Helen

[Guest guest]

I'm so glad that he is starting to feel the effects of the Remicade, the

reaction must have been a little scarey. I was actually getting my 3rd infusion

on Friday also and couldn't help but sit there and think about Nicky getting

his too. You guys are always in my thoughts and prayers!

Lots of Love

(JAS, 20)

[Guest guest]

-hey Becki...

How sweet to remember Nicks infusion on friday... he did ok, this one

affected him more than the 1st, but the nurse said the 2nd infusion is

the one that they usually react to if they are going to react...

Nick was full of beans and jokes going in, it was the same nurse who

rescued nurse #1 ( who couldnt get the iv in ) the 1st time around.

She got it in 1st try.

Nick being the old pro he is, was telling her what to set the pump to

and then reminded her when 15 mins was over so they could up the

speed. About 45 mins into it Nick got very quiet and said he had a

headache. Not bad, but still a headache, he got a little pink in the

cheeks for a while too... they slowed down the rate at which they

inceased and left it at one speed for 30 mins instead of 15. He was

very quiet and subdued for the remainder of the infusion but once we

got home he perked right back up....

I have to share that Nick has not complained of any joint pain for

nearly 2 weeks ( about 4 days after the 1st infusion) hes getting out

of bed and is not stiff in the mornings and hes NOT sitting down at

the end of the driveway waiting for the bus!!! O... im not

getting overly excited, but its still an inprovement. ))))

On a side note we are off to see the geneticist this afternoon. They

orginally told me it would be spring 06 before they could see Nick,

but they called last thursday and have an opening at 12.20 today...So

we go back to where we spent most of last friday. Of course Nick is

unhappy to be missing halloween at school, but ill make it up to him..

hugs Helen and (8,systemic)

-- In , Arthurnator@w... wrote:

>

> Helen,

> Nick update on Fridays Remicade please.

> Hope the IV insertion was a one pop deal this time.

> Love

> Becki and 7 systemic

>

>

>

[Guest guest]

Glad to hear that Nick is feeling better in the mornings. Sorry to hear

about his Halloween but how wonderful that you got into the dr. Let us

know how the appt goes, Michele ( 18, spondy)

Re: Helen

-hey Becki...

How sweet to remember Nicks infusion on friday... he did ok, this one

affected him more than the 1st, but the nurse said the 2nd infusion is

the one that they usually react to if they are going to react...

Nick was full of beans and jokes going in, it was the same nurse who

rescued nurse #1 ( who couldnt get the iv in ) the 1st time around.

She got it in 1st try.

Nick being the old pro he is, was telling her what to set the pump to

and then reminded her when 15 mins was over so they could up the

speed. About 45 mins into it Nick got very quiet and said he had a

headache. Not bad, but still a headache, he got a little pink in the

cheeks for a while too... they slowed down the rate at which they

inceased and left it at one speed for 30 mins instead of 15. He was

very quiet and subdued for the remainder of the infusion but once we

got home he perked right back up....

I have to share that Nick has not complained of any joint pain for

nearly 2 weeks ( about 4 days after the 1st infusion) hes getting out

of bed and is not stiff in the mornings and hes NOT sitting down at

the end of the driveway waiting for the bus!!! O... im not

getting overly excited, but its still an inprovement. ))))

On a side note we are off to see the geneticist this afternoon. They

orginally told me it would be spring 06 before they could see Nick,

but they called last thursday and have an opening at 12.20 today...So

we go back to where we spent most of last friday. Of course Nick is

unhappy to be missing halloween at school, but ill make it up to him..

hugs Helen and (8,systemic)

-- In , Arthurnator@w... wrote:

>

> Helen,

> Nick update on Fridays Remicade please.

> Hope the IV insertion was a one pop deal this time.

> Love

> Becki and 7 systemic

>

>

>

[Guest guest]

Georgina,

Yep,he sat right down told her what vein and that he wanted to watch the

needle go in.

He started enjoying labs at around 5 and now gets excited when it's time and

he's never used Emla for them.When I picked up his labs there was no SED and

begged to give more blood.

Hugs

Becki and 7 systemic

[Guest guest]

Hi Becki,

Did sit all by himself, with just his Boo Boo Bear, when it was time

for his labs? That's incredible, Becki. At his age, Josh was still wanting

to sit on my lap every time : )

Aloha,

Georgina

Re: Re: Helen

Helen,

I'm so glad they got him on one try and can only imagine how freaked he

was

last time with blood everywhere.

Hopefuly in the future infusions he won't have any kind of reaction and I

wonder if towards the end and him being quiet might have been the Benadryl

making

him a bit groggy.

That is great that he's not stiff in the morning and not sitting at the

end

of the drive waiting for the bus.I've heard Remicade works quickly so

everything is crossed that this does the trick.

I'm sure you are nervous about seeing the genetic dr but I am glad they

are

able to get him in today.

I know you won't get any definate answers today but let us know if they

have

any ideas.

Give him a hug from us because most likely he will have to have blood

drawn

and unless he has another vein he's probably still a bit sore from Friday.

Speaking of which I need to wash boo boo bear because we are about 2 weeks

late in getting labs and wants to sit by himself today.He's only

done it

once and I keep expecting him to not let me in the room.

Love and hugs

Becki and david 7 systemic

PS)I hope Nick can walk and walk tonite and not have any after effects and

wake up in the morning like a little boy should.

[Guest guest]

Hi,

What a brave little guy!!! : )

Aloha,

Georgina

Re: Re: Helen

Georgina,

Yep,he sat right down told her what vein and that he wanted to watch the

needle go in.

He started enjoying labs at around 5 and now gets excited when it's time and

he's never used Emla for them.When I picked up his labs there was no SED and

begged to give more blood.

Hugs

Becki and 7 systemic

[Guest guest]

i think it is so horrible when families act like this. we have our own story to. it is just a shame. evelyn & Te're Melrose <zaid6@...> wrote: Ohhh I can so relate to your little story on thanksgiving; leading to not being the one the 'family' wanted your husband to marry. I have no family of my own and my husband has a family who hate me. They were dysfunctional before I came along but man, they are mean and mixed up people. We have a lot of distance from them now and I get a bit tense near each xmas because thats about the only day I have to deal with them. This year we are having a little xmas of our own because I really want some space. They have no young kids now there is only our son (5) and it's boring for him as he doesn't know them but they all

smother him and say come to aunty deb and so on and he doesn't like or know them - I won't make him kiss people or hug them unless he WANTS to which I think they might find offensive!!! Its a very long complicated story why they don't like me but the basics is that I took their 'baby' brother away from t hem (the evil sisters) who use to be at their bec and call for everything. He spent years dotting on their children and they don't give my son any decent love or attention. I hate them. You sound like you have put it behind you, well done. Still struggling there. We have been married several years now and the problems surfaced before we married.Ted x~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have

found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ ***

~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Tealk

I've been eating virgin coconut oil for about three years, well after I

brought EB and CMV under control with officinalis tincture.

However, I am considering getting some Lauricidin instead.

_http://www.lauricidin.com/default.asp_

(http://www.lauricidin.com/default.asp)

mjh

In a message dated 12/31/2005 12:11:26 AM Eastern Standard Time,

48tealk17@... writes:

hi helen,

i know you have tried alot of stuff ... olive leaf extraxt : 500 mg

capsules helped alot and herxed at when i hit 1500mg ( 500 mg 3x day )

also hydrogen peroixde ivs helped lower my hhv6 but rough treatment for my

viens years ago

coconut oil helps .. tealk

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi mjh

Lauricidin is good but I have a feeling the results are the same as coconut

oil - however lauricidin is easier to take as a supp.

Regards

Cs

[Guest guest]

Hi

3 things to take separtely are :

1) Whey Protein Isolate for long persiod of time to raise your Glutathione

2) Then Try latoferrin as a sepearte supplement

3) Then add Coconut oil

Regards

CS

[Guest guest]

hi helen,

i know you have tried alot of stuff ... olive leaf extraxt : 500 mg

capsules helped alot and herxed at when i hit 1500mg ( 500 mg 3x day )

also hydrogen peroixde ivs helped lower my hhv6 but rough treatment for my

viens years ago

coconut oil helps .. tealk

> [Original Message]

> From: heleneshapland <heleneshapland@...>

> < >

> Date: 12/30/2005 6:33:24 PM

> Subject: Re: Any success with Dr 's Zapper for

EBV?

>

> I've been taking ImmunoPro whey protein for glutathione and for my

> immune system for 6 months. This has lactoferrin in it. This has not

> helped at all to get my viral load down or made any of my CFIDS

> symptoms better.

>

> Thanks for the advice though.

>

>

> >

> >

> > Look into lactoferrin - its efective againts parasites and viral isues.

> >

> > I have a gut feeling that the zapper may stir things up too much!

> >

> > Regards

> > CS

> >

> >

> >

> >

[Guest guest]

Yes, I've tried lots of stuff to get rid of the EBV. I did try olive

leaf extract for a year at 1500mg (500 mg 3 X per day), then I went on

a maintenance dose of 500mg one time per day for this past year.

Supposedly olive leaf at least keeps viruses from replicating. I never

herxed and I never felt any better and my viral load has never

decreased. This virus is stubborn.

But I hope to be more stubborn than it and eventually find something

to conquer it.

Thanks for your advice,

-h

> > >

> > >

> > > Look into lactoferrin - its efective againts parasites and viral

isues.

> > >

> > > I have a gut feeling that the zapper may stir things up too much!

> > >

> > > Regards

> > > CS

> > >

> > >

> > >

> > >

[Guest guest]

In a message dated 12/31/2005 1:45:05 P.M. Pacific Standard Time,

heleneshapland@... writes:

> >

> > I've been taking ImmunoPro whey protein for glutathione and for my

> > immune system for 6 months. This has lactoferrin in it. This has not

> > helped at all to get my viral load down or made any of my CFIDS

> > symptoms better.

> >

> > Thanks for the advice though.

Dr Enlander recommends Immunoprop not to confused with immunoPro

Immunoprop contains more l-cystine and glutathione

Joy

Research Assistant to Dr Enlander

_www.enlander.com_ (http://www.enlander.com)

[Guest guest]

Hi! Thanks so much for posting that info! I'm printing some of it off now for my mom and my friend. Yeah, my family has been through quite a lot through the years on and off. I'm 22, things kinda started in my family when I was in about 6th grade so we've dealt with a lot of hospitals, doctors and of course waiting rooms. lol It is a lot to deal with, I did have to go into counseling for a while because I got really, really depressed dealing with everything. I still have depression, but nothing like it was, I'm dealing with it a lot better. I know my mom is taking a couple different pills, but I don't know the names of them. I should know them too, I gotta write them down so I can keep the list with me. Yeah, thats what I think happened too, she was doing so well for such a long time and then had a relapse. She is doing a little better now, we try to let her get as much rest as she can before she goes to work and that helps. Or even if she just kinda

lays around not doing anything, sometimes you just have to do that too. lol The doctor she has now is really good and she likes her a lot. There were a couple who told her in the first place that what she had might be psychological and we knew they were wrong. She definitely got away from them after that, but after a while she definitely started to believe it. I hate that some doctors say that just because they can't find out whats wrong, it doesn't mean there isn't anything there. My mom told us she knew something was not right, she felt it and we all seen what she went through so we knew there was something wrong. Thank God for the good doctors out there! Since my mom has been going to this one, she has felt a lot better about going to see a doctor now so thats a relief to us too because we know she can't be without her meds anymore. A part of the reason she quit going to the doctor was because its expensive with her and my dad going to

the doctor & getting medications, we couldn't afford it. But this doctor really helps out, instead of having my mom get some medications from the pharmacy, she gives her samples so she won't have to pay for them which I thought was so nice. It took us all a long time to realize that all the doctors weren't bad, its just that we just kinda found the wrong ones at first. lol How are you doing? I feel so bad i keep going on and on, but my gosh you've certainly had a lot to deal with as well. Abby

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

-Hi Patty,

Nick is doing MUCH better. The 5 days of 40mg pred worked wonders. Hes

now on 2mg, we were down to 1mg but we will do 2 for now. He had his

appt yesterday and his remicade. We have doubled is remicade dose up

to 10mg/kilo and will shorten the intervals between infusions, but im

not sure right now how often we will do them, either 4 or 6 weeks (

down from the 8 weeks)

After his remicade we had a OT consult. I just got the report in the

mail and i notice ALL his ROM in shoulders/elbow/wrists and fingers

are less than the normal. I did have to laugh when the ones in his

hypermobile joints dont start at " 0 " but at numbers like -10. We have

lots of exersies to do with his hands, a wrist splint to see if it

helps him when he is writing, putty to work is hands and fingers with

etc.

It was a long day..

Thanks for asking after him....

hugs Helen and (8,systemic)

-- In , ThreeMayEmeralds@... wrote:

>

> Hi Helen:

>

> How is Mr. Nick doing?

>

> Take care.

> Patty

>

>

>

[Guest guest]

In a message dated 3/4/2006 6:07:46 P.M. Eastern Standard Time,

hburger64@... writes:

Nick is doing MUCH better. The 5 days of 40mg pred worked wonders. Hes

now on 2mg, we were down to 1mg but we will do 2 for now. He had his

Glad to hear Nick is doing better:) Hope the Prednisone keeps on coming

down.

Take care.

Patty

[Guest guest]

--,

Sorry to take so long to get back to you. Nick is doing better. LAst

week was spring break and it came at a perfect time. Nickw as able

to sleep in as long as he wanted and just veg around the house for a

week. His knees are doing better and hes pretty chirpy and happy

this week.

Tomorrow is appt.and remicade day.........

hugs Helen and (8,systemic)

- In , " sonia1md " <sonia1md@...> wrote:

>

> Hi Helen,

>

> How is Nick doing this week. Is he on spring break and able to get

> plenty of rest? Hoping things are going better!

>

> (Aundrea 10 systemic jra)

>

[Guest guest]

Helen,

Picking this one up from 's post.

Relefan is very closely related to the Indo but with less side effects.I have

an ongoing script for it due to the unknown cause of bad transient pain and

sometimes lost ROM.As with all NSAIDS it does take a few weeks to realy kick in

but when I'm starting a flare up it sure does help after a while.Honestly

though I wish I owened abround 6 heating pads.

I hope it helps Nick and just curious as to what his dose is?

Love and hugs

Becki and 7 systemic

[Guest guest]

Helen:

Thanks so much for updating on Nick. I've been wondering. I also forgot

to ask, when is he due for a followup on his heart? And what did you find

out about the rest of the boys??

I hate to hear that soccer and dance are hard on him. Rob was becoming an

awesome soccer player when the arthritis hit. He ended up having to quit

and hasn't played since. I miss those days of cheering him on...

Rob loves to swim, too. Remember Uncle Rusty, at one point, nicknamed him

'dolphin boy'....

Tell Nick I got to swim with dolphins when we went on our cruise in

March, in Mexico. It was totally awesome! When Rob was very ill, I wrote

to Sea World to see if they could do anything about the price ($350) for

their Discovery Cove adventure, and they never wrote back. On the cruise

ship, it was much cheaper, only $150 each. But Rob wasn't with us on the

cruise (guilty mama talking here)...in the 17 years since we've had Rob,

we've never gone on a vacation alone. But I'm rambling!

I hate to tell you this, but I won't be going to Atlanta. We've got so

much going on this summer, Rob isn't interested in going again, and

may be in the midst of starting a new job (hopefully). I would so love to

meet you, too! And of course, Nick and .

I hope that the Relafen is just the ticket for Nick.

Take care,

and Rob 17 Spondy

On Sat, 03 Jun 2006 02:11:55 -0000 " hburger64 " <hburger64@...>

writes:

-Hey ,

I am actually kind of glad we are trying something new. Nick has

been " moody " but that always seems to relate to the 5th week since

remicade was last done. Now that we have managed to get the

infusions at 4 week intervals I am hoping he doesn't struggle.

He does seem to get headaches every once in awhile. I have no idea

whats normal and whats too many. I hate to always relate everything

that goes on with to his JRA or his meds. But you never

know. But I have wondered about the prednisone tapering and mood

swings.

I'm going to stop giving him the remainder of the indomethacin and

start on the relafen tomorrow AM. He has his appt next friday with

the rhuemy and then his remicade to follow. It will be good to do a

week of relafen before seeing the doctor just in case it's not

working well and we need to try something else.

Nick is doing good, although today hes complaining of his knees.

Soccer and dance have been tough for him this month. I'm not sure

hes enjoying either anymore, but we will finish out both and see

what next season brings. In soccer the only position Nick wants to

play is goalie ( so he can just stand there instead of running

around) Dance is ok, but they are doing a lot of stuff that is just

not good for joint protection, like falling forward onto your hands

and jumping from side to side on your hands. But they are done with

classes, just have the practice and recitals next weekend. Soccer

has 4 more weeks to go.

Nick has been going in the pool everynight when he gets home from

school. He's his happiest when he's in the water He adores dolphins

and wants to become a dolphin trainer when he grows up. Hes dying to

go swim with the dolphins. One day I hope we can make his dream come

true.

looking forward to finally meeting you in Atlanta!!!!!

hugs Helen and (8,systemic)

-- In , snooksmama@... wrote:

>

> Helen:

> Something just clicked when you said Nick was on indomethacin.

Were you

> worried about mood changes a while back? If he was on the

indomethacin

> then, it can cause mood changes as well as headaches. Rob was on

it only

> briefly and it didn't do him a lot of good. Of course, now he

cannot take

> any NSAIDS at all because of the kidney disease.

> Just thought I would chime in about what we were told to look for

as

> possible side effects.

> How's Nick doing lately?? I've been woefully behind on posts.

> and Rob 17 Spondy

>

> On Fri, 02 Jun 2006 13:24:15 -0000 " hburger64 " <hburger64@...>

> writes:

> Has anyone else heard of a shortage of Indomethacin 25mg

capsules???

>

> I guess they are on back order from the manufacturers long term.

>

> So now we are waiting to hear back from the rheumy to find out

what

> they decide should be Nicks new NSAID.

>

> We have done naprosyn, vioxx, mobic and now indomethacin, wonder

whats

> next on the menu!

>

> Is this affecting anyone else???

>

> hugs Helen and (8,systemic)

>

>

>

>

>

>

>

>

>

[Guest guest]

--WHAAAA, I was so hoping to meet up with you this year ( major

bummer.

Nick is not due for his heart follow up until Oct. His cardiologist

wants to compare his aortic root echos a year apart. I am hoping and

praying that there will be no further dilation. I have been doing so

much research online that my head is swimmming. I cant help but

worry we have missed something. His genetsist doesnt want to see him

for 3 years, but if theres changes on this next echo I will be sure

to follow up with her too as I need answers and will not accept " he

has signs and symptoms compatabile with a connective tissue disorder "

So far I have only managed to get one kid in for an echo. ,

14 as he has a lot of the signs of marfans. Thankfully his echo was

good and we were unable to follow up with the genetist as he came

down with strep the morning of the appt and we ended up at the peds

clinic instead.

I have been lax in taking the other boys and will try to get that

done this summer. Its just too hard with appts during the day when

im suppose to be sleeping. Now that school will be out this week I

will have more flexability with scheduling.

Well this got longer than i wanted )) I'm begining to sound like

Val, I best stop!! ))))

hugs Helen and (8,systemic)

- In , snooksmama@... wrote:

>

> Helen:

> Thanks so much for updating on Nick. I've been wondering. I also

forgot

> to ask, when is he due for a followup on his heart? And what did

you find

> out about the rest of the boys??

> I hate to hear that soccer and dance are hard on him. Rob was

becoming an

> awesome soccer player when the arthritis hit. He ended up having

to quit

> and hasn't played since. I miss those days of cheering him on...

> Rob loves to swim, too. Remember Uncle Rusty, at one point,

nicknamed him

> 'dolphin boy'....

> Tell Nick I got to swim with dolphins when we went on our cruise in

> March, in Mexico. It was totally awesome! When Rob was very ill, I

wrote

> to Sea World to see if they could do anything about the price

($350) for

> their Discovery Cove adventure, and they never wrote back. On the

cruise

> ship, it was much cheaper, only $150 each. But Rob wasn't with us

on the

> cruise (guilty mama talking here)...in the 17 years since we've

had Rob,

> we've never gone on a vacation alone. But I'm rambling!

> I hate to tell you this, but I won't be going to Atlanta. We've

got so

> much going on this summer, Rob isn't interested in going again,

and

> may be in the midst of starting a new job (hopefully). I would so

love to

> meet you, too! And of course, Nick and .

> I hope that the Relafen is just the ticket for Nick.

> Take care,

> and Rob 17 Spondy

>

> On Sat, 03 Jun 2006 02:11:55 -0000 " hburger64 " <hburger64@...>

> writes:

> -Hey ,

>

> I am actually kind of glad we are trying something new. Nick has

> been " moody " but that always seems to relate to the 5th week since

> remicade was last done. Now that we have managed to get the

> infusions at 4 week intervals I am hoping he doesn't struggle.

>

> He does seem to get headaches every once in awhile. I have no idea

> whats normal and whats too many. I hate to always relate

everything

> that goes on with to his JRA or his meds. But you never

> know. But I have wondered about the prednisone tapering and mood

> swings.

>

> I'm going to stop giving him the remainder of the indomethacin and

> start on the relafen tomorrow AM. He has his appt next friday with

> the rhuemy and then his remicade to follow. It will be good to do

a

> week of relafen before seeing the doctor just in case it's not

> working well and we need to try something else.

>

> Nick is doing good, although today hes complaining of his knees.

> Soccer and dance have been tough for him this month. I'm not sure

> hes enjoying either anymore, but we will finish out both and see

> what next season brings. In soccer the only position Nick wants to

> play is goalie ( so he can just stand there instead of running

> around) Dance is ok, but they are doing a lot of stuff that is

just

> not good for joint protection, like falling forward onto your

hands

> and jumping from side to side on your hands. But they are done

with

> classes, just have the practice and recitals next weekend. Soccer

> has 4 more weeks to go.

>

> Nick has been going in the pool everynight when he gets home from

> school. He's his happiest when he's in the water He adores

dolphins

> and wants to become a dolphin trainer when he grows up. Hes dying

to

> go swim with the dolphins. One day I hope we can make his dream

come

> true.

>

> looking forward to finally meeting you in Atlanta!!!!!

>

> hugs Helen and (8,systemic)

>

>

>

> -- In , snooksmama@ wrote:

> >

> > Helen:

> > Something just clicked when you said Nick was on indomethacin.

> Were you

> > worried about mood changes a while back? If he was on the

> indomethacin

> > then, it can cause mood changes as well as headaches. Rob was on

> it only

> > briefly and it didn't do him a lot of good. Of course, now he

> cannot take

> > any NSAIDS at all because of the kidney disease.

> > Just thought I would chime in about what we were told to look

for

> as

> > possible side effects.

> > How's Nick doing lately?? I've been woefully behind on posts.

> > and Rob 17 Spondy

> >

> > On Fri, 02 Jun 2006 13:24:15 -0000 " hburger64 " <hburger64@>

> > writes:

> > Has anyone else heard of a shortage of Indomethacin 25mg

> capsules???

> >

> > I guess they are on back order from the manufacturers long term.

> >

> > So now we are waiting to hear back from the rheumy to find out

> what

> > they decide should be Nicks new NSAID.

> >

> > We have done naprosyn, vioxx, mobic and now indomethacin, wonder

> whats

> > next on the menu!

> >

> > Is this affecting anyone else???

> >

> > hugs Helen and (8,systemic)

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

-Hi ,

No problem, it was nice talking to Drea. Shes a lot of fun!!

How is she feeling now??

hugs Helen and (9,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Hey Helen,

>

> I saw that Aundrea was on her messenger with you the other day. That

> was sweet of you to take time to chat with her. I am sure you were

> busy running around after your own kids. She is at the age where

she

> loves to talk on the phone with her girlfriends for hours about

> absolutely nothing...Since they are all in school and her throat

hurts

> to bad to talk she has now moved on to " chatting " on the computer

> whenever she can find a (parent approved) captive audience! :-)

>

> (Aundrea 11 systemic jra)

>

[Guest guest]

Hi Helen,

I let Drea sleep in this morning and she woke up still feeling

lousy. But after a couple of hours the pain lifted and her throat

was much improved. She said her joints were just achey but no

pain. She was so hyper! When she is hurting she can become so

quiet and lethargic...But, boy when that pain is gone she is almost

euphoric! I took her to school at around 1:00 so she will just be

there for a couple hours. Hopefully, she continues to do well thru-

out the remainder of the day.

(Aundrea 11 systemic jra)

> >

> > Hey Helen,

> >

> > I saw that Aundrea was on her messenger with you the other day.

That

> > was sweet of you to take time to chat with her. I am sure you

were

> > busy running around after your own kids. She is at the age

where

> she

> > loves to talk on the phone with her girlfriends for hours about

> > absolutely nothing...Since they are all in school and her throat

> hurts

> > to bad to talk she has now moved on to " chatting " on the

computer

> > whenever she can find a (parent approved) captive audience! :-)

> >

> > (Aundrea 11 systemic jra)

> >

>

[Guest guest]

-Im glad Drea was able to go to school, even if it was just for a

few hours. Hopefully she continues to improve and can put this flare

behind her.

hugs Helen and (9,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Hi Helen,

>

> I let Drea sleep in this morning and she woke up still feeling

> lousy. But after a couple of hours the pain lifted and her throat

> was much improved. She said her joints were just achey but no

> pain. She was so hyper! When she is hurting she can become so

> quiet and lethargic...But, boy when that pain is gone she is

almost

> euphoric! I took her to school at around 1:00 so she will just be

> there for a couple hours. Hopefully, she continues to do well

thru-

> out the remainder of the day.

>

> (Aundrea 11 systemic jra)

>

>

>

> > >

> > > Hey Helen,

> > >

> > > I saw that Aundrea was on her messenger with you the other

day.

> That

> > > was sweet of you to take time to chat with her. I am sure you

> were

> > > busy running around after your own kids. She is at the age

> where

> > she

> > > loves to talk on the phone with her girlfriends for hours

about

> > > absolutely nothing...Since they are all in school and her

throat

> > hurts

> > > to bad to talk she has now moved on to " chatting " on the

> computer

> > > whenever she can find a (parent approved) captive audience! :-)

> > >

> > > (Aundrea 11 systemic jra)

> > >

> >

>

[Guest guest]

Thanks Helen! We think he's pretty special...

Finally got the written report from the cardiologist...he didn't tell me

that Rob also has the beginnings of subaortic stenosis in addition to the

mitral regurgitation. This is commonly seen in older ankylosing

spondylitis patients.

Can you tell me again about what they found on Nick's echo? Was it aortic

stenosis??

and Rob 17 Spondy

On Tue, 12 Sep 2006 00:22:34 -0000 " hburger64 " <hburger64@...>

writes:

-Those are awesome pictures ....I'm sure you are very happy with

them.

hugs Helen and (9,systemic)

-- In , snooksmama@... wrote:

>

> There are 2 more of Rob's senior pictures now on the photo page

(under

> Schulz' album).

> Thanks Georgina for approving them!

> and Rob 17 Spondy

>

[Guest guest]

--,

Nicks echo shows a dilation of the Aortic root, so the opposite of

Robs problem? as a subaortic stenosis is a narrowing of the left

ventricle just below the aortic value ( i just read what it meant)

We will find out if theres been any further dilation Oct/nov when I

set up his yearly follow up.

Did the doctor say anymore about it, follow up, cause etc??

hugs Helen and (9,systemic)

- In , snooksmama@... wrote:

>

> Thanks Helen! We think he's pretty special...

> Finally got the written report from the cardiologist...he didn't

tell me

> that Rob also has the beginnings of subaortic stenosis in addition

to the

> mitral regurgitation. This is commonly seen in older ankylosing

> spondylitis patients.

> Can you tell me again about what they found on Nick's echo? Was it

aortic

> stenosis??

> and Rob 17 Spondy

>

> On Tue, 12 Sep 2006 00:22:34 -0000 " hburger64 " <hburger64@...>

> writes:

> -Those are awesome pictures ....I'm sure you are very happy

with

> them.

>

> hugs Helen and (9,systemic)

>

> -- In , snooksmama@ wrote:

> >

> > There are 2 more of Rob's senior pictures now on the photo page

> (under

> > Schulz' album).

> > Thanks Georgina for approving them!

> > and Rob 17 Spondy

> >

>

>

>

>

>

>

>

>