Arthritis Foundation Forum / Juvenile Arthritis / Parents and Parenting

Arthritis Walk

Mealeigh — Sun, 05 Feb 2012 18:44:42 GMT

The Arthritis walk is coming up in May for most of you! (the one here isn't until September!). Are you signing up?Anyway, I was trying to come up with a cute name! Any ideas? Team names from the pas?

Update On My Little One

Mealeigh — Tue, 31 Jan 2012 21:51:19 GMT

Gage does Actemra. We were at the hospital today getting an infusion and his rheumy came by. She lowered all of his meds down to once a day(2 pills a day now yay). She decided to take him off MTX(he refuses to take it anyway because of the color of the pill).and then she said....for the next TWO YEARS Gage is going to be on Actemra (unless something happens obviously).I was pretty shocked by this. When he first started it I was told it was only going to be for 6 months. I'm having a hard time wrapping my mind around 2 years. That is atleast 48 visits to get it done. It is about 300 hours total. I could go on with the numbers my mind has broken down. He had a good and a bad day.any other Actemra users have a timeline?

In need of support

Traci Smith — Wed, 01 Feb 2012 10:25:11 GMT

Well I'm falling apart again. The fear and stress is ovewhelming now. Zack's back pain is getting worse, eyes are burning and vision decreasing, appetite decreasing with stomach issues getting worse. His skin is literally being eaten by the psoriasis. Were on two biologics and still he seems to be in a decline. were looking at going back to the tnf-alpha inhibitor, likely simponi but it isn't entirely clear that it wasn't the humira that triggered the white matter changes in his brain so we'll have to have MRIs of his brain on a regular basis to track this. In the midst of this the teachers are complaining about his immaturity - which I personally think is the way he is copes with his situation - could be worse - he could be acting out. meanwhile i'm running out of humatrope and the endo doc's office hasn't gotten around to submitting the documentation to the insurance company so we can get our shipment...I feel like our lives are spinning out of control. i'm just so scared for our son's future.

Starting MTX for Pauci JIA

NicoleP — Thu, 26 Jan 2012 15:41:52 GMT

Ainsley (2.5 yr old) just has one joint affected (her knee), but she still has active arthritis (warm, swollen, and with limited mobility) after being on naproxen and having a steroid injection (almost 3 months ago). The swelling and mobility are better than they were before the injection, but these issues are still present. We spent the last month limiting dairy, sugar, meats and upping fish, fruits (including the nopalea drink), and veggies.Dr. did not want to do another steroid injection so soon after the first and she doesnt want to wait any longer - she said she would want at least 6 months between steroid injections. So, we are starting on oral MTX. Dr. recommended oral, but I guess it is up to me if I would rather do injections. For now, I guess I'll stick with oral and see how she handles it.Seems pretty uncommon to do this for just one joint, but I obviously don't want it to get out of hand.I did ask the dr (left a phone message after our appt today) about the MTHFR gene mutation and if she should be tested for it - so I'll see what they have to say. I feel fairly well informed thanks to you all. I was just posting this to share, but will listen to advice if anyone has it.By the way, Ainsley is ANA+, no signs of uveitis as of yet, and low SED rate (1).thanks

Great Rheum visit :)

sadiesmom — Fri, 06 Jan 2012 21:23:48 GMT

Sadie had a great checkup and our Rheumatologist took her off MTX! So excited but very nervous too. Now we cross our fingers and wait...

Critical Inj Mtx Shortage

Joy125 — Tue, 31 Jan 2012 11:19:03 GMT

[size=2]CRITICAL INJECTABLE METHOTREXATE SHORTAGEI’ve been having trouble getting injectable mtx since September 2011. My mail order pharmacy and two nearby walk-in pharmacies were out. After calling around I found a pharmacy in another town that still had some in stock – until last week. I took their last 2 ml vial of mtx – which is only a two week supply.According to the FDA’s 1/23/2012 list of current drug shortages, the soonest one drugmaker anticipates having inj mtx available is April (estimated release date). The other four drug companies have either stopped making the 2ml vials, have temporarily discontinued the 2ml vials, have it on back order and can’t estimate a release date or have a limited supply only available for emergency orders.[url]http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm[/url][b][u]Anyone having trouble getting inj mtx should report this to the FDA by emailing:[/u][/b][email]drugshortages@fda.hhs.gov.[/email]The more the FDA hears from us, the more attention they will devote to resolving this shortage and taking steps to prevent them from reoccurring in the future.From[b] “Drug Shortages Predicted to Reach Record Levels,[/b]” MEDSCAPE TODAY, September 9, 2011 -- according to Joseph Hill with the American Society of Health System Pharmacists (ASHP):[/size][quote][i].........“There isn't just 1 driver of the drug shortage; in fact, it is complicated by multiple issues, said Mr. Hill."One of the main drivers is quality problems in the manufacturing sector," he told Medscape Medical News. "The majority of these shortages are in the area of older sterile generic injectables, and the manufacture of these products is a highly complex process.".......Dr. Link pointed out that not only is the manufacturing of these injectables complex, but that they are also costly to make, with little profit to show for it. "That gives companies little incentive to keep making these drugs," he said.Another driver is consolidation within the industry itself. "We have seen company mergers, which means that there are fewer manufacturers," Mr. Hill said........[/i][/quote][url]http://www.medscape.com/viewarticle/749401[/url][size=2]Other articles about the shortage of [b]inj mtx -- a chemo drug used to treat RA and at much higher doses, pediatric cancer:[/b][b]“Shortage of cancer drugs tied to simple economics, experts say”[/b] LOS ANGELES TIMES, November 2, 2011[/size][quote][i].........In this eye-opening report, a pharmacist and a physician explain why so many cancer drugs are in short supply and offer some prescriptions for how to fix things.For starters, oncologists have a strong incentive to prescribe expensive brand-name drugs instead of cheaper (though just as effective) generic ones.......Oncologists now rely on drug sales for half their revenue....With doctors writing prescriptions for brand-name drugs instead of their generic equivalents, demand for generics plummeted. So companies stopped making them. ......some suggestions for reversing the problem. One is to change the way oncologists are paid so that they no longer rely on commissions from selling chemo drugs....Another solution would be to regulate the price of cancer drugs as in Europe, where shortages are less frequent. “Prices are set higher for generics so that companies will make them, but prices of brand-name drugs are often much lower than U.S. prices,” Gatesman and Smith write.[/i][/quote][url]http://articles.latimes.com/2011/nov/02/news/la-heb-cancer-drug-shortage-20111102[/url][b]"The Shortage of Essential Chemotherapy Drugs in the United States," [/b]NEW ENGLAND JOURNAL OF MEDICINE, November 9, 2011[url]http://www.nejm.org/doi/full/10.1056/NEJMp1109772[/url]

Strange rash on chin twice now

Kymberli Mundwiller — Tue, 05 May 2009 15:21:56 GMT

I am wondering if anyone has dealt with this before. I have mentioned my daughter before. She had been having joint pain, (and other mild pains in tendons, muscle, and bone), for 3+ mos now. The rheumy said this wasn't arthritis, but we really don't know what else it could be, since she is worse in the morning. They are sending us to a neuro now, but we wait.

Since all that, we thought it was all going away, because she had 2 weeks (longest pain free/less time), and she was feeling well enough that I let her go skating. So, she is hurting again. When this all started again, her leg went numb, twice in the early to late evening. More recently, she has been dizzy enough that she couldn't get out of the chair until noon. I know this may be out of this forum's expertise, but I thought it might remind someone of someone else's situation.

Today, she came up with this chin rash, again. This happened earlier on, where she had a V shaped rash on her chin. It looked like dirt at first, until I got closer, and it is more of a blue looking rug burn. (We don't have carpet, nor could she have hurt herself to cause this.) This time, it is a large L type shape from the chin to underside. She doesn't notice it at all. Until I say something. But, it doesn't itch or anything.

Her joint pain migrates, she has also had bottom of her feet pain, mostly in her ankles lately, but she can hurt anywhere, or combo of anywhere. She has also been known to have headaches. The numbness and dizziness is just recently.

Any advice or suggestions welcome. Kymberli

New Systemic JIA diagnosis

Lena's Mommy — Tue, 24 Jan 2012 16:19:58 GMT

Hi everyone, I'm new to the site-- my daughter who's 4.5 was diagnosed with systemic onset JIA after being very very sick and in the hospital for a week. She started Kineret and Indocin and is functioning very well. We live in the NY area.I just wanted to reach out and say hi because I'd love to join a community of other moms dealing with the same disease. I mark today as 1 month out of the hospital and am filled with mixed feelings of joy that she's doing so well, fear that things will not go well in the future and still some shock that we are even facing this diagnosis at all. She had some MAS with her systemic onset and I'm terrified it will come back. Also she still has some arthritis, though her systemic features are under control, and our pediatric rheumatologist is thinking of adding methotrexate. Any experience with this drug and Kineret together? She also is getting PT, OT, and is swimming. I'd love suggestions about diet and articles about that as well.

Actemra vs Kineret

Kimberly Pruden — Sun, 29 Jan 2012 00:12:50 GMT

C's Ped Rheu is scratching the thought of MTX. She mentioned putting her on either Kineret or Actemra, to treat her SJIA. She will be 2 in less than 1 month, so she's the youngest someone could possibly start Actemra. We are looking for thoughts, experiences, pros/cons, etc to determine which way to go. Any advice from fellow parents is welcomed.Thanks!Kim

Dtr recently diagnosed with Systemic JIA at 21 months

Kimberly Pruden — Thu, 12 Jan 2012 01:09:46 GMT

Good evening everyone! I'm Kim and I'm joining all of you because my daughter Campbell was recently diagnosed with Systemic JIA.Back in October she had a limp for only a few days and elevated fever in the 102's-103's for over a month. Multiple trips to the doctor, bloodwork, and questioning possible UTI, we were admitted to the hospital for an 'observation' that ended up being a week. It wasn't until our time at the hospital did a rash appear. By the end of the week she was diagnosed with Systemic JIA, along with a recommendation to get the steroid injection into the Left knee and ankle. We had met with the Ped Rheumatologist, who was very confrontational, and an Immune Disease MD -- both of which cornered my husband and I and reprimanded us for not having gotten any vaccines for Campbell - because now that she has JIA the drugs will suppress her immune system and she needs to be protected.She was discharged and put on Naproxen, with mentions of future treatments - which led me to consult with a Naturopathic Pediatrician. He informed me that animal products, including dairy products can cause inflammation in the body and to try a vegan diet, and a few basic supplements - it takes 3-4 weeks to see changes. So we did that and she has not had a fever, rash, limp or anything since. (Well she's only ever limped that first few days in Oct) We also consulted for a homeopathic treatment as well, as we are a bit weary and concerned about injecting our little girl with so many different drugs and steroids -- if there is a alternate way to keep her from being drug dependent, we want to try.We got the steroid injection in the beginning of December for the Left Knee and Ankle, feeling that was localized and safe. After that the Rheu stated she felt Campbell looked great and couldn't believe how well she was doing, hoping to take her off the Naproxen over the holidays. Campbell continued to look good and have no problems, until Sunday... We noticed some mild swelling in the Left Ankle - but she has ALWAYS been her normal, happy, active self through this entire process. This makes it hard for friends and family to believe she has JIA. I saw the Rheu today and she got very upset about the mild swelling informing us that we need to get the vaccines on the fast track to start Campbell on Methotrexate in approx 1 month!! This was a shock to me, as I thought this visit would be simple and having Campbell try to be off the Naproxen.When I left the office, it occurred to me that we started the homeopatic treatment approximately 1 week prior to the mild swelling arising, and wonder if that could be causing it...I'm wondering from you, our new JIA family, a few things... 1) anyone else tried natural treatments, diet alternatives, homeopathic treatments, etc? 2) With the Methotrexate, I'm concerned about putting my little girl on something so strong... what have your successes and concerns been? She is our first child, and with so many options out there, we're just trying to figure out what is the right thing to do. It is hard for us to be on board with such an aggressive treatment when her knee is now fine, her ankle has mild swelling, and it's not causing problems in her daily life - she runs, hikes, goes up and down stairs, etc - no problem. She doesn't really jump on the ground, but she's not even 2 and might not be coordinated yet. What are everyone's thoughts? Are we crazy to be trying too much at once with the Rheu and the Naturopath? This is a marathon... not a sprint, clearly.Thanks in advance - look forward to getting to know you!

Probiotics & Methotrexate... plus diet changes

Madeline's mama — Tue, 24 Jan 2012 00:32:34 GMT

As a family, we take green supplements and probiotics. We also have gone gluten-free and although it's tough to tell whether there has been a positive impact... I can say that Madeline has been doing great (although being on MTX injections). She was sick for a couple weeks and we had to stop the MTX, but she seemed to fair well during that time (sticking with gluten-free & omega gummies - nordic naturals the fish ones which actually do taste pretty good -- there are a lot that are pretty terrible tasting). My parents decided to go gluten-free as well for Madeline. My father is in his late 60's and has said that his joints feel great (and improved). For those that think Gluten Free is tough, eliminating cow's milk was almost impossible for us (since we have twins that are under 2 and still on whole milk). The GF change has been actually much easier than I expected. There are wonderful products out there that make me NOT even miss Gluten. We made pizza today and I really enjoyed it (and I've always loved bread). We use quinoa pasta now and I prefer it over regular pasta... I've found amazing chocolate cookies (and I don't even like regular chocolate cookies - which is probably not a good thing for the waistline)! Just thought I'd mention these things since I've noticed that GF diets have been discussed frequently on these boards. I'd be happy to share some of the brands and items we use (since it was a lot of trial and error for use the first couple months). At the end of the day, reading about gluten, regardless if there is any positive impact on Madeline's JIA - it can't be great for anyone, so as a family, we've been happy to say good-bye to it!Anyhow, back to the probiotics... I have read wonderful things about probiotics and I really believe in taking supplements since we can only eat so much yogurt :) (my husband and I use Green Vibrance) and the children use FloraBaby. I am wondering if there are any issues with Madeline taking these supplements since she is also on MTX?***Madeline will be 4 in March, was diagnosed in Nov with Poly JIA (both knees, both ankles, elbow and finger with erosion). She was on Prednisolone & Naproxen and now is just on MTX and doesn't complain about pain much at all now (if ever). She does aqua physical therapy & Regular PT & Ballet.

Methotrexate on backorder

NancyA — Thu, 26 Jan 2012 19:22:59 GMT

Hi Everyone,It's been quite along time since I've posted, So Let me first say Happy New Year.Secondly, I received a phone call from my pharmacy stating Methotrexate injectables are on backorder til March 2012. Has anyone heard this? I'm not sure if this has anything to do with the recalled Methotrexate in Dec 2011.So, I googled it and a few manufacturers have limited supply. I called a different pharmacy and since it's not a regular stocked item they couldn't get an order either. So what do we do now? Guess I'll be speaking with the Rheumy in the a.m. Good LuckNancy+Dgter Poly Jra Age 9

Delayed growth in kids with JIA

miamimom — Tue, 17 Jan 2012 00:29:51 GMT

I know that there are a lot of articles and research studies out there about the possibility of growth delay in kids with Juvenile Arthritis. I was wondering if anyone has any direct experience with their child with this complication. Have you put your JIA child on growth hormone therapy? Did you have any problems getting your insurance company approve growth hormone? Most importantly, potential side effects of GH therapy are joint pain and hip dysplasia - has your child experienced these side effects?I have two kids with Juvenile Arthritis. My older child had no problems with delayed growth. My younger child has consistently been monitored for slow growth - even before his arthritis was diagnosed. He was tested several years ago and found not to be growth hormone deficient - at least not at that time. His endocrinologist feels that systemic inflammation is suppressing his growth and GH therapy is the recommended treatment. The time has come that we can't put the decision off any longer. Any experiences??

Itchy sensation in hands

Emily Van Beek — Fri, 20 Jan 2012 15:14:09 GMT

My son was seen last week by his rheumatologist. He recently had a flare but is feeling better now. Last week he was treated for a strep infection also. Anyway, upon leaving the clinic he started complaining his hands itch. I didn't think much of it and then when we arrived home his hands were still "itching" and they were red and swelling. His fingers hurt when he bent them. I asked him how they felt and he said they felt like something was poking him (inside his hands, like needles pricking him). I gave him benadryl liquid which seemed to help the itching but the joint pain remained. The next day his feet were also affected. Now he has been complaining off and on about this all week. Has anyone else had this? Does it have anything to do with arthritis?

Question on Integrated Medicine

Traci Smith — Mon, 16 Jan 2012 12:43:09 GMT

Ellie's Dad - I saw your caution on naturopaths and thought i would ask you (and anyone else with experience in this) for a recommendation. We had a consult with a naturopath who is an MD but we found him on the internet so of course the skeptic in me is in full gear. The reason we reached out to him is because I have yet to find a metabolism MD who has expertise in the MTHFR gene mutation so we can be sure we are optimizing treatement for this. So...found this doc on the web and, yes, he does have interest in a company that sells supplements. We had a phone consult with him and rather than talking about the supplements he really pushed us to begin a gluten free diet. He did follow up with a list of recommended supplements, some of which his company sells, some are supplied by other companies. I don't plan on initiating any of the supplements until we talk to our pediatrician but was wondering if you had a recommendation on how to find a good doctor of integrated medicine we could trust?Traci

Diagnosed at 16.

Lauren Schwindt — Mon, 16 Jan 2012 03:46:57 GMT

Hi all!I know that this is a forum for parents, but I thought that a few of you might be interested in my story. I was diagnosed with sero rheumatoid arthritis at age 16, and at 18, have recently tested positive for the RA factor. I am currently a college student living away from home, and these results have inspired me to create a blog. I am sharing my personal stories, coping with ra in college, reactions to medications (I have been on plaquenil, naproxen, methotrexate, and enbrel), and uplifting research information. I would love the support and followers, and if you are interested, here is the link!http://collegejoints.blogspot.com/Thank you, Lauren

New Diagnosis

Cheryl Jacobs — Fri, 13 Jan 2012 19:31:02 GMT

My ten year old daughter was just diagnosed with JIA today. She is affected in both wrists and I am swinging between being terrified and devastated. Can you help me by telling me what it means when you first hear those words - your child has JRA?

How long do flare-ups last?

leahF — Tue, 11 Oct 2011 08:56:26 GMT

My two year old started limping 7 weeks ago. it started with a slight limp that lasted 5 minutes to now lasting anywhere from 15 minutes to 1 hour. Some mornings she can't walk and needs to be carried. Her left knee is affected but now it looks like her left ankle is swollen. She has had xrays and an ultrasound of her knee. The orthopedic surgeon thinks it is JRA and has started her on naproxen. She meets with the Rhuemy in 2 weeks. Ana- and her inflamation rate was barely above normal. I just want this flare-up to end....

Miss Michigan raises Awareness for Arthritis in Miss America Pageant

AF Dude — Tue, 10 Jan 2012 10:53:33 GMT

[size=2]When she was 13, she was told by doctors that she would lose her ability to walk. Now, Elizabeth Wertenberger is Miss Michigan 2011 and using her Miss America Pageant platform to raise awareness for arthritis and other chronic illnesses. Click to watch the [url=http://missamerica.org/videocontest/contestants/michigan.aspx]Miss Michigan[/url] video and vote.[color=red]Just 3 Days left to Vote! [/color][/size][url=www.youtube.com/user/ArthritisFdn][size=2]youtube.com/user/ArthritisFdn[/size][/url]

Orencia every three weeks

mxmom — Wed, 04 Jan 2012 13:43:16 GMT

Happy New Year...Happy to say I think we have found the right combo of meds! hip hip hooray.. Orencia 750 mg every three weeks, celebrex 200mg 2xd, omperazole and ambien...she still has some slight pain but nothing like before and she is even considering riding her motorcycle again.. Just thought some good news would be nice for a change....

Back to the Drawing Board on Mouth Ulcers...

Ella's Mom — Wed, 04 Jan 2012 22:24:23 GMT

For the first time in four years Ella's joints are under control - Hallelujah! Because she started getting really bad mouth and nose ulcers in April, we've tried adjusting meds, adding more folic acid, discontinuing mtx (then starting back up w/ no change in ulcers), discontinuing Orencia (known to cause sores in 3%), changing toothpastes...you name it, we've tried it. The only thing that has helped is prednisone. She's been on daily pred since August, which we started tapering a little over a month ago to see if we could get her off completely. Each time we decrease the pred she gets new ulcers and last week's taper has resulted in huge ulcers that are so painful she is eating very little. She would rather not eat than use Orajel, steroid paste or the Benadryl/Maalox mouthwash that is commonly recommended for mtx mouth sores because she hates the taste of all of them. Our next step is a biopsy to see if we can determine the underlying cause. My question is if anyone has had recurring mouth and/or nose ulcers that were not mtx-related? If so, have you found anything that helped? We've already ruled out G/I involvement as mouth ulcers are often a symptom. Her diagnosis is poly with systemic features, including rash and fevers. Any systemics with this problem too? She has a chronic staph infection on her face thanks to mtx, so I just left a message for the rheumy asking if we can try oral antibiotics in case the ulcers are actually staph. Any ideas are appreciated!!Thanks,Melanie

Having trouble finding Methotrexate??

sadiesmom — Mon, 12 Dec 2011 18:37:07 GMT

Our Rheum gave us a heads up about a possible shortage...I've stayed as stocked as possible and I finally ran out. My daughter takes it every Sunday so I have 6 days to try to find some. All the pharmacies that accept our insurance have ZERO. Anyone else having a problem getting it?

SJIA and RSD

Ellie's Dad — Sat, 31 Dec 2011 22:11:42 GMT

I've been afraid to post this question, because I am fearful of the answer. Two months ago Ellie was diagnosed with RSD.After experiencing 16 months of unrelenting SJIA, which is now finally under pretty good control on Actemra, she now has developed RSD (just as we were about to get her off steriods)We are pretty terrified right now, as bad as SJIA is.... I fear this RSD. She has been brave and with all the PT we are doing have her improving. Does anyone here know about RSD. Please, even if it is a horror story, we need to know, what is coming. Docs here are very hesitant to say much, which makes me very nervous. We are taking her to Boston in a couple weeks, to have her evaluated by a program there.

my 5 year old daughter was diagnosed yesterday with JIA

Morgan Hoopes — Tue, 29 Nov 2011 13:27:26 GMT

I am a 28 year old single mother of 2. A wonderful 9 year old son named Dylan and a beautiful 5 year old daughter named Chloe. For the past few months we have been traveling from Wyoming to Denver Colorado to see the wonderful doctors at children's hospital. Fortunately yesterday we were finally able to get a diagnosis of JIA. I'm completely freaking out! Chloe being 5 doesn't really seem to care too much which I am very thankful for. She also doesn't seem to be in pain which is another thing I am very thankful for! I am just curious as to what we will potentially be facing??

Weather and SJIA

Calila's mom — Sat, 10 Dec 2011 16:09:28 GMT

Any comments? Many people firmly believe a change in weather (temperature, humidity, barometric pressure, wind gusts, rain or snow) but I haven't heard any parent who has a kid with JIA and move to another state because of the cold weather. It's been hard for our daughter in the mornings when the temperature in below 40F. Her fingers are the most affected.Calila, 8 years old (SJIA - 05/2011)

Madeline's update on her Poly JIA...

Madeline's mama — Wed, 21 Dec 2011 00:16:24 GMT

One of the things I noticed when my daughter was newly diagnosed and I was constantly roaming these forums was that there didn't seem to be too many, "my child is doing well" comments! Of course that made me VERY nervous, but realized that when a child is doing well, the parents are not nearly as "worried," and likely do not sign on to give their updates!That being said, here is the quick background on Maddy. She is 3 and a half-ish (4 in March) and started to have noticeable symptoms about 6 weeks prior to being diagnosed with Poly - affecting both ankles, both knees, an elbow and a finger (which had erosion present by the time we had xrays done). We were diagnosed within about 1 week of the process (thank goodness for a very assertive doctor at the walk-in that came in right before my husband left and said, "although it's rare, there is something called JRA..." - that's really when the journey began).Her labs revealed a sed rate of 45 and that she is ANA positive as well. Quickly after she was diagnosed, her symptoms became VERY bad. She was completely unable to get out of bed on her own and could NOT walk. Our Rhuemy had told us that she seemed to have an agressive form based on the erosion present already. She was started on Naproxen, but had to stop bc of an effect on her kidneys. We simultaneously started Metho by injection (which we do at night while she sleeps and is the easiest med we give her bc of that). We also started her on Prednisolone (miracle drug) bc she had progressed so quickly. She was able to get herself out of the bed the morning following her 1st dose! Although, moving slowly and stiff, she could move! The biggest hurdle was getting her to actually take it. After 3 weeks or so, Madeline started to take it herself. She'd put the syringe in her mouth, shoot it in and take a quick sip of water. What an amazing child (that stuff is pretty terrible)! She started PT 2x a week and also Aqua PT 1x a week. We had also started the process to get Enbrel prescribed. We are now about to administer her 6th dose of Metho, we completely tapered the prednisolone as of yesterday and had a Rheumy check-up yesterday too. Maddy's sed rate was 9 and her Rheumy and her physical therapist both agreed that she can go down to 1 day/week. Madeline is doing GREAT! She is running and playing and acting like a normal 3 year old again. The best part is that she is HAPPY. Prior to the diagnosis for months, she seemed angry and had frequent tantrums, etc... she seemed very frustrated. Of course, it makes sense now. We are uping her dose on Metho and since she is doing so well, we all agreed to wait on the Enbrel. I have learned to handle this condition, one day at a time. I felt so helpless and SAD when Madeline was diagnosed. I kept thinking of all the barriers/issues she would have... everything was worst case scenario. Now I realize, that although this is just her 1st flare up and we are no where near out of the woods, TODAY was a good day. And I will face tomorrow as it comes. I wanted to post this bc I know how hard it was to handle her diagnosis just 6-7 weeks ago. I went through a complete grieving process, I was sad - angry - wondered why my baby... I cried a LOT. What a better place I'm in now - I've learned coping skills and just how resilient my child is. I am a pretty proud mama!

Systemic JIA and Kineret

GatorMom — Wed, 14 Dec 2011 18:39:54 GMT

My 2-year-old daugther was just diagnosed with Systemic JIA. She is on 15 mg prednisone, as well as naproxen, prilosec and methotrexate. Just started the methotrexate yesterday. On steroids and indocin alone, her labwork did not improve since her discharge from the hospital 2 weeks ago. We would like her to start on Kineret, but seems our insurance (TRICARE) requires prior authorization. Included on the form is a stiplulation that the patient must be age 18 or older. Just wondering if anyone has had any luck fighting an insurance company to get approval. Or if anyone has paid out of pocket, a ballpark figure of how much it costs.I'm also looking to educate myself about drugs, labs and treatments for systemic kids, if anyone can point me in the right direction. Thanks for any help.

systemic parents and actemra - comments?

Calila's mom — Thu, 24 Nov 2011 16:54:43 GMT

My daughter is 8 years old and she is getting actemra for the first time. We are in knoxville, tennessee. any comments?

Elementary Educatoin Teacher Candidate

Janna Edgin — Sat, 03 Dec 2011 10:34:54 GMT

Hello everyone,I am a senior student in elementary education. I attend a college in Northwest Alabama. I have a family member with rheumatoid arthritis but she was diagnosed at a later age. What I would like to find out is what you normally do not find in the research. I am aware of this type of "new normal" for parents and children but I have not really deen it in schoold and I'm sure I will meet a student on day with juvenile arthritis. Is there any accommodations your school is doing for your child or are there things you could think of that could be done for your child that would help them have a more comfortable day? Any help will be greatly appreciated.

Curious..Social security for children

mxmom — Wed, 09 Nov 2011 11:50:22 GMT

Has anyone filed for SSI for their child?.. I am thinking about doing this for my daughter. Just wondering if anybody else has tried, any thing I should know, etc.. Our insurance is changing next year to a maxium 9,000 out of pocket before paying at a 100%.. With Orencia infusions every month and driving 2 hrs one way along with all her daily meds, not to mention all the dr's appt at 40 bucks a pop....UGH We are struggling to pay all the bills and we both work full time.

Curiosity - Where are you from?

Mealeigh — Mon, 07 Nov 2011 22:36:24 GMT

Just out of curiousity. Where are we all from?

Advice on Enbrel

KLix — Sat, 15 Oct 2011 07:29:39 GMT

My daughter's rheum would like to start her on Enbrel. For those of you whose child is taking or has taken Enbrel, I'm wondering what your experience has been....good, bad and ugly. I know each child will respond differently - but I'm just looking for some thoughts from the trenches. Is he/she still using it? Have you had good response? Has your son/daughter had any serious infections? Looking back, is there anything you would've done differently? Any advice on giving the injections? How long until you started to see a difference in their symptoms? Etc. Thanks all who respond ---I really appreciate it!!

RA and pregnancy

Hayley Ralston — Wed, 07 Dec 2011 00:06:23 GMT

Hello,I was diagnosed 14 years ago at the age of 19. At the time I was in college and wasn't thinking much past graduating. However not long after I turned 25 and became married, I started thinking about having children. I spent a long time researching the pro and cons of being pregnant and having RA. Unfortunately there is not much information in this area. Of course no one wants to be the first one to be studied while pregnant for the risk of birth defects of which I understand. But I could only find two presonal stories of how thier experience went. So I though I might throw my story out there just in case someone is in the position I was in. As I started thinking about a family, I was taking Arava, Predinsone and an anti-inflamatory. I discussed the topic at lenght with my doctor. His recomendation was to not have children because my disese was to severe and the damage on my body is irraversable. Of course this news crushed me but I thought I was tough and I thought I could do it. So under his care I went into a 6 month detox of the Arava and the anit-inflamatory. I still took 10-15mg of Predinsone. The six months were more then rough. My disease became out of control again but I felt it was worth the cause. I quickly became pregnant at the age of 26. As some say the diesease can become dormite while pregnant, my did not. It did decrease in severity but was far from dormite. As the pregnancy advanced I struggled with sciatic pain which I accredited to the pregnacy. Labor and delievery did not go well but that was more due to the structure of my hips. After pregnancy I continued the Predinsone while breastfeeding. At the one year post pregnancy mark, my doctor said again he did not recommend pregnancy again. However if I was going to do it now would be a good time so that I did not have to detox again and the younger I was the better. With that advice I became pregnant with my second baby. Still only on Predinsone, I struggled to care for a toddler, being pregnant and have RA. I took a lot of time off work, unfortunitly. This pregnancy also did not end with a rough delievery as I had a c-section. I returned to breastfeeding for 6 months while taking the Predinsone. At the six month mark I knew I was done having children so I went back to my regular pre-pregnancy drug regument.After a 6-9 month preiod, it was clear that my diesease had become very aggressive during my child bearing time preiod. At the age of 30, I started a taking bio-tech drugs such as Embrel. Although I am now taking Remecaide, things are mostly under control. However the time off of drugs and stress of child bearing did take a toll on my body. I have severe damage to my hip joint that I thought was sciatic pain while pregnant. Unfortunitely it did not go away after pregnancy which led me to get x-rays that showed the damage. This damage ultimatly ended my career. So that is the facts of my pregnancy expercience with RA. Today my daughter is 5 years old and my son is 3 years old. They are both well and yet to show any signs of RA. However that does not mean that with every cold, every fall I don't worry about them getting the diesese. My worse fear is for them to devolop RA young and miss out on the dreams that they want to do. Also I hate that I struggle so much with my health that I can't be mother that I want to be or the one they desearve.I hope this helps just one person. I know I would have loved just one more experience while making such an important desision. I wish you the best of luck.Hayley

Update on Ellie and question for systemic parents

Ellie's Dad — Sun, 13 Nov 2011 07:14:40 GMT

Ellie got sick last month with the parainfluenza, and it has gone downhill from there. She had been doing very well, nearly off of the steriods and NSAIDS.We pulsed with some pred for a week, and swelling diminished significantly to the point where she is back to where she had previously been.Now here is the weird thing. She has started having nightly rashes again. They start in the afternoon and get worse as the evening goes on. Despite this her bloodwork looks very good, and there is no fever, in fact her body temp has been on the low side. 97 - 97.5ishThe rash looks alot like what we initially saw at her onset, except now it is on hands and face (malar-like), not just limbs. Sometimes there is some residual in the morning. Overall the rash is increasing each day. Every once in a while she doesn't exhibit it at all.She had a number of blood tests done, looking for an overlap kind of disease (like ANA) and they all turned up negative.So our next thing is to go to a dermatologist.I think what is so weird about this rash is that it is daily, like Still's, but the rash itself doesn't look exactly like stills. When it is really bad there it is slightly raised, but usually it is not. It is not itchy at all (thank God)Over the last month it has been getting worse and worse and coming earlier and earlier. It seems to increase with stress, and heat, but not sunlight.My guess is that the rash is being mediated in someway by the Actemra, and so its appearance is modified.Has anyone had an experience like this.Please help.

ankle swelling, no other symptons

leahF — Wed, 23 Nov 2011 07:57:57 GMT

My daughter has been diagnosed with JIA in her left knee and left ankle. She received steriod injection 3 weeks ago in both. Her knee was back to normal within 2 days. She no longer limps in the morning, no longer requires to be carried and can jump again. I noticed that the ankle swelling went down but it is still slightly bigger than than the right ankle. I went back to the dr yesterday and they said motion was good but one doctor did notice the slight swelling. The knee looked great. So they put us back on naproxen for one month to see if that does gett the remaining swellign down. My daughter does not seem bothered by the ankle at all. With the knee, she couldn't walk up to an hour. My question is, has anyone else experienced no other symptoms in the ankle other than slight swelling? She can bare full weight on it.

Chronic pain syndrome

Ellie's Dad — Sun, 20 Nov 2011 16:28:38 GMT

Ellie is potentially facing this. She is having a bone scan on Wednesday, to figure out why she can barely move her left ankle, despite little or no arthritis in her.Has anyone dealt with this ? I will fly her wherever she needs to go to give her the best chance at quelling this syndrome.Does anyone out there have any experience with this. It has us as scared as anything the past two years has dished out.

Humira pain??

Julie Innes — Sun, 29 Nov 2009 14:04:53 GMT

My 11-year old daughter was just diagnosed 3 months ago with Poly JIA--having inflammation in most joints from neck down to toes. She's not in much pain, just achy & stiff. We did 8 weeks of Naprosyn, with no results or change. The dr. just put her on Methotrexate (oral pills), Folic Acid, Mobic & Humira injectable. My question is related to the Humira. She will be doing the injectable pen twice a month, starting this week. She is DEATHLY afraid of needles, but getting better with each lab draw :) The doctor and nurse told her it will "sting" a little, but I've read some posts about terrible pain associated with the shot! Now I'm worried it will be a huge challenge getting injections done.Any input would be greatly appreciated!~Julie

How do you really know if it's pauci or poly?

Madeline's mama — Thu, 17 Nov 2011 19:14:28 GMT

My daughter is 3 1/2 and was diagnosed last week with Poly. We are not exactly sure when she first started to have symptoms since she never really complained until about 6 weeks ago. After labs & x-rays, we were told her sed rate (2 weeks ago) was 45, she is "slightly" ANA positive (they said it's a very low positive, but nonetheless positive) and her x-rays showed that both knees, both ankles, her right elbow and left finger were affected. Now, I understand that 5 or more = Poly... but I also am reading that Pauci is 4 or less in 6 months... and after 6 months it could be additional joints. Anyhow, I am asking bc everything I am reading states that it's more than likely that Poly will affect the fingers/toes and sometimes the larger joints (often the neck, etc)... and Pauci affects usually the larger joints and then maybe smaller ones as well. Sounds like I'm reading into it too much - but she seems to be more of the latter - large joints with just one finger.It's all so confusing, but clearly I am HOPING it's Pauci vs Poly purely bc of the reports of children "outgrowing" JRA is definitely favored for those diagnosed with Pauci. Maybe it's wishful thinking... but I don't know if any Pauci parents had children with additional joints affected after the 6 month period?

How do you get a 3 yr old to take prednisone?

Madeline's mama — Thu, 17 Nov 2011 00:59:22 GMT

Since Madeline's symptoms had progressed pretty rapidly and she was unable to even get her little body out of bed, our Rheumy prescribed pred until the MTX injections (hopefully) start to work (as well as adding Enbrel soon). We gave her the liquid dose last night and we think we maybe got 1/2 the dose down. She spits it out and we tried to hide it in everything. We then got the pills and crushed them up to try that route tonight - that was just as bad. No amount of ice cream,pudding, smoothies...etc - she wouldn't take it!I could tell even after one partial dose that she was already moving better this morning. I really want to get her to take this to help bridge the time until the other meds work.Any ideas? She's too old to just force it and she's too young to rationalize...and this stuff really dose taste horrible :( help please!

13 year old just diagnosed with fibromyalgia, any others please

Sarah Seager — Tue, 18 Oct 2011 17:38:09 GMT

Hi there. We have just had an appointment with a rheumatologist after 15 months of our paediatrician saying he doesn't know, and Heather has been diagnosed with Juvenile Fibromyalgia. It's so great that we finally have a diagnosis and great that she doesn't have JIA, but now we are wondering what next? The rheum is an adult specialist so she didn't want to make a treatment plan.Does anyone else have kids with fibromyalgia. Do you have any tips for coping with the pain and fatigue. We are being referred back to the paed to plan any treatment options, so not sure when we will see him again. I'm really hoping that if we control her symptoms she can get back to normality!Thanks so much.Sarah