Arthritis Foundation Forum / Juvenile Arthritis / Parents and Parenting

Fatigue and frustration

kerbear — Wed, 04 Nov 2009 00:31:26 GMT

Hi, I am new to the parenting board, I have a 14 year old daughter, Bria, who was diagnosed 2 years ago with Sjogrens Syndrome. She is RF and ANA positive, but they will not diagnosed Lupus due to a negative anti-DNA. I don't really get that, since the anti-DNA is only positive in 60% or so of Lupus patients, but at thispoint the treatment is the same so I will just go with it. We have been through multiple treatments, plaquenil, mtx, cellcept, 5 or 6 different NSAIDS, prednisone. And I'm sure I have left something out! So, nothing has really helped much with her joint pain and we are back to trying mtx again since the next options that were offered had side effects like permanent sterility after one dose.So, I am beyond frustrated right now. To begin with I am stuck with HMO medical, which means our health care pretty much sucks. Right now Bria is suffering from ridiculous fatigue, she has been sleeping between 16 and 20 hours, followed by a maximum of 6-8 hours awake, then back to sleep. We have already had to switch her to online classes, but now she doesn't even have the energy to do a full days work laying on the couch. The Rheumy says it may not even be related to her autoimmune disorder (right), her primary doctor says it is probably from her Sjogrens. I am so confused. It is worse since starting the mtx and I know it is a side effect but this is ridiculous. I will add that I also have autoimmune issues and have taken mtx for years now so I am used to it, but I remember the fatigue early on, but the meds made such a dramatic difference for me pain wise that exhaustion was an improvement! I guess I just don't know how hard to push her, how long this is going to last, how long I can put up with it!! I am a single parent with health issues of my own and a full time job. Any suggestions,or hope for improvement? Thanks,Kerry

2010 National Juvenile Arthritis Conference

NancyA — Wed, 04 Nov 2009 16:41:53 GMT

HI AllMy daughter was Dx in 4/09 so this info is new to me. Here's some info I'd like to share. I attended a roundtable event on Juvenile Arthritis sponsored by Abbott Labs and our Hospital. We were informed that the annual conference will be held in Philadelphia, PA July 29-Aug 1, 2010. At the Philadelphia Marriott Downtown. There will be professional presentations, workshops for parents and caregivers, etc. Also, the Annual Arthritis Walk for the Long Island Chapter is Saturday May 15th, 2010. Take Care and be well.Nancy

Toddler RA?

Annette Blachford — Mon, 02 Nov 2009 08:53:22 GMT

My 22 month old daughter has recently complained about pain in her feet in the morning and right after her naps. She has a hard time walking first thing in the morning and it breaks my heart. This morning I dropped her off and daycare and she cried b/c she didn't want me to leave, I know it's because she was in pain. I have RA and have been dealing with it for the last year and a half. Could I have passed it on to her? I don't know what I should do. Is there a test that a doctor can do to tell me if she has it? How do I ease her pain? Do I give her pain meds like Tylenol or Advil? I'm sick to my stomach about this b/c I know what that pain and stiffness is like and to see it in your child is just heart wrenching. If anyone has any insight or advice on this matter I would appreciate it.Thanks everyone.Broken Hearted Mommy

Exhaustion :(

Sonya459 — Tue, 03 Nov 2009 14:39:03 GMT

OK, so my daughter started Kindergarten this year. She finally adapted to not getting a nap; but today we recieved an email from her teacher that she fell asleep during carpet reading. I don't know if this is related to her arthritis or not. Last week she was home with a fever and slept most of the day. So it could be this as well. She goes to bed a 8pm and sleeps right through her sister's antics. Did any of you have similar issues with your child; if so how did you handle it? We just don't know what to do. Any help will be very appreciated. Thanks.

Are your rheumys recommending H1N1 vaccine with or without mercury?

Kerri Thomas — Wed, 28 Oct 2009 23:01:32 GMT

Our peds office just got in a limited supply of H1N1 vaccine, but it contains mercury. I read that there will be a batch of mercury free vaccine coming, but it may take awhile. Have any of your docs said anything about it mattering which one your child receives?

Strollers/Wagons/Wheelchairs?

Tracy1 — Sun, 18 Oct 2009 10:30:01 GMT

Cassie is now 6 and weighs 50lbs. And the umbrella stroller just isn't cutting it anymore. I really don't want to move to a transport wheelchair if I can help it since she only needs it when we're at the mall or zoo or something with lots of walking. I've found the McLaren XLR stroller, but that is $350! And a friend suggested that maybe insurance would buy it. What about pulling her in a wagon? Anyone else dealing with this and found any solutions? Thanks in advanceTracy, mom to Cassie (6, JPsa)

New diagnosis of JRA

charlie'smom — Fri, 25 Sep 2009 02:16:12 GMT

Last november, our 7 1/2 yr old son woke up one morning and couldn't straighten one of his fingers. We went to the ped and then a hand specialist, and they said he had a "trigger finger". We treated him with prednisone x 5 days and it went a way. Weird? ...a month later, he started to complain that his foot hurt. We had been playing in the snow in new boots, and I thought it was that. He was limping and complaining. I looked at his foot and it appeared to be really swollen, - sprained or maybe broken. We went and had it xrayed, but there was no fracture, or sign of sprain. So we drew labs, and they were negative. I feared then that it was some kind of arthritis, but the peds thought it might be a virus or an injury, but no injury had occurred. A few weeks later, he woke up in the am crying about his hip hurting. We went to the Ped again, and they suggested that maybe he was under stress from a difficult teacher he had at school. Several weeks later, he woke up i the middle of the night crying about knee pain. His knee was obviously swollen and we took a photo and went to the ped office. We were referred to specialist about 2 hours away. Because he did not seem to have Symptoms that lasted "6 weeks or more" in one joint, we were told that maybe he was developing jrs, but did not fit the criteria. The Ped Rheumatologist thought maybe had had Anylosing Spindyolytis, this really scared us. Labs and xrays were taken and all were negative. We were told to just watch and wait and see what happened. Since that time, our son has had 2 more times where he complained about his knee, one more time about his hip, and 2 more trigger finger episodes, where he needed to have steroids. Ibuprofin or naprosyn seem to work really quickly for the non-finger joint pain and swelling. We recently went to a new Rheumatologist, who upon hearing the entire story, diagnosed him with "inflamatory arthritis". He said that because of the atypical presentation, he was unable to diagnose which type of juvenile arthrits he thinks this is, but that it falls under the "umbrella" of JRA.
So, here were are now, and this new MD, who we really liked and have heard really great things about, prescribed Plaquenil for our son to start taking right away, and wants to see him again in 2 months. My husband and I are feeling really afraid of all of this. I have scoured the internet for info about this med and have read lots of pros and cons. The side effects seem big for such a little guy. But, part of me is still waiting "to see if it happens again". I have read here that this is a common theme among parents of JRA kids. I'm just not sure if his symptoms outweigh the potential risk of taking an anti-malarial med, one I have heard that helps, but nonetheless a big med. Any thoughts, ideas, insight, experiences or ANY input about ANY of this would be much appreciated, as we feel like we are kind of flailing at this point. Thanks for reading all of this! Glad to have found this web site, it has been really helpful.

No Pain??

Katie Sust — Sun, 11 Oct 2009 00:28:56 GMT

Hi...this is my first time on here, but I have so many questions and I just feel like I can't get answers. I thought I'd check with all those other parents out there to see if anyone else is wondering these same things.

My daughter (3yr) was diagnosed in 4/09 with JA. I just happened to notice (in 11/08) that her left index finger was swollen. A month later I noticed her thumb had changed as well. At that point I made an appointment with her ped. After an appointment with her, blood work (which was negative) and then a trip to UCSF, she was diagnosed with one of 2 kinds of JA (polyarticular or psoriatic). At this point She has probably 6 or 7 swollen joints, all in her hands. She was on naprosyn for 2 months with no improvement and she has been on naprosyn and methotexate for 4 months with no improvement. She has never complained of any pain. She still has not pain. It doesn't seem that the arthritis has gone into any other joints either. She does have a terrible rash. It is clusters of tiny bumps. Sometimes there will be one large bump with tiny ones all around. She will also have large red spots that appear to be dry. I haven't been able to get any kind of answer about the skin issues. She never had any problems of this sort before the meds yet the doctors keep telling me it is unrelated. I'm kind of going a bit crazy. I really hate giving her this medication as it is, on top of the fact she isn't dealing with any kind of pain. Anyone dealing with this same thing?

I have read a few posts on here from parents about their children developing symptoms a month or two post-immunizations. My daughter rec'd immunizations early Oct. of '08. She developed on and off high fevers after that, followed by the onset of this disease. Very interesting.

Any input is greatly appreciate :)

Thank you so much!

Katie

Roll Call

Mom to Alex — Wed, 05 Aug 2009 11:55:35 GMT

This is something we do every so often on some of the other groups/forums I am involved in. It can be very helpful, especially for the new folks. So.....share as much as you are comfortable with.

Who are you/your family?

What is your child's diagnosis? How is your child currently doing?

When was your child diagnosed? How long did it take?

What mediacations is your child currently taking? Previous meds?

What therapies or alternatives have you tried?

Does your child have any other diagnosis?

Advice for newly diagnosed kids and their families?

Anything else you want to add?

Thanks!

Karen and Alex, 6, poly (04/09)

Yikes I just typed everything out and my computer ate it...I'll try again later.

Symptoms subsiding

J Mom — Thu, 22 Oct 2009 05:40:49 GMT

My daughter(11) started with syptoms the beginning of Sept. We are finally going to a ped rheum the end of Oct. She had pain and stiffness in both knees and ankles and then her back. It then started to migrate to an elbow and stiffness in fingers. The past few days her legs are almost pain free and her back is doing well too. I am going to keep her appointment, but will the Dr. be able to dianose anything when her symptoms are going away?

Fear of Blood Draws - Help!

CritterHill — Tue, 11 Nov 2008 09:53:45 GMT

With all the parents on here, surely someone must have a brilliant idea.

My 5 year old is terrified of blood draws. Like, pull her out from under the table screaming terrified.

She is on MTX, so we take her every 3 months to get blood draws done. This has been going on for the better part of 2 years and she is still terrified.

We have gone to 4 different places to find one with a phlebotomist she likes. I bring treats for the draw, I take her for ice cream afterwards, I have her look away when they do it, I have had her watch when they do it. Doesn't matter, as soon as she hears blood draw, she freaks (screams the entire car ride).

Actually having her watch the stick oddly was better than trying to keep her from looking away. But not by much.

I'm just about to offer her a new puppy every time we get this done!

What else can I try to get her to stop freaking out over them?

Yes, tomorrow is blood draw day. I suspect I won't be sleeping much tonight - I'M starting to dread them!

Experience with Kineret?

Tana — Tue, 02 May 2006 12:29:21 GMT

Hi everyone: my Ben (seems like there's a lot of Ben's with this disease here :( ), is down again with a flare of his systemic jra. The doc re-increased his MTX (together with Enbrel) last visit because he was going downhill consistently. Now it looks like he may have to start Kineret (anakinra) shots next month. Who's had experience with these? I heard they hurt and I know you have to administer every 24 hours. yuk. But it's the only approved IL-1 inhibitor out there right now. Comments? Thanks, tana

Juvenile Arthritis Support Group in D.C./VA suburbs

Robin . — Thu, 29 Oct 2009 11:37:52 GMT

http://rasupport.wordpress.comor go to this website to view a calendar of event and other member profiles:www.meetup.com/gfarthritis

H1N1 vaccine and Enbrel

Wanda Vanhorn — Tue, 20 Oct 2009 11:29:14 GMT

I have a great concern on the whole H1N1 vaccine for all my girls but for my 8 yr old who has JA I am even more worried.She takes Enbrel, MTX, and Mobic for her JA and Rheumy says she need the H1N1 vaccine. Now the H1N1 virus is scary in its self but how much testing could have been done for kids on these meds? My understanding is there hasn't been that much testing done to begin with so was any testing done in regaurds to kids with JA taking these meds? I can't seem to find anything.So is everyone getting this vaccine for there kids with JA or are you going to ride the storm out? I am still on the fence as the girls ped. isn't reccomending it, but then again Rheumy is. Any thoughts?

swollen lymph nodes

diane torre — Mon, 28 Sep 2009 02:29:46 GMT

My daughter who is 5 1/2 was diagnosed with pauciarticular arthritis when she was almost 2. She has taken naproxen off and on for the last 3 1/2 years with two ankle injections. She has had swollen lymph nodes in her neck for 8 months. Her rheumatologist and pediatrician do not know why the lymph nodes are swollen. She has no other sypmtoms and her lab work comes back normal. Does anybody have any idea why her lymph nodes are swollen? Perhaps this has happened to someone else's child on Naproxen with JRA.

Rectal bleeding

Julie Innes — Thu, 22 Oct 2009 11:32:06 GMT

Hi everyone,My (almost) 11 year old daughter was recently dx w/ poly JIA. She has been on Naprosyn for 4 weeks now. She informed me yesterday that she has been bleeding after having bowel movements, probably about 4-5 different times. She says it's not a lot, but she is sure it's "coming from the back." I'm not sure if the blood is in her stool, or maybe some constipation is causing the bleeding. Either way, she assures me that this is has NEVER happened before. I have a call into the doctor, but was just wondering if anyone else's child has experienced this.Also, she has been having bloody noses again quite often. She does have a history of them, but not since last year, and not this frequently. I know the cold season isn't helping, but again wondering if this could be from the meds. I will mention it to the doctor as well. Her little legs are covered with bruises now, too!~Julie

Alternative Medicine

Janell DiCarlo — Tue, 20 Oct 2009 10:11:06 GMT

Just wanted to know if anyone out there has tried alternative medicine to relieve symptoms of arthritis or help get the arthritis into remission. I've been taking my 14 year old daughter, who was diagnosed with RA this past summer, to a chiropractor. It has been helping relieve some of the pain. I am looking into a more controlled diet to see if we get any improvement in her condition. Has anyone tried alternative methods? I am hoping to not have her on medication for the rest of her life. Any thoughts...?

Video Games Can Play Havoc With Kids' Joints

AF Dude — Tue, 20 Oct 2009 10:05:47 GMT

American College of Rheumatology's presented this study this weekend at their annual meeting in Philadelphia saying video games play havoc with kid's wrist and fingers.[url=http://www.arthritistoday.org/news/video-games-pain-kids020.php]Video Games Can Play Havoc With Kids' Joints[/url]

Depression??

Julie Innes — Sun, 04 Oct 2009 22:16:28 GMT

Hi everyone! I am new to this board and I am looking for some input from other parents that have possibly been in our shoes.

My daughter (almost 11) was diagnosed 2 1/2 weeks ago with Poly JIA. We will know more at her next appt. in Nov. She is not in a lot of pain, but the dr. feels most of her joints are inflamed and affected. He is also suspecting ankolysing spondylitis. Right now, the only meds my daughter is taking is naprosyn. So far, so good, although I do not believe it is helping at all yet.

My primary concern right now is my daughter's mood swings. She is normally a very happy child, but it seems like since her diagnosis, (and since the naprosyn) she is very down and cries very easily. I struggled with her all day trying to get her to start working on a class project that is due later this week. This is not something that would normally push her over the edge, but every little thing lately has her so upset. Last week she was crying because she doesn't want to do ballet anymore. She loves ballet!! I know the logical thing would be that her diagnosis has her upset or concerned, but she seems okay with that. I'm wondering if anyone knows if there are side effects to the naproxen?? Has anyone else experienced depression in a pre-teen child after starting meds? I am concerned that after her next appt. the doctor will prescribe her something stronger...how will she tolerate that? This is all new to us, trying to get as much info as possible, but it is so overwhelming.

Thank you for any input,

Julie

Creative and Performing Arts camp for JRA patients

SamiJ — Fri, 16 Oct 2009 22:37:21 GMT

Hi everyone,My name is Sami and I am new here to this forum. I specifically do not have JRA, but I do have a list too long to name of other health issues. Specifically I have a genetic immune deficiency, an autoimmune clotting disorder that is lupus derived, and psoriatic arthritis in my hands and lower spine. My dad has been diagnosed with RA since he was in his early 30's, and probably went undiagnosed for at least a decade prior. Right now he is on methotrexate and Enbrel. It helps to some extent, but he is still in a lot of pain. He was really helped by Vioxx, but clearly that's no longer an option. He also has gout, which further complicates things. My mom has dealt with skin cancer this past year, and has been having a buzzing sensation going down her leg. A recent x-ray showed solid arthritis. Apparently arthritis usually doesn't show up on an x-ray unless it's pretty bad. They believe it's RA since that runs in her family too. All of these chronic health issues in my family has lead me to the decision to open up a creative and performing arts summer camp for ages 13-18 that have hematological, oncological, immunological, and rheumatological health conditions called C.H.O.I.R. Stars. I know I have dealt with so many limitations in my life, and I want to provide a creative environment where these teens can participate in everything. Our goal is to create a limitless environment where we can provide hope and inspiration through the arts. Classes in art, dance, music, theatre, and writing sessions will be available for the campers along with field trip sessions at the end of the day such as touring an art museum, going to see the touring company of Wicked with a talk back after the show, and having a dance company come in to perform. I truly want this to be a fun experience for all involved. Since this is our inaugural year, I'm working on getting the message about the camp out. Most of our staff members have all dealt with the same chronic health issues that the teens attending the camp have. I'm very involved on the forums that relate to my health conditions, and thought this might be a great way to make people aware that a camp like this is out there. The first session is being held August 1st-8th, 2010 in Milwaukee, WI. If anyone wants further information, you can check out the website at http://www.choirstars.org.

Methotrexate and nausea

Janell DiCarlo — Sun, 27 Sep 2009 21:14:05 GMT

My daughter has been diagnosed with Polyarticular Juvenile Rheumatoid Arthritis. We started her methotrexate treatments two weeks ago. She takes the medicine injections well on Friday nights, but by Sunday morning she feels nauseous, which continues for the rest of the day. Is there anything I can do to help eleviate the nausea?

Does your JIA child bruise easily?

CatP — Tue, 06 Oct 2009 22:22:57 GMT

My daughter has always bruised easily. Her platelet count is normal and she is no longer taking Naproxen. This is something that has been occurring even before her diagnosis. She would even get little bruises on her back just from sitting in the cart at the grocery store. I haven't found anything about this online.

Anyone else experience this?

thanks, Cat

What do you do to keep your kids safe from winter illness?

Kymberli Mundwiller — Thu, 08 Oct 2009 04:11:37 GMT

Well, we had a StL trip to make yesterday. Christiaan had a rheumy appt for Wed,
which was our 2nd opinion. We went ahead and made the appt, since Shriners had
referred us, and if she didn't flare the whole time we waited, then we would
just cancel and forget a 2nd opinion. She did flare while I was in the hospital
with the kids, and then, the other night, she was in such bad pain, she didn't
even come down or yell at me about it that night. The next morning, my DH could
barely make it down the stairs. His hip was flaring, and he could barely move.
They have flared at the same time before, this is the 2nd time. DH says he
doesn't remember NOT having intermittant hip pain. I wonder if HE should be
taking her to the rheumy. Well, I had everything ready to go, packed, snacks,
even new socks now that it is getting cold again.

And, my mother calls. She had the flu, fever and chills, the night before and
was afraid of not telling me ahead of time. Yeah, it could be just a 24 hr thing
(and I highly suspect she had her flu shot recently), but she could still be bad
tomorrow, and one has to cancel 24-48 hrs ahead. And, since we are coming so far
away. She lives with my brother, SIL, and their 2 kids, so I imagine someone
will be sick by then anyway. So, as I don't have anyone else that I would trust
to watch my kids (I forgot about my friend that lives near the hospital), or to
stay with if not her, AND I can't imagine going 4 hrs to not visit my 76yo
mother. So, I decided to postpone, as Christiaan has been doing pretty well, and
we weren't sure we were going to keep the appt anyway. They had to push it off
to Nov 16th, but at least that is a Monday, where if this happens again, my DH
could take off. He can't for a Wed. My bio mother has also had the flu in the
last 2 wks. My stepmother said it is going around STL.

And, guess what? She started flaring Tues night. We could have been to see the rheumy this time WHILE she was in pain.

So, this is the thing. We have strict instructions by our 21 mo old son's pulmo ped to
keep him out of crowds. Obviously, we need to keep his exposure down, and all
this stuff has started already. It isn't flu or pneumonia that causes him the
worst issues, although I don't know that it wouldn't now that he has asthma, but
just plain cold viruses. And, no one really quarantines themselves if they just
have a cold. KWIM? Now, he doesn't have an immunity problem, but an
airway/heart/asthma issue.

We have a good emergency plan for him in place. THe dr has a maint med for him,
emergency meds, and as a last resort, emergency 02 for home, until we can get
him to the dr/ER an hr away. Now, as far as preventative, we are having our
oldest son change his clothes after he comes home from public school, and he
washes them himself, and wash his hands. We have GermX for the cars and home,
that we can use after being in public. If we come from the dr's office, we could
also change our clothes. We are cutting back on activities that involve a lot of
ppl or a lot of children. We use the alcohol stuff at the drs/clinics when we
leave.

And, not just him, but Christiaan flares badly when she gets sick, and my 7yo now has asthma.

There are a lot of kids here that are put on immunosuppressants. What do you do
to protect those children from the flu season? Do you just live life normal,
because it is hard to really put anyone in a bubble? With a large family, I
can't restrict our activities all that much or well. I may be able to keep the
baby from these type of activities, grocery store, church, etc. But, the other
kids need these types of things. The rest are HSed, so they are already
protected from a lot of germs. Is there really anything else I can do besides
what we are doing? I would really like to keep him out of the hospital this
winter. It doesn't seem to be getting better, although they said he would be
"normal" by age 2. I know that he could still have issues up to ages 3-5yo. But,
asthma may never go away. There is no age limit on that.

So, WDYD during the winter? It doesn't seem like anything has been killed off
around here, because MO seems to be getting tropical. Our summers haven't been
that hot for the last two, and our winters are never really that cool anymore. I
remember having VERY cold winters as a teen (and snow on Halloween 29yrs ago),
but that isn't true anymore. I can smell the mold if it has rained between our
small towns. I wonder if we will have to move closer to the city just for our
health. I have NEVER had allergies and I have them now, but not when I go to
Marshall. I always feel so much better there. But, betwen Warrensburg and our
town, it is awful. I am better in our house, so if our house is better than the
outside air, that is pretty pitiful. I know we have mold in some of our rooms or
by some of the windows.

Any ideas? Kymberli

?? Herpes Simplex vs Impetigo

NancyA — Mon, 05 Oct 2009 17:51:56 GMT

Hi All

My daughter is 6 yrs old. Dx in 4/09 with Poly JRA. She has had a red cluster of tiny pimples near her chin (no where near her mouth and they were never blisters?. While getting her flu vaccine the other day I asked her Ped to take a look. She thought possibly herpes or impetigo , So she's treating her for both. Alternating Zovirax ointment and antibiotic ointment. We've done this since tues last week. I haven't seen any improvement.

I will call the Rheumy tomorrow but just wondering has anyone seen this.? Thanks in advance.

Nancy

JRA and Acid Reflux

Angela Gallacher — Fri, 15 May 2009 13:37:58 GMT

My daughter is almost 7 and has poly JRA. When she was born she had sleep apnea and acid reflux. She had acid reflux so bad that we would have to watch the monitor to make sure she wasn't going to turn purple. Now she is doing good but I was reading posts and notice a few cases of acid reflux. Back then and recently I would of never connected them until I read the post. I would like to know if this is happening alot with JRA cases. I am trying to connect the dots.

JRA Research

Theresa Wren — Fri, 02 Oct 2009 14:07:09 GMT

I am relatively new to this disease as my daughter was just diagnosed at the end of July at 19 months old.

Are there any websites that talk about supplements, diets that may help relieve symptoms?

What about current JRA research? A coworker has had a lot of success corresponding with researchers around the world about treatments for muscular dystrophy so I am trying to find the same resources for JRA.

this helped me

pat bernard — Thu, 01 Oct 2009 19:59:17 GMT

I found this pharmacy online best service and prices you should try them the lady was extremely helpful. http://www.247expressmeds.com/

Stress or Time for a Flare Up??

Kymberli Mundwiller — Tue, 22 Sep 2009 16:46:58 GMT

Hello, it has been a while since I have been here. My DD is still undiagnosed, but we do have a second opinion with a STL rheumy on Oct 7th coming up.

Christiaan seems to flare about every 3-4 weeks. It doesn't last a really long time; this time was started mild one day, bad the next, and mild the next. I thought the last flare may have been our last. I just keep thinking that this one might be our last.

But, this is what was going on while her flare was brewing. My 7yo DD was hospitalized due to asthma on Monday afternoon. Fortunately, she didn't have to have o2 long. Now, her asthma is confirmed. Her last flare up was jun 08. DH stayed with her that night.

This was the virus that Christiaan gave the others, but her cough was about gone. She only had a cough, no arthritis pain.

Tuesday, our 21 mo old boy joined her in the hospital, for respiratory distress, also caused by this chest cold. I had to be with him at 26 wks PG, so I was with both of them, and becoming miserable myself. I still have something in my chest. He is the one most at risk though, and has been in and out of the drs/hosp, on 02 for the 4th time now. They had a hard time getting him off the 02 and getting him home. I finally figured out that the bronchodilators (the albuterol mainly) was causing his decline every time they were trying to wean him. We'd be transferred or home on 02 if I hadn't figured this correlation out. He's home now, and doing well on steroids for a few more days. He really can't have rescue meds though, so our plan when this happens again (and we all know it will), we're not sure what our recourse will be.

So, on Tues, she was having some minor pain she didn't share with me (a 3), on Wed, while with DH and the other kids, she was at a 6 and pretty miserable. THe next day, it was waning away.

It was about the time that she would flare if she was going to. She doesn't have a monthly yet, but maybe it will be a pattern when she does. ??? Or was it the stress that brought it on? THe baby didn't come home until Sat morning and she was all better by Friday, I think. So, just time for her to flare?? It def lasted longer than some of her other flares that start to finish were only 24-36 hrs.

Maybe this question has been answered before.

I also wanted to check in and tell you all where I had been. Wed at the hospital, I also started having a high leak again, but it cleared up. The first one was at almost 20 wks. My BP has also been steadily rising, and I am at the point where even the MW wants to keep an eye on it, when I forgot to tell her that I run really low, and her baseline is not really the correct one. I am praying that I can just stay at this BP for the rest of my PG (or get better), but I don't know if that is possible.

Kymberli

MTX or JA effects on 5 year old's moods?

JAmom — Wed, 22 Jul 2009 22:16:58 GMT

Hello, I've only known that my son has JA for a year or so. He's on MTX and seems to be tolerating it well. After school, I have noticed that he whines a lot about walking home, taking off shoes, washing hands, etc. Sometimes he is quite emotional. I'm at the point where I'm wondering if maybe the JA or the MTX just does not make him feel well. He says he feels fine. Sometimes he says that his feet do not hurt but they feel tired. He runs around and keeps up with the other kids and seems to be doing well--so I cannot tell if he is just being cranky or whether the JA is just putting him in a bad mood. I hate not knowing if he feels achey--yet I do not want to overcater to him if he is just misbehaving. In fact, I think I have babied him a bit post-diagnosis because I was so distraught about it. Now he expects 100% of my attention 100% of the time! I am needing to set some limits, but if the poor kid does not feel well, I do not want to be hard on him. Doc says his inflammation markers are at a normal level, so I thought that would mean he should feel well now? is it the MTX?
JAmom

Pred not working anymore

Jennifer Haveman — Wed, 30 Sep 2009 19:30:56 GMT

I had to call the Dr last week because even with the meds that were working,MTX, Enbrel, and Pred. My son started complaining of mare pain and in areas that were not effected before. He doesn't give a certain area but tells me he hurts all over. Complaining of Back pain, then shoulders and now jaw. I am not sure if he is getting an immunity to the steroids or what. The Dr said to double the pred but still no results. I only had my happy kid for about a month. I am just wondering if anybody else has had anything like this happen to their child. It is very frusterating. any help would be greatly appreciated.

Jennifer

Juvenile Arthritis Ice Cream Social

Donna341 — Wed, 30 Sep 2009 09:30:26 GMT

YOU'RE INVITED

WHO: Children, teens and adults with any JA diagnosis and their families

WHAT: Juvenile Arthritis

Ice cream Social & Fun Day

WHEN: October 24, 2009

2:00pm-5:00pm

WHERE: Country Club Estates Club House

3040 Country Club Lane

Jeffersonville, IN 47130

RSVP: 502-409-4841 or ajaoky@aol.com

Plaquenil

charlie'smom — Mon, 28 Sep 2009 01:48:20 GMT

Hi. I thought I would ask specifically if anyone here has had any experience with the medication, Plaquenil? Our Rheumatologist prescribed it for our son and we are trying to get more information. Thanks!

Newly Diagnoses and Freaking out about MTX

Theresa Wren — Tue, 01 Sep 2009 19:13:17 GMT

My daughter was recently diagnosed with poly JRA at age 19 months. She is on Naprosyn now but she still has swelling, stiffness and weakness in knees, ankles, elbows and now a finger. The ped. rheum. wants to put her on MTX next but I am scared. I have read about all the horrible side effects and my baby is so young. Does anyone have any positive experience with MTX? Do the effects minimize over time? I'm still reeling from the diagnosis and trying to cope with our new life. Thanks!

What causes a Flare Up?

NancyA — Mon, 21 Sep 2009 15:03:15 GMT

Good Afternoon,

My daughter has been doing well on MTX and folic acid. I can't remember the last time we gave her Motrin. About 2 weeks ago she began with a sore throat, stuffy nose, no fever. It seems to have resloved but she's been saying she's stiff in her jaw, fingers and knee. Geez how long will this last now?:unsure:

I'm wondering if this illness is causing the flare or is it the cool air here in NY? . This is her first flare since beginning treatment . Her last visit in Aug was a good one with better range of motion and normal labs.

Any Thoughts? Thanks

Nancy

Flare ups and hippotherapy

Barbara McCune — Mon, 14 Sep 2009 08:52:46 GMT

My 8 yo daughter has had Polyart JRA for 6 yrs, and I've noticed that she really never "flares up" though I read in the literature that flare ups are common. Does everyone else's child stay in the same general painful/stiff realm, or do most parents see flare ups several times a year? Also, my rheumy is a horse owner, so has prescribed "hippotherapy" (horse riding) for us -- has anyone tried that one yet? I'd thought hippotherapy was more for CP and MD kids.

Thanks for whatever help you can provide!! This has been a llooonnnnggg, and unpleasant road.

Barb

My friend is in process of setting up a foundation for kids living with RA and making their dreams come true.

emily olstade — Thu, 03 Sep 2009 22:47:10 GMT

I know once the are fully approved they will be looking for their kids. It will be much like the make a wish foundation for terminal kids, but for kids who have JRA and other auto-immune diseases that fall under the basket. I thought this was a great place to post about it, as I know they cant wait to get started. www.jgcaf.org. There website is under construction, and right now it is just a homepage, but in a few weeks it will be a fantastic website.

Please once they go "live" in a few weeks, please, please, submit your child's dream or wish, and they will attempt to make some of them come true. From going to disneyland, meeting a celebrity, meeting a sport star, getting a makeover, going to a pro sports game, going fishing, going on a trip, whatever it may be, we will do our best to make it come true. The whole immediate family will be included, because this disease affects the whole family, and we want all to be part of these dreams coming true.

Please give us advice or thoughts before we go "live" because the foundation is really for the kids, and it is jeffs way of giving back to the kids, who the public seems to have forgotten, and not care about this dreadful disease, that affects him as well.

As parents, would this be of interest to your child and your family?
Just trying to get some feedback.
Thanks.
If you feel more comfortable, please email jeff himself at
jeff@jgcaf.org
I know it means a lot to jeff, as I know he is trying to hold on to his dreams, despite having RA, and showing kids to hold on to their dreams.
Do please give him some feedback if you can as this is a new foundation, and as parents or young kids, jeff and his team need help in making this as great as possible. Please give us feedback, good or bad, and any thoughts.

Warts and Hiccups?

Mom to Alex — Tue, 11 Aug 2009 11:54:54 GMT

Hi all...two quick questions?

1.) Has anyone's child gotten warts...that spread rapidly? Alex had a wart on the back of his thigh...we tried the OTC stuff the pedi suggested in July but he said it burned...so I stopped. I was going to talk to the pedi on Monday when we have an appointment but last night I noticed they (or something else) had spread...a lot. I mentioned it to hubby and he said he noticed it prior to his first Enbrel injection on Sunday. (My fear was it was a reaction to the Enbrel...and why did he not mention it to me????) He gets eczema and these are where he gets the eczema (behind the knees) but it is not eczema. Any ideas? Also, can he have them lanced if he's on MTX and Enbrel? (Rheumy's on vacation until the 25th...called the nurse but...she may not have the answer.) We see a dermatologist on Thursday.

2.) I noticed since we started the naproxen Alex gets hiccups...almost daily. Could it be from the naproxen? Anyone have this happen? It's odd...and possibly not related...but maybe is?

Thanks,

Karen and Alex, 6, poly (04/09)

Enbrel...finally did 1st injection.

Mom to Alex — Mon, 10 Aug 2009 13:40:04 GMT

After two weeks of insurance issues and the pharmacy fiasco (wrong version of Enbrel and pharmacist who refused to order the right one) and then another insurance issue...I finally gave my little guy his first injection last night. It took me two nights to finally work up the nerve...first battle was those awful Enbrel instructions on how to mix it ;) ...and then to actually inject my son with it. I don't know if it was the recent news on Enbrel...or just having to finally admit my child is 'that' sick/impacted that we have come to this so quickly. But it was hard...mentally.

I do want to say...I am so proud of my guy however...in a heartbreaking and gut wrenching sort of way. Just four short months ago it took five adults to hold down my 36 pound five year old to do his first blood draw...he hated needles When we do his MTX injections...he is asleep...we tried it when he was awake but he got too upset. So, while we plan on giving the Enbrel while he is asleep...I explained to him that the first shot would be while he was awake...just to be certain he wouldn't have any reaction. He said OK...but I still expected a bit of a fight...or more.

Yesterday was his sisters b-day party and he spent hours in the pool and was exhausted but happy after dinner. Daddy had to run out on an errand...and for some reason I decided that this was it...even though I was alone (Daddy usually helps with the MTX.) So I mixed the Enbrel and walked into his room and said...now's the time. And you know what...he let me do it...no fuss or fighting. Just a couple of fearful tears and that was that. I can't believe how 'grown up' he is becoming....my now six year old didn't even fight or tense up. As proud as I am...it still hurts that 'my child' has to endure this awful disease...and 'grow up' in this regard.

Now, onto my question...I know the response time varies in each child...but for those of you who saw positive results...how long did it take? I am so hoping this brings my son some much needed relief....soon!

Thanks and all the best,

Karen and Alex, 6, poly (04/09)

joint pain is gone

Juile — Fri, 11 Sep 2009 11:25:20 GMT

Maybe her immune system was just a little run down from surgery (I am guessing).... but Nicole's joint pains have subsided and it is looking like the disease is NOT coming back. Thank God!!!!

I don't get a chance to log on as much anymore, because I don't work at my old job, but I wanted everyone to know that I have appreciated all of you sharing your stories and being a huge support to me and to eachother. This forum has helped me a lot throughout the years and I don't know what I would have done otherwise. It is such a rare disease, that most of us probably don't know anyone else with it. No one can understand what a parent goes through unless they have been through it. Thank you all!

Marked improvement.

NancyA — Sat, 05 Sep 2009 20:54:55 GMT

Hi all,

I haven't written much lately, but still follow everyone's story.My 6yr old daughter was dx in 4/09 with POLY JRA. She began with Motrin then moved on to Naprosyn.That gave her no relief. She's been on MTX and Folic acid for 10 weeks so far. At the 8th week visit the MTX was increased to 15 mg weekly, since 10 mg is only the starting dose. Her Range of motion has increased and the Dr is very pleased.

She rarely complains of pain and if she does it's usally in her jaw.Only then do we give her a pain reliever. She hasn't experienced any side effects from the MTX at all. Her blood work is great. I prepared for the worst, thinking the MTX was going to give her all those terrible effects everyone talks about.

Early and aggressive treatment caused us concern but it seems it was the right decision for our child.

Nancy+Daughter Dx 4/09 with Poly JRA