Re: [jra]

[Guest guest]

hi

i have not experienced on the MTX but i do know that the JRA will affect most

joints

melissa started with just her knee and hip and ended up haveing it in all

joints

Robbin

[Guest guest]

Hi everyone,

I had a bone density scan done today which was fine and fortunately there was

no queue, the funny thing was that I was quite worried about what they were

actually going to do but on tv at the moment they have a program about the

hospital and yesterday they showed a man being scanned so I was so relieved

to know what was going to happen and it was such a coincidence that they

chose that morning to show it. When we went in the room we told the lady

about it and she said that was the scanner they actuially filmed (as theres

several of them). So anyone whos not sure what will happen its quite simple

and over very quickly.

Vicky

[Guest guest]

Vicky,

Are you taking any calcium supplements? Did they tell you yet what the

results of the scan were? Just curious, as my son takes a daily nasal

spray called Miacalcin, which is supposed to help the body better absorb

calcium. Not too many people with JRA seem to take it. I think it's to

help counteract the effects of corticosteroids though, which can

contribute to osteoporosis, so maybe that's why it was so important for

him.

Hmmm ... I guess if you had been scheduled just one day earlier, you

might have been on television, too

Take care,

Georgina

vmockingbirdh@... wrote:

>

> Hi everyone,

> I had a bone density scan done today which was fine and fortunately there was

> no queue, the funny thing was that I was quite worried about what they were

> actually going to do but on tv at the moment they have a program about the

> hospital and yesterday they showed a man being scanned so I was so relieved

> to know what was going to happen and it was such a coincidence that they

> chose that morning to show it. When we went in the room we told the lady

> about it and she said that was the scanner they actuially filmed (as theres

> several of them). So anyone whos not sure what will happen its quite simple

> and over very quickly.

> Vicky

[Guest guest]

Hey Georgina,

I take calichew these gigantic lumps of chalk sometimes flavoured with

lemon. There disgusting with the flavour or without but I still have to take

them. I dont know the results yet as my Dr wasnt around yesterday but

hopefully ill be able to drop the supplement.

Vicky

[Guest guest]

Vicky, can they be crushed up and put into aomething like, oh say a,

milkshake or glass of lemon aide! I remeber taking pills that would choke

not only one horse, but a whole team of, Klydsdales!

Uuughkk!

On Sat, 30 Jun 2001 04:41:41 EDT vmockingbirdh@... writes:

> Hey Georgina,

> I take calichew these gigantic lumps of chalk sometimes flavoured

> with

> lemon. There disgusting with the flavour or without but I still have

> to take

> them. I dont know the results yet as my Dr wasnt around yesterday

> but

> hopefully ill be able to drop the supplement.

> Vicky

>

>

>

[Guest guest]

,

I think they can be crushed I'll suggest your idea to my mum

Thanks

Vicky

[Guest guest]

Hi guys,

I came back from my Dr's appointment yesterday with the knowledge that the

cyclosporin hadnt worked for me the whole time I was on it -a year and a

bit-but they only figured this out when the best peadiatric rheumytologist

came to our hospital to give a lecture I cant believe ive been taking that

horrible syringe every night and day for no reason! Also he said the steroids

arnt doing anything for me anymore aswell so Im going to go down 1mg every 2

weeks so Ill be off for christmas! Ive got to have a special mri scan aswell

but my Dr has to get more info on that.

Vicky

[Guest guest]

How frustrating. Rob was started on Cyclosporin last week. Good luck Vicky, I

hope things improve soon. As with all of the other meds - I have my concerns

about the cyclosporin - especially with some of the long term possibilities.

Has anyone had a positive response to this med?

Rob had no complaints of pain today - but mood swings abound with the

Prednilosone - which I was accustomed to before - but he never had to remain on

it as long with the Nephrotic Syndrome - so before there was always a light at

the end of the tunnel, so to speak. Now I am looking at a " michelin man "

version of my beautiful little boy - who has taken to hitting and throwing. I

gave him a pillow to hit when angry (instead of Mom) and his orange ball to kick

- but how do I help a three year old understand and cope with his frustration?

This morning he cried uncontrollably when I asked him not to help Mom get ready

by carrying her travel coffee cup - he was trying to help & I of course didn't

want him to burn himself. I found something else for him to carry to help - he

was so excited because his hands didn't hurt and crushed so quickly because he

thought I didn't want him to help.

[Guest guest]

Wow, I wouldn't know how to tell a 3 year old this kind of stuff. is

almost 7, and I hate telling her, but she is starting to understand.

She heard me this morning telling my husband that I was going to cancel

because I just hate going. She knew right away what I was talking about.

Then she said " Let's watch a movie and not think about it right now " ! What a

trooper!

Cyclosporine was the first med she got off of. It make her grow hair, have a

round, fat face and I don't know what it really did for her except cause her

to get sick easier. When she did get sick many months ago, they took her off

it immediately and she never went back on. And I never saw any bad effects

from it.

Pat

[Guest guest]

sounds like she has had a lot of support in dealing with this - great

job! Rob already has a round face from the prednilosone - I didn't realize the

cyclosporine would do that too. I guess I'll just have to wait and see what

happens when they finally start to wean from the prednilosone - to see if the

Cyclosporine is the way to go for Rob. Luckily - I am comfortable with his

doctors, his primary rheumatologist returns my calls quickly, answers my

questions and listens to my concerns - which is a relief after all of the blank

faces from before.

[Guest guest]

Pat,

I too, did a stint of 18 months of cyclosporine with no added benefits and

no reprocussions for stopping!!! Tree

Re:

Wow, I wouldn't know how to tell a 3 year old this kind of stuff. is

almost 7, and I hate telling her, but she is starting to understand.

She heard me this morning telling my husband that I was going to cancel

because I just hate going. She knew right away what I was talking about.

Then she said " Let's watch a movie and not think about it right now " ! What a

trooper!

Cyclosporine was the first med she got off of. It make her grow hair, have a

round, fat face and I don't know what it really did for her except cause her

to get sick easier. When she did get sick many months ago, they took her off

it immediately and she never went back on. And I never saw any bad effects

from it.

Pat

[Guest guest]

could i please unsubscribe from .

thanks

vicky

[Guest guest]

HAPPY HOLidays TO ALL MY FRIENDS ON THE JRA LiST . i APPRECIATE ALL YOUR

ADViCE, INPUT, ANDK iND WORDDS, THROUGHOUT THE YEAR..GOD BLESS YOU

ALL.....JANE CONLON AND SON RYAN ( AGE 10 SYSTEMiC)

[Guest guest]

Becki,

I think I may have given some misinformation. has had jra since 5

but was not " officially " diagnosed until last month in june.

turned 10 on June 3 and her 1st visit to Duke was on june 12. Not much of a

birthday present. But at least now she's getting some help. When MK was 5 yrs

old I took her to a ped rheumy who did nothing for her. They told me they

" thought " it was jra but did nothing for her, no tests, no further

investigating, nothing. I gave her ibuprofen and her symptoms subsided, went

into remission I guess. Then in the summer of 99 her symptoms came back, this

time her flare lasted longer than the first time and was even worse. Again I

took her to another dr - the same thing happened as the first time. Again I

followed the same treatment, ibuprofen. From the beginning of 2000 up until feb

of this year my ex would not allow me any contact with the children. But I

received a call one day that my ex said he wanted me to start being a part of

their lives again. It was then that I found out that was in

another flare. She had been in this flare since Oct 2001 up until now - with no

medical treatment. It got so bad that there were days she could not walk. I'm

just thankful for the call I received to be a part of thier lives again. I am

now seeking help for her. I think MK is glad there is a dr who is going to help

her.

ita & MK (10)

Allan Larson <alarson1@...> wrote: ita,

I agree with Robbin,what your ex and his wife did was child neglect.I think

you said she was diagnosed at age 5 and shes now 10.They knew she had a

chronic Illness and kept her from the proper treatment.I dont know what

curcumstances led to your ex getting custody but it sounds like she needs

her mommy more, now than ever.Your ex sure isnt doing anything to help.So

happy that you are back in her life and being her biggest advocate.Forget

everything from the past and keep fighting for your child.Good luck.

Becki and 3systemic

Re: Hello

>ita

>ok first of all to me that sounds like your hubby did do child neglect

>my daughter and son has always seen a doctor on good years at least 4 times

>and i took them to the ER several times

>their medical record is THICK

>with both they had a strange fever the tests showed nothing

>so the doctor said ok it must be stress fever

>well the fever would go high and make them sleep it off

>tylenol wouldnt touch it

>why does your hubby have the kids? if you dont mind me asking

>seems you could get custody of them since the child is not gettin proper

>treatment from his care

>Robbin

>

>

>

[Guest guest]

Barb,

I don't think those are the mouth sores. When my daughter got them (many

times while on oral mtx) they were very obvious sores, almost like little

blisters in her mouth. If e does get a lot of mouth sores you do need to

notify the rheumy. The sores aren't dangerous but they are very

uncomfortable.

Sometimes the white patches on the tongue can be indicative of an infection,

so if e seems out of sorts at all you might want to give her ped a call.

Liz

> My daughter, e,(poly 2yrs. old) has been on mtx/Celebrex combo for

about

> 2 months now. I have noticed her tongue has white patches on it (like

> thrush). Is this the mouth sores that are side effects that I read about?

> Has anyone experienced this, and should my rheumy be notified? Is it

> serious?

>

> Let me know your experiences!

>

> Thanks!

> Barb

>

>

>

>

>

[Guest guest]

Hi Barb, I'd have the rhuemmy check her tongue for sure, she may be having pain their and is too little to let you know it. I ussually got a blistered looking place when I was on mtx. folic acid will help to stop that from happening. I believe alot of the groups children take folic acid with there mtx. I hope a parent will comment about this as well. Good Luck to you both !!!! Keep Smiling :):)tree:):) My daughter, e,(poly 2yrs. old) has been on mtx/Celebrex combo for about2 months now. I have noticed her tongue has white patches on it (likethrush). Is this the mouth sores that are side effects that I read about?Has anyone experienced this, and should my rheumy be notified? Is itserious?Let me know your experiences!Thanks!Barb

[Guest guest]

Tree & everyone else who has responded..

thank you guys so much for the reassuring words of advice.. we live in Pennsylvania and i did contact her Rhummy and got a letter that stated jessica suffers from poly JRA and she explained what is all involved and said that it takes her longer then others to do the most easiest tasks and may need more time to finish things and may need special hekp.. like from a computer etc. her rhummy was so upset when i told her.. but on a posotive note.. i have a meeting tuesday am @ 9:50 with her teacher, principal, assistant principal, guidance counselor, school psychologist, gym teacher, school nurse, etc. ( everyone who has jessica in class) and i hope somthing posotive will come out of this all.. i will let you guys all know what happens on tuesday.. thansk again for everything you guys are wonderful.. kellie & jessica

>From: "theresa sappenfield"

>Reply- >" "

>Subject: TO KELLIE >Date: Wed, 16 Oct 2002 20:53:42 -0400 > >Dear Kellie, > Hi! I'm Tree (Theresa) JRA vet of 32 years. I'm so sorry to hear your child has wound up with the teacher from HELL!!! and thats putting it polite!!! This is cruelty and needs to stop this moment, there is absolutely no reason that this child couldn't have more time and I'm not talking about her recess, to complete or keep up with her work. I would like to rack this teachers body with JRA for just one day maybe then she would learn some compassion. > What state are you guys in ???? Kentucky here and for two cents I would come and teach this teacher a thing or two about accommodations and compassion. Your little needs an IEP (Individual Education Program) and 504 plan This will allow her to have many accomodations for her disability. After all we do not want to add more damage to her poor little joints that are already taking a beating. Go to your school counselor and demand something be done to help your childs situation tomorrow. You may have to educate the whole staff about JRA because so few people even have a clue what it is . I can't put my fingers on the book you requested the page out of at this time but i'll keep searching for it. > My son has ADD attention deficit disorder and dysgraphia which makes writing for him very difficult. He is given all kinds of accommodations due to this , more time to finish things, or a decrease in the amount of (sentences) etc. He now even uses a laptop computer in class with a program that helps him. TYping is much easier most times than holding a pencil and forming letters. Much more efficient too! > In conjunction with the local arthritis foundation our support group (FACES) used to go to local schools and teach about Arthritis. We talk and interacted with the students and the teachers, we explaned everything from how your joints work , to what arthritis is, to experiencing limitations , to assistive devices , to similairites and differences. In the Experiencing limitations segment we would take masking tape and tape the teachers and students hands, thumbs held down to there palms and all other fingers taped together straight so that the whole hand is like in a cacoon of sorts , then we ask them to do simple tasks like put your name neatly between the lines on their papers and write anything , most could not even hold a pencil much less write anything , you should have heard the complaints, frustration, anger , moans and groans. This was with no pain involved. One wonders how this teacher would fare having her hands just taped for one day, Or even one class time and ask her to accomplish what she ask of !!!!! How would she COPE !!!!! >Best wishes to you and and I hope you can teach this teacher a thing or two or three!!! Keep Smilin' Your JRA friend Tree:):):):) > > > >Theresa Sappenfield >FACES Co-Leader/Tres. >Facing Arthritis with Compassion, Encouragement and Support >Louisville, Kentucky > > > > Question anyone... please help > > >Hello all i have a question.. my daughter jessica (8 years old poly JRA) is in the 2nd grade . my question is i am getting frustrated with her teacher.. has said to me today that she is tired of missing recess to do work , so i called her teacher and she said she is far behind in her work and needs to get it done so she has somthing to grade.. jessica has Jra in everyjoint and it does tire her out when she is writing alot. ( i even spent 4.00 on a mechanical pencil for her to use for school that was thicker and has a nice gripper) but her little hands still get sore and tired. i asked her if she could bring some of her work home say over the weekend and she saaid no jessica has to be graded on it and if she sends it home she may be getting help to do it and thats not what she wants. she is supposed to be haveing a meeting with people from the school to see if there is anything they can do different like instead of 20 senteces she has to write maybe just 10.. i am so tired of all of this.. i also was looking for anyone who has that book raising a kid with arthritis.. i have one but it is about 50 miles away at my sister in laws right now (she did a paper on it for nursing school.) and i was thinking there was a page in there where you can write down your child limitations etc. and if anyone has it could you please e-mail me the page.. i need it to fill out so when i go to the meeting i can let them know what she can do and can't... well i guess thats enough rambling.. please help and thanks for listening.. kellie > > > >Broadband? Dial-up? Get reliable MSN Internet Access. Click Here > >

[Guest guest]

Hi, . I am not exactly sure if Chris' rheumy does specialize. However, his first rheumy and his current one both are very knowledgeable about it. They both are professors. The first one diagnosed it pretty quickly based on his symptoms and checked for the HLAB 27marker which he does not have. She knew alot about the disease though. His current rheumy (the first one left to teach at Duke) also knows alot about it. How Chris' symptoms show it, etc. He always checks Chris' back for his ability to bend (which has gotten much better, Yah!!). I thnk if you can find a dr who states that they specialize it would be better as they have obviously studied it more. They know the signs. Although, having these drs who are also teachers has been great because they must keep up to date on things. At least you assume so. It's kind of like the whole ped rheumy thing. If a dr specializes in kids they know how the disease affects kids. Hope this helps a little. About the hand shaking thing, the only time has had that is when his asthma flared and he was taking his inhaler alot. Or if he has had to take alot of antihistimine for his allergies. So not arthritis related for him. Hope Adam is feeling ok today, Michele (15,pauci & spondy)

-----Original Message-----From: Velinsky [mailto:karen@...] Sent: Tuesday, January 14, 2003 3:38 PM Subject:

OK - I need some help. My son Adam who is 10 and has the AS type of arthritis has been experiencing shaking of his hands. I know handwriting is an issue and it is for Adam big time but he has never had shaking before. Our rhemu is not to concerned and isn't convinced it is caused from the arthritis but I feel otherwise. He is on Vioxx and I don't believe this is a side affect of Vioxx at least in the reading I have done, although Vioxx isn't approved for kids either.

My question is are there parents of kids who have AS whose rhuematologists specialize in AS form of arthritis and if so do you think it makes a difference in care. Also, does anyone's kids experience shaking.

Thanks a lot..

V

[Guest guest]

They also check Adam's back when he bends and it shows signs of not being able to bend for a child his age. He is HLAB27 pos. What meds is on? I did not realize the back situation could get better!

Thanks for your help.

RE:

Hi, . I am not exactly sure if Chris' rheumy does specialize. However, his first rheumy and his current one both are very knowledgeable about it. They both are professors. The first one diagnosed it pretty quickly based on his symptoms and checked for the HLAB 27marker which he does not have. She knew alot about the disease though. His current rheumy (the first one left to teach at Duke) also knows alot about it. How Chris' symptoms show it, etc. He always checks Chris' back for his ability to bend (which has gotten much better, Yah!!). I thnk if you can find a dr who states that they specialize it would be better as they have obviously studied it more. They know the signs. Although, having these drs who are also teachers has been great because they must keep up to date on things. At least you assume so. It's kind of like the whole ped rheumy thing. If a dr specializes in kids they know how the disease affects kids. Hope this helps a little. About the hand shaking thing, the only time has had that is when his asthma flared and he was taking his inhaler alot. Or if he has had to take alot of antihistimine for his allergies. So not arthritis related for him. Hope Adam is feeling ok today, Michele (15,pauci & spondy)

-----Original Message-----From: Velinsky [mailto:karen@...] Sent: Tuesday, January 14, 2003 3:38 PM Subject:

OK - I need some help. My son Adam who is 10 and has the AS type of arthritis has been experiencing shaking of his hands. I know handwriting is an issue and it is for Adam big time but he has never had shaking before. Our rhemu is not to concerned and isn't convinced it is caused from the arthritis but I feel otherwise. He is on Vioxx and I don't believe this is a side affect of Vioxx at least in the reading I have done, although Vioxx isn't approved for kids either.

My question is are there parents of kids who have AS whose rhuematologists specialize in AS form of arthritis and if so do you think it makes a difference in care. Also, does anyone's kids experience shaking.

Thanks a lot..

V

[Guest guest]

takes Methotrexate and Celebrex. Folic Acid also to help with the side effects from the methotrexate. He was on Sulfasalazine which is usually the first DMARD tried for AS but it did nothing for and he was taking 3000mgs a day. He switched to Methotrexate last Dec,2001 and it has been a life changer for him. His heel pain and tendon pain are basically gone. His legs are more flexible. Like I said earlier he can bend very well now, not all tight and stiff like he was. He also began to workout at a health club this year, with drs permission, that has helped his mobility and self esteem. His ankle, where his pauci first presented itself, is still his biggest problem. It still has swelling but not as painful as often. He was diagnosed with the AS after he began to complain of back pain and upon examining him the dr realized it was actually his pelvic rim - the tendons. His achilles tendon, and heel pain were the way she diagnosed it. He is doing really well now though. A fact I attribute to the Methotrexate. We are currently lowering his Celebrex (down to 200 from 800 mgs a day) with the goal being to eliminate that. The dr said we cannot begin to consider medicated remission for at least a year, but it is a possibility. We shall see. I'm just glad he can move better! Michele ( 15, pauci & spondy)

-----Original Message-----From: Velinsky [mailto:karen@...] Sent: Wednesday, January 15, 2003 3:20 PM Subject: Re:

They also check Adam's back when he bends and it shows signs of not being able to bend for a child his age. He is HLAB27 pos. What meds is on? I did not realize the back situation could get better!

Thanks for your help.

RE:

Hi, . I am not exactly sure if Chris' rheumy does specialize. However, his first rheumy and his current one both are very knowledgeable about it. They both are professors. The first one diagnosed it pretty quickly based on his symptoms and checked for the HLAB 27marker which he does not have. She knew alot about the disease though. His current rheumy (the first one left to teach at Duke) also knows alot about it. How Chris' symptoms show it, etc. He always checks Chris' back for his ability to bend (which has gotten much better, Yah!!). I thnk if you can find a dr who states that they specialize it would be better as they have obviously studied it more. They know the signs. Although, having these drs who are also teachers has been great because they must keep up to date on things. At least you assume so. It's kind of like the whole ped rheumy thing. If a dr specializes in kids they know how the disease affects kids. Hope this helps a little. About the hand shaking thing, the only time has had that is when his asthma flared and he was taking his inhaler alot. Or if he has had to take alot of antihistimine for his allergies. So not arthritis related for him. Hope Adam is feeling ok today, Michele (15,pauci & spondy)

-----Original Message-----From: Velinsky [mailto:karen@...] Sent: Tuesday, January 14, 2003 3:38 PM Subject:

OK - I need some help. My son Adam who is 10 and has the AS type of arthritis has been experiencing shaking of his hands. I know handwriting is an issue and it is for Adam big time but he has never had shaking before. Our rhemu is not to concerned and isn't convinced it is caused from the arthritis but I feel otherwise. He is on Vioxx and I don't believe this is a side affect of Vioxx at least in the reading I have done, although Vioxx isn't approved for kids either.

My question is are there parents of kids who have AS whose rhuematologists specialize in AS form of arthritis and if so do you think it makes a difference in care. Also, does anyone's kids experience shaking.

Thanks a lot..

V

[Guest guest]



:What a smart mom you are to have taken that picture. Be sure and take it with you to the doc's; our kids have a tendence of looking fine when they go there.

best wishes and keep us posted.

and Rob 14 spondy

On Mon, 17 Nov 2003 12:05:37 EST L22@... writes:

thank you georgina! i am so nervous abotu seeing the doctor tomorrow. pain and swelling are an all day thing. actually she has had her knee swollen since august when they first diagnosed her and put her on motrin. the pain seems worse in the morning but god forbid you touch her leg she starts screaming, stiffness is bad all day long too, i just think the girl needs beter drugs. here is a picture of her knee abotu a month ago, it still looks the same today!

mayra

In a message dated 11/15/2003 6:31:12 PM Alaskan Standard Time, gmckin@... writes:

Hi ,Hearing your description of the seasonal patterns of extended darknessand sunshine, I give you credit for being able to manage. I'm not sosure that I could handle that. In fact, I doubt that I could. Everyone Iknow who has visited Alaska remarks on how extraordinarily beautiful aplace it is. Gorgeous scenery. Lots of unspoiled wilderness. The wintersare just too darned cold for someone like me. I think I'd be inclined towant to hibernate until the Spring! ;)I hope things are going okay for na today. Hope her leg isn'thurting too badly. Is it mostly just in the early morning hours or doesthe pain and swelling last throughout the day? I hope your upcoming apptto see the rheumatologist will be a good one, that they'll help figureout a way to get your daughter's arthritis better controlled. It'sdifficult, not having a specialist closer by. Ours are on the island ofOahu and we live on Maui. They travel over every month to do a JRAclinic here. (Well, they used to at least. They haven't been to Maui,now, since July! Josh did fly over in August for JRA Camp, and we wentover together on the first of October.)Hopefully the rheumatologist you see will be willing and able to have agood working relationship with your daughter's pediatrician and the restof the health care team (PT, eye doctor, ect.) to make sure all thebases are covered in her treatment plan. At least until you move to themainland. Be sure to sign consent forms before you leave, so there won't be any problems with forwarding her medical records.Take Care,GeorginaTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

In a message dated 11/17/2003 2:11:41 PM Alaskan Standard Time, snooksmama@... writes:

:What a smart mom you are to have taken that picture. Be sure and take it with you to the doc's; our kids have a tendence of looking fine when they go there.

best wishes and keep us posted.

and Rob 14 spondy

i will write all about it when i get back form seattle, i am runnign around like carzy trying to pack and get briannas wheel chair clean to take with me. i promise i will post when i get back!

mayra

[Guest guest]

HI, . It does sound like Adam may be having a flare. sometimes gets stiff if he sits in his seat at school for too long also. Does the morning stiffness get better with a warm shower? That helps when he is flaring. The rheumy should perform that test when Adam goes in - the one I can never remember the name of, but it consists of the dr having him bend and touch his toes as best he can. They make a mark on the back and gauge the flexibility. Before started on MTX he could barely reach, now he is doing much better. Able to touch with no problems. Chris' back xray showed that so far he has no damage to his spine and hopefully by him taking the meds he never will. It sounds like your dr may want to add something to the Vioxx since this stiffness is happening more often. Good luck on the visit and keep us informed, Michele (16,pauci & spondy)

-----Original Message-----From: Velinsky [mailto:karen@...] Sent: Friday, February 27, 2004 10:41 AM Subject:

Hi everyone,

I don't post very often, but I do read all posts because I find such valuable information. My son Adam has JAS since he was 3, he is now 11 and has been controlled very well on vioxx. He is not very symptomatic and we consider ourselves very lucky. But, lately he has been waking up stiff and it takes awhile to get the legs moving and if he sits for a long time, he gets really stiff. This is new for him, I know whenever we go to the doctor he always ask Adam if he is stiff in the morning and he never up to this point has been. The last visit the doc took X-rays which he does periodically to make sure there are no changes and as of the last appt. there have not been any joint changes....xray was normal.

I guess my question is what does this new development mean? The doc has mentioned there will be a time when Adam must change meds and go on MTX or enbrel, but he felt until there were changes we were going to sit tight. I am wondering if this might be the time. We have an appt. next week.

Thanks any information is appreciated.

V.

Adam 10 JAS

[Guest guest]

:I hope that Chris' asthma stays away and that he is feeling good!I have been pricing (gasp!) driver's ed classes for Rob today (give me strength!)

Love, and Rob 14 Spondy (15 in less than a month and able to get his PERMIT)

On Mon, 29 Mar 2004 13:56:30 -0600 "Tepper, Michele" <MTepper@...> writes:

That is great ! Have fun at the conference. I am glad that Rob isdoing a bit better this year - you are right about finding thevictories. Hope he is feeling better soon and those sinuses clear rightup! Glad to hear Rob's asthma is under control too. I keep waiting forChris' to act up, but so far so good! Michele (16,pauci & spondy)-----Original Message-----From: snooksmama@... [mailto:snooksmama@...] Sent: Saturday, March 27, 2004 7:05 PM ; rustyroom Subject: We're back! AND ready for a NEW adventure!Hello everybody!We got home about 3 am today. Had planned on staying thru Friday, butchecked out Friday morning. Rob had had enough by Thursday night, and hewanted to get home. Took us 13 hours going down, but 18 goingback...NCAA in Atlanta, this caused us to be caught in traffic almost 3hours there just trying to get from one side of the city to the other.Thank goodness for those Thermacare heat packs, we don't travel withoutthem! Rob actually did better than we thought he would..so I can seethat the methotrexate has helped. He never would have been able to dothat much this time last year. You have to look at the victories! Hisknees are swollen and they hurt the worst. His hips are hurting asusual, and his back, but I am surprised that he is doing as well as heis. We go back to the rheumy on Tuesday! His asthma calmed down promptlyafter the pred kicked its butt, so he only needed 3 days of pred, thankgoodness. , I did start Rob back on his Pulmicort inhaler abouta month ago in anticipation of allergy season. It is a maintenanceinhaler. However, the sinus infection compounded things. Now that he ison 3 weeks of antibiotics, we'll hopefully get the sinuses cleared upand the asthma will stay banished! We have exciting news! We are beingsponsored by FACES to attend the AJAO conference in San Diego!!! I am sothrilled and grateful to FACES...words cannot express how overwhelmed Iam by their generosity. Everytime I talk about it I cry. Donna said besure and bring my Kleenex to San Diego! I can't wait to see the agendafor the convention. Is it available yet? I know that many of you guysare going and I just can't wait to meet all of you...it will beoverwhelming, I am sure of that. There are 7 altogether from FACESgoing, including myself and Rob. Well, on to cleaning out my mailbox!Hope all of you are doing ok! Love, and Rob 14 Spondy

[Guest guest]

You GO girl! Congrats on your fundraising!

and Rob 15 Spondy

On Tue, 4 May 2004 10:48:55 -0500 " Tepper, Michele "

<MTepper@...> writes:

That is really wonderful Becki! What a great birthday present too! Glad

you had a good walk. Ours was cold, and just as it kicked off the rain

started!! But we stayed with it - I was so glad we did it and have

signed up for more info on Joints in Motion. We shall see if I'm up to

that! Unfortunately, as soon as the walk was over most everyone left as

the Chicago lakefront was a cold place that day. But we will be back

next year! I ended up making over $400 in donations myself for the

Arthritis Foundation. I couldn't believe it. I'm not sure what the total

raised was. Again, great job Becki and all who walked over the weekend!

Michele ( 16, pauci & spondy)

Our walk

Hi gang,

We had our first Rutherford County walk early this morning and it was a

HUGE

success.It was such an honor to be on our walk commitee and to see how

things

turned out. was 1 of 3 walk honorees and with the head chairs son

being

one of them,all he talked about was the kids,so close to 400 people

learned

that Kids get arthritis too.The media was all over them and they ate it

up.We won

largest team and the walk raised over $36,000,not bad for a first walk

with

the threat of rain.

The second best news is I found out we got our scholrship,so the Larson

clan

is headed to California. will be playing in the Pacific ocean for

his

b-day on the 24th.

Hugs to all

Becki and 5 systemic