[JustBarbara]

Good luck with everything - as others have said, getting the early diagnosis is key and now you know what you have to worry about instead of the unknown. Hang in there - he is just adorable.

[GCS]

Thanks for the update.

Are you set up for a flexible savings account to cover your medical? Its not a huge savings up front but you do get the pretax advantage and it makes it easier to track all your expenses at the end of the year for a deduction.

You should have access to this at either company regardless as to whether you use their insurance.

I am wondering if, after you get this under control, he might not graduate out of some of the other services. Like if he moves quickly out of OT now that his body is more comfortable. He may have better concentration too.

We're thinking of you and your guy. I can only imagine how frustrating this all is for you!

[angelkisses0102]

Thanks!

GCS~
I have $55 per week taken out of my pay for my Healthcare Spending Plan to help cover the difference between the deductible and what my empoyer deposits. I can't raise it again until open enrollment (end of 2009 for 2010...) I don't think...I'll ask HR today.

I feel that some of DS's sensory issues were definately related to pain...and fully believe to most of his attachment struggles. It makes sense attachment wise because his situation in Russia was never really 'that bad'...kwim? He stopped OT late last year...we just do gymnastics and have what looks like a sensory room at home. I'll be curious to see how the pain management will impact both this and his ADHD-like behaviors.

I also am reading that kids with this often don't feel like eating due to how they feel...and we blamed that on sensory ~ internal regulation when in fact it was probably due to this. Just since we started the Advil and now the neproxen...he is eating better and actually started drinking cow's milk...heavy chocolate syrup however. But we told him the medicine may bother his belly so he needs to eat and drink either cow's milk or pedisure (we differentiate because he used to love rice milk.) And boom...he is drinking whole milk (lots of fat and calories!!) So we are hoping that FT will soon be athing of the past...he actually has started bits of pizza in the past two sessions...

And this morning...he woke up in a great mood...and said his knee felt great. He followed that up with...'so I don't need to take my medicine' so I'm not certain what the actual intent was...but he was one happy camper today.

Thanks again...

[MamaChinch]

HUGS!!!! I am sorry, poor A!!! You will get through all of this and come otu the other end.....!!!
Sending up prayers for you all, too!!!

[celebratewewill]

thinking of you and your son and your family. may the treatment for JRA help in even more areas of his life. i know it's easier said than done, but do realize there is no way you could have known this, that you are a good momma!!

((((hugs))))

[mcanvasback]

Karen, I am truly sorry to hear about this and i sincerely hope there is a 'silver lining' of sorts in that his other issues resolve themselves.

[angelkisses0102]

Thanks all...well we definitely feel the eating issues were a direct result of the pain/discomfort he was in. I have NEVER seen my son eat as much as he has in the last few days. He's also shared that's he's 'pooping more'...makes sense with the huge caloric intake he's been doing! LOL! Luckily he's a boy who enjoys sharing all about his poops!

While we struggle with the DX (he needed his stroller at the mall today...which equals wheelchair to me right now)...we are thrilled to have an answer that actually makes sense!!! And it is something we can and will treat actively!

Thanks again all!!!

[angelkisses0102]

A little update...

I got a very detailed consultation report from the pediatric rheumatologist yesterday...that alone impressed be immensely and just cements the good vibe I got from him at our first meeting. (YAY!) Anyway...per the report he feels DS's condition is "chronic and polyarthritis...probable JRA/JIA." The specific disease category is a bit of a surprise...it is not the most common form...but thankfully is not the rarest/most severe form. About 30% of the kids with JRA/JIA have this specific disease...so only about 90,000 kids in the US. DS has at least 9 joints involved...thus the polyarthritis DX (more than 5 joints involved.)

On Monday DS goes to the pediatric ophthalmologist to rule out uveitis and then two weeks later he goes back to the rheumy for a review of his bloodwork, his response to the neproxen (NSAID), additional DX and therapeutic recommendations.

We are all beginning to adapt...I have found an online support group...although it is a bit hard reading about some of the kids as they are much more severely impacted than DS is at this time. We have not found any local families...but I am working on that as well. We are busy informing ourselves...learning as much as possible before the next appointment...and generating lots of questions that need answering.

Thanks again for the support.

[votemom]

i'm so thankful with you that you really like your specialist. what a blessing that will be long-term!

thanks for keeping us updated.

[angelkisses0102]

Well we visited the rhuemy yesterday and we found out we will be taking the long and winding road to get our son into remission. His case is considered moderate to severe...I'm not surprised but I am heartbroken, yet again.

We have added weekly methotrexate injections beginning this Saturday night as well as folic acid Monday thru Friday to help offset the side effects of the methotrexate, to the twice daily naproxen. We will be moving onto Humira injections as soon as DS hits 40 pounds and we've tried the methotrexate for at least three months...we have to try it first. Injections were my fear as DS hates needles...it took five adults to hold him down to do his bloodwork...which will now be done monthly. We will do the injections while he is sleeping...per the rhuemy...it's a small needle and he may not even awake. But even if he does...he will not be tense during the injection itself so the injection site will recover better.

We had hoped to get DS into a clinical research trial for the Humira (then it would have been free verses $800 per month) but for once in his life...DS weighed too much! Speaking of which...now that his pain is controlled...he has gained TWO pounds in the past six weeks for a total of six pounds in the past nine months. (This is huge as he weighed 30 pounds at age three and four and only 32 pounds at his five year old check up last July.)

We have entered this world against our desires...but we are learning to navigate it quite well. I have found two online support groups...introduced myself today on one...will do so on the other soon. We are on a first name basis with the pharmacy and the insurnace company is on speed dial. I am finding there is financial help out there until we reach my insurance deductible and then we will only pay $50 per month for the Humira. I have been blessed with uncovering a co-worker in our main office 1200 miles away who has RA, is on Humira, and has our same insurance plan...all from a 'chance' phone call the same day we visited the rhuemy for the first time last month.

Our goal remains as it always was...getting DS into the best possible 'place.' I now understand why this baby boy was referred to us so long ago...although it is hard to understand the 'why' of his struggles...at least has his friends and family here to love him through it...as well as access to top doctors and the best and newest medications!

Thanks again for all your thoughts, prayers and support...we will be needing them for a while.

Karen

[DPline]

Glad to hear you are at least making progress!

I don't know if you already know it - or even if it can be used in children - but methotrexate does come in tablet form. You may not be able to get it in the correct dose for him, but just thought I would mention it if you didn't know. I use the injectable as the pills upset my stomach, but I also don't mind the needles.

Good luck! I am keeping you guys in our prayers!

P.S. I know the feeling of being on a first name basis with the pharmacist. The pharmacist and all her staff know me well, but it is great because they do take good care of me.

[GCS]

I am sorry to hear about the injections. But maybe as he is feeling better they will seem like less of a big deal to him.
His weight gain is outstanding! That is really good news!

Thinking of you guys!
Christina

[momraine]

I am glad you are making progress and will keep you guys in my prayers.