because his ankle has turned in so very much that it is almost hitting the floor and his foot turns out.  It makes me so very mad that no matter how hard we continue to fight that this disease rears its ugly head.

We do believe, however, that we have slowed it down.  The doc said that his blood work looked ok.  Only his vitamin D is still very low (this can cause pain in itself…the symptom is feeling like bones are breaking and anyone who has broken a bone, I am sure you can relate).  So we are doubling his D.  His pancreas is not processing correctly and his insulin is high, most likely due to long term steroid use.  But his other organs seem to be doing ok.  We are thrilled that this disease is not attacking his heart or lungs anymore.  And because the combination of Hizentra (IVIG), Prograf, and Rilonacept are likely the reason for this (in addition to so many positive vibes, prayers, and hard work on Parker’s part) we are not willing to stop Rilonacept yet…it is not stopping the disease but it is doing the best yet as slowing it down.  So Parker’s doc is going to work on the “over-ride”, once again, to get this drug approved for him.  We love her for persisting for him.  He is the only kid in Florida being treated with this drug for systemic on-set juvenile arthritis.  Thank God it has been approved for him.

So, now that he is officially out of school, we are working hard on focusing on what he needs.  This is quite the balance between our work schedules and medical appointments.  But we feel strongly that we must focus on Parker’s health…and we will never give up.

So, the new game plan is to up his physical therapy to three times a week, continue acupuncture, add massage therapy, get new orthotics to help his ankle/foot, increase vitamin D, continue to work with his ten amazing docs, get his wheelchair adjusted, and work with a new pediatric pain management doctor to try and continue to decrease his pain meds.  He is almost off of his tramadol…what a huge step… and he is down to 3 mg of predinose.  We are so thankful for the baby steps forward that he is making.

Michael and I are aware that this disease is going to be a lifelong journey.  We discussed this a bit with his doctor.  And we are all truly happy for his bit of progress.  She is now trying to get him into the National Institute for Health (NIH).  We are fortunate that she knows the lead doctor there and she is personally calling him.  She will be the doctor continuing his treatment but NIH may help lead us in needed directions through genetic testing; again, another huge blessing for our purple playa.

I know this is Parker’s blog for updating…but we are now watching Logan’s JA progress a bit.  It seems that if he does a lot on his feet then his ankles swell.  He is also getting more migraines and the rheumy thinks that it might be one of his meds; so we are making a switch.  We are hoping that the switch helps with not only his migraines, but his swelling as well.  He has needed two infusions these last two weeks.

So it’s a balance…between both our children’s medical needs, along with my own.  My husband is an amazing individual and helps us all.  I love him dearly for that.  So our hope is that NIH may not only help Parker, but our whole family because we have such a mix of autoimmune issues.  Thank you to each of you who continue to check in on us and support us through this journey!

Much Love!

Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 

We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.