World Arthritis Day

Today, October 12th 2011 is World Arthritis Day. A day to bring awareness to a disease affecting nearly 50 million Americans and 300,000 children. That's just in America! I really would like a WORLD number affected. We ask for just one day, one day out of 365 that the world hear and learn about this disease. Not a month, a day. One day to wear blue, light up blue and talk, out loud, in public about ARTHRITIS. It is almost as though people are ashamed. Arthritis doesn't get the same glamour as some other diseases. I just don't understand this. Not that other diseases aren't worthy of the attention and awareness, but really. In the month of October, try going anywhere without seeing the color pink. A few months ago it was another disease asking the world to go blue, and the world did. And who doesn't recognize the awareness color of yellow and what that represents. All of these diseases are deserving of attention. I repeat, ALL OF THEM. Including ARTHRITIS. Maybe, just maybe, one day my daughter's disease will get the attention it needs. Or better yet, a cure will be found and we can make this all a distant memory.
She asked me this morning, "Why is today World Arthritis Day?". So that people will know, so that maybe they will learn and understand.

Is it too much to ask?

I just want her well. I want her to know a day, a full 24 hours of feeling WELL. I know that she can't remember what it's like, because lately, I can't even remember it. I can't remember what she was like before she got sick. Was she always this angry? Was she always this emotional? What were her habits? Did she always act this way? I feel like I am mourning the loss of my WELL child. Now, do not get me wrong. I do realize that she is much better off than some children, I get that. But some days, that just isn't enough to soothe the ache that is in my heart. I WANT HER WELL. Is it too much to ask? I used to pray for, hope for remission for her. Remission you say? Like cancer?? YES, remission, like cancer! Because, like cancer, Juvenile Idiopathic Arthritis has NO CURE. So, as of right now, all that we can hope for is remission. As of right now, she can never be 100% rid of, cured of this disease. This disease that encompasses and endangers her entire body. At the JA Conference this Summer I got a new perspective on remission. I was able to meet many teenagers and young adults that have never known remission, yet are leading full, happy lives. I then realized that if Jenna never went into remission, as long as she was happy, I would be okay. Well, today I'm not feeling it. Today, I WANT HER WELL. Is it too much to ask??
Today I feel like screaming as loud and long as I can until I can make people understand what we go through. Today I feel anger and resentment at the hand we've been dealt. Tomorrow is another day...

Blessed & Thankful

 Today we were able to go back to the church in South Carolina that so generously funded our trip to the Juvenile Arthritis Conference. The two words "Thank You" will NEVER be enough, they will NEVER express our gratitude to these people. Without them we would not have been able to attend the conference. The experience of attending is indescribable. The impact that it had on Kailey, Jenna and myself is intense. While telling of her experience today to the group, Kailey broke down in tears. (okay well I did too but that's besides the point) She told them about her new friend Parker and how amazing he is. She said that Parker is her hero, her inspiration. She wants to be a better person because of him. No matter how sick he is, no matter how much pain he endures, he remains happy and positive. She said that now when she thinks about complaining or she hears another kid complaining, she wants to say, "HEY, GET OVER YOURSELF." For Kailey, this is pretty big. :) In Jenna we see a better understanding of her disease, it's hers and she needs to own it. For me, the bonds formed FAR out way the educational experience. These other Moms are what will get me through this. I just wish that I could somehow express to this group of folks at the United Methodist Church in Fort Mill SC how so very thankful I am. We are TRULY blessed.

Can someone please throw us a line....

...because I feel like we are sinking. It's been a rough couple of weeks. The good news is, physical therapy is going well, Jenna loves Miss Shirley. She has her custom made orthotics in her second brand new pair of sneakers in as many months and she loves those too. She is a flip flop and barefoot kind of girl so I though this would be a battle. She LOVES to wear them so I guess that means they feel good.
Now for the bad; Jenna "Bean" is having her surgery this Wednesday. She needs tubes in her ears and an adenoidectomy; routine surgery for a normal, healthy child. Life with a JIA child is NEVER normal and or routine. To prepare her body for surgery her rheumatologist wanted her off her MTX and Humira and the ENT wanted her off the Motrin. The rheum felt that given how long she has been on them, 2 skipped doses shouldn't affect her at all if any. WRONG. Friday May 20th was her last given dose, Friday May 27th was her first skipped dose. By Tuesday May 31st she was miserable. She came home from school complaining that her knees hurt and she wasn't able to fully extend them. I tried to get her into the tub to loosen her up, but she couldn't extend her legs to get them under the water. She laid on her hip and that worked. Since then we have noticed her fatigue worsen. All this time we thought it was a side effect of her meds. Obviously it's the disease. Also joining in on the flare up party is both feet, one ankle, both elbows and a random few digits, this is on top of both knees flaring too. Miss Shirley could see that she was compensating for pain even while doing her PT in the water this past Saturday. Her teachers at church yesterday could see that she was tired and she simply wasn't herself. She has a very grim, stone set face. If she can get through the surgery with no issues then she can have her meds again this Friday. I pray that they work just as quickly as they stopped.
Now, seeing her suffer is bad enough. Knowing that she CLEARLY is nowhere near even a medicated remission is what stinks the most. I want her OFF these meds!!!!! Seeing what a couple skipped doses is doing to her, now we see we still have a LONG road ahead. ):

My 1st Guest Post

I have had the very distinct pleasure of "meeting" some incredible people while on this journey with my Jenna "Bean". One of them is Jess. Although we have never actually met, she simply exudes a strength and light that can be seen or maybe felt even through the computer. I know, that sounds kind of strange, but seriously, she does. I felt compelled to know more about her journey, her story. So, a few months back I asked if she would be willing to put something together for me. She graciously accepted my invitation to share her story here. I didn't make it through the first paragraph without crying and by the end the lump in my throat was so big I could barely swallow past it. The following is Jess' story, in her words.

My name is Jessica, I am 16 years old, and I am battling Polyarticular Juvenile Rheumatoid Arthritis (JRA). My journey began at the tender age of 2. One afternoon, my mom came home from work to discover my right knee very swollen. She rushed me to the Johns Hopkins Hospital ER where x-rays, labs, and a bone scan (at just 2 years old, I was able to complete this test without any form of sedation) were performed; my right leg from the hip down was placed in a cast as the doctors were puzzled about what was causing my knee to be swollen, they simply figured I had broken my leg. After seeing a specialist, a week later we received the diagnosis of Pauciarticular JRA. I was started immediately on Naproxen, Methotrexate (MTX), and Prednisone to combat the disease. Despite the early, aggressive treatment, within just a couple of short months, the inflammation had spread to literally almost every joint in my tiny body. My disease was then labeled as Polyarticular JRA. At such a young age, I quickly adjusted to my new “normal”. I learned to cope with the excruciating daily pain, injections every week (I tried my best to be brave), and many visits to the Pediatric Rheumatologist and Pediatric Ophthalmologist (did you know that JRA can cause eye inflammation?). Another hurdle I learned how to jump early on was getting monthly blood work; I can safely say by age 3, I became a pro… I completed my first tear-free blood test! I was catching on quickly…

                Around age 4, my mom and I relocated to warm and sunny South Florida. Despite remaining on the anti-inflammatory, MTX, and steroids for about 2 years, my joint inflammation remained and even progressed. My medications were increased and I started Physical and Aquatic Therapy. I loved Aquatic Therapy… That heated pool was the only place I was free to move and be almost pain-free. Physical Therapy on the other hand was a nightmare, I did not like it! Sessions would wear me out and cause me to be in agonizing pain… But after 6 months of enduring this treatment plan, the majority of my inflammation was gone. I slowly improved and for the first time since diagnosis, I was able to begin weaning off the Prednisone. Eventually, I had officially achieved my first medicated remission! I still required treatment with the MTX and anti-inflammatory, but I was finally able to experience life inflammation-free. This remission, however, was short-lived. Just a few months later, the inflammation came back with a vengeance; my Rheumatologist suggested I have two cortisone injections in both knees. I underwent this procedure at 5 years old without any form of anesthetic. Unfortunately, the swelling did not respond at all to the steroid joint injections. My meds were increased again, and we found ourselves dealing with the beast – Prednisone – yet again. This trend continued for the next couple of years – I would begin to flare, be placed on steroids and have my MTX dosage increased (sometimes I was given upwards of 30mgs), then the inflammation would get better and meds would be decreased… Only to find myself flaring yet again. This vicious cycle was frustrating because the range of medications that could be given was limited and, as a result, I ended up on steroids and higher doses of MTX for every single flare. Regardless, I remained very active! I loved dance, played soccer, and karate was my favorite sport. I knew I had arthritis, but I also knew I’d never let it have me!

                Around age 11, I experienced yet another flare after doing well for a short period of time with minimal inflammation. My MTX was increased (again) and this time, my liver had a nasty reaction to the chemotherapeutic drug I had been on (without break) for the past 9 years. The Rheumatologist decided he wanted to biopsy my liver. I was placed on steroids (again) and my MTX dosage was decreased in hopes of showing improvement. A few months later, I was told I had achieved my second medicated remission! Prednisone was ended then, and for the next 3 years I continued to take my MTX, but I lived completely without inflammation.

                I felt great... My mom was ecstatic… We actually thought we had actually conquered this awful monster some like to call “Arthur”… Until December of 2009 when a small amount of inflammation was detected in my right knee. Around this time, I was also diagnosed with kneecap misalignment in my right knee and osteoarthritis caused by the damage the JRA had done to many of my joints. In January of 2010, I started having chest pains and it was discovered that I had high blood pressure. Because JRA can result in extra-articular manifestations that include inflammation of the internal organs, I was quickly sent to a Pediatric Cardiologist and a Pediatric Nephrologist for evaluation. After many tests, the worst possibilities were ruled out, and I was diagnosed with secondary hypertension and costochondritis. The swelling in my knee was minimal, but stubborn, and it remained that way until the summer of 2010. I had a massive flare that left me barely able to walk. It was difficult to relearn to cope with the pain I had been without for so many years. I was unable to volunteer with my sweet kiddos at the Children’s Hospital I visit every Friday, hang out with my friends, and enjoy my summer. That is when we decided to start on a new biologic medication called Enbrel. When I was younger, these types of medications were either unavailable or very new, so they were never an option. Within 2 days of my first injection, I was able to move again! I was so blessed to have such a great response as many kids with JRA don’t respond as well to medications and need much more potent medications.

                I was doing well on the Enbrel for a while, almost close to a third medicated remission. Then, other issues started to arise. I had been dealing with GI problems for about a year, but around November of 2010, they started to get worse. I was referred to a new GI specialist who decided to perform some tests. She took a total of 11 biopsies, 6 of which showed mild inflammation. Today, my Rheumatologist believes this may be an indication that I am in the early stages of developing Crohn’s Disease; having JRA (an auto-immune disease) increases your risk of developing other auto-immune disorders. I am to begin a new medication called Humira on June 15^th, 2011. As if that’s not enough, due to all the anti-inflammatories I had taken over the years, I now have Gastroesophageal Reflux Disease and a recent Gastric Emptying Scan confirmed a diagnosis of Gastroparesis (GP). I was started on Erythromycin to increase the motility in my stomach; sadly, the Erythromycin didn’t work. On June 2^nd, 2011, I am scheduled to have intra-pyloric injections of Botulinum Toxin (Botox) to help the GP; if this works, I will have Botox injections in my stomach on a routine basis. Unfortunately, due to the severity of my symptoms, my GI specialist believes I may also have a motility disorder of the intestines. Within the next few months, I will travel up to Children’s Hospital Boston for more specialized testing. What does this have to do with JRA? 14 years after diagnosis, I am still on Methotrexate, a chemotherapy drug. We don’t know what has caused these GI disorders… Perhaps damage from long-term use of such harsh medications? Only time will tell…

                Living with JRA is both a blessing and a curse. I don’t want to say it has taken away my childhood, but it has caused me to “grow up” a lot faster than most. When you are forced to confront pain, many pills, shots, and scary tests at such a young age, you are also forced to mature way beyond your years; I was often referred to as an “old soul” when I was little. Being a teen with JRA can be challenging. One of the most difficult things I face would have to be the lack of understanding that others have of JRA. Other kids think I’m overreacting when I’m limping when, unfortunately, it’s something I just can’t control at times. Perhaps having to take so many pills and give myself so many shots is even more difficult. The majority of my friends cannot recall the last time they got a shot… I gave myself one last Saturday. Having JRA has certainly taught me who my true friends are. I am so blessed to have such a supportive group of friends. My family, though, get me through everything. My mom is my rock and I’m so blessed to have her. She has fought so hard for me over the past 16 years and she is my best friend; I love her to death!

Today, I still battle with the same vigor as I did when I was first diagnosed with JRA. I am currently taking a total of 18 medications on a routine basis to manage my diseases, but I try not to let my JRA hold me back. I try to always look on the bright side and view my cup as “half full”. In a way, JRA has awarded me many blessings. It has given me compassion for others in pain; I devote much of my time to volunteer work, specifically with sick children. It has given me a greater outlook on life; I know my journey has been a long and tough one, but there are so many others that have it so much worse than I do. JRA has also strengthened my faith. Having JRA has allowed me to meet some pretty amazing people and inspiring little ones. I have gained new friends… Ms. Iris who draws my blood might as well join my family. JRA has also influenced my plans for the future. I have decided to become a Pediatric Rheumatologist and find less toxic and more effective therapies for children with Juvenile Arthritis. I am working hard now in school in order to accomplish that goal; the 300,000 children dealing with Juvenile Arthritis deserve it. Until then… We can’t fight this battle alone. We need help… How can you help? Donations to the Arthritis Foundation can bring us one step closer to the cure. We need more awareness for this disease. Before reading this, did you know that kids get arthritis too? Thank you for taking your time to read my story.

Jenna's Story

It all started one morning in July of 2008. It was a typical morning for us. Larry was getting ready to head out to work for the day and I was getting the 3 kids and myself ready to head to the beach for the day. As I was busy making lunches, gathering towels, toys and sunscreen, the kids are all running around the house in their bathing suits, Larry asked me, “Why are Jenna’s knees square?”. I thought he was crazy; it was the oddest question I had ever heard. I told him about that much and went on about what I was doing.

While at the beach, my Mother asked me the same question, “Why are Jenna’s knees square?”. It was as though time stood still and I felt like I was being sucked into a vacuum.  I figured there had to be something to it if both of them were seeing something. Some Mother I am huh? I called my little 4 year old Jenna over to me to check out these square knees. Hmm…maybe they are square. I then called over my 10 year old Kailey and my 7 year old Dillon. I wanted to line them all up and compare knees. Son..of…a…gun. Something was clearly wrong, yet nothing was bothering her. We spent the rest of the day at the beach as we normally did since Jenna seemed fine; I figured there was no emergency. The next morning I was able to get her in to see our pediatrician to check out these square knees.  She agreed that they indeed were too big and actually did look squarish. She said something isn’t right but that she didn’t want to jump to conclusions. She got x-rays of both knees that showed excess fluid and swelling. Uh…okay. She told us that the only thing that she is aware of that would cause that is Juvenile Arthritis but she was no expert on it and wanted us to see a rheumatologist ASAP. Uh…ooookay.

The dates get a bit sketchy and fuzzy from here but I believe it was within a couple of weeks to a month at best we were in to see a rheumatologist. He took some x-rays himself, ran some labs and did a physical examination. Keep in mind now, Jenna was ONLY four years old. The lab results confirmed the diagnosis of Juvenile Arthritis; his examination showed that she not only was affected in both knees but also a few fingers, toes, one elbow and one ankle. She was put on Naproxen in an attempt to control the inflammation in her joints. This turned out to not only be a failure but an epic failure. The Naproxen did nothing for her swollen, by now painful joints, but she also had a severe reaction to it. She developed sore, oozing blisters all over her extremities.  Unfortunately it took a few weeks to figure out that it was the Naproxen causing this. Once taken off the Naproxen the sores went away immediately. The Naproxen was then replaced with Motrin, she was scheduled to have the excess fluid drained from both knees, steroids injected into both knees and Methotrexate (chemotherapy med) was added to the mix. All in an attempt to gain some control over this disease. Remember, she is four years old. While the procedure itself was a nightmare, the draining and injecting worked WONDERS in conjuncture with the MTX and Motrin. She showed immediate improvement in all of her joints. And for the most part the swelling in her knees has stayed down. She did continue to have pain and some stiffness and needed 2 tsp of Motrin 4 times daily.

The labs that the rheumatologist ran in the beginning showed that Jenna was ANA+. He explained to us that this put her at a higher risk for developing complications with her eyes. What in the world?? Arthritis affects the eyes? Oh we had no idea the ride that we were in for. At her first eye check we were told she was all clear. Three to four weeks later we went back and she was in a major Uveitis flare up. This is the beast that proved to be our biggest battle. Jenna was put on eye drops to control the inflammation; I believe these were four times daily. At one point she was on three different eye drops but I honestly can’t remember all of them, how often she had them and what they were all for. I do however know that NONE of them are safe to use for an extended period of time. So, we had to find a systemic med that would not only treat the JIA, but also the Uveitis. Clearly Methotrexate was not going to work alone. At this point we added Enbrel to her med list. Enbrel is a once weekly shot, Motrin orally 4x daily and at that time she was taking her weekly MTX orally too. It felt like we were always in a doctor’s office or on the road. We had to take her to her rheumatologist , about an hour away every 6-8 weeks and she needed to see the Uveitis specialist, about 3+ hours away every 4 weeks! It was getting to be too much and nothing was getting better, rather it was getting worse. Over the winter months Jenna would wake up crying and refusing to get out of bed because simply getting up hurt her too much. We lived in Maine at this time and the winters can be brutal. If we had to go outside for anything I would have to carry her because her legs would freeze up. We felt as though we were banging our heads against a wall and for nothing!

We asked her rheumatologist if her felt that maybe a warmer climate would help her. He said that not only would it likely help her, but if we were interested in NC, he could get her into the Duke Children’s Hospital Pediatric Rheumatology clinic. The bonus is that the also have a pediatric eye clinic to see her and treat her Uveitis. One stop shopping. We researched them and saw that this is what we had to do for Jenna. We packed up and headed south, leaving behind all of our family and friends in June of 2009.

At her very first appointment the pediatric rheumatologist at Duke told me that her meds were ALL wrong and that she was so happy that we were here. Administering the liquid injectable MTX orally is not advised and Jenna is a clear reason of why, it doesn’t work. The Enbrel is not proven effective when treating Uveitis. Yeah, we figured as much since she had been on it about 8-10 months at this point with no sign of improvement. She also was not taking any folate or prevacid to counteract any side effects that she may have from the MTX.

Initially we tried just changing the MTX to injectable form to see if that would make any difference before we tried changing her from Enbrel to anything else. I wanted to take things slow. At her next visit however, there was no change in her eyes. Her joints were okay for the most part by this time with only minor swelling and pain.  Her MTX was increased from 0.4 ml to 0.8 ml and we made the switch from Enbrel to Humira. Her body did not tolerate the increase in the MTX. She had severe abdominal pain and her hair was falling out in clumps. I called the ped rheum and she backed her down to 0.6 ml, increased her folate and added prevacid to Jenna’s daily meds.  So by this time we are in about December of 2009, Jenna is not quite 6 years old yet, and she is taking 1 weekly injection, 1 bi-weekly (very painful!!) injection, and 2 sometimes 3 daily meds.

The good news is that the Humira worked!!! It cleared her eyes of the Uveitis, she was able to get off of those God awful drops that she had been on since fall of ’08 and she was showing more signs of improvement in her joints. She did have a rough time with infections in her ears, lungs, sinuses, etc. over the course of that winter. I think her body was working too hard at keeping up with the meds.

Her summer of 2010 was fantastic!!! She looked and felt better than she had in 2 years. It was so great to see and it almost felt as though we had a caught a break. Then fall of 2010 hit. I don’t know if it was just the shift in climate, but she started going downhill again. More pain, more fatigue, more frustration from this never ending ride.

Jenna’s meds remain the same at this time. Until she can be symptom free for one year, we cannot try taking her off of them. We are heading into summer again so I have high hopes of another great one! Jenna sees a pediatric PT once a week to help her regain some muscle mass that she has lost due to the JIA. She was fitted today with custom orthotics to correct some issues with her feet and ankles. I believe that after three very long years, we may finally be on the right path. I pray to God every day that we are.

May is for....

...Arthritis Awareness Month. Did you know that? Unless you are someone you know is impacted by this dreadful disease, I bet you didn't. Did you also know that there are more than 100 forms of arthritis? Bet you didn't. Did you know that Juvenile Arthritis is an AUTOIMMUNE DISEASE? Bet you didn't. Did you know that our kids (and lots of adults) have to take low dose chemotherapy as part of their treatment? Bet you didn't. Did you know that many of our kids hate day to day life because this disease makes them so different? Bet you didn't. For instance, a field trip means having to wear long sleeves, long pants, a wide brimmed hat AND sunscreen while your kid wears shorts a tee shirt and not a care in the world. Our kids have to miss school because your kid didn't get his vaccinations, so now there is an out break of chicken pox at school. Thanks. Our kids caught your kids cold because you felt he wasn't "sick enough" to keep him home from school. Now our kid has pneumonia. Did you know that the very drugs that treat our children, also make them sick? Bet you didn't. Or how about this, did you know that every Friday night I have to hold my baby girls hand while Daddy gives her her injections and she screams, "Please don't do this! WHY are you doing this to me?!" I bet....you didn't.
That video up there is of a sweet, BRAVE little girl named Jordan. Her family calls her Peanut because she is so small. So small, yet still SO brave! Oh yeah, did you know that this disease can stunt a child's growth? Bet you didn't.

Idiopathic

At some point, I don't know when, someone, don't know who, decided that we should call this crap disease Juvenile Idiopathic Arthritis rather than Juvenile Rheumatoid Arthritis. I have heard and read that the reason behind this is to better separate the adult disease from the childhood disease. Wouldn't the term JUVENILE in the name do that?? I suppose that I understand that if a child doesn't actually test positive for the rheumatoid factor than in fact it shouldn't be termed JRA. But does anyone really know what idiopathic means? Doesn't it make an already confusing disease a little MORE confusing?? About a week ago I was watching something on TV and the doctor used the word idiopathic when referring to the disease he was talking about. He went on to explain that idiopathic simply indicates that there is "no known cause or origin". HUH? THAT'S what it means?! Boy did I feel ignorant. I accepted a term for the chronic illness that my child battles without even knowing what it means?! *smacksforehead* I have been thinking on this, stewing on it since that day and decided to post this. I mean, I can't be the ONLY one....can I??

id·i·o·path·ic

   [id-ee-uh-path-ik]  Show IPA

–adjective Pathology .

of unknown cause, as a disease.

I continue to be amazed by the great awareness videos being made. Here is another one that was a collaborative effort of 3 Moms, the Mothers of the 3 girls in the video. THANK YOU Stacey, Kristie and Danielle! For more information please visit The International Autoimmune Arthritis Movement website.

Ears. PT. 504

One thing at a time, let's start with her ears. Wednesday of this week we saw the ENT to see if we could get to the bottom of her chronic ear infections. Basically one really long infection since February. She just finished her 4th round of antibiotics today. He confirmed what we already knew, that she has a build up of fluid in her ears. He suspected, as we did too, that her adenoids were enlarged making it impossible for anything to drain. She has had this nasty junky cough and snotty nose since last Fall, I guess that's all part of it. So he did an xray to check it out and sure enough they are enlarged. He also said that she has "significant hearing loss" which was surprising since we thought her hearing had come back! I was so shocked that I forgot to ask if this is permanent? Anyway, the game plan is to TRY to shrink the adenoids with nasal spray over the next 30 days and then we can avoid surgery. I'm all for it but I have my doubts. I suspect that in a matter of days, after finishing the antibiotic, the infection will return, as it has since February. Last week we were told by her Rheumatologist to hold her MTX. I am waiting on a call back as to whether or not we are to hold tonights MTX and Humira or give it. Also, if she does need to adenoidectomy and tubes inserted into her ears, do we stop then too? For how long? Over the last couple of days we have noticed a HUGE change in Jenna. Her energy level and attitude are incredible. I guess the MTX takes a larger toll on her than we realized! It's nice to see this side of her again. But, as my husband pointed out, this also means that she may be in for some serious pain. Time will tell. I want to emphasize her that it is the meds that control and treat her JIA and Uveitis that have made it impossible for her to fight off these infections. She is at risk and will suffer with any decision we make, whatever the outcome, she suffers in one way or another.


Now, onto PT. We have met with the PT only twice now and have been left to work on things ourselves at home otherwise. Each time we have met with him I feel as though he isn't listening? Or doesn't "get it"? Not sure, but something felt off. Jenna has been struggling with just basic leg lifts, particularly on her left side. This does not mean that she complains or tries to avoid doing them. On the contrary, she loves to. I pointed out to him that she was struggling, he suggested that maybe she isn't trying. Way to get my hackles up Dude. He tried giving her some different options for exercises and stretches, but she wasn't able to coordinate her body properly. It was getting frustrating. So, after talking to my amazing group of Moms I was referred to and contacted a local PEDIATRIC PT...DUH! Will we ever learn?? I am sure this other guy is great with his adult patients, just not my kid. I called this woman that specializes in peds and I loved speaking with her! I know this will be great. She addressed all of my concerns and I agreed 100% with everything she told me. We meet with her next Saturday!! Can't wait!

Last but certainly not least, the dreaded 504. Have you been following along? we have been trying to get this done since last year. Yep, last year. Just search 504 up at the top of the page, it will pull it all up. ;o) To sum it up for you, her school didn't feel she needed one nor was she entitled to one. I let it go for a bit and was stewing on it. Then after speaking with the folks at the Arthritis Foundation, I was urged to push on for it and they would be right there with me. I love them!! So I emailed Jenna's teacher to give her the heads up of what we were prepared to do if they wouldn't comply, suddenly, they were eager and willing. We went from them not even wanting a letter from an AF rep or any pamphlets or handouts on her diseases and meds to wanting to MEET with a rep in the hopes of learning more. HUH?! Oh well, whatever, let's go! So, Larry and I, along with an AF rep met with the Principal, teacher and school nurse. Someone....was noticeably absent! The guidance counselor. I don't know if that was intentional with the scheduling but it certainly worked in our favor. The entire mood of this meeting was completely different! I still don't think that they agree with a 504 for a 1st grader. They seem to think her medical action plan is sufficient, but we felt much more support and understanding from them and for that I am thankful. If anything new comes up between now and the end of the year we will meet again, otherwise  we will meet again right before school starts up again in August.

Another "ARTHRITIS CHARITY AUCTION"!

We have three items up for bid on Ebay!! My husband was recently helping our neighbor move and they came across two vintage camcorders and one vintage instant camera. Our neighbor knew that we were raising funds for the Arthritis Foundation and he told us to take them and see what we could get for them. Unfortunately one of the camcorders seems to not be in working order but it's still a really cool piece and who knows? Maybe YOU know how to fix it! Our last "ARTHRITIS CHARITY AUCTION" netted us $75 that we were able to donate. We are hopeful that these vintage finds can bring in a hefty donation. Think of the photographer in your family, think of that collector that you know, and then dig deep. Here are the links:
Continental Colorshot 2000

Sankyo Sound XL-220 Super 8

Minolta Camcorder

Here is the why for all this: (facts from the AF)
*Nearly 300,00 children under age 17 are affected by juvenile arthritis
*JRA, affecting more than 50,000 children, is the most common form of juvenile arthritis and one of the most common childhood diseases in the United States.
* Arthritis and related diseases, such as JA, cost the U.S. economy nearly $128 BILLION annually in medical care and indirect expenses.

Common Symptoms of JA:
*PAIN, swelling, tenderness and stiffness of joints, causing limited range of motion.
*JOINT CONTRACTURE, which results from holding a painful joint in a flexed position for an extended period.
*DAMAGE to joint cartilage and bone leading to JOINT DEFORMITY and IMPAIRED USE of that joint.
*ALTERED GROWTH of bone and joints.

Did you know:
*The Arthritis Foundation has granted $380 MILLION to research across the country since 1948.
* Over the past 10 years the AF has funded over $3.2 MILLION in the Carolinas. Including but not limited to, aquatics programs, tai chi programs, Kids Rheum which is an INCREDIBLE support system!
* It costs the AF $1200 to send a family to the Juvenile Arthritis Conference.

"ARTHRITIS CHARITY AUCTION"

C'mon, you know you want in! Simply getting folks to shell out cash, even $10, is proving to be nearly impossible. So, we are having to get creative. I have been trying to get people to buy some Scentsy (link is in the side bar to your right) so that I can donate 100% of my commission from the party, sadly only 2 people have ordered, so, so far I can donate about $3 from that. We are trying to pull together a car wash/yard sale with a lemonade/cookie stand in the next few weeks as well.
And here is the latest, a Dell laptop up for bid on Ebay through Monday!! This was our 1st ever Dell laptop and it still runs GREAT! Anyone that knows us, knows that we take care of our things. Don't miss out!!

This was a true labor of love....

Where do I start???

It's all good news, I just don't know where to start! I feel so behind. Okay so we'll start with lab results. This is something that I had been very worried about, given the fact that she has not had proper labs done in over a year. They....looked.....GREAT! Sedimentation rate is WELL within normal range, WOW. Platelet count is only SLIGHTLY elevated, not a huge concern. The only other thing out of whack was her Alkaline Phosphatase. The rheum nurse explained that in kids it can be high simply based on the fact that they are generating a lot of bone. I'll take it. So, her body seems to be tolerating all the meds AND there apparently is no hidden inflammation. SO, why does she still feel so miserable??
Well, on Thursday she had her first PT session. She seemed to be feeling pretty good that day so I was sure he would think we were nuts for bringing her. Plus she was in one of her, "NO nothing hurts now or ever" moods. *SIGH* But as he was talking to her and checking her out, he was able to somehow by poking around on the back of her knees, reproduce the pain she feels and she admitted that YES, that's it. She then fessed up to her feet bothering her by days end by but that was ALL she was willing to own up to. One of the things he had her try was to stand on one foot and bend down to touch the floor and then stand back up. Most kids SHOULD be able to do this with only slight wobbling. She fell over. Partly goofing off, partly that her muscles are weak. He also pointed out that she has flat feet, virtually NO arch. We had been buying her Keds because she said they were soft and comfortable on her feet. She has always been so picky with shoes. He said they were all wrong for her feet and therefore contributing to her pain. AWESOME. He referred us to a specialty shoe store to have them properly fit her for a well constructed sneaker that would provide good stability. They guy at the store was awesome and we got her some GREAT sneakers! Never heard of the brand, "Brooks", but we will for sure be back for more when she outgrows these! Okay so back to PT. He also discovered that her hamstrings are super tight! She can't straighten her legs except when standing. With all of her hypermobility, her hamstrings are tight?? She couldn't even get into a proper position to stretch them. This will take some work. So we came home with a sheet of exercises to strengthen her hips, thighs and knees as well as stretches to loosen up her hamstrings AND instructions to get her shoes (which we did Saturday). He said he wanted to wait three weeks before seeing her again to see how much progress she could make with better shoes and doing her homework. The exercises are tough on her and the stretches painful but she HAS to do them and we HAVE to make her.
Then on Friday morning I went down to Charlotte to the Arthritis Foundation offices to meet with the person in charge of the Let's Move Together Walk. Our team is not doing so well with getting new members OR most especially with raising any money. This has had me really bugged and I thought for sure I was missing something. I had a GREAT time meeting with Stefani! I left there with some fresh ideas and some fresh energy! I am definitely feeling more positive. It's just going to take some creative thinking. While discussing different possibilities, she mentioned that they would be more than willing to go into Jenna's school to do a presentation and get them involved. I told her GOOD LUCK. Not only have I tried repeatedly and unsuccessfully to get them involved, we can't even get a 504 plan out of them. The more we talked about that, the more outraged she became. Yep. She said they're on it now. Eager to see how this plays out. She suggested 1) Requesting a transfer OUT of that school 2) Contacting a lawyer since what the school is doing is highly illegal. I told her that I would wait and see what happens with the AF contacting them. If they still won't budge, then we will take action. I just left there feeling so good, knowing that we aren't alone. I also left with some great posters, "vintage" AF walk t-shirts, shoe laces and water bottles . So excited about the possibilities! OH, I also left with packs of paper "bones" to sell to raise money! I brought them to our pharmacy and they said they would be more than happy to sell them for us! You know, "Would you like to but a bone for $1 to help support the Arthritis Foundation?" Shyeah! We have some more stuff in the works too. Simply asking people to donate doesn't seem to be working so we are going on to plan B.

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!

I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.

Beautifully Heartbreaking

Lots of things went through my head while watching this. Mostly they were very ugly words. This disease, and the fact that no one seems to care makes me so angry. WHAT IF THIS WERE YOUR CHILD?! This is hands down THE best JA video I have ever seen. Thank you to Esella's family for putting it together.

Breathing a Sigh of Relief...

....so far anyway. I should have her lab results tomorrow, or the beginning of next week. Once I have those and they look okay, THEN I can really breathe I sigh of relief. Overall, it was a really good visit.

The ride there was better than it used to be thanks to our "new to us" vehicle. The highways here are still a nightmare, Larry got to witness this for the first time and he was amazed. But, it was definitely a more comfortable, smoother ride. Jenna was for the most part comfortable the whole way. A few times when I looked back she was grimacing and trying to find a comfy position, but overall she did okay. Two hours of sitting still isn't easy on anyone really.

We got there a little ahead of our appointment and were taken in almost immediately. We saw a new doctor, I can't for the life of me pronounce his name, but he was very nice, very thorough and we all liked him, we shall  call him Dr. D. He took the time to answer all of our questions and answered them in ways that we were able to understand. Gotta like that! Jenna was loose as a goose, no pain, no stiffness....NO SWELLING, NO signs of ANY active arthritis!!! WOOOOOHOOOOOO baby!!!!!!!!!! SO pleased to hear that. However, he said that given what we told him about her Fall and Winter, she likely had active arthritis then. SO, that means that yesterday was day zero on the road to being able to wean her off of meds. BOO! That is a big bummer as I thought that we started that in December of 2009 but, she is doing well now so I need to focus on that. We talked a bit about her hyper mobility. He seemed pretty amazed at how far he could overextend her joints and it not hurt her. He said that the pain that we are describing her as having (pain behind knees while seated, pain from extended walking, etc) is from her hyper mobility, not from her JIA. The good news of that is that he wants to put her in physical therapy. FUNNY, I asked the doctor that we wasted a year on about that and he said no. Hmmm....so anyway, the goal is to strengthen her muscles and tighten her ligaments and therefore, eliminate her pain :) I called today to set that up, she starts next Thursday, they said three times a week to start. WOW. Labs went great. She held still, he was in and out in the blink of an eye! I think food was her motivator but by the time we were done with the lab we were already late for her eye appointment!

On to Duke Eye Center.....we only got slightly lost in the hallways :p We arrived for her appointment thirty minutes late but they took us back fairly quickly. The resident that saw her first was great with her. He is in the right field for sure. I wish ALL peds doctors were like that. He said everything looked great to him but he knows that Dr. W likes to get a better look with another machine. It had been well over a year since they last dilated her to look behind the retina so we did that too. UGH. Poor kid apparently still remembers all of her nightmarish experiences with the doctor in Maine because she fought us like a wild animal just trying to get the dilation drops in :"( AND, they didn't take the first time, so that was a total of 40 minutes waiting for her pupils to dilate. By this point it was 2 or 3 in the afternoon, we hadn't eaten anything, and Larry had been up for 24 hours. Awesome. But anyway, Dr. W took a look with his "better equipment" saw NOTHING, looked behind the retina, saw NOTHING!!!! WOOOOOHOOOO! Eyes are still clear and holding strong! I am so very grateful for that especially given the struggles that I know so many other parents are going through right now trying to find the med combo that will work. We have been so fortunate. Dr. W said that as far as he is concerned she can start weaning anytime and he will send that recommendation over to Dr. D. But, he also said with a smile that he knows they won't go for that :) LOL!

So, that's it! We go back in three months unless something new comes up. She starts her PT next Thursday. Lab results should be ready tomorrow! Thank you to everyone that has been praying for my sweet Bean. It means more to me than I could ever express.

Oops sorry, just remembered a couple more things. We spoke with Dr. D about our troubles getting a 504 in place for Jenna. Of course, the social worker wasn't in yesterday. She will be back on Friday and he will give her the info and have her call us so that she can take care of it. This will definitely be needed now with her having PT as the latest they schedule is 5 pm and those are difficult to come by. So I may need to pull her early or bring her late. Also, I forgot to ask about the CARRA registry :( Very disappointed in myself for that. Next time though, I promise. And lastly, her official diagnosis now is extended oligoarticular juvenile idiopathic arthritis. Dang that's a mouthful!

To Each Their Own

Since her diagnosis nearly three years ago, we have heard numerous alternative therapies to treat Jenna's diseases. I appreciate that people think they are being helpful, I really do. But in all sincerity, do they really think that they know more than the doctors? In the beginning I would be intrigued when someone would offer something to try and I would research it. But, I never really felt safe or secure in the ideas. If it were me? Heck yeah I would try alternative therapies! But for my child? Is it really worth the risk if that therapy fails? Especially when you consider that her arthritis isn't only in her joints, it's in her eyes! Would you really, I mean really risk your child's eye sight just to try something that may or may not work? And before you say it, YES, I knooooow that the meds that we inject her with are dangerous. I know that, believe me I know and I hate it. But for us, when we look at everything and weigh it all out, the risks balanced with the proven success of these meds wins out hands down over anything else. Is it maybe just that people don't understand that this is an autoimmune disorder? Maybe they don't even know what an autoimmune disorder is. I know that it can be confusing, heck, nearly three years in and I'm still learning! We can't simply treat the inflammation and the pain. We need to treat the disease. Your immune system, that thing within your body, designed to protect you against illness and infection actually attacks your body therefore making you sick when you have an autoimmune disorder such as juvenile arthritis. One specific alternative therapy that I have heard of a few times but never paid attention to is antibiotic protocol. It's come up a couple of times in my arthritis family circle (love them!). I never looked into it because it simply didn't sound sensible to me. For one thing, you use antibiotics to kill a bacteria making you sick, there IS no bacteria making these kids sick. For another, how many times have we heard that antibiotics are being over used in kids and therefore a great many of them no longer work?! Most pediatricians refrain from prescribing antibiotics anymore unless for serious infection because of this. So why would I treat my child's autoimmune disorder with antibiotics? I doesn't make a bit of sense to me. Well, there is a group that has made frequent visits to my blog. I keep seeing them pop up but never thought to look into who they are or what they are about. The name of their site didn't ring any bells, but it possibly should have. Antibiotic protocol is right in the name. Finally, the other day it registered with me so I went to their site and looked around. They are of the belief that antibiotic protocol is the ONLY route to take and basically we are all fools for thinking anything different. As the title of this post says, "To Each Their Own". Treat your child's disease however you like, it's not my place to judge you, shame you or mock you. Shouldn't we get that same courtesy? And why hide out in the shadows? If you are going to visit our blogs, our discussion boards, etc., Why not speak up? You see what they are doing, and there is only a handful of them, they visit our blogs and boards, not to help us, not to educate us, but to gather information about us and our kids to share amongst themselves. WE make our lives, our stories, our information public because we want to reach out to people, have people reach out to us and all be there together for on another on this really crappy road. Why are they hiding? Not only is my blog public but I also don't moderate comments. I have been told that I am crazy for doing this. I have nothing to hide, I'm only here to help. On their site, not only do they keep certain areas under lock and key, it states clearly, "Don't mess with us. No exceptions. The WTF Management Team.". Well now, isn't that just a warm and fuzzy welcome? So basically if you don't agree with what they say, don't bother registering, becoming a member and voicing your opinion. I can't even find anything on their site or on another that they recommend that even says how AP works. What do you take? How often? For how long? They talk a lot but don't actually say anything. I plan on asking Jenna's doctors at Duke Children's this week about AP because I like to be educated and well informed. I'm actually very eager to hear what they have to say about it. My blog will continue to be public and comments will continue to not be moderated. I have a lot of people finding this blog by searching key words. If I can help even one person feel as though they are not alone then it's worth it. And if you have something to say? Say it. I won't delete your comment. Just be prepared for the comments that follow. I've been attacked once already on here, we Moms stand STRONG and UNITED.

Is it Spring yet????

So I was I mentioned here in this post a couple of weeks ago, we somehow managed to get through Winter fairly unscathed. But, I figured, one ear infection is still really awesome considering all the crud going through her classroom. She started a 10 day course of Omnicef on Wednesday the 9th and finished on Saturday the 19th. On Sunday the 20th my Mother flew in with my 12 year old daughter from Maine, LONG story not for here, and I was really hoping we could all have a healthy visit for the upcoming week. Having JUST come off an antibiotic, what were the odds really of Bean coming down with anything?? HA! On Wednesday the 23rd Kailey, my Mom and I were having a "big girls" day out at a mall about 45ish minutes away while the small ones were at school and Daddy was sleeping (after working all night). Around 1:20 my phone rings and it's Beanz school on caller ID, CRUD. I answer, and it's her teacher, sounding very apprehensive on the other end, DOUBLE CRUD. She swears that Jenna was FINE all morning, then after lunch Jenna told her she was tired so she told her go ahead and lay your head on your desk and just rest. She said like *THAT* she was asleep. She went over and felt her and she was burning up. She took her temp, 103.7. She called me immediately but of course we were 45ish minutes away. I tried calling Daddy repeatedly, but his phone was silenced. Urgh. When I got to school she was asleep in the nurses office, Poor Bean. By this time of day I knew not to even bother with her peds office so we went straight to Urgent Care. Poor thing couldn't stay awake, her breathing and pulse were way too fast and temp still up. Same high temp as with the ear infection yet her body reacted totally different. Since her throat was red and pussy they swabbed her for strep, no brainer, it was positive. Back on antibiotics! She was off for less than a week! Considering all this, I made the executive decision to hold her MTX this week. This way her body can have a chance to fight off ALL the infection, regain some strength, and then we'll hit her with Humira and MTX next Friday.

A Bit Of He Said She Said

A good friend of mine has a great saying, it goes something like this, " I believe that there are two sides to every story, and that the truth lies somewhere in the middle." I love that saying and I believe that in most instances, it is applicable. However, there are some things that you just can't argue the facts on. You can't fight statistics that are backed by extensive scientific research. Those of you living with a chronic illness or parents to a child with a chronic illness, how many times have you been told that there are more natural, better ways to treat the disease? All of you right? Wouldn't it be great if that would work? I mean really, who wouldn't prefer to treat a disease with natural, from the earth products?? Sadly, those of us who are in this, know that can't be done, it won't work.

A couple of weeks ago an article started circulating on Facebook and Twitter. Unfortunately I can't find the link to the newspaper article, just the blog post. Doesn't matter, still the same rubbish. This piece of rubbish was written by a doctor of Oriental medicine practicing Korean Constitutional Medicine in California. Now, I admittedly know zilch about Oriental medicine. I had never even heard of it before reading this blog post/article. I do however know autoimmune disease and more specifically Juvenile Arthritis. Therefore I can easily say with the utmost confidence that what is written is total rubbish. Here are a few key points just to give you an idea.

"JRA is usually temporary and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."

FALSE! It WILL last a lifetime until a CURE is found! The strengthening of the immune system would only make it worse since the treatment of JA is suppressing the malfunctioning immune system!

"It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences."

Yes clearly an unplanned, unwanted pregnancy caused some kids autoimmune disease, of course. And please, parents, be sure to only conceive your child on optimum weather days okay?? SHEESH!

"The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection. "

Yes obviously daily massage can help ease pain, better nutrition is ALWAYS key for ANY child, acupuncture sure, herbs, whatever, ADDED LOVE AND AFFECTION?! DUDE, if love and affection could cure my child, SHE NEVER WOULD HAVE BEEN STRICKEN WITH THIS!

Then yesterday a friend posted another article. This one, this one makes sense. There are no facts to be disputed, no fluff, just a simple four paragraph article written by a woman living with autoimmune disease since she was a young girl. She writes wondering what it's been like for her parents. Now she is a married woman and has children of her own. She says, "I would sail over the moon to do almost anything for my kids.". She also says, "I often think about the roles of my parents in my battle with chronic pain and illness. I had never considered their feelings before, or what they must feel about how I am doing, because quite honestly, my battle has been very overwhelming because of the level of pain I deal with every day. " AS the parent of a chronically ill child, I cannot begin to tell you how much her words mean to me. She goes on to say, " My Mom is my role model for motherhood." and "My parents are my heroes." I can only hope that Larry and I are doing even close to this well for our Jenna "Bean". I tell you this kills me, it KILLS me everyday that I can't take this from her. I feel it's my own personal failure. WOW....where did that come from??? Well there it is. I guess it's been inside me somewhere, my heart or my head. I feel as though I have failed her miserably, in the biggest way possible. I'm not protecting my child from the monsters in the closet so to speak. Her JRA is her monster in the closet and I can't make it go away with a hug and a kiss, with story book or a song sung at bedtime, with a prayer or a favored stuffy. Mommy can't fix this. I would give my HEART to her if it would fix her and make her well.

I had no idea that writing this post would bring any of this out of me. I thought I was just going to be sharing some recent articles, facts and opinions. I can't tell yet if this WAS therapy or if I NEED therapy. But, now I need to go find a tissue...