RE: Rob's Rheumy visit

January 2, 2008

That is great news . keep it up, Rob!!!

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January 2, 2008

isnt dr passo great I am glad that your son is doing so well, I had

to call them again today caleb has a rash what seems to be the

honest to goodness JIA rash (i emailed my pics to passo's nurse) She

passed them off to the good dr I was thinking that maybe it was a

drug rash since he just stated on the naproxyn but he said looked

like our JIA rash that he has been suspecting cant give deff dx

until he sees him again on monday then we will look at our pictures

again togehter and i am to take more pics if the rash comes back. I

will be glad to get on a treatment program given that he is still

convinced on monday that this is jra (JIA) and just go every few

months instead of every week. how long of a commute is childrens for

you a little over an hour for us. So glad to hear the good report!

and thanks for all of your posts and feedback its pretty scary when

this is just new and everyone around you has no clue about this

disease.

thanks again

(caleb ? systemic JRA (JIA per Passo)

>

> Hi all:

> Rob saw Dr. Passo today for his twice yearly now (YEAH!) follow

up. As suspected, Dr. Passo agreed with us that Rob looks GREAT!!

> The most interesting part of the visit was that Dr. Passo was

remarking on Rob's hypermobility. He said as Rob gets better and

better, the hypermobility increases. He was amazed at his shoulders

today, how loose they were. This is the very reason it was so hard

to get Rob diagnosed. Being hypermobile, when you get arthritis, it

just 'limits' your mobility more to the normal range. So even though

he was in severe pain, his joint exams in those bad old days were

not so bad, since it was not known before hand he had been

hypermobile. To me, this sheds light on a lot of kids' situations in

this group.

> Anyway, Dr. P. is keeping Rob on the same meds (I was relieved,

why mess with a good thing!). We go back in 6 months. I did not have

the nerve to ask if he was planning on a weaning of meds any

time...that will be hard if he decides to do that. We will just wait

and see! I am sooooo hoping that this is medicated remission and

maybe, just maybe, if there is a wean sometime in the future, he

will be found to be in an honest-to-goodness remission!

> and Rob 18 JAS

>

January 2, 2008

I hope that Monday brings a new treatment plan and course of action, and gets

Caleb to feeling much better very very quickly.

We are about 2 hours away from Cincinnati, we live in Southern Indiana

(Louisville, Kentucky area, where we all were born and raised). We moved 'across

the Ohio river' about 12 years ago.

We just love Dr Passo and its hard to believe we have been seeing him for over 5

years now. He has truly come to love and always cracks up at what Rob has

been up to. Rob is quite a character and Dr. P appreciates that....and we

appreciate him so much because he gave Rob his life back and a future!!!!!

What city in Ohio do you live in? I heard that further north there was a lot of

snow today. We took longer than usual, as we got near to the Ky/Ohio border it

was pretty slick, but we left early so arrived right on time.

Rob goes back to the chest surgeon tomorrow, dentist tomorrow afternoon, and

back to college on Friday!

He doesn't have to see his nephrologist at Cincinnati Children's again until

June...he was doing so well in that department last summer, he got decreased to

once a year!! So we are so relieved and pleased with Rob's progress on his many

health issues.

Take care and keep us posted; glad you are here, Georgina has made the best

group on the whole internet in my opinion!

and Rob 18 JAS

Re: Rob's Rheumy visit

> isnt dr passo great I am glad that your son is doing so

> well, I had

> to call them again today caleb has a rash what seems to be the

> honest to goodness JIA rash (i emailed my pics to passo's nurse)

> She

> passed them off to the good dr I was thinking that maybe it was

> a

> drug rash since he just stated on the naproxyn but he said

> looked

> like our JIA rash that he has been suspecting cant give deff dx

> until he sees him again on monday then we will look at our

> pictures

> again togehter and i am to take more pics if the rash comes

> back. I

> will be glad to get on a treatment program given that he is

> still

> convinced on monday that this is jra (JIA) and just go every few

> months instead of every week. how long of a commute is childrens

> for

> you a little over an hour for us. So glad to hear the good

> report!

> and thanks for all of your posts and feedback its pretty

> scary when

> this is just new and everyone around you has no clue about this

> disease.

> thanks again

> (caleb ? systemic JRA (JIA per Passo)

>

> >

> > Hi all:

> > Rob saw Dr. Passo today for his twice yearly now (YEAH!)

> follow

> up. As suspected, Dr. Passo agreed with us that Rob looks GREAT!!

> > The most interesting part of the visit was that Dr. Passo was

> remarking on Rob's hypermobility. He said as Rob gets better and

> better, the hypermobility increases. He was amazed at his

> shoulders

> today, how loose they were. This is the very reason it was so

> hard

> to get Rob diagnosed. Being hypermobile, when you get arthritis,

> it

> just 'limits' your mobility more to the normal range. So even

> though

> he was in severe pain, his joint exams in those bad old days

> were

> not so bad, since it was not known before hand he had been

> hypermobile. To me, this sheds light on a lot of kids'

> situations in

> this group.

> > Anyway, Dr. P. is keeping Rob on the same meds (I was

> relieved,

> why mess with a good thing!). We go back in 6 months. I did not

> have

> the nerve to ask if he was planning on a weaning of meds any

> time...that will be hard if he decides to do that. We will just

> wait

> and see! I am sooooo hoping that this is medicated remission and

> maybe, just maybe, if there is a wean sometime in the future, he

> will be found to be in an honest-to-goodness remission!

> > and Rob 18 JAS

> >

January 2, 2008

Yay for Rob!!! Relief for Mom too!! Esp with school stressors and such!!

I'm very interested in something... I wonder how much of a correlation there

is with hypermobility and JA.. and how often Dx is missed or doesn't fit the

criteria as a result. I ask because this has been something I deal with too!

I have always had a lot of hyperextensive joints... been overweight a long

time and before my joints got worse.. like in Jr high, I could do the splits

better than the skinny cheerleadrs. I could also do like the.. what do the

call it.. like a standing 'camel' (figure skating).. not on ice but i could

stand up and hold one leg up in the air straight above my head or leaning

against a wall and it would just shock the heck out of people. I also have

that in my thumbs , etc.

When I was last in PT, the PT was stretching out my muscles and joints and

noticed that I had a lot more hyperextension in my knees than most people

and I always wondered in my mind when some of these joints weren't as limber

any more if this was the JA affecting it but no one picks it up cause my

joints are so flexible already... so when you said that. my mind flags went

up.. lol.

Anyways just had to comment on that.. im curious about it... I have a lot of

cathing up to do on this listserve and email.. lol.

Hugs

Izzie

On Jan 2, 2008 3:26 PM, nurse0300 <nurse0300@...> wrote:

> isnt dr passo great I am glad that your son is doing so well, I had

> to call them again today caleb has a rash what seems to be the

> honest to goodness JIA rash (i emailed my pics to passo's nurse) She

> passed them off to the good dr I was thinking that maybe it was a

> drug rash since he just stated on the naproxyn but he said looked

> like our JIA rash that he has been suspecting cant give deff dx

> until he sees him again on monday then we will look at our pictures

> again togehter and i am to take more pics if the rash comes back. I

> will be glad to get on a treatment program given that he is still

> convinced on monday that this is jra (JIA) and just go every few

> months instead of every week. how long of a commute is childrens for

> you a little over an hour for us. So glad to hear the good report!

> and thanks for all of your posts and feedback its pretty scary when

> this is just new and everyone around you has no clue about this

> disease.

> thanks again

> (caleb ? systemic JRA (JIA per Passo)

>

> >

> > Hi all:

> > Rob saw Dr. Passo today for his twice yearly now (YEAH!) follow

> up. As suspected, Dr. Passo agreed with us that Rob looks GREAT!!

> > The most interesting part of the visit was that Dr. Passo was

> remarking on Rob's hypermobility. He said as Rob gets better and

> better, the hypermobility increases. He was amazed at his shoulders

> today, how loose they were. This is the very reason it was so hard

> to get Rob diagnosed. Being hypermobile, when you get arthritis, it

> just 'limits' your mobility more to the normal range. So even though

> he was in severe pain, his joint exams in those bad old days were

> not so bad, since it was not known before hand he had been

> hypermobile. To me, this sheds light on a lot of kids' situations in

> this group.

> > Anyway, Dr. P. is keeping Rob on the same meds (I was relieved,

> why mess with a good thing!). We go back in 6 months. I did not have

> the nerve to ask if he was planning on a weaning of meds any

> time...that will be hard if he decides to do that. We will just wait

> and see! I am sooooo hoping that this is medicated remission and

> maybe, just maybe, if there is a wean sometime in the future, he

> will be found to be in an honest-to-goodness remission!

> > and Rob 18 JAS

> >

January 2, 2008

we live in a very small town in brown county ohio called sardinia.

It was very slick out here today my husband is both a career

firefighter and a volunteer firefighter here in our local town and

he had to respond to 2 wrecks right in a row around 11 am he said

that it was bad and you know if a man says that they are slick well

at least my husband always under estimates the road conditions! Take

care sounds like your visits to childrens are dwindling which is a

good thing that Rob is getting better! What is he studying in

college?

> > >

> > > Hi all:

> > > Rob saw Dr. Passo today for his twice yearly now (YEAH!)

> > follow

> > up. As suspected, Dr. Passo agreed with us that Rob looks GREAT!!

> > > The most interesting part of the visit was that Dr. Passo was

> > remarking on Rob's hypermobility. He said as Rob gets better and

> > better, the hypermobility increases. He was amazed at his

> > shoulders

> > today, how loose they were. This is the very reason it was so

> > hard

> > to get Rob diagnosed. Being hypermobile, when you get arthritis,

> > it

> > just 'limits' your mobility more to the normal range. So even

> > though

> > he was in severe pain, his joint exams in those bad old days

> > were

> > not so bad, since it was not known before hand he had been

> > hypermobile. To me, this sheds light on a lot of kids'

> > situations in

> > this group.

> > > Anyway, Dr. P. is keeping Rob on the same meds (I was

> > relieved,

> > why mess with a good thing!). We go back in 6 months. I did not

> > have

> > the nerve to ask if he was planning on a weaning of meds any

> > time...that will be hard if he decides to do that. We will just

> > wait

> > and see! I am sooooo hoping that this is medicated remission and

> > maybe, just maybe, if there is a wean sometime in the future, he

> > will be found to be in an honest-to-goodness remission!

> > > and Rob 18 JAS

> > >

January 2, 2008

Hi :

So glad the appt went well...yay for Rob & Mom!!!! Sorry we've absent for a

couple of weeks, every one of us has been sick. Three of us are now on

antibiotics so hopefully we are on our way.

Very interesting about him being hypermobile...you know I feel that is our HUGE

hurdle in our now almost 2 years without a real diagnosis. Hannah just said to

me last week that she is getting MORE hypermobile. She moves in ways that just

a few months ago she could not. For instance she can reach behind her back

(over the shoulder with one hand and around from the waist with the other) and

grasp hands (I can touch hands, but not grasp my hands together). She was not

even close to that a few months ago. She can also lay her thumb flat against

her wrist, again something she could not do a few months ago. Well I guess we

just have to pray she does not injure herself again until we figure out our next

step.

Good luck with the rest of Rob's appts. How are you feeling? Have you noticed

a change since you started your new treatment?

Beth & Hannah, 11, unspecified arthrtis; hypermobility; asthma; gerd & migraines

Sending prayers & happy thoughts,

Beth :-)

Rob's Rheumy visit

Hi all:

Rob saw Dr. Passo today for his twice yearly now (YEAH!) follow up. As

suspected, Dr. Passo agreed with us that Rob looks GREAT!!

The most interesting part of the visit was that Dr. Passo was remarking on Rob's

hypermobility. He said as Rob gets better and better, the hypermobility

increases. He was amazed at his shoulders today, how loose they were. This is

the very reason it was so hard to get Rob diagnosed. Being hypermobile, when you

get arthritis, it just 'limits' your mobility more to the normal range. So even

though he was in severe pain, his joint exams in those bad old days were not so

bad, since it was not known before hand he had been hypermobile. To me, this

sheds light on a lot of kids' situations in this group.

Anyway, Dr. P. is keeping Rob on the same meds (I was relieved, why mess with a

good thing!). We go back in 6 months. I did not have the nerve to ask if he was

planning on a weaning of meds any time...that will be hard if he decides to do

that. We will just wait and see! I am sooooo hoping that this is medicated

remission and maybe, just maybe, if there is a wean sometime in the future, he

will be found to be in an honest-to-goodness remission!

and Rob 18 JAS

January 2, 2008

Thanks for an encouraging email!! So happy for you all!!!

As for the hypermobility, it is very interesting. I've mentioned several

times before that is very hypermobile and it makes it hard for them

to figure out what's going on.

It's also encouraging to hear so much good about Cincinnati Children's

rheumy dept-we've been considering going there for a second opinion.

Jinny (pauci ? 11)

On Wed, 02 Jan 2008 18:05:33 -0500 snooksmama@... writes:

> Hi all:

> Rob saw Dr. Passo today for his twice yearly now (YEAH!) follow up.

> As suspected, Dr. Passo agreed with us that Rob looks GREAT!!