Update: Stilll waiting,..... and hoping,... and fighting,...

Thursday, January 29, 2015

Update: Stilll waiting,..... and hoping,... and fighting,...

Sweet Picture of Bailey, Years ago.... :)

https://www.facebook.com/CureArthritis/posts/10152744746828892

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> by Arthritis">https://www.facebook.com/CureArthritis">Arthritis National Research Foundation.
UPDATE:
Well,.... round one of the "In Home Infusions" failed.   Next, the appeal,.... well after several hours on the phone with Drs office and mostly Insurance Company, R/X Company,...... finally got a letter stating the R/X Remicade Med. is covered under our insurance (which we KNEW,....as she was onit almost 8 years !?!?!) ----- but nothing about the In Home Infusions - that we are wondering about !!????! WOW !!!! How hard is it to get 1 answer from BCBS Insurance ?!?!?! We are just WONDERING " IF " it is a Possibility to do this or not!!!!!!   And if so, can we afford it???? So far so many roadblocks, yet we keep repeating the Same information to Several People Involved ?!?!? IS HOME INFUSION THERAPY OF REMICADE COVERED UNDER BCBS & IF SO ...... $$$ HOW MUCH WOULD WE BE RESPONSIBLE FOR ??????!!!!! UGH...... !!!!!!
      They were$16,000.00 Each, when we had to stop them and switch to Humira,..... Why is it SO hard to get an answer ???!!!!   Meanwhile, she is dealing with more meds, more dry, flacky, plaque psoriasis patches on her body and scalp...... more emotional rollercoasters,..... attitudes from ____, Complaining and fighting against meds - even hating the drops and ointments for the psoriasis spots, that help her.... and NOW she catches a COLD ?!?!?!!   OMG !!!!!   So - No Humira last week for her, since it would bring her immune system down even more, and the flu scare is rampid enough right now for regular people, let alone Immune Suppressed Kids !!! UGH !!!! Which means more soreness & Pain & Grouchiness !!!!!!
     OK,... Tantrum DONE! Time to put on my BIG GIRL PANTIES and get back to business,... well,..... Life - Church, Friends, Home School, Bible Study, Classical Conversations Classes, Appointments, Swim Therapy, Lakeshore Foundation, Piano, housework, declutttttering many piles, trying to get more organized before I have a stroke (lol) , Back to Insurance Companies, R/X Plan companies, Middle Men, etc, etc, etc...... WHY do we hold on sometimes?...... JESUS! The Only reason Im still here ! :)

2 comments:

Unknown said...: Thanks to this great herbal doctor who cured me of LUPUS DISEASE his name is Dr. Iyabiye. I suffered LUPUS for over 12 years with pains like: Achy joints, Skin rash, Pain in the chest, swollen joints and many more. The anti-inflammatory drugs couldn’t help, until I read about his recommendation 4 months ago, I contacted him and he administered his medication on me and I was confirmed cured and free at the hospital after taken his medication. You too can be cured if interested. Contacts: iyabiyehealinghome@gmail.com
(+2348072229413 / +2348158577300); September 7, 2019 at 2:19 PM
Tim Swaggbro said...: Thanks and keep sharing such valuable updates through your side.
IV Hydration Therapy Joshua Tree CA; April 22, 2021 at 5:08 AM

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Bailey's Health & New Info:

Blog still under repair,.... But Lots more: - keep going down page & to "Older Posts" for more! Also:

Please visit these other sites & pass along to help us spread the word!!!!!

Lots of Videos on Facebook & YouTube: SEE Videos on what UVEITIS looks like,... See the World through Bailey's Eyes!

YouTube Site: http://www.youtube.com/user/BaileysmamaJRA

www.CureArthritis.org/kids-get-arthritis-too

http://www.curearthritis.org/ (Pics/Videos of Bailey on their site also = Great Group!!!!

ANRF - Ringing the Opening Bell at NASDAQ!!!!!

www.nasdaq.com/marketsite events.stm

or go to July 8, 2010:

Arthritis National Research Foundation

FACEBOOK: Search for Kim Jenkins Warren in Birmingham AL WE try to KEEP UPDATED ON FACEBOOK often

CureArthritis Site: http://www.youtube.com/user/CureArthritis -

(Bailey is featured in a couple of the Videos to the right of this page once you pull it up)

http://www.curearthritis.org/ (The Cure Arthritis - Main Site)

MEDICATIONS:

REMICADE: (Made from Mouse Proteins;) Not yet "FDA approved" for use in Children with JIA. Remicade blocks a protein created by your immune system called TNF-alpha. People with too much of this - confuses the immune system & causes it to attack healthy tissue. Remicade targets TNF-alpha & blocks the damage caused by to much TNF-alpha. This is given by IV over Several hours & (there is a small chance) Has caused cancers in Children, especially the longer it is used.

METHOTREXATE: This is a Chemotherapy Drug usually used in smaller dose. This medicine affects cells that are rapidly growing, such as cancer cells. It works on the immune system.

BAILEY'S HEALTH UPDATE:

(July 4th 2010)

Bailey has a Cold/Allergy going on right now,& gets her Methotrexate Dose tonight, then another Remicade IV Treatment this Wednesday at "Children's Park Place", then We have an eye re-check appt on next Tuesday the 13th. Since the Uveitis Cells came back, the The Remicade Treatments moved back (Closer together) again. Should be @4 weeks now.

(May 12 2010)

Not good Eye Appt today ---- Cells are Back in Bailey's Eyes. She will be taking PredForte (Steroid Eye Drops) 4 times a day again for next 2 weeks & Dr will recheck her eyes then. We HATE this Disease! Its so hard to believe this could steal her sight & she allready has a small cataract in 1 eye. Pray this works! If not, May need to increase IV treatments/Dosage amounts, ....... We'll see.

(Even though we don't like to Make Bailey have to take any of these Meds , We are Very Thankful that they are available - I mean - imagine if they weren't! Thank God for the Research, the Doctors and the Nurses!!!!! You Guys Are GREAT!!!!!! - WE JUST NEED MORE FUNDING FOR THE RESEARCH!!!!!!!

There is a small Cataract in one eye, so Dr Read will be keeping an eye on it.

We've Been asked about the Cost of these Treatments: REMICADE treatments are Very Expensive - Each bill usually comes in with a Billed Cost of @ $8,000.00 - Insurance does pay some, But Not All! While this is Great Medicine - It is Very Expensive! Thank You CRS for helping us with some of thie Burden of these Treatments. These Treatments can put a Family in Hardship Quick - But Thank God for the Outcome of the Patients - We couldn't Live with out it!

THANK YOU SO MUCH TO EVERYONE WHO HAS CALLED and/or EMAILED US THAT YOU and/or YOUR CHURCH WILL BE PRAYING FOR BAILEY!!!!!!!!! Your support is very comforting!

SO PROUD OF BIRMINGHAM, THE AJAI, & OUR DOCTORS!!!: (Pictures to the left) Check this Out! (Back on here now!!!!) -

http://www.foundationbirmingham.org/newsarticle.cfm?articleid=10030815&PTSidebarOptID=10005393&returnTo=page10004415.cfm&returntoname=50%20ways%20to%20love%20your%20community&SiteID=1884&pageid=10004415&sidepageid=10004415&thetitle=%0A%20%20%20%0A%20%20%20%2338%3A%20Clinic%20provides%20quality%20care%20for%20kids%20with%20arthritis&banner1img=banner_1.JPG&banner2img=banner_2.JPG&bannerbg=bannerbg_custom.jpg&siteURL=http%3A%2F%2Fwww%2Efoundationbirmingham%2Eorg

INFO ABOUT JIA & UVEITIS : ************

http://www.health.uab.edu/13905/

http://www.health.uab.edu/51219/

http://www.arthritis.org/chapters/alabama/news.php?id=259

http://gabriellesvision.org/videos/cellandflare.wmv (Shows Cells in Eyes - May need to press "Open", Then "Allow" to start playing) **********!!!!!!!! *************

NEWSPAPER ARTICLES !!!!!: (Blog Page Under Construction Again!!!!! Links all were Erased?!?!)

OK - The LINK to the Newspaper has been deleted, But they sent me the Articles from last year & this year! (Thanks Melanie - North Jefferson News!!!):
4-30-2008 By Melanie Patterson The North Jefferson News
Most people do not think about children when it comes to arthritis. Neither did Steve and Kim Warren of Fultondale. That is, not until their 2-year-old daughter Bailey was diagnosed last year with juvenile rheumatoid arthritis (JRA). They had never heard of it. The family knows that many people do not know children can get arthritis, so they’re fighting to raise awareness and funds for research and a cure. The Warrens formed a team called Bailey’s Buddies to walk in the Arthritis Foundation’s Arthritis Walk on May 10 at Lakeshore Walking Trail, 600 University Park Place near Samford University. Friends and family will walk in honor of Bailey, who is now 3. Bailey’s diagnosis came last year after she woke up with a red, swollen knee. Kim Warren figured her daughter had simply fallen, so she took her to the pediatrician. The doctor took a look and ordered blood work, which surprised Warren. He then sent Bailey to an orthopedic surgeon. What followed was a painful drawing of fluid off of Bailey’s knee, and then surgery, a three-day stay in the hospital, and finally the diagnosis of JRA. The news kept getting worse for the Warrens. Bailey’s doctor told them that JRA can cause vision problems, and even blindness. When they took her to the eye doctor, the disease had indeed begun to affect the child’s eyes. When eye drops didn’t help, Bailey began to receive Remicade treatments, which are four- to six-hour treatments at the hospital through an IV. She also gets Methotrexate shots once a week. “She hates these and so do we,” said Warren. She said that both drugs are listed as chemotherapy drugs, and that Remicade is not FDA approved for children. So she fears the possible side effects. Despite the severity of Bailey’s illness, Warren said that you would never know on some days that Bailey has this disease. “You never know waking up when she’s going to have a good day and when she’s going to have a bad day,” said Warren. “Sometimes she’s just a 110-percent pure little girl,” she said. “She’ll go days when you wouldn’t think anything is wrong. It’s unbelievable this is going on inside her body when she looks so healthy on the outside.” At other times, Bailey and her family are all too aware of her illness. There was a recent scare when Bailey had a high fever for two nights in a row. Tests showed that her white blood count was at 30,000. A normal count is 5,000 to 10,000. That was scary because JRA is an autoimmune sickness. “Normally, white blood cells go after a cold or flu,” said Warren. “With this type of disease, they don’t know when to shut off. It destroys joints and tissues in her body.” Warren said she considers JRA a “kind of a silent, horrible disease” because it is very destructive if it goes undiagnosed and untreated. “When a child’s knee or knuckle hurts, don’t assume it’s just a bug bite,” she said. “You have to know what to look for.” Bailey’s family does not know how long she will suffer from JRA. “We’ve heard that some kids can outgrow it,” said Warren. “But doctors don’t give us any kind of hope yet.” She said that doctors do not consider children in remission until they have been symptom-free and off their medications for two years. The Warrens moved to Fultondale four years ago when Steve was transferred with his job at Lowe’s. Kim is from Virginia. Her mother, Bonnie Hott, and sister, Barbie Thompson, are traveling from Virginia to participate in the Arthritis Walk on May 10.To read more about Bailey and to see photos of her and her family, go to http://thewarrens-baileysmama.blogspot.com/. There is a link on that page that leads to the Arthritis Walk. The team Bailey’s Buddies welcomes more members, and also welcomes donations. Donations may be made on the Web site.

4-18-2009 By Melanie Patterson The North Jefferson News
A Fultondale family is searching for people to join in its fight against arthritis. Steve and Kim Warren became intimately familiar with juvenile rheumatoid arthritis (JRA) two years ago when their daughter Bailey, then 2, was diagnosed with the disease. JRA is an autoimmune disease that can cause chronic inflammation of joints, possibly destroying them. It can also affect organs including the eyes, skin, and heart lining, according to a press release from the Arthritis Foundation. Last year, the Warrens formed a team called Bailey’s Buddies to walk in the Arthritis Foundation’s Arthritis Walk. This year, the foundation chose Bailey as the 2009 Junior Honoree. Bailey, now 4 years old, is doing much better now than she was this time last year, according to Kim Warren. “This year there is good news on Bailey,” said Warren. A side effect of JRA is vision problems. Warren said her daughter’s eyes are currently clear, but she has had problems with them since her diagnosis. The mother and child have had speaking engagements at Regions Bank, the Birmingham Botanical Gardens and other locations to raise funds for the Arthritis Foundation. “We need team members and donations for the foundation,” said Warren. “We would also like to have companies or businesses sponsor us.” The Perfect Look in Fultondale, where Kim and Bailey get their hair styled, is taking donations for the Arthritis Foundation. The foundation works to continue improving arthritis and improving the lives of the 1.2 million Alabamians who have arthritis. There are 4,500 children in Alabama with arthritis, according to the foundation. The Arthritis Walk is scheduled for May 2 at The Summit. The theme is Let’s Move Together. The walk begins at 8:30 a.m. at The Summit on U.S. 280. Registration and activities open at 7:30 a.m. To register or find information, visit www.LetsMoveTogether.org/. To join Bailey’s Buddies or make a donation, visit http://thewarrens-baileysmama.blogspot.com/ or call Kim Warren at 841-0519.

To Whom it May Concern: (A letter from last year describing Bailey's Condition)

(From Last year - Since then, We've Been Up ----- and Back Down Again....)

To Whom It May Concern:

I am writing you, because of a disease called Juvenile Rhuematoid Arthrits – more recently known as Juvenile Idiopathic Arthritis that effects almost 300,000 kids, yet not many people are even aware that it exists. For this reason - I am writing you about my daughter, Bailey.

Last year, Our 2 yr old (now 3), Bailey, woke up with a sore knee & wouldnt walk on it. I took her to the pediatrician, thinking maybe she had fallen on our hardwood or Tile floors the night before & maybe she cracked her KneeCap (if thats possible?). At the Dr. office, the Dr. felt her knee, felt warmth, saw redness & wanted to do - "bloodwork". I thought, "Are you crazy?!?! - Do an x-ray man!!!" Well, after bloodwork, we were sent to the Orthopedic Specialist. He had to draw fluid off her knee (while we held her down screaming), and saw that the fluid was white & pink (Sign of infection/inflamation), and sent us straight to Childrens Hospital, in Birmingham Al. She had Surgery that night to irrigate her knee area, and then we spent 3 days there, while they poked & prodded her, as she was hooked up to an IV, and each day theyd come back in and say "well her such - n such counts are up to..." "We'll see what they are tomorrow..." Then the nurses would come back in at 3 AM & wake her - taking more blood from her tiny arms.

Eventually, they told us "She has JRA". Juvenille Rhuematoid Arthritis. And the Journey began. We have since then read & researched everyting we can on this disease - and believe me, its NOT your Grandmothers Arthritis! We were told that, before some recent medications, kids would end up in wheelchairs. What a horrible thought for a child! They have done 2 steroid knee injections on her allready, and this last one has left an "indention" they call "Atrophy" in the back of her leg, that they say, may never fill back in - or if it does, it could take years.

They also told us to get her eyes examined, because there is a 20-30% chance that this type of Arthritis could affect her eyes.---WHAT?!?! Arthritis affect eyes? Well, we took her to the Eye Dr. - and yea, it was already there! The Dr. said she had Cells - or Floaters, in her eyes allready. Left untreated, this causes Blindness! It is called Uveitis. From there, she had to also take 4 Steroid drops throughout the day, then when that didnt help, we added Dialating Drops 2 times a day - these were to keep her pupils dialated All Day - to prevent Scar Tissue from forming! Well, when that didnt take the cells away, we started Remicade Treatments/Infusions. These are 4-6 hr treatments done - at the Hospital, through an IV. (All this with the Methotrexate Shots we have to give her 1 time a week). She hates these & so do we! They Both are listed as Chemotherapy Drugs and this Disease is very expensive.

We had no idea that this disease was even out there, yet almost 300,000 kids have some form of Arthritis! It seems to be one of those diseases that no one knows about, but should. I havent heard of anyone Famous having it - have you? Maybe if a Celebrity had this , they could help bring it to light for America.

We participated in the Arthritis Walk this year, and formed a team - in honor of Bailey, called "Baileys Buddies". We were the top fundraiser, raising $ 4,600.00, but more importantly, helped spread the word about what these kids go through!

PLEASE take just a minute to look at her Blog Page (her link to the Arthritis Walk Page is to the upper right corner also) We have set up this blogpage to keep family & friends updated on her treatments.... We have Pictures/Slideshows, etc... of her Dr. Appts, Treatments, etc... We have been told that it "Opens peoples Eyes to this disease". Please give it just a minute. The first Video posted there has been shown at several Arthritis Walk Kickoff Luncheons to help bring awareness that this isn’t the “Arthritis” people usually think of. Her Blog Page is :
thewarrens-baileysmama.blogspot.com

I know this may not be a huge story, but it may be an “Eye Opening One” for Milllions of Americans, who have kids that have been misdiagnosed due to a shortage in Pediatric Rhuematologists & May help even 1 child not to become disabled! We were very fortunate - NO -- -- BLESSED, to have been diagnosed Early by a Pediatrician who knew about this disease - there are so many kids who aren’t.

Its hard to hear about an “Adult” living with Pain, Stiffness, Swollen Joints, Parts that just wont move, bone length discrepancies, disabilities, etc... - but it’s Breathtaking to hear of a child who suffers like this. They haven’t done anything - to anybody, to deserve this!

THANK YOU For your time - It means more than you’ll ever know! Anything you could do, to bring awareness or help raise funds for research, to find a cure, would be Over whelming to me & my daughter – if fact - I’m sure it would be to all Parents with kids, living with JRA. It is so hard to see your child suffer from a disease in which there is no cure. It’s very scary to not know what tomorrow brings and if these treatments are even working. I know many people wont pay much attention to this, but all it takes is just one. Will you be that one?

Thank You,

Kim Warren, (Concerned Mom)

3006 Forest Drive
Fultondale, AL 35068
(205) 841-0519
(205) 873-3232
war3006@charter.net
Baileys Blog: http://thewarrens-baileysmama.blogspot.com/

Last year, Our 2 yr old (now 3), Bailey, woke up with a sore knee & wouldnt walk on it. I took her to the pediatrician, thinking maybe she had fallen on our hardwood or Tile floors the night before & maybe she cracked her KneeCap (if thats possible?). At the Dr. office, the Dr. felt her knee, felt warmth, saw redness & wanted to do - "bloodwork". I thought, "Are you crazy?!?! - Do an x-ray man!!!" Well, after bloodwork, we were sent to the Orthopedic Specialist. He had to draw fluid off her knee (while we held her down screaming), and saw that the fluid was white & pink (Sign of infection/inflamation), and sent us straight to Childrens Hospital, in Birmingham Al. She had Surgery that night to irrigate her knee area, and then we spent 3 days there, while they poked & prodded her, as she was hooked up to an IV, and each day theyd come back in and say "well her SED Ratre is up & such - n such counts are up to..." "We'll see what they are tomorrow..." Then the nurses would come back in at 3 AM & wake her - taking more blood from her tiny arms.

Eventually, they told us "She has JRA". Juvenille Rhuematoid Arthritis. And the Journey began. We have since then read & researched everyting we can on this disease - and believe me, its NOT your Grandmothers Arthritis! We were told that, before some recent medications, kids would end up in wheelchairs. What a horrible thought for a child! This is an auto immune disease. Somehow, White Blood Cells, that are supposed to fight off infection, dont seem to know when to shut off & continue to attack, destroying tissue & joints. It can cause possible bone legnth discrepancies or disability. They have done 2 steroid knee injections on her allready, and this last one has left an "indention" they call "Atrophy" in the back of her leg, that they say, may never fill back in - or if it does, it could take years. The type of Juvenile Arthritis she has is called Pauciarticular or Oligoarthritis (atleast thats what we think so far, every month, it seems there is something new that pops up). With this type of Arthritis, we were told there was a Slight Chance it could affect her vision.....

They told us to get her eyes examined, because there is a 20-30% chance that this type of Arthritis could affect her eyes.---WHAT?!?! Arthritis affect eyes? Well, we took her to the Eye Dr. - and yea, it was already there! The Dr. said she had Cells - or Floaters, in her eyes allready. Left untreated, this can cause Blindness! It is called Uveitis. From there, she had to also take 4 Steroid drops throughout the day, then when that didnt help, we added Dialating Drops 2 times a day - these were to keep her pupils dialated All Day - to prevent Scar Tissue from forming! Well, when that didnt take the cells away, we started Remicade Treatments/Infusions. These are 4-6 hr treatments done - at the Hospital, through an IV. (All this with the Methotrexate Shots we have to give her 1 time a week). She hates these & so do we! They Both are listed as Chemotherapy Drugs and this Disease is very expensive.

We had no idea that this disease was even out there, yet almost 300,000 kids have some form of Arthritis! It seems to be one of those diseases that no one knows about, but should. Early diagnosis is the key, but some states dont even have a Pediatric Rhuematologist! Alabama finally got ours (Dr.Cron, from PA) this year. From what Ive read, many Pediatricians dont even know enough about this Disease to recognize it, so many kids go undiagnosed for a long time, further damaging their joints. We have been fortuante that Bailey was diagnosed early, but never imagined that a red, swollen knee - that was warm to the touch, would ever lead into all that she has had to go through (Knee surgery, Steroid Injections, Multiple Medications, Eye Drops, Steroids, Weekly Injections, Being Put to Sleep for 2 MRI's - 1 of the Jaw, & 1 of the Knees, and Remicade IV Treatments/Infusions, besides all of the bloodwork!) She is one tough little girl, who has a contagious smile!

Its impossible to write every detail of our experience, but her Blog Page & Video, and Pictures & Slideshows, hopefully give some Glimpse of what this Disease can do, and why its so important to make other people aware of it & know what to look for.

Bailey is why we have formed a "Walk Team" this year, in the May 10th Arthritis Walk. We are walking in Honor of Bailey. Our team is called "Baileys Buddies". We hope to raise money, and especially awareness for this chronic childhood disease. We've also learned that it is especially hard for toddlers to tell you that they "hurt", because they've lived with it a while & cant distinguish between normal & pain at times. They kinda grow up hurting & some of it becomes "normal". - That also makes this a scary, silent disease and makes it even harder to notice. As a parent, there is no way of describing the thoughts that race through my mind on a daily basis. Fear, of what the next blood test will show, ,,,,Anxiety of the Next shot I have to stick her with,...Dread of the next Remicade Treatment (sometimes, the walk to the infusion clinic seems like a five mile walk and like someone is punching me in the stomach the whole way), Fear of the next eye exam, - are the cells/floaters back? Can my 3 yr old see the entire Bird and all his Yellow feathers, or is there spots in her field of vision?, Will her knees grow the same? Will she be able to run/walk like the other teenagers when she gets that age? Will these strong meds affect her organs? Its like a horrible nightmare that plays over & over in my mind, ---- but then I see her running around the yard, chasing the Dogs, Playing in her little pool, falling down, getting back up again,....and I think, - Would she be able to do all this WITHOUT all the Meds, Shots, Injections, etc....? Who knows? All I do know is that there needs to be more research for these kids & without awareness, there will be no research.

thewarrens-baileysmama.blogspot.com (Baileys Blog Page)

Thank You,
Kim Warren (war3006@charter.net) (205) 841-0519
(205) 873-3232

Warren Family - Baileys Blog "The Little Hero!"

Thursday, January 29, 2015