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12/28/2010 07:18 AM

My 11 year old daughter has JRA

vicbernard
 
Posts: 12
New Member

Hi everyone! I actually joined MDJ a few months back but have been too busy to post anything but my daughter and I are growing so weary of this disease I need to write and find others, as many as we can, in a similar situation.

Our story: My daughter Sarah is eleven and was diagnosed with JRA at the age of two. She originally presented at eighteen months with a swollen right elbow that was misdiagnosed and treated either as a fracture or soft tissue damage for months before both her ankles swelled up to the size of tennis balls and our orthopedist referred us to a rheumatologist. Sarah never had any of the typical symptoms of fevers or rashes (and from what I've discovered after all these years is that this disease is frustratingly never typical) just oddly swollen joints that made it almost impossible for her to walk without a limp at an age where she should be tearing it up.

The first course of treatment was Naproxen. She did not tolerate it well at all as it caused severe constipation and anal prolapses. We switched to a high dose of Ibuprofen and she tolerated that much better. After around 6 months of that and physical therapy for her ankles without much reduction in swelling, they put her on oral Methotrexate. It seemed to do the trick but we wound up doing two courses of joint injections over the next 3 years. Her elbow swelling went away with 48 hours of the first injection; her ankles took longer. Flash forward to Sarah at 6 years old and after all the injections and another year on MTX with absolutely no flare ups, she was weaned off the MTX and declared in remission just after she turned 7.

During the next few years Sarah was your average happy go lucky child. She was turning into quite the artist, constantly drawing and sketching and her work was so good we had her in private lessons. I took Sarah to the doctor only one time at 8 years of age, for a check up and she continued to have no symptoms. My husband and I were convinced Sarah was one of the lucky ones who get to 'outgrow' JRA and we continued along with life thinking we were home free. Well, it was nice while it lasted but it all came to a crashing halt this past summer.

At first it was her ankles. When she donned a swimsuit for the first time and stood on the pool deck, my husband and I noticed her ankles looked 'thick'. When asked about it she blew us off, said she had no pain, she was fine, leave me alone mom etc...we shrugged it off since she never limped or had heat in the joints. But we did begin to start watching her more closely.

I have to backtrack here a teensy bit. Sarah had an accident at the age of four where she got two finger tips crushed on her right hand by a heavy piece of furniture. In a nutshell, doctors were able to save her fingers and she functioned quite normally even though the nail beds and fingertip pads are somewhat scarred, she's got use of all her fingers! She only had difficulty having her nails trimmed with clippers so I indulged her and gave her regular manicures with an emery board instead. Sometime during early spring, Sarah started hiding her hands from me. She said she was old enough to do her own nails and I figured she was 'at that age' so I backed off and didn't really notice anything different since she was constantly drawing, sketching and writing without a complaint in the world.

So, there we were in the full swing of summer and we took a vacation with friends to the beach. We spent 4 glorious days swimming, walking the shoreline and dolphin spotting. On the last day we noticed Sarah was lagging behind the rest of the kids and was not as active. We watched as she started limping slightly and totally thought it was her flip flops bothering her. She stood at the waters edge and let the sand and waves cover her ankles but had no desire to go in the water. She finally came up to us and blurted out that her ankles were killing her and lo and behold, they were swollen beyond belief that morning. She had to be carried back to the house where I dosed her with ibuprofen and as I handed her the pills, I noticed her hands. OMG. Her beautiful artists hands were so swollen from the wrists on up!! Every joint, every knuckle and yet she never complained of pain!! She'd been having issues for months but it was her fear of going back to doctors and needles and injections and pills that kept her from telling us. My husband and I felt like those hear no, see no, speak no evil monkeys for our ignorance at not noticing our daughters' condition.

Now she is no longer in remission. Now her diagnosis is full blown polyarticular juvenile idiopathic arthritis. X-rays showed significant bone damage in both ankles and hands. She has two fused wrist bones already and is osteopenic, the condition before osteoporosis sets in. Here's our medical time line:

August - Out of remission and doc has her on high doses of ibuprofen, oral MTX and folic acid. Sarah begins 6th grade.

Early September - no changes in swelling and doc wants to put her on Enbrel but that will take a few weeks to hash over with the insurance co.

Mid-September- Sarah has a serious flare up in her hands and her right elbow has now come back too. Her pain is so severe that she cannot hold a pen or pencil or fork or toothbrush etc...the worst of the pain is in her left hand and wrist. Her writing hand. Sarah does not attend school.

Last week of September - doc switches her to injectable MTX, (25mg/0.6 cc) and Enbrel (25mg/0.5cc) is approved and must be injected twice a week. Luckily, my husband and I work with animals and have much experience in giving shots but find it easier to stick a horse or dog than ones own child.

Mid-October - check up with doc and she is not happy with where Sarah is so she decides to add a high dose of oral prednisone (30mg daily! She's barely 58lbs) to the mix. Sarah begins regular occupational therapy for her hands but her pain is so great that they only do pain management, paraffin dips and fludio-therapy. She still cannot write and needs help with every thing from dressing herself to eating to opening doors. The swelling is not coming down and she does not attend school.

November - doc begins talking about joint injections but is hesitant due to the amount of joints in her hands...she'd have to inject each hand upwards of 12 times each. Is considering only injecting ankles and elbow but wants us to increase the MTX to 0.8cc and continue on high dose of pred. MTX injectable is getting very painful for her...that stuff stings going in!!! Sarah is gaining weight (much needed) but her poor face is getting fatter by the minute and she's miserable. Home bound schooling begins. Doc also begins talking of a clinical trial for a new drug that would be a once a month injection as opposed to the twice weekly Enbrel. We decide to not do joint injections and go for the trial to begin in Jan. 2011.

December - doc wants her to stay on high dose pred and much to our disappointment informs us that we're not eligible for the drug trial. The first phase is only for children who've never been on a biologic drug (Enbrel) but we may be able to do phase ll next summer. Now we've been instructed to increase her Enbrel from 0.5cc to 1cc as well. Sarah has stomach pains and is on Ranitidine too.

January 2011 - Enbrel increased to 1ml, not helping any. Joint injections performed....BIG MISTAKE. Bad reaction, steroid flare much pain and regret over the procedure. On Naprosyn and Tylenol 3's for one week after. Need a separate freezer in my house for all the ice packs that outnumber the food in the freezer two to one! Good news is that we've come down this month from 30 to 10mg of prednisone. Moon face is greatly decreased!

February - March 2011 - Check up on the 1st. Doc happy with the reduction of swelling in hands, but not the amount of pain she's still in and now a bad limp in her right leg. Tendons and muscle in right leg is contracted due to the swelling in ankle. Begin PT now and Sarah will be fitted for ankle-foot-orthotics next week to help keep her leg in position so she can't walk on her tiptoes. Her limp is so bad at times, I consider wheelchairs. She can't use a cane or crutches since she can't bear weight in either wrist or right elbow.

Off of Enbrel now and began Humira. Awful awful drug!! First time, they gave me the pen. Very hard to give when not giving oneself. Sarah can't hold and depress this thing! I did it and she screamed bloody murder for 15 mins. Awful. Next dose we got the syringe. Easier to give for sure but it's the drug itself that's awful...it burns like acid according to everyone and that's how it feels having to give it to her...like I'm injecting her with acid, the pain she's in during and after. These shots are leaving us both in tears. Next two shots, she reverted to a toddler like behavior which almost required her father coming in and sitting on her. He didn't. But we're now working with a lidocaine patch and though the first one we tried was a fail, we are going to try it again.

April 19, 2011 - Sarah's doing great with her walking and doesn't use the brace that was cast for her. All of March entailed serious PT and after a few weeks of good stretching and exercising, the tendon's are no longer contracted. They're not perfect, but Sarah doesn't limp anything like she was back in Feb. She was released from PT just last week too.

Sarah's last check up with Dr. J early this month however was not great. Well, the doctors happy with the way her hands and wrists particularly, look now as compared to last summer, and Sarah's moon face is about 90% gone (she's finally down to 5mg prednisone...soon to be nothing!) so Dr. J is swearing the Humira is working. Is it horrible of me to say that wasn't what I wanted to hear? I mean, there IS still swelling on the tops of her hands (you cannot see the individual tendons), her elbow gives her no end of shooting pain, though the swelling there is reduced and her ankles are always puffy and to top it off, for the first time ever, it's in her knees and hips! So, how is it that the Humira's working? Is it a combination of ALL meds? Is it the warmer weather that has her being much much more active?

I can safely say she's out of the horrifically long flare episode and has been really playing hard with friends. She's running and jumping and I even saw her and a pal grab both each others hands and pull! I about had a heart attack but didn't stop it, figured she'd say when. Plus, her bone scan is next month so until I know for sure if she's losing density...let her play hard while she can.

All I know is I know nothing about what's working, what's not. Her daily morning lethargia and complaints about hurting all over so much so that she can't sleep in any one position too long without one joint or another waking her up tells me that we've a long way to go meds wise.

Next apt: 5/5

Sarah's Current meds:

Tylenol for pain (doesn't begin to touch her pain) - 325mg, 2-3 times daily

Folic acid - 10mg daily

Prednisone - 5 mg daily

Calcium/VitD 500mg daily

Ranitidine (Zantac) daily

Subcutaneous injection of 0.8cc MTX - every Friday

Subcutaneous injection of Humira - every two weeks, beginning on 2/14.

Sarah has a great attitude most of the time about all of this. She's one of those kids who are able to find the bright side in any situation and she's the one comforting me much of the time. She was able to find an outlet for her art by using soft pastels since she discovered she can hold them and they require very little pressure so she's produced some amazing work in the last few months. So much so that we turned her work into note cards which she is selling to not only raise money for things she needs but for CARRA as well! She has donated to Friends of Carra over $900 already so they can do research to help kids just like her.

My daughter is my rock and if you have a child in a similar situation...I'd love to hear from you!!

Post edited by: vicbernard, at: 04/19/2011 06:45 AM

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12/28/2010 04:05 PM
Ads
Posts: 132
Member

Hi Vic,

I know how it is - this disease can throw you into a wild tornado-like state where you can barely make it through the day - and spend most nights crying and fearing the future.

Like you I am in a similar boat (may daughter is 12), so the only piece of comfort I can offer is that just like she was ill once and the switch was flicked off and she went into remission, she can do that again. I believe that though the meds can help and push a kid into remission, there is a "switch" that flicks itself off and on. Just as she is in this much pain now, she could snap out of it. I believe in that. The good times may be temporary, but so are the bad times. I pray everyday - if it is a good day, that tomorrow may be a good one too. And if it is not - that tomorrow may bring relief.

Even damage done to joints, when there is no inflamation may become just another quirk. Every child has their weak points - things they can't do. All children have strengths and talents - tailored by life and influenced by their little quirks. It sounds like you have a very talented young lady at home - besides a very strong and resilient one. Try to invest in her as well as in her disease. She'll continue to grow and mature and live no matter how much pain she is in. Each moment is precious - and with kids no matter how homebound they are - it is never wasted.

I'll put your daughter in my prayers.

God Bless,

Ads


12/28/2010 07:30 PM
linasmom
Posts: 76
Member

Hi Vic,

My heart goes out to you. I feel your pain and disappointment and fear. My daughter is 4 1/2 and has had Systemic JIA since she turned 3. We have been on many of the same meds as your daughter and then some. This disease has become the biggest challenge of MY life so far. I relate to what you said about it being predictably unpredictable. Just picturing your daughter standing at the edge of the water, finally admitting the pain that she had been dealing with and the realization you all must have come to, that this awful disease was BACK- it breaks my heart.

I hear a lot of strength in your posting as well, both in terms of your lovely daughter and you. You have experienced this before and ALL of you survived! You even made it to remission. That can happen again. I pray for that for your daughter, for my daughter, for Ads daughter, and all the children suffering and surviving through this disease. I have found it particularly challenging to maintain hope recently, our clinical course has worsened quite a bit over the last 6 months. But the truth is that hope is the only thing we can really control. I am trying not to let the disease take that from me (and in turn from my daughter) as well. I have had help with that from my friend Ads (posted above) and from my husband. I know I can have that through my faith too but I have even struggled with that lately.

I hope I didn't post too much about me- I wanted to let you know that you are not alone in this, I feel your pain and am happy to hear of your daughter's strong, fighting spirit. I would love to see her artwork. Is it on the CARRA website? My daughter Angelina is on a promotional video on that site, great organization.

God be with you,

Denise


12/30/2010 07:38 AM
vicbernard
 
Posts: 12
New Member

Thank you so much for the encouraging words Ads and Denise! I am confident now that we will see this beastly disease hide it's ugly head once again....and soon!

I made a new friend in the Chairman of Friends of Carra (http://friendsofcarra.org/), Vincent Delgazio who's 9 yr old son has JRA. My wonderful daughter made her very first donation to them yesterday and I've signed up to volunteer where I can.

You can see Sarah's art work on the web page I made for her at: http://www.vickibernard.com/owls.html

We have a doctors appointment on 1/4 and we're ready for whatever comes next.

God Bless you both!

Vic


01/02/2011 10:16 PM
cwp123
Posts: 4
New Member

Hi there Vic, as I read through your post my heart broke and I cried out loud. You're describing my wife's life as a child. She was diagnosed at 4 years old. I wasn't around of course during her childhood but have seen films and heard many stories. My wife eventually went into remission and at age 18 got both hips replaced to enable her to walk. The irreparable damage was in every joint of her body including her jaws. The new hips gave her life that she never knew, she could walk without pain. I have never met anyone with determination that she and others like her have. She has to fight every day to do the simplest things that we all take for granted and never complains. We just got done with her second hip revision and are currently in the healing process from that. Good news is, we have two brand new hips. Smile

Vic, my wife was valedictorian of her class in high school, went to college, got her degree and learned to dance so beautifully it just stops you in your tracks and you have to watch in awe. She is currently an accounting manager in a large company following a very successful career. She works harder than anyone there and works circles around every healthy person there. She makes it her life ambition to be better despite her disability. I could go on and on but needless to say, her life story is very inspirational. From what I am reading your daughter has that kind of drive and I pray that she continues to fight and understand that it's possible for people in her condition to have a happy and productive life. I have come to believe that my wife and others like her are on this earth to teach by example.

About all the meds, I'm absolutely not a doctor and wouldn't even pretend to say I can give advice in that area but I will tell you that my wife won't hardly even take an aspirin. Of course she is in remission but she can't take the side effects and opts for the pain instead. She's way tougher than I am. I can totally see what she means though, all those drugs compiled together can't be fun. The prednisone alone has major side effects. I'm so sorry your baby girl has to endure this and I will pray for her, and you too. I know how it feels to be connected to someone that has this horrid disease. I don't think anyone but the ones that have it can understand it better than a spouse or parent and without our support I can't imagine what it would be like.

Vic, you two don't ever stop fighting! My heart goes out to you both and you have my prayers. Please stay strong and may God bless you both. ♥


01/08/2011 07:10 AM
vicbernard
 
Posts: 12
New Member

Wow. I am blown away by all the encouraging words and empathy! Thank you all! Sarah is scheduled for joint injections next week. We're backing off the prednisone and I'm so hopeful that this will work. We did it when she was 4 and had great success with her elbow joint. The ankles took another year after that to show improvement but I'm still hopeful. She's having both ankles, the elbow and both wrists done.

02/28/2011 08:34 AM
vickymichael
vickymichael  
Posts: 6
New Member

hi vik

i too am touched by your story my 10 year old daughter has JIA (poly articular)i feel that i am lucky as she never complains of pain or has any signs of swelling however i no this could change at any time and feel quite scared knowing whats to come. she has an appointment with her rheumatologist in the next 2 weeks and hope her inflammation markers are low as this is the only thing at present letting us know whats going on inside her. both her big toes are deformed her right wrist is restricted however i am a physiotherapy student and i do keep her active and do a lot of physical therapy with her.

my question is how do you cope? i am trying to find a way to deal with whats to come but i listen to all you guys and feel very unprepared. my husband seems to bury his head in the sand and leaves all the decisions to me which i have told him that it is unfair. my daughter however is aware that she has something wrong with her joints but not the enormity of the condition and i maintain normality (as much as) i can.

best wishes to you.

sincerely

vicky


03/01/2011 06:14 AM
vicbernard
 
Posts: 12
New Member

Hi Vicky. I'm sorry to hear about your daughter. I wish nobody's daughter had to go through this crap. It's all good while there are no visible symptoms, kind of makes you forget there's anything wrong with our kids. And for some, they may never have another symptom, while others, well, they bounce from good to bad like we're doing currently.

How do I cope? I want to say I drink to cope...but I'd be lying. I'd like to say I do drugs to cope and pretend that our lives are normal and for my daughter to attend school and to be able to write and draw with pencils again and not limp or wear ankle braces and to run (!). But again, I'd be lying.

Vicky, I think the only way to cope is to face it head on and get educated about JIA as much as possible. This is why I joined this board and I talk, talk, talk to others who are dealing with similar situations. I'm sorry too that your husband buries his head in the sand...mine buries himself in work but he's involved in everything as as much as his schedule allows, if I need him to come to an appointment with me he'll come. His is the only income we have, but I gave up my work from home job to accommodate Sarah's needs....me. She needs me to be present and to help her cope.

I never wanted to think about it when Sarah was in remission. She was so young when she was going through it before that she also knew there was something 'wrong' but not to the extent of what she understands now. I wish I had told her what to watch out for and to tell us immediately if she had any pain at all but she was so scared of the memories she had of doctors and hospitals when she was little that she hid her symptoms (in her wrists and hands) for so long that by the time we went back to our rheumatologist, the bone damage in both wrists had set in permanently. I don't know if that could've been avoided if she'd told us when she first noticed her fingers swelling but we've since taken the stand that she should be highly aware of everything that this disease is capable of doing to her body and why I have to give her half a dozen pills a day and inject her with painful meds (methotraxte every Friday and humira every other Monday) that compromise her immune system further and force her to go to physical and occupational therapy 3 times a week. I'm not saying it doesn't scare her. It does and there are times when she's depressed over it and will be sad but I think it's very normal and healthy for when she's in that space she let's it all out we talk and hug and cry together and then we talk some more.

That's what works for me and my family. We are planning on going to this years Arthritis Foundation's JRA Conference in DC in July. We went to one in VA when Sarah was 4 and we learned an awful lot then and met some fantastic people. Our local foundation chapter sponsored us to go back then. You should consider it...it's actually not only educational but so much fun for the kids because they are grouped together by age and have tons of fun things to do over a long 3 days.

Best of luck and keep on writing. Oh...also, there's a great bunch of folks on Facebook with JRA kids. : ))

Vicki


06/07/2011 08:38 PM
Huntersmom98
Posts: 1
New Member

Our 12 year old daughter has systemic jra. Her name is Hunter Sky. She was diagnosed 8 years ago. But I believe she has had it since birth. She has been through alot of medication changes. She has not been off steriods now for 4 years. She is a great kid who fights this disease and refuses to give up on the things that she loves to do. Hope Sarah feels better soon. Sandi

Smile

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