There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Monday, September 17, 2012

KIDNEY BIOPSY /UPDATE (text may push pics down page - scroll down)

Thanks for the Prayers Everyone!   I know I haven't updated since the Biopsy much... God dealing with me on some things again ..... But here is Update with Bailey : ... (Better Pack A's pretty scattered,....especially this late/early - 5AM ?!?!!! Uhh.......)

(Details about Bailey's Kidney Biopsy:.... lab/testings results over past couple of months....)

After her biopsy sent to 3 labs here,  then even to a specialist in Tennesse.,....There is Still - NO concrete explanation/diagnosis that is agreed upon... And told once again that She doesn't: "fit into" `- "the normal findings".., the box",... "the textbooks".... on diagnosis, treatment, tests etc.. She/this. is ...another.. "rare" thing that cant be completely explained... or doesnt make sence..., like some findings point to problems that usually arent seen... except in a 70-80 yr old person..(...????.. can't quote all of the "Could Be(s)", May Be(s), .Looks like it points to(s), just bare with me!) .

One Dr. thought it looked "Systemic Lupus-Like"... but all Lupus Tests were negative...., So more confusion... And another Dr. thinks its still the Juvenile Psoriatic Arthritis and is a "side effect/result of" the Meds ... or... could be a totally "Different Kidney problem altogether, not related to Juv Arthritis..." we just dont have enough research.....and therefore have to wait on Biopsy results & the Pathologists Reports to give,.. Any clues & go from there. SO,..After her Remicade Treatment last week & the Nephrology follow up this past week here is the closest "Explanation"/"Information", we've gotten so far and the most current:

(**** FREE TIP : **** If you allready know, All about Remicade - and our Sometimes, Crazy Life.. save yourself -... and the next " HOUR " or so... of your time! - NOW - and Skip to the End !!! LOL!)

Remicade,...(for those who do not know is the IV meds she gets made from mouse protein.... And after a year or two on it... the body usually rejects it... Saying ... "hey you 're not Human protein... And so You don't belong in my body.. & therefore the body rejects it.... And Therefore,.... is NOT helping to "Supress (Slow Down) the Auto-Immune Disease (whatever "type" or Name) from Running Rampid all over the Body--- attacking healthy tissue, joints, organs, eyes, etc...(depending on the type) BUT - We are on year FIVE .......

And it looks like Bailey's Body may have finally built up immunity against the Remicade,...(we dont know if it was Recent,... this year,... or several yrs ago,...- We will probablly never know. Just now finding it because it had been Binding to other cells,.. then clumps,... and somehow eventually got Backed up/Stored in Kidney(s) and then Busted-leaked-pushed it way through,... the Kidney walls,... therefore inflamation & Blood count, Urine tests,.. Protein,... etc was found more. SO---- Means Remicade is probablly no longer working --- But One thought is Dr may Stay with some of it -- and Add Another Drug - Rituxan  (Dr said it is Very Strong,... and can be dangerous adding this.... Its another (super charged) drug to Suppress/Pull Down the Immune System STRONGLY....trying to kill/chase away the B cells that are overactive & and try to destoy Healthy tissue,...joints, etc... FASTER now.   SO - .... IF  we have to,... This would Pull her allready Supressed Immune System,... Further Down & would be way more succeptable to getting sick,.... and so on..... so we'll see if we start that..... ******

* Anyway - to back up (so you'll know what I'm talking about), *.... . : The cells have always come back,  (to attack) her eyes again. (Eye Dr had told us, years ago, that,... IF, or WHEN it comes back (in her eyes) .. it usually "Comes Back with a Vengance" - (Worse than before) it has...many times. And so,.. we have to start all over again, & Have to "up" the Remicade dose, again--- and start back to every two week treatments for a while....WITH using the Steroid eye drops (started like 6 drops a day - last time was 16 a day....) and Dilating drops to keep her Pupil(s) Wide Open 24 hrs a day... prevent scar tissue from forming and not being able to open/close it, etc... But these are dangerous also - as they TO can CAUSE cataracts and glaucoma & she had all ready had a small cataract off to the side, at age 2, when first diagnosed with Juvenile Rheumatoid Arthritis. So she is on drops usually @ 6 weeks, taper down, then off those....And just treatments & shots... So Then if clear eye checks after those... We go 4 then 6 weeks etc... again -- * But year or two ago,..(all runs together now) she was suppossedly on the Max. of Remicade she could be for her size/age -- then ...Eyes Flarred Again.... so after @ a 4 week or more battle with the Medical Insurance Company & having them "Deny" Orencia over & over (another Medicine that Dr said had been shown in small study to help... some.. uveitis, ..... so worth a try,.. and even faxed in article/study showing some use....(all the while, this disease doing what it wanted,... while approval/decision was waiting to be made,... being "held up" - by the Insurance Company "Medical Review Board" ....) ....still on the Methotrexate, and started the prescription eye drops ASAP, - to atleast "start" to combat the cells, .. - while "waiting" for other meds... ) After all that & a few doses of the New Med,..... Eyes continued to flare --- WORSE!!!! So,... Dr said Back to the Remicade & UP the doseage. But,.... If it Had stopped working,... then why...? Best choice then was to Stay on the Med that had gotten rid of the cells before many times,... just UP it,... so it will work again......? Well... it did.

But With Drs having to UP the dosage with each past eye flare, to work, because it is known to be the Best for her Chronic Uveitis, which had been our biggest hurdle ... and it is used for other JIA problems... Each time over the past Five years,.. (after getting to a few "Clear" eye checkups (meaning NO cells floating/attacking the EYES - or "quiet" disease)...... the Drs try to "Wean" her OFF of the Remicade by stretching out the get to every 6-8 week treatments.., then maybe 10-12 ??? (never seen so far) ,..Then hopefully... Eventually,..... (We were told,..Years Ago -,...) INTO - "Remission with Meds",.... then eventually Into "Remission OFF MEDS",...... meaning " OFF " Of the Biologic Medicine (Remicade),.... but still probablly another year or so ON the Methotrexate (Low dose Chemotherspy) & we have wanted her OFF of this Medicine (and ALL strong Meds) - for years!!! And for her to be able to Really "Experience" life... as a child SHOULD.... - "withOUT" Medicines, Shots, IV's, limitations, restrictions, taste bud changes, Sedated,.. then woke up, MRI's, Biopsy. so.many Dr appts, Therapy, etc..... She is 7, almost 8 & has been on these medicines, since age 2 (& 1/2...)... so,.. if you think about it (and you KNOW,.. I Constantly DO! lol) thats Way over Half of her little life so far! She doesn't even really KNOW, what her Body and Everyday Life....Feels like----- "Without medicines in her little body/tummy".

Understand - We ARE Very Thankful, and Greatful - to the Medicines/Treatments available & the Drs, Researchers, nurses, physical therapists, etc...(feels like I am at the Music Awards Ceremy and afraid I will skip someones, bare with me if I!) - We KNOW these meds have helped MANY... But God has been "dealing with me again /showing me - well, "Trying",... to Show Me.... " some things lately (whether I like them or not!..) ...and I am realizing that they " DO" have these "Rare" "Side Effects" & "Risks", the black box warnings... and the "Small Chance" (- of causing Lymphoma Cancer.. etc,).. All of the "technical/medical-fine print things" they Have to warn you about,.. but Assure you it's not you..... And even to ( what starts,. as) the most common tpye of cases,..easy to treat & usually doesn't return type cases--- those "Small Chances" - ARE STILL THERE / HERE ... they DO exist & CAN really BE - And Making the Decision to Start.. and/or ..Continue using them is a Hard one,...for Parents (and the Doctors) . ----- With only having the Very " LIMITED " :Research, Data, Studies, Outcomes of Patients,..etc.that is currently "Provided" ,... to use as a  " GUIDE  " .  So.....We are Bound to.. "Sway Off Course" , a few times... - or get upset &  And  "Try To Make Our Own Map".. "when the first one didn't get us there like WE thought it should".    I KNOW I've made MANY Maps!!!!    And they all got stuck into bottles when they didn't work & are probablly all still floating out in the sea!

I "Realized",.. ..After ( WAY.. After,.. feeling likeI had been beat upside the head with a Huge Bunch of Bananas over & over again,- then "Dropped" upside down, into the. Crazy/Fast/Spinning/Uncontrollable-Thousands- of- thoughts- at- one- time, doesnt- ever STOP- Thinking - "HURRICANE" that is,..... my "Mind". ..) that uh,... We "STARTED" this "Journey" with a "Guide" / "Tour Guide" ---- Where did He go ?!?!

I "Believed" that He, ... could get us to where we wanted to be, the Fastest! And that He,... being the "Tour Guide",..and having Full Access to All of the "Information & Tools" (no matter how limited...), ...would make it Easy, ...for me to Follow Him.... And that since He - KNEW--- ALL of the "dangerous places" & "The Spots we Should Avoid"... - "along the way",.... H e was "Suppossed" to make our " tour/journey "  smooth .....

Well,.....after hitting several "Bumps" - in the Road, ... Some - PRETTY " BIG " BUMPS ---- (you know, ...the kind that" knock" you out of "alignment",,, lol!) ---- Well,.. I now confess........ I ,..........  " T H I N K" ... that I ,....MAY.. have,........uhhhh.... got a little, -----" fed-up",....... and ----"Acidentally",..... Well,... Uh....     "Tossed Him out of My Boat" -   .......   a few times !!!   (lol!)
        But,... it's OK!!!! - I eventually Drove back around & Picked Him Up!!!( lol) -----  Well... Actually,.....I   "ASKED"  Him to ........" Please - ... Get His Butt BACK IN MY BOAT,... "... and Thankfully He did!   
       (And its OK,--- those of you about to have a - "Heart Attack" ,...Calm Down -- Yes, This IS  "GOD"  -  I'm talking about and  "He"   IS   Laughing at this right now!  More like a Chuckle... (as a Father is stern,... but sometimes Has to just shake his head & laugh at the things his kids do,..." ( lol!)   He Knows we are NOT PERFECT!   Heck - HE gave me the ideas!!!
        Two of the Greatest things I Love & that Many Seek and Never Find,... (and some, like me, have found & lost again.....  Several times..)  Is:   Joy & Laughter come from Him,.... and when I learned enough to "know" this,... it changed our relationship!   He is, as well as many other things,... Loving,... Comforting,... Pretty Easy  to talk to,..... -  Heck,  what's to hide,.. .He Knows it ALL,... so it's not like you can hide anything from Him (lol) -- He allready knows it !!!  I think He has Stood up there & Laughed at some of the Crazy stuff I have done over the years!!! (lol!)    Yea,... even "He" - has a sence of Humor!      SO,....  Unless I "CRACK"------  Soon     (lol)...  You can "Believe" - He has laughed at YOU  a few times also !!! (lol) .... Come on -  He has a FRONT ROW SEAT !!!!      OK , .... Now,...

Lastly,    Where I used to be, -  "convinced/comforted", ... (maybe - somewhat),  by the Drs & the Reports that included words like:

     "Rare"......."could happen",...  "slight chance of" ....  "the Benefits of.... the Meds -
Outweigh the Risks,"   or....  there is the... "Small Chance of..."   (such-n-such) -  
 happening,...   Or,.. "with this  "type"  of JA.....  "there's only a 10-20% chance 
it will be in her eyes",... or  "don't worry,....
your chance for that is slim,...  usually only happens in
worse  or  "other -type" cases...  "risk is greater when on more medicines",...   
 Uhhh... Guess I'm Not so Comforted after all......
I guess it's easier to be comforted in the Calm.... than in the Storm.

WELL,..   As we have found out,...   ( the Long, Slow, Hard Way),.... 
Our  -   " Precious  Little "  -   " RARE  ", ....
" SMALL CHANCE "    Girl -------- 
SEEMS.... to want to .....  PROVE - the Medical World  -  
" W R O N G " ....   AND    " R E W R I T E "   .....  
those  Textbooks   !!!    (lol!)

I Realized --- HE  has been "TRYING" ...... to show me,  that  She  ----- "WASN'T   MEANT"      (created...)    "FIT "  ..... (squeeze into,  conform to,   act/be the same as.....) 
  into   Any ----  " B O X "  (confinement/held back...) !!!!   
   She   IS  -   ......   " ONE- OF- A- KIND "    ...   and   ...    "  R A R E  "     !!!
Remember: ........  Keep Pressing "Older Posts" at the Bottom of each Blog Page (Pink),....
to see the Previous Pictures, Videos and posts,.......   (kinda easy to miss)

1 comment:

Jenny Dobbs Nelson said...

Hang in there girl. You have many people praying for you and Bailey. -Jenny Nelson