Re: Rob's 'Monday' update...

[Guest guest]

Wow ! This is great news. I bet you were holding your breath until

Monday came along!! I am soo glad to hear that Rob is getting some pep and

energy. What a blessing that his pain is starting to go down. I can't even

imagine the world of difference that must make for him!! We will continue to

pray for good results and answers regarding his other issue. I hope too that

if it does happen it is waay down the road!

Congrats again!

Alia and Caroline, age 2, poly and uveitis

Rob's 'Monday' update...

Ok, here goes...

Rob's pain level is continuing to drop, his swelling in his knees is

almost non-existent, his energy level is increasing, and he (or should I

say we) are riding bikes daily! Yes, he says its time I got in shape

since my RA is in medicated remission It is such a joy to see him

emerging from his pain. I didn't realize how UN-animated and subdued (at

least for Rob) that my child was, and how little activity he did, until

Enbrel started working.

He rated his pain yesterday as a '3' (down from 4 or 5 last week), the

usual hips, knees, and back pain. We realize he may never get total

relief, and that damage has probably already been done, but WOW...how

awesome to see him obviously feeling and doing soooo much better.

Thanks to all you guys for all your support!

Oh, I did get final biopsy results from Rob's nephrologist. One of the

findings clearly points to Alports, but some of the others don't. So they

are still about 95% sure. They are talking about doing some further

testing. The nephrologist is also going to consult yet another expert in

the field about Rob's case, and I faxed him a release form today so he

can discuss the case. Rob is tolerating the Cozaar just fine, and we will

go back in October to recheck his urine and see if it is making any

difference. We are just hoping that if he goes into renal failure, that

it is many years before it happens. We have hope!

and Rob 15 Spondy

[Guest guest]

Hi :

Wonderful news on the pain level and energy level. Pretty soon he will be

riding circles around you:) I know you will be loving every bit of it too.

The other things that the biopsy points to, are they better than Alports?

Did you get a severity measure? What type of further testing would they want to

do? I am glad to hear that his nephrologist is consulting with another

expert and leaving no stone unturned.

Renal failure, goodness, let's hope and pray it never happens or if it were

to happen, he's a little old man in his 90's.

Take care.

Patty

[Guest guest]

Glad to hear Rob's pain is down! It is good he is tolerating the med

well, and we hope right along with you that things go well. I hope when

you go in October there is a change to the positive for Rob. To quickly

answer your question about he is maintaining as of right now,

however he is 6'3 " at the last visit (although we believe he grew again

and is closer to 6'4 " ) but only 145 lbs still. His appetite is up and

down lately, but he does still eat well in my opinion. I am just

thinking that for some reason his body is not processing the food right.

I could be wrong of course, its just this nagging feeling I have. The

drs said that while growing taller should cause him to thin out, he

should not be losing weight while gaining height. When the JRA started

he was 172 lbs, but only about 5'8 " . So we shall see what if anything

this test can show. Enjoy those bike rides!! Michele

Rob's 'Monday' update...

Ok, here goes...

Rob's pain level is continuing to drop, his swelling in his knees is

almost non-existent, his energy level is increasing, and he (or should I

say we) are riding bikes daily! Yes, he says its time I got in shape

since my RA is in medicated remission It is such a joy to see him

emerging from his pain. I didn't realize how UN-animated and subdued (at

least for Rob) that my child was, and how little activity he did, until

Enbrel started working. He rated his pain yesterday as a '3' (down from

4 or 5 last week), the usual hips, knees, and back pain. We realize he

may never get total relief, and that damage has probably already been

done, but WOW...how awesome to see him obviously feeling and doing soooo

much better. Thanks to all you guys for all your support! Oh, I did get

final biopsy results from Rob's nephrologist. One of the findings

clearly points to Alports, but some of the others don't. So they are

still about 95% sure. They are talking about doing some further testing.

The nephrologist is also going to consult yet another expert in the

field about Rob's case, and I faxed him a release form today so he can

discuss the case. Rob is tolerating the Cozaar just fine, and we will go

back in October to recheck his urine and see if it is making any

difference. We are just hoping that if he goes into renal failure, that

it is many years before it happens. We have hope! and Rob 15

Spondy

[Guest guest]

,

I'm so happy for you and Rob that the Enbrel is having a positive

effect. Maybe it will become more effective in his body over

time??? We'll pray for that.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

..

O... what wonderful news that Robs pain level has gone down..

im so happy for him and for you. Its amazing to see your child doing

the things that other kids take for granted. It always brings a lump

to my throat.

I pray that tha alports doesn nothning and is controlled by meds to

a LONG LONG LONG time!!

hugs to you all

Helen and (7,systemic)

> Ok, here goes...

> Rob's pain level is continuing to drop, his swelling in his knees

is

> almost non-existent, his energy level is increasing, and he (or

should I

> say we) are riding bikes daily! Yes, he says its time I got in

shape

> since my RA is in medicated remission It is such a joy to see

him

> emerging from his pain. I didn't realize how UN-animated and

subdued (at

> least for Rob) that my child was, and how little activity he did,

until

> Enbrel started working.

> He rated his pain yesterday as a '3' (down from 4 or 5 last week),

the

> usual hips, knees, and back pain. We realize he may never get total

> relief, and that damage has probably already been done, but

WOW...how

> awesome to see him obviously feeling and doing soooo much better.

> Thanks to all you guys for all your support!

> Oh, I did get final biopsy results from Rob's nephrologist. One of

the

> findings clearly points to Alports, but some of the others don't.

So they

> are still about 95% sure. They are talking about doing some further

> testing. The nephrologist is also going to consult yet another

expert in

> the field about Rob's case, and I faxed him a release form today

so he

> can discuss the case. Rob is tolerating the Cozaar just fine, and

we will

> go back in October to recheck his urine and see if it is making any

> difference. We are just hoping that if he goes into renal failure,

that

> it is many years before it happens. We have hope!

> and Rob 15 Spondy