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Saturday, July 13

Hello everybody....

I have been reading messages, but to be honest, I have been so depressed I

haven't had the heart to write, until now. It is so good to read everybody's

comments and I am so lucky to have found you all...you are an incredible

group of people.

We had 's 3rd appointment with the rheumatologist on Tuesday, and it

did nothing but convince me that this guy (a ped rheumatologist at a

Children's hospital, no less) is completely uncaring. To make a long story

short, it was a terrible appointment. Complete with him having his cell phone

lying on the desk, it ringing and him ANSWERING it during our'consult'.

I won't go into all the nitty gritty details, but I did have a prayer

answered. He ordered a new MRI of Rob's hips, to be done on this coming

Monday. (I had been begging him since MAY to order a repeat MRI to see if the

joint effusions had improved any). I had called Shriner's in Lexington (about

1-1/2 hours away) a few weeks ago, and they were to mail me a packet of info

and an appointment, and I can't believe it, but they are getting Rob in this

coming TUESDAY! I had also called Riley Hospital in Indianapolis (2 hours

away) and they can't see him until August 26.

At any rate, I am getting copies of the MRI he has done on Monday and taking

them with me on Tuesday. I faxed Shriner's a release so they could get the

lab results jerk-head ordered this past Tuesday, and they left me a message

on Friday that they had already obtained them. Of course, Dr. Jerk hasn't had

the decency to call me with the results, nor will he. I obtained 's

records and found out that the jerk had the results of the HLAB27 a FULL

MONTH before our next appointment had been due, and of course didn't even

bother to call us with any results. I am just so glad that we are getting in

to Shriner's. After we scheduled the MRI, his office informed me that they

couldn't see Rob until 3 more weeks...so the Shriner's appointment will allow

us to get the results much much sooner. I also obtained the original MRI

films to take with us so that they can see how the hips look from March until

now.

Rob has gotten even worse. He has been falling, as his left hip is already

bad, and his right is getting worse. He is barely able to use his crutches

today. He has fallen 3 times in the last few days. We obviously are so

grateful to have this appointment on Tuesday, to hopefully get some answers.

I have worked the last 8 days straight (due to others' vacation times), not

full 8 hour days, but working about 6 and on call for 8, and I am thankfully

off Tuesday, Wednesday and Thursday. Amazing that the day that Shriner's

picked for our appointment is the first day I am off. Prayers answered!

Anyway, I know there are some on the list who go to SHriner's in Lexington,

and any advice or comments you can send our way would be appreciated.

Thanks for being here...

and Rob 13 jas

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Oh , how frustrating!! What a nightmare that Dr. sounds like. I'm so

sorry you have been having such a difficult time. That's great that Rob will

be seen on Tuesday. I hope that you get the answers that you need and

deserve. I will keep you and Rob as always in my thoughts and prayers. Big

hugs to you both.

Ellie and Riley 4 poly

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! that to me is totally unconcinable! He shouldn't be in the field

of patient care! especially a pediactric rheumatologist!

To have his cell phone on while in with a patient.

Well I don't think he would want to meet this Old SOB because he sure as

H3ll would get an ear full!

many hug for my buddy!

dolphin boy!

Uncle Rusty Limbs

On Sat, 13 Jul 2002 19:50:27 EDT snooksmama@... writes:

Saturday, July 13

Hello everybody....

I have been reading messages, but to be honest, I have been so depressed

I

haven't had the heart to write, until now. It is so good to read

everybody's

comments and I am so lucky to have found you all...you are an incredible

group of people.

We had 's 3rd appointment with the rheumatologist on Tuesday, and

it

did nothing but convince me that this guy (a ped rheumatologist at a

Children's hospital, no less) is completely uncaring. To make a long

story

short, it was a terrible appointment. Complete with him having his cell

phone

lying on the desk, it ringing and him ANSWERING it during our'consult'.

I won't go into all the nitty gritty details, but I did have a prayer

answered. He ordered a new MRI of Rob's hips, to be done on this coming

Monday. (I had been begging him since MAY to order a repeat MRI to see if

the

joint effusions had improved any). I had called Shriner's in Lexington

(about

1-1/2 hours away) a few weeks ago, and they were to mail me a packet of

info

and an appointment, and I can't believe it, but they are getting Rob in

this

coming TUESDAY! I had also called Riley Hospital in Indianapolis (2 hours

away) and they can't see him until August 26.

At any rate, I am getting copies of the MRI he has done on Monday and

taking

them with me on Tuesday. I faxed Shriner's a release so they could get

the

lab results jerk-head ordered this past Tuesday, and they left me a

message

on Friday that they had already obtained them. Of course, Dr. Jerk hasn't

had

the decency to call me with the results, nor will he. I obtained 's

records and found out that the jerk had the results of the HLAB27 a FULL

MONTH before our next appointment had been due, and of course didn't even

bother to call us with any results. I am just so glad that we are getting

in

to Shriner's. After we scheduled the MRI, his office informed me that

they

couldn't see Rob until 3 more weeks...so the Shriner's appointment will

allow

us to get the results much much sooner. I also obtained the original MRI

films to take with us so that they can see how the hips look from March

until

now.

Rob has gotten even worse. He has been falling, as his left hip is

already

bad, and his right is getting worse. He is barely able to use his

crutches

today. He has fallen 3 times in the last few days. We obviously are so

grateful to have this appointment on Tuesday, to hopefully get some

answers.

I have worked the last 8 days straight (due to others' vacation times),

not

full 8 hour days, but working about 6 and on call for 8, and I am

thankfully

off Tuesday, Wednesday and Thursday. Amazing that the day that Shriner's

picked for our appointment is the first day I am off. Prayers answered!

Anyway, I know there are some on the list who go to SHriner's in

Lexington,

and any advice or comments you can send our way would be appreciated.

Thanks for being here...

and Rob 13 jas

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,

Your e-mail sounds like Tas' story. I wish you all the luck in the world with

shriners. I know they have done wonders for Tas and we finally got her hip

problem diagnosed. Well I don't have a name, but her femurs are twisted and she

has no inside range of motion, so her knees and her feet follow, and that is why

her feet are turned in and she steps on herself and falls down all the time.

Much luck, my thoughts are with you.

Teddy bear hugs and love,

Casaria and Tas

---------------------------------

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,

Glad to hear that you are being seen at Shriners, & that the jerk head is

hopefully history! It makes my blood boil to hear of doctors behaving this way.

I hope that the appt goes well and that you find the right treatment for Rob

soon.

Val

Rob's Mom (4,systemic)

In a message dated Sat, 13 Jul 2002 6:50:27 PM Eastern Standard Time, snooksmama

writes:

>

>

> Saturday, July 13

> Hello everybody....

> I have been reading messages, but to be honest, I have been so depressed I

> haven't had the heart to write, until now. It is so good to read everybody's

> comments and I am so lucky to have found you all...you are an incredible

> group of people.

> We had 's 3rd appointment with the rheumatologist on Tuesday, and it

> did nothing but convince me that this guy (a ped rheumatologist at a

> Children's hospital, no less) is completely uncaring. To make a long story

> short, it was a terrible appointment. Complete with him having his cell phone

> lying on the desk, it ringing and him ANSWERING it during our'consult'.

> I won't go into all the nitty gritty details, but I did have a prayer

> answered. He ordered a new MRI of Rob's hips, to be done on this coming

> Monday. (I had been begging him since MAY to order a repeat MRI to see if the

> joint effusions had improved any). I had called Shriner's in Lexington (about

> 1-1/2 hours away) a few weeks ago, and they were to mail me a packet of info

> and an appointment, and I can't believe it, but they are getting Rob in this

> coming TUESDAY! I had also called Riley Hospital in Indianapolis (2 hours

> away) and they can't see him until August 26.

> At any rate, I am getting copies of the MRI he has done on Monday and taking

> them with me on Tuesday. I faxed Shriner's a release so they could get the

> lab results jerk-head ordered this past Tuesday, and they left me a message

> on Friday that they had already obtained them. Of course, Dr. Jerk hasn't had

> the decency to call me with the results, nor will he. I obtained 's

> records and found out that the jerk had the results of the HLAB27 a FULL

> MONTH before our next appointment had been due, and of course didn't even

> bother to call us with any results. I am just so glad that we are getting in

> to Shriner's. After we scheduled the MRI, his office informed me that they

> couldn't see Rob until 3 more weeks...so the Shriner's appointment will allow

> us to get the results much much sooner. I also obtained the original MRI

> films to take with us so that they can see how the hips look from March until

> now.

> Rob has gotten even worse. He has been falling, as his left hip is already

> bad, and his right is getting worse. He is barely able to use his crutches

> today. He has fallen 3 times in the last few days. We obviously are so

> grateful to have this appointment on Tuesday, to hopefully get some answers.

> I have worked the last 8 days straight (due to others' vacation times), not

> full 8 hour days, but working about 6 and on call for 8, and I am thankfully

> off Tuesday, Wednesday and Thursday. Amazing that the day that Shriner's

> picked for our appointment is the first day I am off. Prayers answered!

> Anyway, I know there are some on the list who go to SHriner's in Lexington,

> and any advice or comments you can send our way would be appreciated.

> Thanks for being here...

> and Rob 13 jas

>

>

>

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Hi ,

glad you are getting into Shriners tommorrow.I cant believe your rheumy had

a cell phone and answered it.Ive been in the peds office and our ped have to

excuse himself to take a important call,which is understandable,but that was

unexcusable.Sorry to hear that Robs hips have gotten worse.I know you would

like to have them injected which could bring much relief untill the other

meds kick in.I just hate how long it can take,at least had the pred to

get him up and about for a few hours a day.As much as I hate it I love it at

the same time,mayby Rob would benefit from a short course of it,doesnt sound

like an unreasonable request at all,or mayby the IV type.I know you have

lots of questions,and Im sure they will be answered.Good luck tommorrow I

hope they can do something to make him feal better quick.

Becki and 3systemic

Re: Update on Rob

>,

>

>Glad to hear that you are being seen at Shriners, & that the jerk head is

hopefully history! It makes my blood boil to hear of doctors behaving this

way. I hope that the appt goes well and that you find the right treatment

for Rob soon.

>Val

>Rob's Mom (4,systemic)

>

>In a message dated Sat, 13 Jul 2002 6:50:27 PM Eastern Standard Time,

snooksmama writes:

>

>>

>>

>> Saturday, July 13

>> Hello everybody....

>> I have been reading messages, but to be honest, I have been so depressed

I

>> haven't had the heart to write, until now. It is so good to read

everybody's

>> comments and I am so lucky to have found you all...you are an incredible

>> group of people.

>> We had 's 3rd appointment with the rheumatologist on Tuesday, and

it

>> did nothing but convince me that this guy (a ped rheumatologist at a

>> Children's hospital, no less) is completely uncaring. To make a long

story

>> short, it was a terrible appointment. Complete with him having his cell

phone

>> lying on the desk, it ringing and him ANSWERING it during our'consult'.

>> I won't go into all the nitty gritty details, but I did have a prayer

>> answered. He ordered a new MRI of Rob's hips, to be done on this coming

>> Monday. (I had been begging him since MAY to order a repeat MRI to see if

the

>> joint effusions had improved any). I had called Shriner's in Lexington

(about

>> 1-1/2 hours away) a few weeks ago, and they were to mail me a packet of

info

>> and an appointment, and I can't believe it, but they are getting Rob in

this

>> coming TUESDAY! I had also called Riley Hospital in Indianapolis (2 hours

>> away) and they can't see him until August 26.

>> At any rate, I am getting copies of the MRI he has done on Monday and

taking

>> them with me on Tuesday. I faxed Shriner's a release so they could get

the

>> lab results jerk-head ordered this past Tuesday, and they left me a

message

>> on Friday that they had already obtained them. Of course, Dr. Jerk hasn't

had

>> the decency to call me with the results, nor will he. I obtained 's

>> records and found out that the jerk had the results of the HLAB27 a FULL

>> MONTH before our next appointment had been due, and of course didn't even

>> bother to call us with any results. I am just so glad that we are getting

in

>> to Shriner's. After we scheduled the MRI, his office informed me that

they

>> couldn't see Rob until 3 more weeks...so the Shriner's appointment will

allow

>> us to get the results much much sooner. I also obtained the original MRI

>> films to take with us so that they can see how the hips look from March

until

>> now.

>> Rob has gotten even worse. He has been falling, as his left hip is

already

>> bad, and his right is getting worse. He is barely able to use his

crutches

>> today. He has fallen 3 times in the last few days. We obviously are so

>> grateful to have this appointment on Tuesday, to hopefully get some

answers.

>> I have worked the last 8 days straight (due to others' vacation times),

not

>> full 8 hour days, but working about 6 and on call for 8, and I am

thankfully

>> off Tuesday, Wednesday and Thursday. Amazing that the day that Shriner's

>> picked for our appointment is the first day I am off. Prayers answered!

>> Anyway, I know there are some on the list who go to SHriner's in

Lexington,

>> and any advice or comments you can send our way would be appreciated.

>> Thanks for being here...

>> and Rob 13 jas

>>

>>

>>

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Hi ,

After hearing more about the rheumatologist that Rob has seen, I must say that I

too was very happy to learn that you will soon be going to see the doctors at

Shriners. In our experience, the doctors and therapists there have been

excellent. I hope your experience with them will be better than with the current

doctor. It made me sad to hear that not only has Rob not been improving ... but

that he has actually been getting somewhat worse.

I hope that your experience with Shriners will be the start of lots of positive

things to come. I will be very interested in hearing from you about the results

of the MRI. I know it takes some time to get read and to have a report written

up but please know that we're concerned and interested ... and we'll be thinking

of you guys during this stressful period.

Hang in there, okay?

Aloha, Georgina

----- Original Message -----

From: snooksmama@...

Saturday, July 13

Hello everybody....

I have been reading messages, but to be honest, I have been so depressed I

haven't had the heart to write, until now. It is so good to read everybody's

comments and I am so lucky to have found you all...you are an incredible

group of people.

We had 's 3rd appointment with the rheumatologist on Tuesday, and it

did nothing but convince me that this guy (a ped rheumatologist at a

Children's hospital, no less) is completely uncaring. To make a long story

short, it was a terrible appointment. Complete with him having his cell phone

lying on the desk, it ringing and him ANSWERING it during our'consult'.

I won't go into all the nitty gritty details, but I did have a prayer

answered. He ordered a new MRI of Rob's hips, to be done on this coming

Monday. (I had been begging him since MAY to order a repeat MRI to see if the

joint effusions had improved any). I had called Shriner's in Lexington (about

1-1/2 hours away) a few weeks ago, and they were to mail me a packet of info

and an appointment, and I can't believe it, but they are getting Rob in this

coming TUESDAY! I had also called Riley Hospital in Indianapolis (2 hours

away) and they can't see him until August 26.

At any rate, I am getting copies of the MRI he has done on Monday and taking

them with me on Tuesday. I faxed Shriner's a release so they could get the

lab results jerk-head ordered this past Tuesday, and they left me a message

on Friday that they had already obtained them. Of course, Dr. Jerk hasn't had

the decency to call me with the results, nor will he. I obtained 's

records and found out that the jerk had the results of the HLAB27 a FULL

MONTH before our next appointment had been due, and of course didn't even

bother to call us with any results. I am just so glad that we are getting in

to Shriner's. After we scheduled the MRI, his office informed me that they

couldn't see Rob until 3 more weeks...so the Shriner's appointment will allow

us to get the results much much sooner. I also obtained the original MRI

films to take with us so that they can see how the hips look from March until

now.

Rob has gotten even worse. He has been falling, as his left hip is already

bad, and his right is getting worse. He is barely able to use his crutches

today. He has fallen 3 times in the last few days. We obviously are so

grateful to have this appointment on Tuesday, to hopefully get some answers.

I have worked the last 8 days straight (due to others' vacation times), not

full 8 hour days, but working about 6 and on call for 8, and I am thankfully

off Tuesday, Wednesday and Thursday. Amazing that the day that Shriner's

picked for our appointment is the first day I am off. Prayers answered!

Anyway, I know there are some on the list who go to SHriner's in Lexington,

and any advice or comments you can send our way would be appreciated.

Thanks for being here... and Rob 13 jas

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  • 2 years later...
Guest guest

Hi ,

I am overjoyed to hear the good news about both of Rob's check-ups.

Terrific! Very pleased, too, that he's enjoying his work. Sounds like a good

plan, to work just on weekends once the school year begins again. I hope the

orthotics help and I hope the hip xrays turn out okay, too.

Take Care,

Georgina

Update on Rob

We went to see both nephrology and rheumatology on Tuesday.

Nephrology: Rob's Alport syndrome seems to be well controlled on his

medication, Cozaar. His 'borderline' blood pressure is now excellent,

there is no blood or protein in his urine, and the doc said he doesn't

have to return for a year! We are to continue keeping a watch on his

blood pressure, and we are to use test strips to check his urine about

once a month. Of course, if he has a flareup, we are to come in sooner.

We were thrilled with this visit!

On to rheumatology.

Rob has been on Enbrel since last August. He has seen significant

improvement, but still has hip, knee and back pain.

His range of motion has improved everywhere! The hips are still irritable

as Dr. Passo says. He decided to get some xrays of the hips to check on

things. He also had Rob fitted with orthotics in his shoes. Rob

externally rotates his feet when his hips hurt, and he felt also that

good orthotics with arch support would help with Rob's knee pain,

especially when he works. Sometimes after work Rob really hurts. Standing

and walking on a concrete floor is hard on someone with AS or any

arthritis. But Rob loves to work. He loves his job! The side

effect...when he pushes carts he gets really good ankle flexion. He has

regained significant ROM in his ankles!! He alternates between retrieving

carts and being a cashier. He says that even though its hard work, he

prefers doing the carts!

We'll see if the orthotics make a difference.

Rob can't take any NSAIDS ever again because of the kidney issues, so I

think if he had that on board, it would make a difference in his pain.

Still, he can take tylenol, which he says does take the edge off. And the

Enbrel is doing a pretty good job.

I'm really proud of him getting his job, and his license last week.

During the school year he will only work some on the weekends, we decided

that he can't work during the week. He is enjoying his new found freedom

and has grown up so much in the past few months!

and Rob 16 Spondy

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Congratulations to Rob. Whoa the big license awesome! I'm so proud of him!

He is such a good example of what a kid growing up with Juvenile Arthritis can

accomplish. He should be very proud of himself. And you should be proud

of yourself for raising such a great son!

Lots of Love

(poly Jra and Spondy, 20)

PS. Did you lose weight on the Arava because recently my weight has gone

down quite a bit. I was like 127 when I started this med two months ago and I am

116 now, which seems like a pretty big drop considering a few weeks ago my

weight was at least 122. Is that totally an Arava thing? Big plus I finally

have that flat stomach I always wanted and just in time for bathing suit

season..

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Hi, . What a great update! Amazing how they mature seemingly so

quickly isn't it? Glad the job is going well. I hope the orthotics help

with the pain and Rob continues to do so well. Michele

Update on Rob

We went to see both nephrology and rheumatology on Tuesday.

Nephrology: Rob's Alport syndrome seems to be well controlled on his

medication, Cozaar. His 'borderline' blood pressure is now excellent,

there is no blood or protein in his urine, and the doc said he doesn't

have to return for a year! We are to continue keeping a watch on his

blood pressure, and we are to use test strips to check his urine about

once a month. Of course, if he has a flareup, we are to come in sooner.

We were thrilled with this visit!

On to rheumatology.

Rob has been on Enbrel since last August. He has seen significant

improvement, but still has hip, knee and back pain.

His range of motion has improved everywhere! The hips are still

irritable

as Dr. Passo says. He decided to get some xrays of the hips to check on

things. He also had Rob fitted with orthotics in his shoes. Rob

externally rotates his feet when his hips hurt, and he felt also that

good orthotics with arch support would help with Rob's knee pain,

especially when he works. Sometimes after work Rob really hurts.

Standing

and walking on a concrete floor is hard on someone with AS or any

arthritis. But Rob loves to work. He loves his job! The side

effect...when he pushes carts he gets really good ankle flexion. He has

regained significant ROM in his ankles!! He alternates between

retrieving

carts and being a cashier. He says that even though its hard work, he

prefers doing the carts!

We'll see if the orthotics make a difference.

Rob can't take any NSAIDS ever again because of the kidney issues, so I

think if he had that on board, it would make a difference in his pain.

Still, he can take tylenol, which he says does take the edge off. And

the

Enbrel is doing a pretty good job.

I'm really proud of him getting his job, and his license last week.

During the school year he will only work some on the weekends, we

decided

that he can't work during the week. He is enjoying his new found freedom

and has grown up so much in the past few months!

and Rob 16 Spondy

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Thanks Georgina!

I haven't heard anything about the xrays yet. No news is good news!

and Rob 16 Spondy

On Fri, 17 Jun 2005 01:33:04 -1000 " Georgina " <gmckin11@...>

writes:

Hi ,

I am overjoyed to hear the good news about both of Rob's check-ups.

Terrific! Very pleased, too, that he's enjoying his work. Sounds like a

good

plan, to work just on weekends once the school year begins again. I hope

the

orthotics help and I hope the hip xrays turn out okay, too.

Take Care,

Georgina

Update on Rob

We went to see both nephrology and rheumatology on Tuesday.

Nephrology: Rob's Alport syndrome seems to be well controlled on his

medication, Cozaar. His 'borderline' blood pressure is now excellent,

there is no blood or protein in his urine, and the doc said he doesn't

have to return for a year! We are to continue keeping a watch on his

blood pressure, and we are to use test strips to check his urine about

once a month. Of course, if he has a flareup, we are to come in sooner.

We were thrilled with this visit!

On to rheumatology.

Rob has been on Enbrel since last August. He has seen significant

improvement, but still has hip, knee and back pain.

His range of motion has improved everywhere! The hips are still

irritable

as Dr. Passo says. He decided to get some xrays of the hips to check on

things. He also had Rob fitted with orthotics in his shoes. Rob

externally rotates his feet when his hips hurt, and he felt also that

good orthotics with arch support would help with Rob's knee pain,

especially when he works. Sometimes after work Rob really hurts.

Standing

and walking on a concrete floor is hard on someone with AS or any

arthritis. But Rob loves to work. He loves his job! The side

effect...when he pushes carts he gets really good ankle flexion. He has

regained significant ROM in his ankles!! He alternates between

retrieving

carts and being a cashier. He says that even though its hard work, he

prefers doing the carts!

We'll see if the orthotics make a difference.

Rob can't take any NSAIDS ever again because of the kidney issues, so I

think if he had that on board, it would make a difference in his pain.

Still, he can take tylenol, which he says does take the edge off. And

the

Enbrel is doing a pretty good job.

I'm really proud of him getting his job, and his license last week.

During the school year he will only work some on the weekends, we

decided

that he can't work during the week. He is enjoying his new found

freedom

and has grown up so much in the past few months!

and Rob 16 Spondy

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Hi -

Thank you so much for sharing the great news! The stories you tell about Rob's

adventures with job, driving, school in addition to all of the health issues

give me such hope... and though it seems like such a long way off, I know

Caitlin will be a teenager before I know it. I learn so much from all you have

done and shared... I hope I will be able to share the same successes!

Congratulations to you and to Rob and my best hopes for a healthy, pain-free

summer!

Colleen

H Schulz <snooksmama@...> wrote:

We went to see both nephrology and rheumatology on Tuesday.

Nephrology: Rob's Alport syndrome seems to be well controlled on his

medication, Cozaar. His 'borderline' blood pressure is now excellent,

there is no blood or protein in his urine, and the doc said he doesn't

have to return for a year! We are to continue keeping a watch on his

blood pressure, and we are to use test strips to check his urine about

once a month. Of course, if he has a flareup, we are to come in sooner.

We were thrilled with this visit!

On to rheumatology.

Rob has been on Enbrel since last August. He has seen significant

improvement, but still has hip, knee and back pain.

His range of motion has improved everywhere! The hips are still irritable

as Dr. Passo says. He decided to get some xrays of the hips to check on

things. He also had Rob fitted with orthotics in his shoes. Rob

externally rotates his feet when his hips hurt, and he felt also that

good orthotics with arch support would help with Rob's knee pain,

especially when he works. Sometimes after work Rob really hurts. Standing

and walking on a concrete floor is hard on someone with AS or any

arthritis. But Rob loves to work. He loves his job! The side

effect...when he pushes carts he gets really good ankle flexion. He has

regained significant ROM in his ankles!! He alternates between retrieving

carts and being a cashier. He says that even though its hard work, he

prefers doing the carts!

We'll see if the orthotics make a difference.

Rob can't take any NSAIDS ever again because of the kidney issues, so I

think if he had that on board, it would make a difference in his pain.

Still, he can take tylenol, which he says does take the edge off. And the

Enbrel is doing a pretty good job.

I'm really proud of him getting his job, and his license last week.

During the school year he will only work some on the weekends, we decided

that he can't work during the week. He is enjoying his new found freedom

and has grown up so much in the past few months!

and Rob 16 Spondy

---------------------------------

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-...

So sorry this is soo darn late, life is busy busy busy with the kids

out of school/ in summer school etc. I thought summer would be

eaiser... i had no idea!!!

Im so excited about the wonderful news on the alports. Phew, one

less thing to worry about. IM glad the enbrel seems to be helping

Rob, I didnt realise he had only been on it a short time. I thought

he had been on it for a year or soo... See how hard it is to keep up

with it all :o)))

Yikes, a driver, im about to live with that too, and im not so sure

im ready, Matt turns 16 in Sept and im sure will want his permit.

How can my baby drive?? i only just gave birth to him!!!!!!

Im so happy that Rob enjoys his job, you go guy!!! i bet hes a great

employee too!!!

hugs Helen and (7,systemic)

-- In , H Schulz <snooksmama@j...>

wrote:

> We went to see both nephrology and rheumatology on Tuesday.

> Nephrology: Rob's Alport syndrome seems to be well controlled on

his

> medication, Cozaar. His 'borderline' blood pressure is now

excellent,

> there is no blood or protein in his urine, and the doc said he

doesn't

> have to return for a year! We are to continue keeping a watch on

his

> blood pressure, and we are to use test strips to check his urine

about

> once a month. Of course, if he has a flareup, we are to come in

sooner.

> We were thrilled with this visit!

> On to rheumatology.

> Rob has been on Enbrel since last August. He has seen significant

> improvement, but still has hip, knee and back pain.

> His range of motion has improved everywhere! The hips are still

irritable

> as Dr. Passo says. He decided to get some xrays of the hips to

check on

> things. He also had Rob fitted with orthotics in his shoes. Rob

> externally rotates his feet when his hips hurt, and he felt also

that

> good orthotics with arch support would help with Rob's knee pain,

> especially when he works. Sometimes after work Rob really hurts.

Standing

> and walking on a concrete floor is hard on someone with AS or any

> arthritis. But Rob loves to work. He loves his job! The side

> effect...when he pushes carts he gets really good ankle flexion.

He has

> regained significant ROM in his ankles!! He alternates between

retrieving

> carts and being a cashier. He says that even though its hard work,

he

> prefers doing the carts!

> We'll see if the orthotics make a difference.

> Rob can't take any NSAIDS ever again because of the kidney issues,

so I

> think if he had that on board, it would make a difference in his

pain.

> Still, he can take tylenol, which he says does take the edge off.

And the

> Enbrel is doing a pretty good job.

> I'm really proud of him getting his job, and his license last week.

> During the school year he will only work some on the weekends, we

decided

> that he can't work during the week. He is enjoying his new found

freedom

> and has grown up so much in the past few months!

> and Rob 16 Spondy

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Guest guest

,

wow, it's so nice to get mostly positive news all around for Rob.

What a long way he's come. I'm sorry he's not 100%, but he seems to

be doing great coping with it all. It's funny how even he notices

the ROM in the ankles from the shopping carts. Who'd have thunk???

Keep up the good news.

Stacia and Hunter 9 systemic, iritis

> We went to see both nephrology and rheumatology on Tuesday.

> Nephrology: Rob's Alport syndrome seems to be well controlled on

his

> medication, Cozaar. His 'borderline' blood pressure is now

excellent,

> there is no blood or protein in his urine, and the doc said he

doesn't

> have to return for a year! We are to continue keeping a watch on

his

> blood pressure, and we are to use test strips to check his urine

about

> once a month. Of course, if he has a flareup, we are to come in

sooner.

> We were thrilled with this visit!

> On to rheumatology.

> Rob has been on Enbrel since last August. He has seen significant

> improvement, but still has hip, knee and back pain.

> His range of motion has improved everywhere! The hips are still

irritable

> as Dr. Passo says. He decided to get some xrays of the hips to

check on

> things. He also had Rob fitted with orthotics in his shoes. Rob

> externally rotates his feet when his hips hurt, and he felt also

that

> good orthotics with arch support would help with Rob's knee pain,

> especially when he works. Sometimes after work Rob really hurts.

Standing

> and walking on a concrete floor is hard on someone with AS or any

> arthritis. But Rob loves to work. He loves his job! The side

> effect...when he pushes carts he gets really good ankle flexion.

He has

> regained significant ROM in his ankles!! He alternates between

retrieving

> carts and being a cashier. He says that even though its hard work,

he

> prefers doing the carts!

> We'll see if the orthotics make a difference.

> Rob can't take any NSAIDS ever again because of the kidney issues,

so I

> think if he had that on board, it would make a difference in his

pain.

> Still, he can take tylenol, which he says does take the edge off.

And the

> Enbrel is doing a pretty good job.

> I'm really proud of him getting his job, and his license last week.

> During the school year he will only work some on the weekends, we

decided

> that he can't work during the week. He is enjoying his new found

freedom

> and has grown up so much in the past few months!

> and Rob 16 Spondy

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  • 1 month later...
Guest guest

-, poor Rob, that sounds very painful. Not being able to take

anything for it too, how frustating.

I hope the PT helps quickly and hes feeling better soon. Tell him

not to overdo it at work on sunday.

hugs Helen and (7,systemic)

-- In , H Schulz <snooksmama@j...>

wrote:

> Rob saw the ped today for his back injury and ended up at physical

> therapy. He hadn't played golf in awhile, and then went to play on

> Sunday. He swung on the 9th hole and pulled the latissmus dorsi

muscle.

> He wasn't getting much better, despite ice, heat, massage, hot

tub, and I

> even gave him one dose of Flexeril he'd had prescribed for a

previous

> injury. That was a big mistake. Not only was he totally grogged

out, but

> today broke out in a rash all over his back, shoulders, chest and

upper

> arms. Guess he's now allergic to Flexeril!

> The ped agreed that it was a severe strain. It is actually pretty

> swollen. She is also worried that his hips and knees are going to

flare

> since he is so off kilter with his back. Since Rob can't take any

> ibuprofen or NSAIDS because of the kidney disease, we didn't have

a lot

> of choice. So off to PT. I'm lucky I work there and they had a

> cancellation today. She says its going to take 2-3 weeks of

therapy to

> get him doing better. We of course are worried about the fact he's

> starting school next Wednesday and has the ever-dreaded backpack.

> Luckily, he has an elevator key for arthritis flares so he

promises to

> utilize that. And not to carry more than one book around (yeah,

right).

> We tried to insist on getting him a rolling backpack but he'll

have none

> of that, absolutely refused. Teenagers!!

> Anyway, he's icing on and off tonight to get the swelling down,

and is to

> go back tomorrow for some heat and ultrasound, and gentle

stretching.

> He's bummed because he and were going to try to finish

putting the

> transmission in his car by the time school started, so he could

cruise to

> school in style. He won't be able to lift for awhile. He does have

to

> work at Target on Sunday, but I'm trying to talk him into doing

cashier

> by trading with someone that day, and not doing carts. We'll see!

> and Rob 16 Spondy

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Guest guest

Sorry Rob is having a tough time with that back injury. I hope the PT helps. I

chuckled when I read about the backpack and switching at work. " Teenagers " is

right! I could just imagine a teenage boy okaying a rolling backpack. Hopefully

he will at least use that elevator, as in some cases that is kind of a cool

thing to be able to use. Michele

update on Rob

Rob saw the ped today for his back injury and ended up at physical

therapy. He hadn't played golf in awhile, and then went to play on

Sunday. He swung on the 9th hole and pulled the latissmus dorsi muscle.

He wasn't getting much better, despite ice, heat, massage, hot tub, and I

even gave him one dose of Flexeril he'd had prescribed for a previous

injury. That was a big mistake. Not only was he totally grogged out, but

today broke out in a rash all over his back, shoulders, chest and upper

arms. Guess he's now allergic to Flexeril!

The ped agreed that it was a severe strain. It is actually pretty

swollen. She is also worried that his hips and knees are going to flare

since he is so off kilter with his back. Since Rob can't take any

ibuprofen or NSAIDS because of the kidney disease, we didn't have a lot

of choice. So off to PT. I'm lucky I work there and they had a

cancellation today. She says its going to take 2-3 weeks of therapy to

get him doing better. We of course are worried about the fact he's

starting school next Wednesday and has the ever-dreaded backpack.

Luckily, he has an elevator key for arthritis flares so he promises to

utilize that. And not to carry more than one book around (yeah, right).

We tried to insist on getting him a rolling backpack but he'll have none

of that, absolutely refused. Teenagers!!

Anyway, he's icing on and off tonight to get the swelling down, and is to

go back tomorrow for some heat and ultrasound, and gentle stretching.

He's bummed because he and were going to try to finish putting the

transmission in his car by the time school started, so he could cruise to

school in style. He won't be able to lift for awhile. He does have to

work at Target on Sunday, but I'm trying to talk him into doing cashier

by trading with someone that day, and not doing carts. We'll see!

and Rob 16 Spondy

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  • 8 months later...
Guest guest

Hi :

Sorry to hear about Rob's knee........3 months goodness. He does have a

high tolerance for pain, doesn't he!

I bet you were up that night checking him for any head trauma. Not even a

headache with that bash?

I bet Rob will get to the part of taking appropriate measures to take care

of himself, but right now he probably just wants to be a typical' kid who

doesn't have to deal with doctors, etc. He's bright...........he'll realize

what

he needs to do and hopefully soon for his and mom's sake.

How is he liking Target? Is he saving up for something big...........I seem

to recall a car or something?

Take care.

Patty

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In a message dated 4/19/2006 8:23:43 P.M. Eastern Standard Time,

snooksmama@... writes:

I just got frustrated that Rob doesn't

yet take measures to take care of himself! Hopefully this is something

that will come in time!

, I will be 41 and my mom, bless her heart, says the same thing to this

day. I think the ability to push ones self comes with this disease. Some

days I listen to my body but most days I just keep on keepin on. I hope some

other adults who have lived most of their life with JA can help me here. If you

push yourself and don't always stop or slow down when you should please say

" I " so I can show my folks and my husband. They all get mad at me.

Hang tight, Hang tough

~ Donna~

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Guest guest

- I am right there with you. I know and understand totally your

frustration. I wish I knew the answer to the " I'm fine " syndrome we have

so often talked about. Amazing that Rob could go that long and not say

anything about the pain. Perhaps he doesn't want you to worry or maybe

he thinks you would make him quit his job? When I have my moments like

this about I try to hold on to what told me a few months

back when I was venting about Chris. Basically, she told me that it

would come in time, as they mature and realize that they must take care

of themselves, that parents can't do it forever. We can worry, but at

some point they must learn to deal with this on their own. For me, I try

to make sure I provide a positive role model with getting regular check

ups and taking care of my health. I wish I could get my husband to do

the same, as I think that would have more of an impact on but for

now it is me. I hope that Rob's knee improves. Hugs to you, vent

whenever you need to, I sure do! Michele ( 18, spondy)

Update on Rob

Again, thank you all for the prayers for Rob's cousin, . We were

pretty scared yesterday when he was actively bleeding, but thank God

that

has apparently ceased with treatment and now he can be managed with GERD

medications. I think that there is a lesson to be learned: NSAIDS and

pain meds can really do a number on your stomach, and if you are on them

long-term or have a history of GERD, you really need to be on something

to protect your stomach.

Rob has been complaining of his knees a lot lately. He is vague with his

complaints, but one thing with Rob: if he is complaining, you'd better

sit up and take notice because SOMETHING IS WRONG. Monday, we went to a

mall, and while we were walking in he complained about his right knee.

He

had a followup due with the orthopedist today, to monitor his

spondylolysis and spondylolisthesis (back issues), and I made him

promise

me that we'd have his knee looked at. He readily agreed.

Last night, I was at our church working for our ministry, and got a call

from Rob. His knee had given out, and he fell into the closet door

between his bedroom and ours. He hit the door with such force, that he

caused a hole in it! Of course, the door is hollow, but ...

Anyway, he hit the front part of his head and he doesn't even have a

bruise today. We've been calling him Hard Head all day!

This really scared me. So, we go to the orthopedist today and had great

news about his spine. His scoliosis is still at 15%, and his

spondylolysis and listhesis appear to be status quo as well. Then we

moved on to his knee. Rob then finally admits that his knee has been

giving out on him, and he's having trouble when he's working at Target.

He says its been pretty painful for about 3 MONTHS!

They did plain xrays and they looked ok, so he's being scheduled for an

MRI. I don't know whether to think its his arthritis, tendonitis, or

he's

torn something.

But I think that the most shocking part was that he hadn't really

complained until about a week ago! We had a talk about how the doctor

had

to pull all that out of him, but yet, he told the doctor more than he'd

been telling me. I told Rob that the doctor has to be given information

so he can figure out what's wrong. You can't expect them to just know!

Anyway, the doctor said for him to take NSAIDS, but Rob can't even take

them because of his kidney disease. So, we wait for the MRI. If it's

normal I guess its back to the physical therapist.

Sorry for the long-winded post! I just got frustrated that Rob doesn't

yet take measures to take care of himself! Hopefully this is something

that will come in time!

and Rob 16 Spondy

" Have no fear for what tomorrow may bring. The same loving God who cares

for you today will take care of you tomorrow and every day. God will

either shield you from suffering or give you unfailing strength to bear

it. Be at peace, then, and put aside all anxious thoughts and

imaginations. "

-St Francis DeSales

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Hi ,

Wow, 3 months and his knee giving out and still not saying

anything...Some of us have stubborn kids don't we...Look at Aundrea

hiding the prednisone when she was just 8 years old. They want

control over their health and their life. Aundrea even now at age

10 will mention when she has joint pain but will always blame it on

something else...For example " my feet hurt but thats just because I

haven't walked on them for awhile " " My knee hurts but I bumped it on

the wall or something " . on and on.

My sister, that has chrones disease was very much like Rob.

High tolerance for pain and by the time she mentioned anything she

was in serious shape. For goodness sakes she was bleeding rectally

for months before she brought it up to my mom (who happens to be a

nurse). They went thru many struggles with putting her

health on the backburner and then it would all blow up and she would

end up in the hospital. Now that is 26 and adopted a baby

boy this past year she realizes how important it is for her to take

care of her health so that she can take care of her son.

Still, even at 26..my mom will call and check up on her, attend dr.

appointments with her and of course goes running to her side for any

surgery or procedures that have to be done. I guess as moms we will

never let go completely will we? Thats why are called moms! :-)

Let us know what the tests show and I will be praying for both Rob

and your nephew....Are you feeling better these days?

(Aundrea 10 systemic jra)-

-- In , snooksmama@... wrote:

>

> Again, thank you all for the prayers for Rob's cousin, . We

were

> pretty scared yesterday when he was actively bleeding, but thank

God that

> has apparently ceased with treatment and now he can be managed

with GERD

> medications. I think that there is a lesson to be learned: NSAIDS

and

> pain meds can really do a number on your stomach, and if you are

on them

> long-term or have a history of GERD, you really need to be on

something

> to protect your stomach.

> Rob has been complaining of his knees a lot lately. He is vague

with his

> complaints, but one thing with Rob: if he is complaining, you'd

better

> sit up and take notice because SOMETHING IS WRONG. Monday, we went

to a

> mall, and while we were walking in he complained about his right

knee. He

> had a followup due with the orthopedist today, to monitor his

> spondylolysis and spondylolisthesis (back issues), and I made him

promise

> me that we'd have his knee looked at. He readily agreed.

> Last night, I was at our church working for our ministry, and got

a call

> from Rob. His knee had given out, and he fell into the closet door

> between his bedroom and ours. He hit the door with such force,

that he

> caused a hole in it! Of course, the door is hollow, but ...

> Anyway, he hit the front part of his head and he doesn't even have

a

> bruise today. We've been calling him Hard Head all day!

> This really scared me. So, we go to the orthopedist today and had

great

> news about his spine. His scoliosis is still at 15%, and his

> spondylolysis and listhesis appear to be status quo as well. Then

we

> moved on to his knee. Rob then finally admits that his knee has

been

> giving out on him, and he's having trouble when he's working at

Target.

> He says its been pretty painful for about 3 MONTHS!

> They did plain xrays and they looked ok, so he's being scheduled

for an

> MRI. I don't know whether to think its his arthritis, tendonitis,

or he's

> torn something.

> But I think that the most shocking part was that he hadn't really

> complained until about a week ago! We had a talk about how the

doctor had

> to pull all that out of him, but yet, he told the doctor more than

he'd

> been telling me. I told Rob that the doctor has to be given

information

> so he can figure out what's wrong. You can't expect them to just

know!

> Anyway, the doctor said for him to take NSAIDS, but Rob can't even

take

> them because of his kidney disease. So, we wait for the MRI. If

it's

> normal I guess its back to the physical therapist.

> Sorry for the long-winded post! I just got frustrated that Rob

doesn't

> yet take measures to take care of himself! Hopefully this is

something

> that will come in time!

> and Rob 16 Spondy

>

>

> " Have no fear for what tomorrow may bring. The same loving God who

cares

> for you today will take care of you tomorrow and every day. God

will

> either shield you from suffering or give you unfailing strength to

bear

> it. Be at peace, then, and put aside all anxious thoughts and

> imaginations. "

> -St Francis DeSales

>

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  • 4 months later...

-Hi .

it was good to hear from you and get an update on Rob. Im sorry to

hear of the leaky valve. Might it need surgery if it gets worse.

Good for you educating the doctor. Kinda sad though that we have to

do that.

My 14 year old gets pain around his ribs with his pectus too. Thank

you for posting what they call it, I could never remember.

Thankfully it doesnt bother him much, but he did have one time where

it was so painful he was actually crying. It hurt no matter if he

sat, laid down or stood up.

I hope you get some answers on his knees, let us know that the ortho

says.

hugs Helen and (9,systemic)

In , snooksmama@... wrote:

>

> I'm sorry I seem to be AWOL most of the time here lately. Life has

gotten

> busier than I thought it could! I am woefully behind on posts, and

I need

> to make it a priority in the next few days to call Uncle Rusty and

check

> on Tree as well.

> Rob had his cardiology appointment this past week. The

cardiologist feels

> that he has costochondritis (inflammation around the ribs) from his

> pectus deformity. He did not feel that Rob's pectus was bad enough

to

> have surgical correction. YAY!!

> However, on the echo, it was found that Rob now has a leaky mitral

valve.

> This was not there on his echo done 10 years ago. So now he is to

have

> yearly echos and has to take antibiotics before dental

appointments and

> any surgeries.

> The interesting thing is that the cardiologist was unaware that

> ankylosing spondylitis could affect the heart. This is a pediatric

> cardiologist! He took us into his office, since he said we had

piqued his

> interest, and lo and behold found the information. So, we had to

educate

> yet another doctor. This is getting old.

> Anyway, since early this year Rob's right knee has been giving him

fits.

> He had an MRI, which showed scarring and a cyst. He was told to

exercise.

> Well, pushing carts at Target hasn't been kind to it, and he has

been

> getting in progressively more pain. Saturday night, he went

bowling with

> his buddies and couldn't sleep all night due to the pain. He

called in to

> work today, because pushing carts was out of the question. He so

wants to

> do what everybody else does and I don't blame him in the least!

Anyway,

> I'll be calling the orthopedist tomorrow to get an appointment and

see if

> there is anything they can do for Rob. He already wears neoprene

sleeves

> on both knees when he works. He can't take any nsaids at all

because of

> the kidney condition. I'll keep you posted on what we find out.

> I hope that all of your kids have better months in the coming

months...it

> seems like so many are re-flaring right now. We pray for you guys

every

> night!

> and Rob 17 Spondy

>

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Hi, . Sorry to hear about Rob's knee. Could Target transfer him to

run a register or maybe into one of the departments like Electronics,

something like that? It may cause less knee problems. Just a thought.

I know what you mean about having to teach things to drs. That is one

reason why I am so glad for the list. I have learned so much that when

the situation occurs (we have had it with ER drs, orthopedics,

pediatricians other than our own) I am able to explain things and get

them researching on their own. The orthopedic guy is really great, but

when I had to explain to him what the rheumy's theory was for Chris' JRA

starting, he was very surprised.

Hope school is going great for Rob, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of snooksmama@...

Sent: Sunday, August 20, 2006 8:57 PM

; rustyroom

Subject: Update on Rob

I'm sorry I seem to be AWOL most of the time here lately. Life has

gotten

busier than I thought it could! I am woefully behind on posts, and I

need

to make it a priority in the next few days to call Uncle Rusty and check

on Tree as well.

Rob had his cardiology appointment this past week. The cardiologist

feels

that he has costochondritis (inflammation around the ribs) from his

pectus deformity. He did not feel that Rob's pectus was bad enough to

have surgical correction. YAY!!

However, on the echo, it was found that Rob now has a leaky mitral

valve.

This was not there on his echo done 10 years ago. So now he is to have

yearly echos and has to take antibiotics before dental appointments and

any surgeries.

The interesting thing is that the cardiologist was unaware that

ankylosing spondylitis could affect the heart. This is a pediatric

cardiologist! He took us into his office, since he said we had piqued

his

interest, and lo and behold found the information. So, we had to educate

yet another doctor. This is getting old.

Anyway, since early this year Rob's right knee has been giving him fits.

He had an MRI, which showed scarring and a cyst. He was told to

exercise.

Well, pushing carts at Target hasn't been kind to it, and he has been

getting in progressively more pain. Saturday night, he went bowling with

his buddies and couldn't sleep all night due to the pain. He called in

to

work today, because pushing carts was out of the question. He so wants

to

do what everybody else does and I don't blame him in the least! Anyway,

I'll be calling the orthopedist tomorrow to get an appointment and see

if

there is anything they can do for Rob. He already wears neoprene sleeves

on both knees when he works. He can't take any nsaids at all because of

the kidney condition. I'll keep you posted on what we find out.

I hope that all of your kids have better months in the coming

months...it

seems like so many are re-flaring right now. We pray for you guys every

night!

and Rob 17 Spondy

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Helen:

No, he is nowhere near needing surgery ,as long as it doesn't worsen.

He'll have it checked yearly.

He can't get into the ortho until 9/7. So, we wait on the knee issue.

How's Nicky Noodle doing??

and Rob 17 Spondy

On Tue, 22 Aug 2006 22:49:01 -0000 " hburger64 " <hburger64@...>

writes:

-Hi .

it was good to hear from you and get an update on Rob. Im sorry to

hear of the leaky valve. Might it need surgery if it gets worse.

Good for you educating the doctor. Kinda sad though that we have to

do that.

My 14 year old gets pain around his ribs with his pectus too. Thank

you for posting what they call it, I could never remember.

Thankfully it doesnt bother him much, but he did have one time where

it was so painful he was actually crying. It hurt no matter if he

sat, laid down or stood up.

I hope you get some answers on his knees, let us know that the ortho

says.

hugs Helen and (9,systemic)

In , snooksmama@... wrote:

>

> I'm sorry I seem to be AWOL most of the time here lately. Life has

gotten

> busier than I thought it could! I am woefully behind on posts, and

I need

> to make it a priority in the next few days to call Uncle Rusty and

check

> on Tree as well.

> Rob had his cardiology appointment this past week. The

cardiologist feels

> that he has costochondritis (inflammation around the ribs) from his

> pectus deformity. He did not feel that Rob's pectus was bad enough

to

> have surgical correction. YAY!!

> However, on the echo, it was found that Rob now has a leaky mitral

valve.

> This was not there on his echo done 10 years ago. So now he is to

have

> yearly echos and has to take antibiotics before dental

appointments and

> any surgeries.

> The interesting thing is that the cardiologist was unaware that

> ankylosing spondylitis could affect the heart. This is a pediatric

> cardiologist! He took us into his office, since he said we had

piqued his

> interest, and lo and behold found the information. So, we had to

educate

> yet another doctor. This is getting old.

> Anyway, since early this year Rob's right knee has been giving him

fits.

> He had an MRI, which showed scarring and a cyst. He was told to

exercise.

> Well, pushing carts at Target hasn't been kind to it, and he has

been

> getting in progressively more pain. Saturday night, he went

bowling with

> his buddies and couldn't sleep all night due to the pain. He

called in to

> work today, because pushing carts was out of the question. He so

wants to

> do what everybody else does and I don't blame him in the least!

Anyway,

> I'll be calling the orthopedist tomorrow to get an appointment and

see if

> there is anything they can do for Rob. He already wears neoprene

sleeves

> on both knees when he works. He can't take any nsaids at all

because of

> the kidney condition. I'll keep you posted on what we find out.

> I hope that all of your kids have better months in the coming

months...it

> seems like so many are re-flaring right now. We pray for you guys

every

> night!

> and Rob 17 Spondy

>

Herth Schulz

Precious Helpers Horse Farm

www.precioushelpers.org

A Cost-Free Christian Riding Therapy Program

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Which ortho will Rob see, ? I also have a valve issue (MVP) and was

told as well that it is a watch and see thing. I know anytime I go to the doc

or

ER and have a headache or chest pain, I get an ekg that reveals a problem

and I usually get admitted to go through the heart tests all over with the same

results-all more the reason I dislike the ER, lol. But I always feel better

when they say it the same thing. I recently had a tooth to break and will be

going to the dentist soon and will have to do the antibiotic thing, which I

need to do anyway due to the prosthesis I have....always something, huh????

Hang tight , Hang tough

Donna

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  • 4 months later...

:

That is great news. Hope recovery goes well!!!!

Sending prayers & happy thoughts,

Beth :-)

Update on Rob

Hello all, and thanks to all who were praying for Rob today!

I tell you, he is one amazing kid.

He had the knee arthroscopy today, and did well. They found a lot of scar

tissue in an area called Hoffa's fat pad. It looked like shreds on the

pictures the doc showed us after the surgery. He cut the scar tissue out.

He said there might be alot of bleeding, and his knee is very swollen

tonight, I think it must have filled up with blood. He said it might have

to be drained if it swells too much.

Anyway, he thinks that was the main problem, and hopefully in about 6

weeks healing time, Rob will be a new man! Well, at least a man with a

new knee...lol

He's doing well tonight, back to eating us out of house and home, and

hobbling along with crutches. He is amazing!! I'll be talking to the doc

tomorrow about the swelling.

Thanks again for your prayers.

and Rob 17 Spondy

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