's update

[Guest guest]

Hi...I think there are two things to remember:

" Mother knows best "

" follow your instincts "

these are two things that I learned to pay attention to when I worked

on the childrens ward in our local hospital. Mothers usually have the

best instinct in regard to their child.

> 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]

Georgina,

It is so hard to know when to say no about physical activity. I think that is really a mom thing. Sometimes I just bite back the tears, when I see Abbie in pain. But when I see other kids come out of the game for something, and Abbie never ask to come out I am so proud of her. So she comes home and goes for the heating pad or the ice or the hot shower, and never says a word. The thing that causes her the most grief is when she falls down at school. Her knee gives out and down she goes. She is so embarrassed. So I give hugs and kisses, and try not to say anything.

Hopefully Josh will find the line, but don't bet on it. Maybe tai chi would be an answer? I don't know a lot about it, but since it is slow and methodical moves, he could work into it. Whatever he chooses, good luck. It sounds like he is doing the adolescent thing and testing his limits. It won't end soon. lol

Christy

[Guest guest]

Hi Georgina...

one thing i have noticed about Josh is that he is a very determined

person..who refuses to let arthur get him down! I wish i had his willpower

in some of the things i would like to accomplish. I know you are very proud

of him! And it is true they tell us to let them set their own limits that

they know when to stop.

I seen a movie on the copuera(had to scroll down to see the spelling..lol) i

wish i could think of the name of the movie..it was awesome..i wish i was

limber and fit to do it..it looked fun!

That is great about Kayla..sounds like both of your children are very

talented in accomplishing things. Tell her good luck and break a leg(isn't

that suppose to be said in showbiz?)

Sorry to hear about you losing the birds..separation is hard..lol!

Good luck

karen(tab16.5..poly)

From: " Georgina " <gmckin@...>

Reply-

" a JRA List " < >

Subject: 's Update

Date: Fri, 8 Mar 2002 12:20:06 -1000

Hi,

Things have been incredibly busy around here for the past week or so. I'm

just now starting to get caught up with my emails. Sent a bunch of new ones

out today but I'm only half way through reading all the messages that have

come in. Josh hadn't been feeling too great. First time ever, he had an ear

infection. That was uncomfortable for him. He's been taking antibiotics for

it and seems to be getting better.

He saw the Shriner's orthopedic outreach doctors earlier this week. When she

examined his feet she said it looked like some tendonitis and synovitis,

pretty common with kids who have JRA with foot involvement. His right ankle

was warm to touch. The rash was present on his legs, going down to his

knees. But overall, he's been okay. Seems to have adjusted pretty well to

the lower amount of steroids. Just 3mgs a day now. That's pretty hard to

believe!

Josh had a question for the doctor, about an idea he had. He thought that if

he wore weights on his hands/wrists while he shot hoops, that maybe his

wrists would get stronger. When he took off the weights he figured it would

be easier to throw the basketball normally and he'd get better at it. Well

.... the doctor told him that playing basketball, period, was exercise enough

for his wrists. They already have had stress and adding weights might injure

them. He got the okay to do some light lifting if he wants (really light!)

to build up his arm strength. That makes sense to me.

The day after he saw the ortho he got a book at the library about copuera.

Sort of like dance/martial arts. Well, I should have known better. He said

he wanted to take it down to the park, out back, so he and his friends could

look at all the moves. I was busy doing the laundry at the time and had no

objections. Well, that evening he felt sore. He used up all the hot water

trying to recuperate. They didn't just look at the moves. They followed the

step by step instructions and tried doing them, too. He woke up the next

morning feeling very sore. His hips and legs were hurting. I've heard so

often that our children need to learn to set their own limits. There's a

really fine line though, between stopping before it gets painful and

learning how much you're body can handle at any given time. Josh is still

learning.

Kayla's been so busy every day (and night) rehearsing and practicing for

Broadway Babes. Tonight is their opening night ... and they'll be doing a

total of five shows. She's so thrilled at the opportunity to perform.

Those little baby birds I told you all about, well ... not so little

anymore. They are absolutely beautiful. We have 3 pearlies, one pearly pied,

and one normal split to pied. My friend Lorraine had first choice and chose

hers the other day. Another normal grey with some extra yellow coloring.

He's getting majorly pampered. Today all the babies will be going to their

new homes. I'm missing them, already : ( Which is why I'm still online,

instead of packing them up for delivery. But I guess I better do that.

So, I'll be in touch again soon. Till then,

Aloha ...

Georgina

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[Guest guest]

Georgina-

Glad to hear Josh has made it down to 3 mg. per day. That's excellent. Sounds like he really wants to push ahead. Maybe just a little slower!!!

Diane (, 2, pauci)

[Guest guest]

Kellie-

How awful to go to a Dr. that makes you and feel bad. I think being positive is a big part of being well. Sounds like has a good attitude. Why would her doctor say she's doing so awful if her labs are better and you've seen a huge improvement in her? Well, chin up !!!

Diane (, 3, pauci)

[Guest guest]

Hi Kellie,

You know you can vent here all you want and need to. I was not in the least bit

bored by your post - I was dismayed at the doc's lack of sensitivity. I

certainly understand you not wanting to take back there - no child

should leave a doctor's office asking if the doctor doesn't care - I think I

would write that doc to let them know the impact the lack of concern had on the

child. Rob's rheumy was looking for the return of " supersonic " as much as I

was. Best wishes for you and and let her know that we are very proud of

her trying and doing it!!

Val

Rob's Mom (4,systemic)

In a message dated Thu, 25 Apr 2002  9:56:31 AM Eastern Daylight Time, " angel

73 " <angelsbabysis@...> writes:

>    well it's me again.. i know i don't send very much in here mainly just

jessica's updates but i am a busy person like the rest of you all. well we took

her back to pitts. children's for another appt. and i left there in tears.. they

had a pt and ot consult while i was there and they both said she looks terrible.

and needs more. she looks 100% better then she did months ago and has been doing

great. well anyway. when the Dr. came in she looked at jessica and said she

looks more inflammed then she did last time.(wondering to myself can she really

remember how every joint looked last time she seen her 3 months ago) well

anyways they increased her mtx to 0.5 every week week i knew they were going to

do. and as she bent each joint she looked at jessica and said ow that hurts

don't it.. well what do you think a 7 year old is going to say.. yes. then i

told her jessica started playing indoor soccer and had her first game and played

the whole 30 min. and said it hurt her legs a bit but she remembered what i had

always told her.. " there's no such thing as can't unless you try " and she looked

at me and said mommy i tried and i did it.. i almost cried.. but when i told her

Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't

she care.. it broke my heart.. it seems like she never has anything positive to

say.. and let me tell you i left there and had a 2 hour drive home in tears the

whole way. i just spoke with her rhummy here in erie and she said her last labs

were looking good.. sed rate down from 28 to 12 i was happy.. and the liver

counts are good and she is still anemic which i knew. she told me just to stay

with the 0.5 of mtx and when i go see her in may we will talk more then about

what we should do.. i think i want to quit going to pitts. she isn't doing

anything that this rhummy here in erie is doing.. and at least the rhummy here

talks to jessica not just me.. well all i am sorry to vent like this on you all

but i and just so upset with all this. i don't know what to do i try and try and

always get shot down.. anyways i am happy that her sed rate has dropped and she

is playing soccer and like a normal 7 year old playing i am just thankful for

her she is an angel sent here from heaven from my grandma for me to take care of

and i will do that and anything i can to help her have a normal life.. well i

guess i'd better get going i think i have bored you all enough.. thanks for

listening.. kellie amp; jessica 7 year poly

>-------------------------------------------------------------------------------\

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>

>

[Guest guest]

Ty val

>From: carneyval@... >Reply- > >Subject: Re: 's update >Date: Thu, 25 Apr 2002 12:22:15 -0400 > >Hi Kellie, > >You know you can vent here all you want and need to. I was not in the least bit bored by your post - I was dismayed at the doc's lack of sensitivity. I certainly understand you not wanting to take back there - no child should leave a doctor's office asking if the doctor doesn't care - I think I would write that doc to let them know the impact the lack of concern had on the child. Rob's rheumy was looking for the return of "supersonic" as much as I was. Best wishes for you and and let her know that we are very proud of her trying and doing it!! >Val >Rob's Mom (4,systemic) > >In a message dated Thu, 25 Apr 2002 9:56:31 AM Eastern Daylight Time, "angel 73" writes: > > > well it's me again.. i know i don't send very much in here mainly just jessica's updates but i am a busy person like the rest of you all. well we took her back to pitts. children's for another appt. and i left there in tears.. they had a pt and ot consult while i was there and they both said she looks terrible. and needs more. she looks 100% better then she did months ago and has been doing great. well anyway. when the Dr. came in she looked at jessica and said she looks more inflammed then she did last time.(wondering to myself can she really remember how every joint looked last time she seen her 3 months ago) well anyways they increased her mtx to 0.5 every week week i knew they were going to do. and as she bent each joint she looked at jessica and said ow that hurts don't it.. well what do you think a 7 year old is going to say.. yes. then i told her jessica started playing indoor soccer and had her first game and played the whole 30 min. and said it hurt her legs a bit but she remembered what i had always told her.."there's no such thing as can't unless you try" and she looked at me and said mommy i tried and i did it.. i almost cried.. but when i told her Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't she care.. it broke my heart.. it seems like she never has anything positive to say.. and let me tell you i left there and had a 2 hour drive home in tears the whole way. i just spoke with her rhummy here in erie and she said her last labs were looking good.. sed rate down from 28 to 12 i was happy.. and the liver counts are good and she is still anemic which i knew. she told me just to stay with the 0.5 of mtx and when i go see her in may we will talk more then about what we should do.. i think i want to quit going to pitts. she isn't doing anything that this rhummy here in erie is doing.. and at least the rhummy here talks to jessica not just me.. well all i am sorry to vent like this on you all but i and just so upset with all this. i don't know what to do i try and try and always get shot down.. anyways i am happy that her sed rate has dropped and she is playing soccer and like a normal 7 year old playing i am just thankful for her she is an angel sent here from heaven from my grandma for me to take care of and i will do that and anything i can to help her have a normal life.. well i guess i'd better get going i think i have bored you all enough.. thanks for listening.. kellie amp; jessica 7 year poly > >--------------------------------------------------------------------------------Chat with friends online, try MSN Messenger: Click Here > > > >

[Guest guest]

ty diane.. she is a very strong willed child and has alot of family members (aunts, uncles, etc.) that are very supportive.... thanks again for listening

>From: dbornscheu@... >Reply- > >Subject: Re: 's update >Date: Thu, 25 Apr 2002 12:22:46 EDT > >Kellie- > >How awful to go to a Dr. that makes you and feel bad. I think being >positive is a big part of being well. Sounds like has a good >attitude. Why would her doctor say she's doing so awful if her labs are >better and you've seen a huge improvement in her? Well, chin up !!! > >Diane (, 3, pauci) Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Kelli,

Do you see Dr. Wargula? We go to Children's in Pgh as well. We see Dr. Wargula May 5th. We were seeing Dr. but she is moving back to Boston. This will be Nikki's 3rd pediatric rheumatologist in 2 years but I am thankful that Children's continues to recruit them b/c they are so hard to find.

I know a new Director is starting in July at Children's and he is supposed to be recruiting another pediatric rheumatologist. Maybe, you can just switch doctors this summer when these 2 new physicians start.

Take care,

Chris

-----

Original Message-----From: angel 73 [mailto:angelsbabysis@...]Sent: Thursday, April 25, 2002 9:53 AMJra-list Subject: 's update

well it's me again.. i know i don't send very much in here mainly just jessica's updates but i am a busy person like the rest of you all. well we took her back to pitts. children's for another appt. and i left there in tears.. they had a pt and ot consult while i was there and they both said she looks terrible. and needs more. she looks 100% better then she did months ago and has been doing great. well anyway. when the Dr. came in she looked at jessica and said she looks more inflammed then she did last time.(wondering to myself can she really remember how every joint looked last time she seen her 3 months ago) well anyways they increased her mtx to 0.5 every week week i knew they were going to do. and as she bent each joint she looked at jessica and said ow that hurts don't it.. well what do you think a 7 year old is going to say.. yes. then i told her jessica started playing indoor soccer and had her first game and played the whole 30 min. and said it hurt her legs a bit but she remembered what i had always told her.."there's no such thing as can't unless you try" and she looked at me and said mommy i tried and i did it.. i almost cried.. but when i told her Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't she care.. it broke my heart.. it seems like she never has anything positive to say.. and let me tell you i left there and had a 2 hour drive home in tears the whole way. i just spoke with her rhummy here in erie and she said her last labs were looking good.. sed rate down from 28 to 12 i was happy.. and the liver counts are good and she is still anemic which i knew. she told me just to stay with the 0.5 of mtx and when i go see her in may we will talk more then about what we should do.. i think i want to quit going to pitts. she isn't doing anything that this rhummy here in erie is doing.. and at least the rhummy here talks to jessica not just me.. well all i am sorry to vent like this on you all but i and just so upset with all this. i don't know what to do i try and try and always get shot down.. anyways i am happy that her sed rate has dropped and she is playing soccer and like a normal 7 year old playing i am just thankful for her she is an angel sent here from heaven from my grandma for me to take care of and i will do that and anything i can to help her have a normal life.. well i guess i'd better get going i think i have bored you all enough.. thanks for listening.. kellie & jessica 7 year poly

Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

I think that is terrible about how the rhemey dosen't talk to your child or act like she cares. We go to Shriners in Lexington Ky to Dr. Mier and they are so nice up there and Dr. Mier talks to na a whole lot even though she is only just turned 2 years old. I can really see that Dr. Mier cares about na. " jayclovely" < jaycpepsi@...

"Sevco, " <sevcoca@...> wrote:

Kelli,

Do you see Dr. Wargula? We go to Children's in Pgh as well. We see Dr. Wargula May 5th. We were seeing Dr. but she is moving back to Boston. This will be Nikki's 3rd pediatric rheumatologist in 2 years but I am thankful that Children's continues to recruit them b/c they are so hard to find.

I know a new Director is starting in July at Children's and he is supposed to be recruiting another pediatric rheumatologist. Maybe, you can just switch doctors this summer when these 2 new physicians start.

Take care,

Chris

-----

Original Message-----From: angel 73 [mailto:angelsbabysis@...]Sent: Thursday, April 25, 2002 9:53 AMJra-list Subject: 's update

well it's me again.. i know i don't send very much in here mainly just jessica's updates but i am a busy person like the rest of you all. well we took her back to pitts. children's for another appt. and i left there in tears.. they had a pt and ot consult while i was there and they both said she looks terrible. and needs more. she looks 100% better then she did months ago and has been doing great. well anyway. when the Dr. came in she looked at jessica and said she looks more inflammed then she did last time.(wondering to myself can she really remember how every joint looked last time she seen her 3 months ago) well anyways they increased her mtx to 0.5 every week week i knew they were going to do. and as she bent each joint she looked at jessica and said ow that hurts don't it.. well what do you think a 7 year old is going to say.. yes. then i told her jessica started playing indoor soccer and had her first game and played the whole 30 min. and said it hurt her legs a bit but she remembered what i had always told her.."there's no such thing as can't unless you try" and she looked at me and said mommy i tried and i did it.. i almost cried.. but when i told her Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't she care.. it broke my heart.. it seems like she never has anything positive to say.. and let me tell you i left there and had a 2 hour drive home in tears the whole way. i just spoke with her rhummy here in erie and she said her last labs were looking good.. sed rate down from 28 to 12 i was happy.. and the liver counts are good and she is still anemic which i knew. she told me just to stay with the 0.5 of mtx and when i go see her in may we will talk more then about what we should do.. i think i want to quit going to pitts. she isn't doing anything that this rhummy here in erie is doing.. and at least the rhummy here talks to jessica not just me.. well all i am sorry to vent like this on you all but i and just so upset with all this. i don't know what to do i try and try and always get shot down.. anyways i am happy that her sed rate has dropped and she is playing soccer and like a normal 7 year old playing i am just thankful for her she is an angel sent here from heaven from my grandma for me to take care of and i will do that and anything i can to help her have a normal life.. well i guess i'd better get going i think i have bored you all enough.. thanks for listening.. kellie & jessica 7 year poly

Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

I very much agree with Robs mom on that. " jayclovely" angel 73 <angelsbabysis@...> wrote:

Ty val

>From: carneyval@... >Reply- > >Subject: Re: 's update >Date: Thu, 25 Apr 2002 12:22:15 -0400 > >Hi Kellie, > >You know you can vent here all you want and need to. I was not in the least bit bored by your post - I was dismayed at the doc's lack of sensitivity. I certainly understand you not wanting to take back there - no child should leave a doctor's office asking if the doctor doesn't care - I think I would write that doc to let them know the impact the lack of concern had on the child. Rob's rheumy was looking for the return of "supersonic" as much as I was. Best wishes for you and and let her know that we are very proud of her trying and doing it!! >Val >Rob's Mom (4,systemic) > >In a message dated Thu, 25 Apr 2002 9:56:31 AM Eastern Daylight Time, "angel 73" writes: > > > well it's me again.. i know i don't send very much in here mainly just jessica's updates but i am a busy person like the rest of you all. well we took her back to pitts. children's for another appt. and i left there in tears.. they had a pt and ot consult while i was there and they both said she looks terrible. and needs more. she looks 100% better then she did months ago and has been doing great. well anyway. when the Dr. came in she looked at jessica and said she looks more inflammed then she did last time.(wondering to myself can she really remember how every joint looked last time she seen her 3 months ago) well anyways they increased her mtx to 0.5 every week week i knew they were going to do. and as she bent each joint she looked at jessica and said ow that hurts don't it.. well what do you think a 7 year old is going to say.. yes. then i told her jessica started playing indoor soccer and had her first game and played the whole 30 min. and said it hurt her legs a bit but she remembered what i had always told her.."there's no such thing as can't unless you try" and she looked at me and said mommy i tried and i did it.. i almost cried.. but when i told her Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't she care.. it broke my heart.. it seems like she never has anything positive to say.. and let me tell you i left there and had a 2 hour drive home in tears the whole way. i just spoke with her rhummy here in erie and she said her last labs were looking good.. sed rate down from 28 to 12 i was happy.. and the liver counts are good and she is still anemic which i knew. she told me just to stay with the 0.5 of mtx and when i go see her in may we will talk more then about what we should do.. i think i want to quit going to pitts. she isn't doing anything that this rhummy here in erie is doing.. and at least the rhummy here talks to jessica not just me.. well all i am sorry to vent like this on you all but i and just so upset with all this. i don't know what to do i try and try and always get shot down.. anyways i am happy that her sed rate has dropped and she is playing soccer and like a normal 7 year old playing i am just thankful for her she is an angel sent here from heaven from my grandma for me to take care of and i will do that and anything i can to help her have a normal life.. well i guess i'd better get going i think i have bored you all enough.. thanks for listening.. kellie amp; jessica 7 year poly > >--------------------------------------------------------------------------------Chat with friends online, try MSN Messenger: Click Here > > > >

[Guest guest]

Sorry to hear about your bad eperience at pittsburgh childrens

hospital..things must have changed drastically when they lost Dr.

Londino..Tabitha had him as her doctor when she was younger. Maybe you can

check into seeing if another doctor there specializes with this disease. My

first doctor there I had a very bad experience with then I was lucky enough

to find another rheumatologist there who was so much better..well she went

to teaching and then Dr. Londino took over and he also was great but I have

heard he passed away awhile back. That man had away with Tabitha..he made

her blush everytime we went..was so cute.

Anyways don't ever feel like you are boring anyone..I wish I would have had

this site when Tabitha was diagnosed back in 89'...I hope soon everything

works out and you can find a doctor you are suitable with and starts

feeling better. Maybe you can check into a shriners..I heard they are

wonderful hospitals.

Take care and good luck

karen(tab17..poly)

From: " angel 73 " <angelsbabysis@...>

Reply-

Jra-list

Subject: 's update

Date: Thu, 25 Apr 2002 09:53:25 -0400

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well it's me again.. i know i don't send very much in here mainly just jessica's updates but i am a busy person like the rest of you all. well we took her back to pitts. children's for another appt. and i left there in tears.. they had a pt and ot consult while i was there and they both said she looks terrible. and needs more. she looks 100% better then she did months ago and has been doing great. well anyway. when the Dr. came in she looked at jessica and said she looks more inflammed then she did last time.(wondering to myself can she really remember how every joint looked last time she seen her 3 months ago) well anyways they increased her mtx to 0.5 every week week i knew they were going to do. and as she bent each joint she looked at jessica and said ow that hurts don't it.. well what do you think a 7 year old is going to say.. yes. then i told her jessica started playing indoor soccer and had her first game and played the whole 30 min. and said it hurt her legs a bit but she remembered what i had always told her.."there's no such thing as can't unless you try" and she looked at me and said mommy i tried and i did it.. i almost cried.. but when i told her Dr. about it all she said was oh.. jessica asked me on the way home mommy didn't she care.. it broke my heart.. it seems like she never has anything positive to say.. and let me tell you i left there and had a 2 hour drive home in tears the whole way. i just spoke with her rhummy here in erie and she said her last labs were looking good.. sed rate down from 28 to 12 i was happy.. and the liver counts are good and she is still anemic which i knew. she told me just to stay with the 0.5 of mtx and when i go see her in may we will talk more then about what we should do.. i think i want to quit going to pitts. she isn't doing anything that this rhummy here in erie is doing.. and at least the rhummy here talks to jessica not just me.. well all i am sorry to vent like this on you all but i and just so upset with all this. i don't know what to do i try and try and always get shot down.. anyways i am happy that her sed rate has dropped and she is playing soccer and like a normal 7 year old playing i am just thankful for her she is an angel sent here from heaven from my grandma for me to take care of and i will do that and anything i can to help her have a normal life.. well i guess i'd better get going i think i have bored you all enough.. thanks for listening.. kellie & jessica 7 year polyChat with friends online, try MSN Messenger: Click Here

[Guest guest]

Hi Vicky,

Letters like yours can be very encouraging for others, so I'm very happy that you decided to post an update about how has been doing. I was happy to read that she hasn't had any fevers in recent weeks and hopefully it won't be long before the darned rash goes away, too. Josh has been lucky in that his rash is usually covered when he's wearing shorts and a t shirt. It appears only on his upper thighs and upper arms, chest and back. One time only, it went as far down as his knees. One less thing to have to worry about, though.

Stay Strong ...

Aloha, Georgina

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

From: vdziubinski48108

Hi all, I know I have not been writing much but I have been reading all the messages. I sometimes get depressed reading the postings as my is not real sick and all the kids I am reading about seem so sick (it makes me want to cry). I keep hoping and praying that she will not get real sick. Jess was diagnosed with Systemic Onset JRA in December, she has been on Naprosyn and then was switched to Indosyn. She went back to see her Rheumy on Tuesday (May 7) and they did more blood work. Her CRP level has continued to go down and is at 1.1 with .5 being normal. Her Rheumy has decided to put her on a low does of MTX to try and nip this thing in the bud and get her levels back to normal. She took her first does (pill form) on Friday and did well with it. I am hoping this will be all it takes to head off this nasty disease before it affects her joints. She has not had the fevers since a week or so after starting on the Naprosyn but has continued to have the rash. I pray for all of you every day and for Jess as well. Children do not deserve to be this sick. Vicky ( 7, systemic)

[Guest guest]

Vicci, one thing concerns me about his behavior. Is there bipolar in your

family? Some of this reminds me of a child with early onset bipolar. If it

is in your child's family history giving him meds for depression (Paxil) and

for ADHD/ADD (Ritalin) can cause mania and in some cases hospitalization. If

there is any bipolar history it should be brought up to his doctors.

I first heard about NAET on the gluten-casein free list GFCFKids.. I did

not really check it ( http://www.naet.com/ ) out until about a year after we

had done with the diet. After buying the doctor's book we went to a NAET

practitioner close by. After a few visits with which we saw some success I

found the http://www.allergyantidotes.com/ site. I had read where Sandi

Radomski was helping some children with autism so I wanted to check it out.

I bought her Allergy Antitdote manual. Since I had already been interested

in EFT this all fell in together. It was too hard for us to eliminate every

thing that a child might be allergic too. We were on the diet for almost a

year and so little improvement. I am sure there were other things we should

have eliminated but just could not seem to do it. I would suggest that you

check this out. I spent a great sum of money doing the diet and I have

spent a fraction of that amount learning about these techniques which I have

more faith in now. The gfcf diet does work but it is so hard and so often

there are so many other things that are hidden that must be searched out and

eliminated and for some it is impossible.

And your post was not too much. Look at all that is going on for .

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall, clondine .1 mg,

Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

[Guest guest]

Betty,

As far as I know, no one in my or my husband's family has bipolar. In

fact, there is little history of any mental illness or disorder in

the family. We have a single case of mental retardation and two (one

each side) of ADHD. That's it.

Now, about those abbreviations, what is NAET and EFT? I have never

seen these before.

I know this diet is difficult, believe me! I have decided to put

back on some milk because he is soooo stressed. I am just

cutting it with the rice milk so he isn't getting as much. I think I

might let him have a slice or two of cheese a couple times a week,

too. We've only just started the GFCF diet and already, I don't think

we'll be sticking to close to it. has been miserable and

really acting up. LOTS of oppositional behavior, self-stimming

(spinning, rocking, noises, stretching), and whining. And I haven't

even started the full diet!In school, he is refusing to do work and

his teacher is taking recess away so that he can finish his

classwork. She has also resorted to making him eat in the classroom

with her so he won't eat anything " forbidden " . Another child had

bought him a soft pretzel on Tuesday - big deal.

I don't know about all of this. I am really thinking about chucking

it all and going back to the way we were before the school started

complaining about him. I think they can learn to live with him as is.

They certainly don't want to help him do any better or put up with

the way he is now in school, which is the way he has always been at

home anyhow. The school sees nothing really " wrong " so why should I?

I often wonder, as I never did before, if I am really doing

any favors.

I am tired and stressed and I've had enough.

Vicci

[Guest guest]

NAET stands Nambudripad's Allergy Elimination Techniques

EFT stands for Emotional Freedom Techniques

I started going to NAET treatments recently but could not afford to keep taking

5 people a week. Using similar treatments I started doing some of it at home

and then I came across Sandi's site and got her manual. It was even a bigger

help because it has several of the similar treatments in it so a person can take

their pick of which one to use.

There is even a list for it AllergyRelatedVaccineInducedAutism

What are Nambudripad's Allergy Elimination Techniques?

http://www.naet.com/subscribers/index.html

You cannot do the gluten-casein diet just a little. It is whole hog or nothing.

That is the killer part of it. Just a crumb of gluten or cheese is as bad as

the whole toasted cheese sandwich. I would rather work on eliminating those

allergies or intolerances than trying to eliminating the foods that cause them.

I went the one route for a year and spent a few thousand dollars. When

moved in with us I saw that we were not going to be able to keep to the diet and

me keep my sanity or not kill the kid. (bad joke here)

So check out these sites and see what you think.

http://www.allergyantidotes.com/index-old.htm

I have to add that what really got me to finally try the NAET was having two

people I met on the internet have such wonderful things happen to them when they

tried it. The first one has a child with autism and he has made great strides

with it. But he is still on the gfcf diet. The second one is a grandma like

me, raising 3 grandkids with her hubby. Two of the kids had allergies, one of

them severe allergies. He would turn into a little wall bouncing manic when he

ate the wrong foods. Now he can eat just about anything. The kids are still RAD

but they have made great improvements. Both she and her husband had several

health problems and all are either gone or greatly reduced.

Betty Effexor, Omega 3's

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall, clondine .1 mg, Omega

3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

[Guest guest]

,

I'll be thinking of you. I too have PCO and know how it can mess things up.

's Wife ('88)Mom to ('90) & Charlie ('02)265/258.5/175

's update

I have had some strange health problems for a couple of weeks. As you may know I have polycystic ovarian disease (PCO). Well for the past couple of weeks I had been having digestive problems that cumulated with passing blood in my stool. I was check out, and I do not have an infection, but I could have some form of inflammatory bowel disease (ulcerative colitis or crohn's disease) or colon cancer. I will know more on Feb 18 (my daughter's 14th birthday) when they do the colonoscopy. The wanted to get me in sooner, but due to the HMO and my family's time constraints that was the best time for us.

Wish me luck and I will be staying on program. I think I need to do this now more that ever.

Take care and keep the faith

[Guest guest]

,

Thanks, PCO can be a real icky thing....are you taking metformin or glucophage for PCO? Just curious, I have taking it for 2 1/2 years and I have had some relief of my symptoms. It also makes losing weight twice as hard. Good luck to you also .

[Guest guest]

In a message dated 1/21/2003 10:53:00 AM Eastern Standard Time,

bloominrose@... writes:

> are you taking metformin or glucophage for PCO

- my daughter is on this and like you she finds the losing weight hard.

Hopefully all will settle down soon....

[Guest guest]

Hi Carol,

I loved your little Tweety Bird graphic. Very cute : ) And it was great to hear from you once again. Seems like a whole bunch of people had been bouncing all over 's mailing lists. I sent in some reactivation requests and it appears that many of them worked : )

I was very glad to read that seems to be having a good response to the MTX. Yea!!! The current dose of 12.5mgs (each little pill being 2.5mgs, right?) is still pretty low. Sounds like a good plan, to try to increase it up to 20mgs. They'll be sure to request more frequent labs (every month or every 6 weeks, probably) to monitor her liver functions and other important measures, to make sure she's tolerating it.

Getting the flu can definitely do that. Josh recently was having fevers, not quite reaching to 104. He was having sore and achey joints and muscles but I didn't get too overly worried this time, since his sister was sick too (and later on, so was I). I did bring him to the doctor twice, just to be on the safe side (and to get eye drops for conjunctivitis.) When the flu symptoms subside, hopefully will be back on track and feeling much better again.

! That poor guy : ( I hope his nose is alright? That sounds like a nasty injury. Especially after just returning to school and having gotten better from being sick. I hope it's healing well and not causing any further problems for him?

Carol, a couple months back I got an unexpected phone call from the mainland. It was the Mom of one of my very best friends from college. We had a very deep, close, relationship. I call him my friend but he was more like a brother, really. That surprised me because, since moving to Hawaii, I hadn't spoken to or seen his Mom in years. She phoned me on his birthday, just a few hours before I was planning to call him ~ for one of our marathon chats to catch up on everything. She had bad news, though. He had taken his own life, just a few weeks before. The sadness and the shock was quite overwhelming. I can definitely understand, even better now, how those kinds of circumstances might lead to a major flare. I'm happy that your daughter has been able to cope and adjust, to move on despite the grief. She's a very strong young woman. Has a lot of her Mom's good qualities : )

Stay Well,

Georgina

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

From: Carol Shroyer

Hello to all!

After being soft and hard bounced ( of which both was a really cheap thrill!) I hope that some one out there receives this.

is the child that at the end of last year was in such a bad flare that after her friends Dad committed suicide she went into a rigid flare. She was like a piece of wood. It was such a scary time. Her friend is still finding her way. is doing ok. For awhile she read a LOT into our daily lives. The simple phase of I give up was enough to set her free!

Lets fast forward to her lifestyle today....shall we? She has been on MTX since the beginning of the school year. She had tried Naprosyn, Vioxx, Celebrex and Tolectin. No relief from the spondy. Along came Sir Meth. She is so in love. She is up to 5 a week of MTX. Along with the folic acid and daily vitamin. The doc also has her on Naprolan. 500mg per day time released. The doc hopes to get her up to 8 tabs a week of the MTX. Here is the issue for us. We have been responding to the meth (as likes to call it to her friends in fun) really well. Along comes the flu. Her joints suddenly hurt? Yes she ran a fever again like old times...104.3 was max recorded. She has been "flu" symptom less for a week and still hurts?!? Would this throw off the MTX?

After got over the flu he went back to school last Tuesday. Well, on Wednesday I got a call from the school nurse that I needed to get him stat! He fell going up the concrete steps that have steel reinforcements for durability and hit on his nose first! Forget the fact that he has just gotten over an upper respiratory infection and the flu...his book bag that weighs 60+ pounds acted as a forward thrust to make SURE the bridge hit good! Monday we will know if he needs surgery too. He has had 3 stitches. His eyes are really swollen and the bridge of his nose is green and flat. Oh the joy in our home...

I am so jealous that I am not going to the pot luck in Tennessee. How about one over the summer months? I might even scoop Robbin and up with us!

Have a sunny day!

Carol

--- car54ol@...

[Guest guest]

, I stand corrected -- you are correct that you talked about

aspirin allergy on its own, not in the context of Samters.

Having said that, I still think the issue is a little confusing.

Saying there are " degrees " of something is very different than saying

there are two different fundmental mechanisms. Several postings have

confirmed that there is a basic chemical difference between allergy

and intolerance, not just a matter of severity. That, for me at

least, IS a black and white issue.

The distiction is important. If there is an aspirin allergy, that

would suggest that any treatments for it, eg. desensitization, diet,

would not necessarily work for people suffering with it, as it would

for the " intolerant " people. It's just that I don't think I have

EVER seen anything published on aspirin allergy (as opposed to

intolerance). Has ANYONE seen anything on this?

Ken West

>

> I never said that there are 2 kinds of Samters. Just people

who are

> allergic to aspirin and those that are sensitive. I reacted at only

40 mg, or

> half of a baby aspirin. My symptoms were sneezing and a runny nose.

This is the

> response they want, the doctors do not want the asthma to get

involved. So I

> was pretty easy to desensitize. I am now successfully desensitized

and I feel

> great! I can still breathe through my nose! No congestion. No smell,

but that's

> ok. There are different degrees of sensitivity to the aspirin. I

just got

> sneezy and a runny nose while someone else here might have to have a

breathing

> treatment or even more serious medication. My (desensitization)

doctor said

> that everyone's trigger and treatment for Samter's is different, it

is not black

> and white. Right now this is the only treatment offered besides

surgery.

> Surgery and the desensitization work best hand in hand. But in the

future he

> believes there will be more.

>

> K, Michigan

[Guest guest]

Dear ,I reckon you are now going to get practically all the females and some of the males in the Group oohing and aahing over your baby picture. What a wonderful sight ! I bet you can't stop looking at it. You can't believe it's true can you? After all this time I still remember the feeling and share your utter joy with you.It is good to hear from you. All the best for the coming (exciting) months.Love from Ann in England XXXX>> Hello Everybody!!> My apologies for being away so long, I don't know where time goes!!?? I see> that there is alot of action going on around here, and that is very good for> all you newcomers! > Welcome to all you new people, and I hope you find comfort in knowing you're> not alone with achalasia! This group is full of wonderful, caring people> who are here to help you, support you and answer questions about achalasia.> Many of us have been there, done that!> I had my surgery almost 16 month ago in Vancouver, BC by Dr. Finley,> and I am doing well since then. Life if pretty much back to normal. > > I am currently 4 months pregnant with our first baby, and am doing pretty> good. I cannot eat much at any one time, and am not sure if it is because> of Baby pressing on organs, or because of my surgery. I think it is because> of my surgery, but not entirely sure. I just eat all my meals in a few> rounds, and keep food with me at all times. I get hungry LOTS!!> I have only gained 5 lbs, which I am told is just fine for my body type. I> was not thin to begin with, so I do not need to gain the 30lb "average" -> lets hope that I don't !!!!!!!!!! Even with achalasia, many of us still> need diets! > I have attached my ultrasound pictures from Monday this week - it was very> exciting!! It is absolutely amazing how quickly a baby develops!! To see> "him" swimming in there was soooo crazy! "He" is finally starting to really> move around lots, and I LOVE the feeling!> Well, I'm off to bed, I'm pooped out these days! Feel free to email me> anytime!> > Hugs,> in BC> 23> <http://lilypie.com/> Lilypie Baby Ticker>

[Guest guest]

I pigged out on chips and dip but worked out during half time. Pinched my belly on my new ball LOL - I have an almost 19 yo daughter who did the ball 3x a week in gym last year - so when she wasn't laughing at me she was trying to teach me the right way to use it Used some weights, cords and played for a few minutes with the jackie chan piece of eqipment I bought 2 years ago and never used. 15 minutes on the bike - during all the excitment so I ws pumping LOL Neal <walking2health@...> wrote: Hope Everyone is having a great Football Sunday!! Let's not forget to get out there and get active!Live, Love, Laugh

[Guest guest]

My son has a ball and I for the life of me wouldn't know how to even begin to use it.LOL

~:~The Personal Touch~:~Tags, Stats, or anything else personalized with your name.Everything here is personalized!http://free.hostdepartment.com/t/thepersonaltouchMy Personal Web Site

Re: 's Update

I pigged out on chips and dip but worked out during half time. Pinched my belly on my new ball LOL - I have an almost 19 yo daughter who did the ball 3x a week in gym last year - so when she wasn't laughing at me she was trying to teach me the right way to use it Used some weights, cords and played for a few minutes with the jackie chan piece of eqipment I bought 2 years ago and never used. 15 minutes on the bike - during all the excitment so I ws pumping LOL Neal <walking2health@...> wrote:

Hope Everyone is having a great Football Sunday!! Let's not forget to get out there and get active!Live, Love, Laugh

[Guest guest]

Those chips and dip will kill you! Have you tried baked chips or vegetable chips. Much lower in fat, or even high fiber breadsticks. I don't watch football just because I don't understand the concept of the game. I tried working out with Taebo but the cd has a crack in it. That's the library copy, I didn't put it there. So I did some old karate moves instead for 30 minutes <bryefield@...> wrote: I pigged out on chips and dip but worked out during half time. Pinched my belly on my new ball LOL - I have an almost 19 yo daughter who did the ball 3x a week in gym last year - so when she wasn't laughing at me she was trying to teach me the right way to use it Used some weights, cords and played for a few minutes with the jackie chan piece of eqipment I bought 2 years ago and

never used. 15 minutes on the bike - during all the excitment so I ws pumping LOL Neal <walking2health@...> wrote: Hope Everyone is having a great Football Sunday!! Let's not forget to get out there and get active!Live, Love, Laugh

- Helps protect you from nasty viruses.