[angelkisses0102]

Per this thread...OT~ Getting concerned...DS's knee is swollen and warm... I am starting this thread in hopes of getting any info and/or experience from parents of kiddos who have JRA.

Thanks!

[momofMikhail]

My nephew has Juvenile Rheumatoid Arthrits in his knees. What kind of information are you looking for? Me and my sister are very, very close, and I've been there throughout the entire process with my nephew. If there is anything I don't know I'm sure my sister will. You can also look up just about anything dealing with JRA on WebMD.com. If there is anyway that I can help let me know.

My nephew would curl up into the fetal position and cry when his knees hurt sometimes. And there was nothing any of use could do to make it better. Before his ped. put him on his meds, we would try tylonel and advil and they would help some, but not enough.

My thoughts and prayers are with your ds and family. Again, if you have any questions let me know.

[angelkisses0102]

Thanks so much...I really don't know what I want to know at this point...lol!

Mainly, I guess, just that if this is what he has...that we are not alone and that he will be OK! His knee already looks world's better...and he is no longer in pain or limping.

It's just so scary that my 5 year old is going to a rheumatologist.

[momofMikhail]

medicine has done wonders for my nephew! Rarely does he have any pain or swelling anymore. When he over exerts himself he will have some discomfort, but nothing like he use to. We really have to watch him during baseball season (sometimes he has to sit out the end of a game, but not too often). If I remember correctly my nephew was about 6 when it was discovered. Before that the ped. thought it was just growing pains.

I hope your ds is feeling better soon!

[MamaChinch]

K ~ no advice, just HUGS!!!!!!!!!!!!
I am so sorry he has to go through all of this! Keeping prayers out all will be fine in one way or another!

[GCS]

Sorry, no advice here. I am thinking of you guys!

[tbristow]

My ex-husband developed it at the age of 9. I'm sure there are a lot of good treatments out there if needed. His family got help from one of the Shriner's hospitals.

[angelkisses0102]

Well it's offical, DS has Juvenile Idiopathic Arthritis (formerly called JRA.)

I am a mess of MANY emotions right now...even though we expected the diagnosis...it was still a blow to my heart. I'll give a better update tomorrow (and probably vent a bit as well) but for now...I'm off to have a big ole glass of merlot and then try to regroup.

Thanks for your thoughts!

[GCS]

I am thinking of you guys!

As hard as all of this is to digest, having the right dx so early is a blessing. And in his case this might explain so many of your past struggles.

Enjoy your wine and regroup tomorrow.

All the best,
Christina

[DPline]

I am sorry.

Praying that now you have a diagnosis, they can develop a treatment plan and get it controlled quickly.

(((hugs)))

[jeannecr]

It's so tough to have a child with a medical problem. The early diagnosis and treatment will help a lot. Thinking of you and your little one too.

[amyfk]

HI Angelkisses,

Im sorry you had a very rough day. Even though you kinda of expected to get a dx, I guess actually having your fears confirmed is hard. I think youre doing the right thing by trying to get as much information on this issue as possible. I wish you and your little one the best, I really do.
Amy K, NJ

[megaphonemo]

One of my brothers' twin daughters has JRA... I think in her thumb and toe and maybe one knee. They live near Philly, so they are near CHOP - which is awesome. He said the shots were hard at first, but she came to realize they made her feel better (she is now 5.5, but it started at around 2.5 or 3...). They just got word a few months ago that they can now stop the shots - all is looking good!! Get thee to a children's hospital!!

GOod luck, and know that getting an early DX is great!!

[lisam00]

I'm sure it was hard to actually get confirmation of the diagnosis but like others have said, early diagnosis is a wonderful thing.

I likely had this lousy stuff for ages before I got diagnosed and my joint damage has been extensive.

My advice to you about this is to take your time and allow it all to settle in. Give thought to seeing the absolute best doctors that you can and read all you can about treatments and therapy ideas.

I'm sorry that he has it but I'm thankful that he's going to start treatment early. He (and you) are in my prayers.

Lisa

[angelkisses0102]

I feel so bad for DS…we were just getting settled so nicely into all of his currents dx’s and therapies and routines and now this. I know things could be much worse and I am thankful for the fact that he is here and this is not life threatening…but it is life-altering. &%$#! And I am having a bit of a pity party for him and us.

His arthritis is in his right knee, right hip, left shoulder, and possibly one of his big toes (forget which one…got a bit overwhelmed at the rheumatologist.) It was exactly two weeks ago he woke up with his knee swollen…so it is still all very new to all of us. He is already on a prescription for naproxen sodium…which he hates…we have to get regular eye exams (there is an associated eye disease)…which he hates…and we have our next rheumatologist appointment at the end of April…luckily he likes this doctor... as the doc stated he will be his treating physician for “years.” Worst of all…he has to have blood drawn for like 10 different tests…that he beyond hates…that WILL be traumatic. Hasn’t this kid struggled enough already?!

And of course I feel so darn guilty…this has been going on since the start of school in August…but we blamed it on growing pains or normal little boy injuries. Actually looking back…this dx explains so much of what we have seen with him since he was a baby…my poor kid has been in pain and we didn’t even realize it. (Good call GCS!)

I also feel lucky…because while it is expensive and we have a $4000 deductible…we do have great health insurance…and DS will be able to see the top pediatric doctors, get the therapies he needs, and take whatever medications will work best. Of course due to our financial situation and the current ecomony…I am scared because we barely live paycheck to paycheck right now and we have upcoming big expenses before this that we do not have covered. And that big deductible means out of pocket for us…although my employer does give me $625 a quarter toward it…we have no back up…like no savings, no retirement, no credit cards and no ability to get them. But things keep working out on the financial front...so I will continue to have faith this too will all work out. (And DH's employer may actually start offering a good and much cheaper health insurance plan. )

Thanks again for all the support...I know we are blessed to have discovered this already...and I hope and pray DS is one of the kids whose arthritis is easily and quickly controlled.

Thanks...
K