Update on Robbie

June 7, 2004

Hi Helen,

Thanks for the message. It is great that Nick is learning to save his energy

and rest up before a game. These kids are truly amazing in their ability to

adapt. Rob's games both were rained out on Saturday, so I am hoping that they

are rescheduled for different dates. He was really disapointed Saturday

morning, he woke up early and came to tell me that it was raining really hard,

and he didn't think he was going to be able to play. We spent the day playing

games in doors, - I didn't get all the housework done this weekend - but he

needed the extra attention. I hope Nick is doing well.

Val

Rob's Mom (6,systemic)

In a message dated 6/3/2004 5:26:52 PM Eastern Daylight Time,

hburger64@... writes:

>

> -Val..

>

> Wow what a kid that Robbie is.... hes doing just awesome, heck, im so

> proud of him and im not even his mom!!! Good for him to keep going.

>

> Nick is basically the same way, he enjoys the game so much that he

> just keeps at it and runs though the pain. I loved that the other

> day his older brother wanted him to play outside after school and

> Nick said no, he wanted to rest up before his baseball game. I think

> hes learning.....

>

> Im sorry about the change in medcial support.. i bet it must be

> trying have to go though your whole " story " with each new doctor and

> then have to learn their ways.. im sure each ped rheumy does things a

> little differently and you must keep on your toes keeping up with

> them,.

>

> Good luck to Robbie for his ALL STAR game.. he will do just great and

> let him know theres a lot of us rooting on for him on the sidelines,

> even if the sidelines are 100's of miles away!!

>

> hugs Helen and (6,systemic)

>

> ! Robbie saw the Rheumy last Wednesday and he and the team were very

> happy with his progress and with his labs - which are approaching the

> normal range. He appears to still have some active involvement in

> his shoulder upon exam - but otherwise he was great the day of the

> exam. Naturally he complained of pain in several joints that evening

> (seems to be a norm following his appts - it just dawned on me after

> this one that it must be due to the rigorous exam) he was fine the

> next am, had a baseball game the next evening and had pain following

> the game - which is becoming the norm, but last week he had pain the

> following morning as well, and limped into school. (appt was Wed,

> game was Thur, he had pain Friday)- then he was ok friday night, had

> a game Sat - pain that evening and the next day) - he says it's worth

> it to play - and is really playing very well.

> >

> > I expect each time we go in to see the rheumy, that we will begin

> discussing the " next step " , which in my mind is the next med - the

> maintenance dose isn't doing it's thing - it's time to prevent the

> next flare, not wait to see how far we can go before it happens.

> Anyway - we get close it seems - we have the " when we're in better

> control we'll look at.... " discussion and then nothing. Last

> Wednesday I went in thinking I would have to generate the discussion -

> when they told me that Robbie's rheumy was transferring to

> Washington state (military - break one in and get ready for the next

> one), and that they would schedule Rob's July follow up in the

> clinic - that the rheumy nurse would let me know if there were any

> changes, that they THINK the clinic will be there (meaning the

> pediatric rheumatology) -that after July they weren't sure where they

> would be seeing the pediatric patients, possibly the Navy Hospital in

> Bethesda (really close) - or ??? With the war they are cutting back

> here at Walter on services to non active duty in some areas -

> and apparrently there has been talk for some time of moving all

> pediatric services to Bethesda. So, I just decided to wait until

> July with the new whoever and begin discussing a new plan of action

> with the new doc. Chances are I could be looking for a whole new

> place of care - or dealing with the same, ever changing team in a new

> location. We'll see.

> >

> > The next part is an additional update on Robbie's ball playing.

> Last night he had a game (I had to give him his prn Motrin for pain

> last night and this morning - he was having trouble moving around.)

> But, he's happy to be playing. He had a great game last night,

> batting well, made two runs - and while playing first base during one

> inning (they rotate positions)managed to go after the ball and get

> two guys out on first base. He was beaming. The rest of the story

> is that that the league has " All-Stars " teams that play a round of

> games after the season (sort of like a tournament) - and generally

> the coaches nominate members for the All Stars. At Robbie's level,

> the coach selects players to send for the one All Stars game played

> at their level - just so they get to have an All Stars just like the

> big kids. Since they are just beginning - the coach decided to let

> the parents pick (I'm not sure how many from each team go) so we were

> given a list of all the team members and we were to vote for the 4

> that we thought should go. Last night after the game, the coach's

> wife (and team Mom) called me to tell me that Robbie had received the

> most votes, and to ask me if he would be able to participate in the

> All Stars game. I told her yes - but I am a little concerned because

> his team has a regular game on Saturday morning and the All Stars

> game is Saturday evening. He would be crushed if he couldn't play -

> I even thought of having him skip the morning game, but he wasn't

> thrilled with that idea either. I think that I will give him Motrin

> that am (before the pain) - and again between the two games. (Later

> Robbie asked me if I voted for him, I teased him and said " No, I

> voted for the kid playing third, " but then laughed and told him of

> course I did - along with 3 other kids).

> >

> > I find it amazing that he is even playing so soon after his flare

> in April - what a rollercoaster!

> >

> > I am still ridiculously behind in my emails - but I think of all of

> you every day.

> >

> > Val

> > Rob's Mom (6,systemic)

>

June 7, 2004

Hi Stacia,

Yes - I am so proud of him that I sometimes think I will burst. He is an

amazing child, and I am so very lucky to be his Mom. I wrote in some other

posts that the games for Saturday were rained out - but should be rescheduled

soon. Thanks for your encouraging words. I hope Hunter is doing well.

Val

Rob's Mom (6,systemic)

In a message dated 6/3/2004 4:31:13 PM Eastern Daylight Time,

staciar@... writes:

>

> Val,

>

> You must be overwhelmed with PRIDE. That just shows the

> perseverance your child has --- an attribute that will take him far

> in life no matter what else happens.

>

> I'm proud of Robbie, too. And yes, I'd keep him pumped full of

> motrin all dang day long.

>

> Stacia and Hunter,8,systemic,iritis

>

August 5, 2004

Hey guys - I am hopelessly behind in my emails again - I was so close to being

caught up before the conference. Robbie's flare continues, though there has

been some improvement since the steriod IV pulse on Monday (600 mg!!)no more

fever, but he is still having quite a bit of pain in the mornings and evenings -

still needing his prn Motrin twice a day. I have spoken with the rheumy nurse,

and she called me back to tell me that the doc robbie saw for the first time

last week had reviewed Robbie's history extensively, regarding the flares,

hospitalizations, steriod history, etc and wants to discuss starting a different

med. I told her that I thought it was long overdue, and that the status quo,

waiting for the next flare just wasn't enough, with the possibilities that are

out there - she then said " well, the trouble with systemics... " and before she

could finish her sentence I started rattling off what I knew, and which meds

probably wouldn't help Rob because of his persistent systemic symptoms - I

talked a little about Enbrel and Methotrexate - and that it wasn't likely they

would help much, and then I brought up Kineret - how it seems to really be

helping with systemic kids - and then talked about the daily injection issue,

and how some people are having severe injection site reactions - while others do

pretty well, and then she said that they have only used Kineret in a couple of

their adult patients, and I concluded by saying that I would dig out my notes

and be prepared for the discussion next week. I think I really surprised her -

I think she thought I may not be interested in another med, because of my focus

on all of the side affects of his steriod, cyclosporine combination - I guess

they really don't know how badly I want Robbie off the steriods completely, so

his bones will stop deteriorating, so he can grow and not be the shortest kid in

school (not in class, in school - going in the second grade,shorter than the

kids in kindergarden), so that maybe we can stop the hypertension, etc, etc. I

discussed a lot of this with a female pedi rheumy in one of the round table

discussions at the conference- and she started talking about the benefits that

Robbie obviously has had from the meds - and I told her that I was completely

aware that my son is alive today because of the steriod/cyclosporine combo - and

if that's the only way he can get up and go to school, play baseball and enjoy

life - I would continue giving them to him - but that doesn't mean that we can't

attempt to eliminate some of the side affects he already has, and prevent the

others before they start if there is something else out there that will help

him. So, here we are - I can't wait until next Wednesday - I am anxious,

nervous and hopeful all at the same time - and hoping to get the ball rolling

and into a routine with whatever we end up trying next before school starts.

Wish us luck! I have to dig back in the old posts now, and be prepared for our

discussion next week! Warm wishes for all of our kids out there!

Val

Rob's Mom (6,systemic)

August 6, 2004

Good for you Val that you were so ready for her. I bet she was surprised to find

you so knowledgeable. Good luck and get all your info ready for that drs visit.

You know we are all behind you in trying to find what will work best for Robbie.

Start digging thru Georgina's medical posts and you are sure to have lots of

info to get that dr moving! LOL Michele ( 17, pauci & spondy)