Val

[Guest guest]

Val:

I know that Robbie's appt is tomorrow, please know we are keeping you in

thought and prayer. Did you ever hear from the rheumy's office on

Friday???

and Rob 15 Spondy

[Guest guest]

Hi Marai,

Thanks, I am glad that Monday is almost here. Robbie has had some relief from

the nightly Senna - though nothing substantial. I didn't give it last night,

because the pedi had said 3 -4 nights - and Friday was the 4th - and today he

has had more problems, so it did seem to help. I was concerned in the middle of

the night, because Robbie woke me and told me that it hurt when he urinated. I

had him drink more water - and this morning he said it didn't hurt, and still

says tonight that it doesn;t hure, but that I can tell the doctor about it

happening - so i wonder? He still has problems getting the flow going, and

feeling like he has to go back - so the senna didn't do enough to release that

pressure.

I didn't hear from the rheumy - but perhaps it is taking longer to confer with

the new pedi rheumy - maybe she wanted to review his chart or something before

making a recommendation. I'll give it another couple of days, before I start

calling.

I am glad to hear that Rob was recovering well from the battle with the tree. I

hope all this continues to work for him! It is so exciting to hear the new pain

levels (LOWER!!!)and of the bike riding! It makes me so very happy!

Robbie has had a good weekend - he needed Motrin after practice on Friday, again

yesterday, and before the game today - but he had a great time and played well.

He doesn't always catch the ball - but he is consistently the one paying

attention and going after it. He had some good hits, and made a couple of runs.

They got him out on second base once - and you could see the anger on his face -

he whipped that batting helmet off, and for a minute there I was afraid he was

going to throw it down! But he recovered his composure quickly, and made me

proud. I told him in the car on the way home how great it was that he was able

to shake it off so quickly. Robbie's team won 17 - 15. Robbie sat out the 4th

inning when the team was in the field, they rotate players becasue there are so

many. Anyway - one of Robbie's friends was on the other team, and his Dad came

over after the game and told Robbie that they might have won if Robbie had

stayed on the bench for a second inning! Robbie just beamed! Also, as we were

leaving after the game, a couple of parents and one of the coaches from the

other team remarked on how well Robbie played! That was so cool. We had to

rush to the nearest place with a bathroom after that - but Robbie made it though

the game with no problems. I am so grateful for baseball! It brings Robbie so

much happiness, and positive feedback from male role models. We've had a good

day, in spite of all the time going back and forth to the bathroom this evening.

I hope we get some answers tomorrow!

Thanks again, ! It means so much to me - your support and prayers and

friendship!

Val

Rob's Mom (6,systemic)

[Guest guest]

Hi Val,

I've read you posts lately with much trepidation and have felt your

anxiety with every nerve of my body. It is probably not the same,

but I will offer that we had terrible bowel problems exactly one

year ago when Hunter was at his worst. He was finally diagnosed

after 4 years and put on mtx. 25mg and pred. 35mg at age 7. He had

terrible bowel problems with constipation where he didn't have a bm

for 10 days and then another 10 days and senna and lots of apples

and suppositories and finally enema time and time again for about 4

months. I don't recall a urination issue, but just thought I'd

offer that this was a serious issue for another systemic. I have no

idea, nor do the docs. whether this was disease related or drug

related.

I am feeling for your hard times.

Stacia and Hunter 8 systemic, iritis

> Hi Marai,

> Thanks, I am glad that Monday is almost here. Robbie has had some

relief from the nightly Senna - though nothing substantial. I didn't

give it last night, because the pedi had said 3 -4 nights - and

Friday was the 4th - and today he has had more problems, so it did

seem to help. I was concerned in the middle of the night, because

Robbie woke me and told me that it hurt when he urinated. I had him

drink more water - and this morning he said it didn't hurt, and

still says tonight that it doesn;t hure, but that I can tell the

doctor about it happening - so i wonder? He still has problems

getting the flow going, and feeling like he has to go back - so the

senna didn't do enough to release that pressure.

>

> I didn't hear from the rheumy - but perhaps it is taking longer to

confer with the new pedi rheumy - maybe she wanted to review his

chart or something before making a recommendation. I'll give it

another couple of days, before I start calling.

>

> I am glad to hear that Rob was recovering well from the battle

with the tree. I hope all this continues to work for him! It is so

exciting to hear the new pain levels (LOWER!!!)and of the bike

riding! It makes me so very happy!

>

> Robbie has had a good weekend - he needed Motrin after practice on

Friday, again yesterday, and before the game today - but he had a

great time and played well. He doesn't always catch the ball - but

he is consistently the one paying attention and going after it. He

had some good hits, and made a couple of runs. They got him out on

second base once - and you could see the anger on his face - he

whipped that batting helmet off, and for a minute there I was afraid

he was going to throw it down! But he recovered his composure

quickly, and made me proud. I told him in the car on the way home

how great it was that he was able to shake it off so quickly.

Robbie's team won 17 - 15. Robbie sat out the 4th inning when the

team was in the field, they rotate players becasue there are so

many. Anyway - one of Robbie's friends was on the other team, and

his Dad came over after the game and told Robbie that they might

have won if Robbie had stayed on the bench for a second inning!

Robbie just beamed! Also, as we were leaving after the game, a

couple of parents and one of the coaches from the other team

remarked on how well Robbie played! That was so cool. We had to

rush to the nearest place with a bathroom after that - but Robbie

made it though the game with no problems. I am so grateful for

baseball! It brings Robbie so much happiness, and positive feedback

from male role models. We've had a good day, in spite of all the

time going back and forth to the bathroom this evening. I hope we

get some answers tomorrow!

>

> Thanks again, ! It means so much to me - your support and

prayers and friendship!

> Val

> Rob's Mom (6,systemic)

[Guest guest]

Hi Stacia,

Thanks for the information - poor Hunter must have been miserable. The last

time Robbie had this type of problem was when they started him on Naproxen.

(They will never give my baby that med again) - some of those issues may have

been the Naproxen then - the rest who knows. Robbie has been taking the pred and

the cyclosporine for such a long time - but who knows with long term meds what

can happen? His hightest pred dose was 33 mg, it's been awhile since he's taken

that amount. They seem pretty sure that it's a polyp - but time will tell - now

we wait for the scope to verify everything. Just like with JRA, he has up and

down time - most of the time he feels pretty good - but has a lot of

uncomfortable times throughout the day. Thanks again - I was so pleased to see

how well the rheumy visit for Hunter was.

Val

Rob's Mom (6,systemic)