's update

[Guest guest]

Hi ,

Thank you for your message. Hope things are going well for you and your family.

Today, Josh started on a decreased dose of prednisone. Instead of 20mgs he got

15. He has had a little bit of pain in his right elbow and left knee but we are

always looking to get the prednisone dose down, because of all the side effects.

So, as soon as his cold went away we were ready to start lowering. We have done

this before, over the years, but so far we have never been able to get down

below 9mgs. At that point, he always gets very sick again. We will see the

doctor again next month and if everything in the blood work looks okay, he will

most likely say we can go down to 10mgs. The month after that, if he suggests

that we go down to 9, I think I will ask if we can use 9mgs one day and 10mgs

the next day, like that. Anything, to try to make it easier!

About the cost of Enbrel ....As far as I know, one needs an injection twice a

week. For those 8 injections each month, the cost is about $1,100. Our doctor is

happy to hear that it seems to be helpful to many who have tried it but he also

said that he wants clinical trials done on children before he will even consider

prescribing it, because they don't know enough about what, if any, side effects

there may be for long term use in children. Since my son's illness seems to be

managed okay with the older, standard drugs I can't see switching over. For

other children, though, who have been intolerant of the drugs or who don't have

good results with them, I think it may be worth trying. Our doctor did mention

at the last visit that we might look into trying Arava.

Last night on television I saw a segment on Dateline that discussed Celebrex.

The woman on the show had debilitating RA for many years. Celebrex is another

NSAID but one that does not bother the stomache. It was working great for her.

Before, her hands were to the point where she could not make a fist, tie shoes,

cut things for dinner. Now, she can do all that and more. She used to need,

sometimes, 30+ aspirins a day. Now I think she takes two Celebrex and gets

better relief. It's nice to know that they ARE working on new and better drugs

for those who need them.

, I'm not sure about the dental problems. It's best to speak directly with

the dentist about that. I know that we needed to fill out a lengthy form listing

all of the meds Josh takes but there has never been any special circumstances

for us yet, in regards to his dental care. Then again, Josh has never needed a

tooth extraction done. Just regular cleanings, and a couple fillings.

About the anemia, thank you for your suggestions. All very good ones! The nurse

told me, though, it is a different type than the dietary anemia. It is not a

result of his diet but a result of having a chronic illness. I don't know how

they differentiate the two. Yes, we get our iron from other sources, too. I

stopped eating red meat and pork when I was 17 and have never fed it to my

children.

In the beginning, when Josh was first diagnosed, I even tried to eliminate all

of the night-shade family of foods from his diet. White potatos, eggplants,

peppers, tomatoes, etc. I had heard that they negatively affected the joints of

people with RA. After a few months, when Josh asked if he could have a piece of

pizza, I said let's try it. There were no bad effects. No effect at all :-)

I am glad that Diego is feeling well. I hope that he will continue to, even

after you lower the dose of prednisone. Does the doctor still want him to try

methotrexate? If so, has he mentioned that you should supplement it with folic

acid? Josh takes folic acid everyday now, except for Saturday, when he takes the

methotrexate. Let us know how it goes, okay?

Take Care,

Georgina

[Guest guest]

Ruth,

Wonderful news about :-) Hopefully things will continue to get even

better for you all. I know its not quite the same thing, but I used to get

allergy shots starting at age 5 and continued weekly until I was about 16.

My mom is an lpn and she used to give me the injections and it was always a

stressful time when the shots were due! At least the injections are helping

to feel better, although its not easy giving or receiving them. Good

luck at her rheum appt... hope all goes well!! Take care,

[Guest guest]

Great news about . I hope she continues only to get better. (mom to n, age 11 with systemic JRA)

's Update

Hi everyone,

It's been a long time since I posted to this board but I have been reading your posts almost every day. I have recently been diagnosed with probable MS and that is why I haven't been around for a while. But I am feeling better and have resolved to stay on top of katie's illness.

We started her on enbrel on May 1. What an amazing improvement!!!! She goes back to her rheumy next week and I can't wait to see her reaction to katie. Of course, there is still some joint swelling but she was almost unable to walk and now is running, jumping and playing with her two brothers.

We still are having quite a problem giving her the injection. Some days easy, others it can take up to an hour to get her to sit still. She says the needle doesn't hurt but gets overly anxious before it and cannot get herself ready for it. This takes a tremendous amount of patience from me and also causes me a lot of stress. I'm hoping that this will all get better with time.

I look forward to hearing from all of you and hope and pray for all your children!!

Ruth

For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Georgina:

Haven't been online in a while...but I was today and read your e-mail

regarding . I can fully understand what you mean about wondering if

they are " over " doing it. Ashli has been doing oh so well since about

October that it is like a miracle. There are times (about once a week) when

there is alittle pain, but nothing compared to before. Since the pain is

virtually gone, she doesn't want to wear her knee supports, she wants to

crawl all the time, run and jump and do all the things the doctors have

restricted. I often fear telling her " no " all the time, but at the same time

I'm afraid that the littlest wrong movement could cause a relapse.

Prayers and thoughts with you and .

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

Georgina, Hang in there. Our daughter has been through each of Josh's

issues a couple of times. It seems that it can't possibly get better. Let

him enjoy the days when all is well. He will find his own limits, the hard

part is letting them do that. Only they know how much is to much.

Amy & Mike

's Update

> Hi,

>

> We just got back from seeing 's rheumatologist. He had an okay

> exam. Just okay, because Josh was feeling a bit sore today. He had his

> rash back again. It's been re-appearing every now and then and it

> happened to be present this morning. Though I had mentioned it, the

> doctor hadn't seen it in a while . Josh also had a few sore, achey

> joints. Nothing major but bothering him enough to report it. The last

> few visits he didn't have any complaints at all.

>

> I can't help thinking that if he had been taking it easy, not being

> quite so active, that maybe he wouldn't be hurting hardly at all. It

> feels like we've seen both extremes. There were times when Josh couldn't

> hardly move, when we wished that he would have the energy and endurance

> to be able to get up and join in outdoor activities. At those times it

> was hard for him to just make it through each day. Now, since his

> arthritis hasn't been too bad, he seems possibly to be overdoing it. I

> went through a period earlier on in this where I worried that I might

> become over-protective. For example, Josh wasn't able to ride his bike

> for a while and then, when he was able to, I worried that it might be

> too much for him, too soon. I was given the advice that we should let

> the child decided what they can and can't do in these sorts of issues.

> That they need to learn what their own limits are. So I backed off and

> observed more and sure enough, it seemed that Josh could make good

> choices. Now, I'm not so sure anymore.

>

> Today, the doctor says he thinks that might be trying to

> overcompensate. Trying to keep up with what his friends are doing to

> prove himself ~ possibly because of his short-stature. Because he's

> taken steroids continuously for so long, he's had growth retardation.

> Major lack of growth for the last few years. He seems okay with his

> size. It's an issue we've discussed in detail, even with a child

> psychologist when we were contemplating the possibility of trying to

> treat it. We basically decided to forego growth hormone therapy, as Josh

> doesn't want to get an injection every single day, for years to come.

> And there's no guarantee that he would even respond. Also, our insurance

> won't cover it. I've looked into programs to help cover the costs (more

> expensive than Enbrel, even!) and it is possible to get a sliding scale

> fee schedule worked out but if would be unwilling to cooperate

> and adhere to the treatment schedule after just a short time it seemed

> like all the effort to secure the drug might not be worthwhile.

>

> There's a time limit with this. Once the bones stop growing and fuse,

> the window of opportunity is lost. It seems like he may have a somewhat

> delayed puberty with everything else that had been going on. That might

> very well be a good thing, allowing a few extra years for the

> possibility of normal growth? We had wanted to wait it out a while and

> see if they would release the newer growth hormone formulas that require

> fewer injections. Three times a week instead of every day. I've even

> heard of some that would be just once a week. This isn't available right

> now, though. Not that I know of, anyway. If it were, I'd be willing to

> look into programs similar to the one I found for the daily shots, to

> see if we could aquire it on a sliding scale fee. Today the doctor told

> us he heard about a patch that's being considered. So there are these

> other, better, possibilities that says he would be more willing

> to try out. Just a matter of time. He's used to being the shortest child

> his age. I think he's comfortable with it, at least right now.

>

> Again, I'm worrying. Worrying about how may feel differently

> about this when he's an adult. When the small opportunity for possibly

> being able to affect his growth will no longer exist. Especially if he

> does not have any further natural growth. It's not merely a cosmetic

> issue. It affects his ability to do certain things. We've made some

> adaptations, which are fine for now. He's 4 feet tall. There are a lot

> of people who are smaller than that with congenital small stature. And a

> lot of them don't pursue radical treatments hoped to increase their

> height. Rather, they accept their height as normal (for them) and work

> through whatever needs to be done, like specially adapted cars for

> driving, specially constructed homes where they can reach sinks and

> countertops, etc.

>

> Because Josh has been having some increased symptoms of arthritis we

> were not able to go ahead and lower the dose of prednisone. Yet. He'll

> be at 7.5mgs for at least another month. Hopefully things will stabilize

> again and we can move ahead on that tapering. He gets his bloodwork done

> today when we go get his Methotrexate injection done. Last labs, which I

> didn't even ask to have a copy of because I was so hopeful that all the

> numbers would remain the same, showed an increased SED rate. Doctor says

> he's not worried because it's still under 20 but instead of a 7 it was

> 18. Still extremely low considering 's history but higher than it

> was when we last decreased the prednisone from 8mgs to 7.5. He's at such

> a low dose now that regular growth, supposedly, can start to occur. I

> guess I hope it does. Soon. One less troubling aspect to have to worry

> about.

>

> Oh, well. That's our update. For now, anyways. After school Josh will

> get his blood drawn and have his MTX injection. I was able to get him an

> appt with the eye doctor for this afternoon, to check on his right eye.

> Probably is conjunctivitis. Josh isn't thrilled about seeing the eye

> doctor after having his shot. He says he'll feel too dizzy and weird. It

> does need to be looked at though. Maybe I can convince him by promising

> to rent a new video game? Some days seem so much harder than others,

> don't they?

>

> Take care,

> Georgina

>

> PS ... below is the note I was going to respond to. About limitations. I

> hope Josh will consider what I've been saying and what the doctor spoke

> about, today. The activities we engage in do have effects on our body.

> Sometimes we have to take it easy or we will feel more sore the next

> day. Play too hard and you do have to 'pay.'

>

>

> Gerfen wrote:

> >

> > I don't know about going slam dancing (or maybe this is the same thing),

but

> > I knew a brave young jra'er (17yrs old) who went to the mosh pits in her

> > wheel chair. She lived her life to the fullest; she passed away a

couple of

> > years ago due to complications from juvenile lupus. Her twin passed a

year

> > before that from the same thing. Her younger sister often typed for her

at

> > chat when her fingers wouldn't cooperate or she was too tired. Her

> > dream.....to graduate from high school.

> >

> > When I think of her, I know how lucky our family is and how lucky

Meghann

> > is. Of course outside of a little wishful thinking Meghann doesn't

dwell on

> > the limitations of JRA. I think I dwell more on them then she...you

know

> > the mom thing wanting to make everything all right.

> >

> > Sharon and Meghann

> > JRA and PRS

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

>

[Guest guest]

Georgina,

As I was reading your post I thought..how familiar it sounded ...you were

echoing my thoughts. Ashton seems at times to do so well & wants so much to

" keep Up " that I too think at times she overdoes it. But I have really tried

to just say my thoughts & let her go from there.. She's 14 & I have really

tried to be very inclusive with her regarding her treatment as in a few years

the decisions will be all hers. But I know it is so hard to sit back & not

worry I think sometimes if we didn't worry that we wouldn't be the parents we

are.. and that is loving, concerned parents. Ashton too has had delayed

puberty which to me has been a blessing ha, but hard on a 14 year old when

she is not like everyone else. I will have you & Josh in my thoughts ...

hopefully this is only a temporary setback & he will continue to improve!!!

Well I have become long winded haven't I..ha Praying for a CURE ..Kris

[Guest guest]

Hi Amy,

Thanks for your kind thoughts. You're right, of course. I just worry

sometimes that overdoing it one day may lead to several days of needing

to rest more, to recuperate. And I wish those resting kind of days all

fell neatly on the weekends. Oh, well. This too shall pass

Thanks again,

Georgina

foxkits3 wrote:

>

> Georgina, Hang in there. Our daughter has been through each of Josh's

> issues a couple of times. It seems that it can't possibly get better. Let

> him enjoy the days when all is well. He will find his own limits, the hard

> part is letting them do that. Only they know how much is to much.

> Amy & Mike

[Guest guest]

Thanks, Kris. What you said makes a lot of sense. There are so many

issues to deal with. Just when you think all has been taken care of,

you're reminded again that there's more. Keeps us on our toes, doesn't

it?

Aloha,

Georgina

dkakheath@... wrote:

>

> Georgina,

> As I was reading your post I thought..how familiar it sounded ...you were

> echoing my thoughts. Ashton seems at times to do so well & wants so much to

> " keep Up " that I too think at times she overdoes it. But I have really tried

> to just say my thoughts & let her go from there.. She's 14 & I have really

> tried to be very inclusive with her regarding her treatment as in a few years

> the decisions will be all hers. But I know it is so hard to sit back & not

> worry I think sometimes if we didn't worry that we wouldn't be the parents we

> are.. and that is loving, concerned parents. Ashton too has had delayed

> puberty which to me has been a blessing ha, but hard on a 14 year old when

> she is not like everyone else. I will have you & Josh in my thoughts ...

> hopefully this is only a temporary setback & he will continue to improve!!!

> Well I have become long winded haven't I..ha Praying for a CURE ..Kris

[Guest guest]

Oops, sent Barb's message to DS-Teens-Plus. Oh, well we are one in the

same. ))

Jule

[Guest guest]

,

Have you tried going back on Actigall? Also, has anyone tried the new drug

Nexium? Just curious. Hope you get some real relief soon!

on

's update

> Hi guys,

>

> I had my appointment for the GB testing, and everything came back

> normal. My Gastro doc is sending me to a Surgeon at UNC hospital

> (http://apollo.med.unc.edu/surgery/gi/) named Mark Koruda. He is the

> Professor and Chief of the GI surgery. My appointment is in early July.

Has

> anyone heard of this surgeon, and if so can you recommend him? I really

> don't know at this point what he can do for me, or if he will even accept

me

> as a patient. I will post after my consult in a couple of weeks.

> I also have spoken with Dr. Sugarmen in Virgina. He thinks there is a

> good chance for a revision to an RNY (lap). I called their appointment

line

> and the secretary said he is not available for appointments until

December.

> I told her that this reversal/conversion is medically necessary. I had my

> doctor send her a note stating that, and Dr. Sugarmen wants to see me in

the

> beginning of August. The good news is, I have at least 2 surgeons that

will

> " see " me.

>

> Once I meet with both of these doctors I will make a decision as to what

> to do. I am not sure if I will have a revision or a conversion to

> the RNY. Honestly, it doesn't matter to me...as long as it stops the

> symptoms. Until then, I wait..trying to be patient...its not easy when my

> tummy is constantly reminding me that something needs to be done...and

soon.

> I really hate this happened to me, and I envy those of you not having any

> problems. Of course, if it wasn't for BAD luck..I wouldn't have any luck

at

> all!

>

> I also want to say thanks again for all of the kind words that have been

> sent to me over the past few days..they really mean alot. Thanks for all

of

> your advice and sharing, as it does help me.

>

>

> Lassiter

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

, I am so glad you are going to see Dr. Sugarmen. Their

team might be the only ones other than Dr. R who have seen the

full on insides of an MGB patient lol....That should count for

something!

I will also be grateful to hear, from your point of view.....their

feelings about the MGB revision vs RNY conversion.

Please take good notes =)

thanks! and Good Luck!

Beth

> Hi guys,

> I had my appointment for the GB testing, and everything came

back normal. My

> Gastro doc is sending me to a Surgeon at UNC hospital

> (http://apollo.med.unc.edu/surgery/gi/) named Mark Koruda. He

is the

> Professor and Chief of the GI surgery. My appointment is in

early July. Has

> anyone heard of this surgeon, and if so can you recommend

him? I really

> don't know at this point what he can do for me, or if he will even

accept me

> as a patient. I will post after my consult in a couple of weeks.

>

> I also have spoken with Dr. Sugarmen in Virgina. He thinks

there is a good

> chance for a revision to an RNY (lap). I called their appointment

line and

> the secretary said he is not available for appointments until

December. I

> told her that this reversal/conversion is medically necessary. I

had my

> doctor send her a note stating that, and Dr. Sugarmen wants to

see me in the

> beginning of August. The good news is, I have at least 2

surgeons that will

> " see " me.

>

> Once I meet with both of these doctors I will make a decision

as to what to

> do. I am not sure if I will have a revision or a conversion to

> the RNY. Honestly, it doesn't matter to me...as long as it stops

the

> symptoms. Until then, I wait..trying to be patient...its not easy

when my

> tummy is constantly reminding me that something needs to be

done...and soon.

> I really hate this happened to me, and I envy those of you not

having any

> problems. Of course, if it wasn't for BAD luck..I wouldn't have

any luck at

> all!

>

> I also want to say thanks again for all of the kind words that

have been

> sent to me over the past few days..they really mean alot.

Thanks for all of

> your advice and sharing, as it does help me.

>

> Lassiter

>

__________________________________________________

_______________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com

[Guest guest]

,,

I love you sis, you know I am there for you night and day.. I have called to

set up an apt for a scope. I will let you know the day when I get it

scheduled.

Love ya girl,

Wills

[Guest guest]

Josh..OUCH!!!!!!!!! I remember when I was in seventh grade and was at the

skating rink. There I was off the floor,sitting down on the carpet(against

the wall),all of a sudden, I see a skate rolling off the floor, on to the

carpet, and it hit my left wrist. Well my arm started swelling and of

course, i stayed there. Well the next day went to drs. and it was broken,

had to get a full cast on it. Boy did I think I was special..got out of

class early..got on the bus before anyone did and of course, I picked the

back seat(thought I was cool).

Hang in there..

(tabs..poly)

From: Georgina <gmckin@...>

Reply-

a jra < >

Subject: 's Update

Date: Wed, 05 Sep 2001 19:13:16 -1000

Hi Everyone,

Wanted to send in some of those JRA related abstracts I had found. I've

saved a couple more in my drafts folder but they still need to be

re-formatted. Maybe tomorrow. Josh had his rheumatology appt on Friday.

Went pretty well. Weren't able, yet, to reduce the steroids again. Maybe

next month. His SED rate last time was 22. Just a tiny bit too high.

Nothing at all like the old numbers we used to get but his foot has been

hurting him and the rash has been back often again, so I understand.

Better safe than sorry.

Josh also saw his eye doctor. They did the slit lamp, glaucoma, and

color tests. No change in the status of the cataract. So that was good

news. Appears that the plaquinel hasn't had any unwanted side effects

yet, either. We scheduled an appt for another peripheral vision exam but

that's not for a couple more months. 's vision tested right on the

borderline, so we decided to get glasses for him to use for distances.

Might make seeing the blackboards at school a little easier, though the

doctor said he didn't 'really' need them. I'm nearsighted, maybe he

might be too? We'll see how it goes. He picked out the frames and they

should be in next week.

Now for the bad news. Yesterday evening Josh and his friend Ikaika were

playing basketball out back. They bumped into each other and ....

broke the pinky finger on his right hand. It's all swollen and bruised.

The doctor splinted it. It's his very first fracture. Hopefully, it

won't become a pattern. The endocrinologist seemed almost surprised that

Josh had never had a fracture, after seeing the results of his bone

density test. Maybe I'll call him tomorrow, to let him know

Me ... I had the worst stiff neck pain yesterday. Ouch! Lots better

today. Good thing. Well, I'll write more tomorrow.

Hope everybody's doing okay

Take care,

Georgina

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

hey Josh maybe we should start a " Break-A-Bone " club hehehehe We could be the

first members. Problem is this would be a club to try to stay out of lol !!!!

Happy mending Josh, you'll be back to playing ball soon ..It's those collisions

that get ya ..I wonder if cars are the only things with collision insurance. LOL

KEEP SMILIN':):)Tree

's Update

Hi Everyone,

Wanted to send in some of those JRA related abstracts I had found. I've

saved a couple more in my drafts folder but they still need to be

re-formatted. Maybe tomorrow. Josh had his rheumatology appt on Friday.

Went pretty well. Weren't able, yet, to reduce the steroids again. Maybe

next month. His SED rate last time was 22. Just a tiny bit too high.

Nothing at all like the old numbers we used to get but his foot has been

hurting him and the rash has been back often again, so I understand.

Better safe than sorry.

Josh also saw his eye doctor. They did the slit lamp, glaucoma, and

color tests. No change in the status of the cataract. So that was good

news. Appears that the plaquinel hasn't had any unwanted side effects

yet, either. We scheduled an appt for another peripheral vision exam but

that's not for a couple more months. 's vision tested right on the

borderline, so we decided to get glasses for him to use for distances.

Might make seeing the blackboards at school a little easier, though the

doctor said he didn't 'really' need them. I'm nearsighted, maybe he

might be too? We'll see how it goes. He picked out the frames and they

should be in next week.

Now for the bad news. Yesterday evening Josh and his friend Ikaika were

playing basketball out back. They bumped into each other and ....

broke the pinky finger on his right hand. It's all swollen and bruised.

The doctor splinted it. It's his very first fracture. Hopefully, it

won't become a pattern. The endocrinologist seemed almost surprised that

Josh had never had a fracture, after seeing the results of his bone

density test. Maybe I'll call him tomorrow, to let him know

Me ... I had the worst stiff neck pain yesterday. Ouch! Lots better

today. Good thing. Well, I'll write more tomorrow.

Hope everybody's doing okay

Take care,

Georgina

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hey Josh, sorry to hear about the finger break, Carefull there guy when

your driving to the basket!

Georgina, great info, asusuall, gives me lots of reading. I just

increased the ram in my pc, went from 128 mb to 192 mb. It makes a big

difference in internet useage! Pages load much faster. And mail delivery

too.

Aloha

Rusty Linbs

On Wed, 05 Sep 2001 19:13:16 -1000 Georgina <gmckin@...> writes:

> Hi Everyone,

>

> Wanted to send in some of those JRA related abstracts I had found.

> I've

> saved a couple more in my drafts folder but they still need to be

> re-formatted. Maybe tomorrow. Josh had his rheumatology appt on

> Friday.

> Went pretty well. Weren't able, yet, to reduce the steroids again.

> Maybe

> next month. His SED rate last time was 22. Just a tiny bit too

> high.

> Nothing at all like the old numbers we used to get but his foot has

> been

> hurting him and the rash has been back often again, so I

> understand.

> Better safe than sorry.

>

> Josh also saw his eye doctor. They did the slit lamp, glaucoma, and

> color tests. No change in the status of the cataract. So that was

> good

> news. Appears that the plaquinel hasn't had any unwanted side

> effects

> yet, either. We scheduled an appt for another peripheral vision exam

> but

> that's not for a couple more months. 's vision tested right on

> the

> borderline, so we decided to get glasses for him to use for

> distances.

> Might make seeing the blackboards at school a little easier, though

> the

> doctor said he didn't 'really' need them. I'm nearsighted, maybe he

> might be too? We'll see how it goes. He picked out the frames and

> they

> should be in next week.

>

> Now for the bad news. Yesterday evening Josh and his friend Ikaika

> were

> playing basketball out back. They bumped into each other and ....

>

> broke the pinky finger on his right hand. It's all swollen and

> bruised.

> The doctor splinted it. It's his very first fracture. Hopefully, it

> won't become a pattern. The endocrinologist seemed almost surprised

> that

> Josh had never had a fracture, after seeing the results of his bone

> density test. Maybe I'll call him tomorrow, to let him know

>

> Me ... I had the worst stiff neck pain yesterday. Ouch! Lots better

> today. Good thing. Well, I'll write more tomorrow.

>

> Hope everybody's doing okay

> Take care,

> Georgina

>

>

[Guest guest]

Dear Rusty,

Thank you.My finger is OK.Its still black and blue now but it will get

better soon.

From,

DONALD A MORSE wrote:

>

> Hey Josh, sorry to hear about the finger break, Carefull there guy when

> your driving to the basket!

> Georgina, great info, asusuall, gives me lots of reading. I just

> increased the ram in my pc, went from 128 mb to 192 mb. It makes a big

> difference in internet useage! Pages load much faster. And mail delivery

> too.

> Aloha

> Rusty Linbs

[Guest guest]

Dear Tree,

I'm sorry that you broke your wrist.I hope you feel better.I'm not to

sure about joining that club.

Good bye from Josh

theresa sappenfield wrote:

>

> hey Josh maybe we should start a " Break-A-Bone " club hehehehe We could be the

first members. Problem is this would be a club to try to stay out of lol !!!!

Happy mending Josh, you'll be back to playing ball soon ..It's those collisions

that get ya ..I wonder if cars are the only things with collision insurance. LOL

KEEP SMILIN':):)Tree

[Guest guest]

Hi ,

One time I roller skated on my moms toe and broke it.It was an

accident.I bet that hurts a lot too.This is the only time I broke

anything so far.

Bye

from

karens tribe wrote:

>

> Josh..OUCH!!!!!!!!! I remember when I was in seventh grade and was at the

> skating rink. There I was off the floor,sitting down on the carpet(against

> the wall),all of a sudden, I see a skate rolling off the floor, on to the

> carpet, and it hit my left wrist. Well my arm started swelling and of

> course, i stayed there. Well the next day went to drs. and it was broken,

> had to get a full cast on it. Boy did I think I was special..got out of

> class early..got on the bus before anyone did and of course, I picked the

> back seat(thought I was cool).

> Hang in there..

> (tabs..poly)

[Guest guest]

Hi Tree & all I'm with you Georgina - the dues for that club are way too high!

Hope Josh feels better soon.

Rob's Mom

[Guest guest]

Dear Georgina -

Sorry to hear about the fractured pinky:( Though, when you think

about it, it's hard to believe that finger does'nt get broken more

often - it's such a awkward little thing!

Halie, too, had to get glasses this summer for nearsightedness.

Luckily, there are such great frames for kids these days that it

does'nt seem like such a big deal anymore. Halie does'nt care much

for them (says they make her look weird:)) but all of her friends

think that they are really cool!! They ask to wear them and play

with them (yikes!!). Hang in there - always valleys before the peaks!

God Bless,

- mom to Halie, 6 1/2, Poly

> Hi Everyone,

>

> Wanted to send in some of those JRA related abstracts I had found.

I've

> saved a couple more in my drafts folder but they still need to be

> re-formatted. Maybe tomorrow. Josh had his rheumatology appt on

Friday.

> Went pretty well. Weren't able, yet, to reduce the steroids again.

Maybe

> next month. His SED rate last time was 22. Just a tiny bit too high.

> Nothing at all like the old numbers we used to get but his foot has

been

> hurting him and the rash has been back often again, so I understand.

> Better safe than sorry.

>

> Josh also saw his eye doctor. They did the slit lamp, glaucoma, and

> color tests. No change in the status of the cataract. So that was

good

> news. Appears that the plaquinel hasn't had any unwanted side

effects

> yet, either. We scheduled an appt for another peripheral vision

exam but

> that's not for a couple more months. 's vision tested right

on the

> borderline, so we decided to get glasses for him to use for

distances.

> Might make seeing the blackboards at school a little easier, though

the

> doctor said he didn't 'really' need them. I'm nearsighted, maybe he

> might be too? We'll see how it goes. He picked out the frames and

they

> should be in next week.

>

> Now for the bad news. Yesterday evening Josh and his friend Ikaika

were

> playing basketball out back. They bumped into each other and ....

> broke the pinky finger on his right hand. It's all swollen and

bruised.

> The doctor splinted it. It's his very first fracture. Hopefully, it

> won't become a pattern. The endocrinologist seemed almost surprised

that

> Josh had never had a fracture, after seeing the results of his bone

> density test. Maybe I'll call him tomorrow, to let him know

>

> Me ... I had the worst stiff neck pain yesterday. Ouch! Lots better

> today. Good thing. Well, I'll write more tomorrow.

>

> Hope everybody's doing okay

> Take care,

> Georgina

[Guest guest]

Hi,

, I know exactly what you mean. Getting glasses, these days,

doesn't seem to be a stigmatizing thing at all. I guess some things have

changed for the better since I was a kid. I got my first glasses in 3rd

grade and yup ... there were jokes and snickers about my having 4 eyes

My Kayla wanted glasses so badly that two years ago she bought some

non-prescription, non-sunglasses frames. She just really liked the look.

Well, she had an eye appt a few days after Josh and as it turns out ...

she's getting prescription glasses, too.

's finger is still a little bit swollen and a lot bruised. The

splint is doing a really good job of protecting it from further injury,

though. I just hope, with the arthritis and all, that it will heal well

for him. Today I met with all of Josh's new teachers, which I do each

year. One mentioned that the splint seemed to be interfering a little

with his note taking while she was lecturing. He had told me it wasn't a

problem. She said she could, if need be, tape her lectures or make a

xerox copy for him and said she'd be more than willing to make those

accommodations for the days when he misses school. It looks like we'll

have good cooperation from this years' teachers. I already got an extra

set of all his textbooks and gave them all my email address so they can

easily get in touch, as well as some printouts from the Arthritis

Foundation about students with JRA. Even the substitute teacher was

interested in reading about it.

So, let's hope the school year goes well. For Josh ... and all of our

kids

Aloha,

Georgina

mbvanert@... wrote:

>

> Dear Georgina -

> Sorry to hear about the fractured pinky:( Though, when you think

> about it, it's hard to believe that finger does'nt get broken more

> often - it's such a awkward little thing!

> Halie, too, had to get glasses this summer for nearsightedness.

> Luckily, there are such great frames for kids these days that it

> does'nt seem like such a big deal anymore. Halie does'nt care much

> for them (says they make her look weird:)) but all of her friends

> think that they are really cool!! They ask to wear them and play

> with them (yikes!!). Hang in there - always valleys before the peaks!

> God Bless,

> - mom to Halie, 6 1/2, Poly

[Guest guest]

Hi ,

Well, it's good to know that I'm not the only one who's had this happen.

We won't be seeing the doctor in the month of November, as they'll both

be at a conference, but in December maybe I'll just let Josh handle

everything on his own while I sit in the waiting area and read or

something. If it all goes well enough, then I'll know he's maturing to

the point where he can take on this added responsibility. Or maybe I can

have a few minutes with the doctor when his visit is done, to see if

they have any other questions for me. Maybe it's time for that kind of a

change and maybe this is exactly what was needed for me to see that.

Thanks, , for sharing your thoughts. Always appreciated.

Take care,

Georgina

karens tribe wrote:

>

> Hello Georgina..and ((((Josh))))!!!!!! Sorry i haven't written in awhile but

> it seems when i do..people take what i say wrong..so i choose now only to

> answer certain things.

> Please take take no offense to this but I had to laugh at your aggrivation

> about Josh saying everything is fine with him. Tabitha use to do this to me

> all the time..she would miss school and tell me she would hurt..then go to

> the doctors and she would say she is okay. I would bring up things that she

> told me and like you, would be looked at like i was crazy. So now when the

> doctor looks at me and ask how she has been doing..I say tell him. When she

> looks at me, as she tells him things, i tell her to look at him..that i am

> not the doctor. So i just sit there and pretend i am a bystander. That way i

> don't feel upset when she makes it sound like i don't know what i am talking

> about. Then when she is done telling him things..i ask my questions.

> Good luck and take care

> karen and tabitha(16..poly)

> p.s. ouch about the tooth...sssshhhhhhh

>

> From: Georgina <gmckin@...>

> Reply-

>

> Subject: 's Update (Was Re: MTX injections)

> Date: Sat, 27 Oct 2001 11:49:45 +0000

>

> Hi,

>

> Well, Josh saw his rheumatologist yesterday. The only sign of anything

> at all was that he had a little bit of the rash on one inner thigh. We

> saw her at about 11am and by then it's usually all faded away even if it

> was much more extensive when he woke up (around 6:15am). She found no

> inflammation in any of his joints and I almost got the impression that

> she thinks I'm imagining things when I told her about the pain that Josh

> was having in his ankles and wrists in the four weeks since we saw his

> other rheumatologist.

>

> Josh felt good yesterday and he didn't even want to be reminded about

> those times when he could barely drag himself up the stairs and was

> walking around like an old man again. He said it all depends on his

> shoes. If he wears good, expensive, supportive shoes he says he feet

> hurt later. Sometimes. If he wears his " rubbah slippahs' as they call

> them here in Hawaii, then he's fine. But I don't think so.

>

> So I reminded him about his wrists hurting. His left wrist. And he says,

> oh. It was my right wrist but it's okay now. So I said well, it was your

> left wrist you were showing me, because I asked you to take off your

> watch, remember? So I could see it better. And he says oh, that's right.

> Both of them were sore. But it's okay now, Mom. I'm fine.

>

> Before we saw the doctor Josh was talking to the nurse about the pain he

> has in his wrists sometimes. He may start wearing his wrist splints at

> night again, so maybe they'll feel better in the day time. So I don't

> know what to think? If he can talk to the nurse about these things why

> not mention it to the doctor? We have an appt to see the Shriner's

> outreach clinic people on the 1st of the month. Maybe I should just stay

> out the room and let Josh handle everything himself? Then, the next time

> he's having a bad day, I'll borrow a friend's video camera and share a

> copy with the doctor

>

> Actually, this morning when he came downstairs he said Mom, feel my

> ankle. His right ankle. It was warm and looked a little swollen but

> because of what happened at the exam yesterday, I said Hmmm ... it looks

> pretty good to me. So he says, no mom. Not there. Look at this. I have a

> big bump on my ankle. So I said, ohhhh .... that's sort of what I saw

> and felt last week but when I mentioned it to the doctor you both looked

> at me like I was crazy so I thought maybe I was just imagining things.

> Okay. So he smiled. Sometimes it's hard to figure him out

>

> No change in meds for the time being. I asked if, since Josh has been

> losing weight, we had to re-consider the dose of MTX he gets. Nope. It

> goes less by weight and more by body surface area so it'll stay at

> 15mgs. He's down to just 60 and a half pounds now, she said because of

> the prednisone reduction most likely. Asked about the possibility of

> having injections to the joints themselves next time, if need be,

> instead of increasing oral dose of corticosteroids. She said that's an

> option but not necessary now and if his systemic symptoms recur that

> wouldn't help as much as a higher oral dose. So .... that's about it for

> our appt yesterday.

>

> Josh also got his MTX yesterday. Uneventful, for him. I never take the

> cookies or candies the nurses always offer us. For whatever reason, I

> did yesterday. A soft cookie was all. As I chewed the first bite,

> something felt strange. One of my fillings, from years ago, cracked.

> Hasn't fallen off/out yet and I hope it doesn't. It's scares me to think

> about what it might look like under there! I can't see the dentist till

> Monday. So I'm being very careful about my mouth movements.

>

> Cautiously, quietly, wishing you all Aloha

> Georgina

[Guest guest]

Dear ..

So glad to hear all is well..... we came up for just a few hours a couple of weeks ago for an early two year check up..... in and out in about 1.5 hours. Randy is doing just fine and they drew blood on me just to have it recorded. As usual, everything came back in the normal range for the both of us.....

The trip was not as long as we thought it would be.... took 6.5 hours but it was raining and I was driving at night and had to be on the look out for deer.... Just hunkering in for the winter here.... it snowed all last friday and saturday.... but this week it is nice and sunny......

We got to see Dr , Dr Vogt was doing a transplant so we missed him, Lou, Lori and Kay. We had wanted to see Carol but she is so hard to catch in between appointments.

Take care and glad to hear you are doing better. The dosage of lasix and aldactone are the same one Randy was on. Hopefully the two together will help. I know it helped with the ascites but he still had swelling in his legs and puffiness all over. But you should see him now... LOL the first comment he kept hearing was: "Boy, you have put alittle weight on "....... He has gone from that 135 they saw him at when he was so sick to back to his normal 215. But he looks good, feels good, so we are happy .

See ya,

Cheryl & Randy

[Guest guest]

hi...

i wonder if you could give this a bit of thought and offer an opinion...it's

a bit of an ambiguous question, but i'd like to know what you think?

my daughter had her first surgery around the age of five for c-toma. the

c-toma affected her right ear, it was massive (but then they usually are) and

they did a modified radical mastoidectomy. it effected the stapes (stirrup)

bone, nearest the inner ear and had already started on the thin plate between

her ear and brain. they had orignally hoped to have to do much less work,

but it was bigger than expected.

anyway..the result was this modified version, where they left what ossicles

were left in situ, but did an open cavity (wall down).

about 18 months later...on her birthday...she wasn't quite right, and then

said she felt ill...and within the half hour had blood trickling steadily

from her left ear. the docs said dont worry...treated it conservatively with

drops etc...whilst her dad and myself argued that we felt this was a

recurrence of the c-toma.

over the course of a couple of months we managed with huge difficulty to get

a second opinion (not easy in the uk), where a CT scan was finally scheduled

and showed " white patches " in BOTH ears.

instinctively we already knew this was c-toma back again.

so...two years after the first operation....she had a second. they made use

of the cavity etc on the right side...telling us that the c-toma had grown to

the same size as before. unfortunately the left ear had a c-toma just as

bad. in short they managed successful op on her left ear...saving her

hearing, no probs etc. and where they had performed the " clean sweep "

approach the right side, the procedure was fairly easy and there was little

to worry about in terms of hearing. they classed her as having only one

hearing ear already.

it is now coming up for two years since that operation...and guess

what...yep, just before christmas she had blood coming from her right ear.

the blood stained discharge hasnt stopped since and everyday there is a bit

there. some days it's slight, other days it's a fair size trickle and bright

red. her ent says that it's not c-toma...just an infection and to treat it

conservatively with antibiotic drops. but we've been doing that since for

about a month and there's really no change.

is anyone thinking what i'm thinking???

a. that this is a recurrence?

b. that for doing this open cavity so they could clean in office etc....that

they didnt spot it coming last time...so why should i think they'll spot it

this time?

c. as far as i'm aware the c-toma itself isnt responsive to antibiotic

therapy, only any residual infection...which might explain why the drops

arent working?

d. that whilst i appreciate that the radiological risks are not in favour of

too many CT scans...that it's not unreasonable to have a least a mastoid x

ray?

any one got any thoughts?

i know that none of you know my daughter...and that i know her better than

any doctor, and that just because they have a training in the disease, they

dont live with it, but i suppose i just want to get some " real life " opinions

from people who know what its about.

hope you dont mind my asking...and thanks

regards

julie

[Guest guest]

Hi,

I just found this support group, and I think you all are wonderful for

sharing your stories. I have had a few surgeries for the c-toma.

I had my 2nd surgery in "96" to repair the skin graph, what he did was

narrow my ear canal so we did not have to worry about the hole. That

held for 5 years, but the problem I was having was the debre collecting

the bowl that was left from cleaning out the mastoid bowl. Last May

I went to a specialist and she did the new surgery, of taking bone and

making a paste and filling in the bowl area. It has almost been a

year and the surgery went very well. My ear is like completely normal.

Good luck to you and let me know how it goes.

Cherie Aguiar

davidbartoshuk wrote:

Hi all:

Many thanks to those of you who responed to my eariler post of

's story. Tomorrow 2/11 is operation day. We are

comfortable

with our surgeon (he does 3-5 c-tomas a week) and we have met the

anestheologist. Some interesting things that we have found

out:

o The ear patch covering will be coming off the

following day.

o The surgeon feels that once he is in there

he will have a

better sense of weather or not in

it acquired or congenital.

o Probably the most interesting development

is that the surgeon

has developed a method to minimze

the problems with the void

left after removing any portion

of the mastoid. Incredibly, he

makes up a kind of bone "pate" that

he uses to fill in the area

and then seals it over with what,

I don't know. The result is

that there is no longer a void to

attract water and thus

further infection.

I will let you all know how we fair tomorrow. Thank you all

for your

hopes and prayers.

david bartoshuk