Public Service: Who is still missing?

I sent an e-mail to about 25-30 people, so now we have to wait to see what happens.I gave them the new address to get here and explained all of what has happend.

Gene is on our new member list.

Gene and Marc Muirhead have been active on the UK site.

You sound almost like a mayor, Lee… 😀

I don’t have anyone’s email… I did all my e-mailing throught the site… Does anyone have Bluangel’s or Cliff’s..???

Aimee

I’ll post the list that I sent e-mails to with the correct way to get in here.

Jim from Colorado
Kat
Larry(Lea)
Linda(Limoga)
Mary(Badmommy)
Mindy(MinJane)
MKZEE(Liz)
Myrt
Pam(Haut)
Pep
Randy and Barbara
Roxie
Sue(Suezee)
Blondie
Bludog
Brooke
Oma(Sue)
Bizzle(Carol)
Dan Murphy
Byron Comp
Dawn~Lynn
Donna Lee Berry (Our own author Savannah)
Summer(Ellen)
Greg Giddings
Eric Vance -but it came back, he has a new e-addy
Marguerite(Marge)
Teresa Anne(TA)

That’s what I have in my address book.

Hello,
I have an old email for angelwings, I’ll try to send and see if it still works. I have a list of about 100 members from the bracelet sales and I’ve started to email them, but my hands don’t work well, which makes typing very difficult and tireing for me, finger is already buckling. If I type out a list on this thread on a “good” hand day, can someone send the emails to them.
I’ve been worried about a new member named Jody. Last I heard from her, she wasn’t doing well, hubby was in military and was shipping out.
Does anyone have an email for ONE EYED GEORGE, he might want to come back.

Liz,

Check my list before doing your e-mail this way you won’t be typing more then you should.

Liz if you can type a quick note saying the U.S forum is back and then just add the names by clicking +Address in Netscape or in Hotmail you can just click TO and the address book pops up and keep click the names you want to add. Mass mailling so everyone gets the same message.

Sue
With CIDP

There is another forum someone started on his own some time ago. Fireman Dave was on there. I don’t have the address anymore. Maybe someone else could help and post the news there. I seem to remember seeing you, Brandy, on that forum!

I posted a SHOUT on Heaths’ Forum and Pam’s Forum so people who visited there would know.

Sue

Hi Again,
These are the ones that I’ve notified so far, with proper instructions to access forums.
Limekat
Vikki
Tequina
Emily Biegel
I don’t think it’s a good idea to post emails here because some members may want to keep that confidential. I’ll rest in-between and my fingers will just have to do the work.
I can’t do what you suggested Sue, don’t have netscape or hotmail.
Do you think it would work if I used an ecard site and sent to multiple addresses???

Just a few more off the top of my head

John Fitzen (jfitzen)
Bill Niles(skipro)
Steven ham (morrada)
Ben and Shannon
Stephanie Wein

When i sent out the ribbons, I had sooo many addresses. Unfortunately I vaguely remember asking my daughter to shred them after a while because I thought it would be best. I have looked everywhere just in case that was not the case, but I cant find them.

Hi!

Thanks to Brandy for letting me know about what has happened to our wonderful forums. I can’t begin to list the many ways the forum and the wonderful members helped me when I needed it most.

For those of you who don’t know me. I am Brooke (known as Brookie to others). I live in Australia and I had CIDP for over 10 years. Late in 2004 my Neurologist felt that I had gone into remission. So far all has been great.

I stopped IVIg infusions last August and I’ve just reduced my Azathioprine to one tablet. I have had no signs what-so-ever of weakness etc.

For me this is a miracle as I was in really bad shape numerous of times and my diagnosis took AGES. So for anyone out there who is thinking that things may never get any better I’m an example that it can happen.

I’m not on the computer and internet much anymore. I used to live on it because of the fantastic friendships and support I needed at the time was available here. Now I find that I’m too busy to be on the net often.

I’m now volunteering at a hospital in the city of Ballarat. I’m doing ward support which involves doing anything for the patients that they may want. This is mainly things that the nursing staff are too busy to do. Other times patients just want to chat. Due to my experiences I think I am perfect for the job. :p

Ok I’ve bored you all enough. Best wishes to everyone and I’ll try to drop in as often as I can.

Love & Hugs,
Brooke

[COLOR=red]Hi all[/COLOR]
[COLOR=#ff0000][/COLOR]
[COLOR=#ff0000]I am glad to be back hope I don’t get booted again!:eek: [/COLOR]

Lee,

I sent Sue an e-mail about getting into the new place. I posted my list of who I sent to this afternoon.

Brookie,

Welcome back from Down Under. How’s Chloe and Steve?:) I am also so glad to hear that you are doing better my friend. This is great news to hear.

You might have to sign in as a new user. My old user/password would not work.

Love the new software, but hate the fact that a hack took the old system down for so long!

I don’t have an email for him, but Dick S joined the UK group recently, so I’ll go back there and see if I can PM or email.

Angel2ndclass (cheryl) is also on the UK site. I was sure she’d see the message posted that USA is back, but will go there and also PM or email her from there.

I have Shannon’s (Ben) email and will send out to her ASAP.

I had almost given up on this site!

I like the new layout, but does this mean all of our old posts are gone? 🙁

Nice to see so many familiar faces ……. er …. usernames! 😮

this is my 1st time on this site, its quite complicated, also my 1st time using internet, kids made me do it, i got gbs in 2004, had job lot, am now making a slow but good recovery, hopefully. i’ve renamed it pain in the butt sydrome, it seems to put people at ease who has never heard of gbs. anyway hope you get this. bye.

Well Hello to all!!!

Man is it good to be back….I have missed so many of you…..just wanted to pop in and say hello….

See ya around the forums……no where is that Tavern…..need to buy around and toast the return of the forum….

Morrada,
THE TAVERN moved across the big pond to the UK site and it’s being visited by many. The Tavern was named The Turtle and the Bear. Once we help our brand new newbies and find all our members, open a new tavern.

Shell:

Welcome to the site – once things settle down around here with everyone getting back on-line you will find it to be very helpful for information and support. Glad you are here!

Brookie,

It is wonderful to see a post from you. Can’t wait to hear how Chloe is doing. What are you reading?

I’m so proud of you…the job is so very vital for patient morale.

Lots of hugs,
Marge

I have sent out emails to all of these members, some of them were newbies.
BARRY
CATHYCRENSHAW (here as cathyrebecca)
ANGELA ADDISON (newbie)
COFFEECUPSUE
DAVID AND ANN
DEBBYSUE (newbie)
DONMO
SUSAN HUNT (new)
JSENN
LEATHERZZ1 (newbie)
ANOTHER1 (newbie)
MARTIE (newbiw)
MIKE C
MARGE McPEAKE (newbie)
PATTIE McSHERRY (newbie)
ANGEL2ndCLASS (Cheryl)
DICK S
BOBBYTESSLER
BONNIELEA
MSKAYEC
I still have more to send out.

I’ve sent an email to Bludog.

Regards,
Marge

chefkaren is still missing, she has CIDP. Will try and contact her.
Badmommy is also missing

We are glad that you came to visit us, although we are sorry for the condition that you have that necessitated it… I have CIDP and it seems a rather mild version of it… I have not had to take any treatments and am still in remission… I have some residual conditions…fatigue, sensitive fingers, and some muscle spasms happen occasionally… The pins and needles in my hands have about disappeared except when I use my hands too much… I also am not able to stand in one place for more than a minute or two… Walking does not bother me except that I walk stiffly and have some difficulty with balance… I use my cane except when I am at home or in my classroom (I am a special education teacher) where I feel secure in having something to steady me nearby…

Must quit typing now… Hope to see you post again…

Aimee
(CIDP diagnosed 8/24/05)

I just found a whole bunch more e-mails, I’ll send out the troops tomorrow to round them up. I didn’t just sound like John Wayne did I?:D

I’m old and tired. Good night all.

I’ve sent an email to my entire mailing list…including the two New York senators and a man from Crawford, Texas. One never knows.

Regards,
Marge

You guys are really impressive !!

I just wanted to let you know that I have found my way back, and I am looking for a good story to “role play” in.

We could write our own “Alice in Wonderland”, or “Malice in residual-land”. Whatever, I am up for it.

Dick S

Hi everyone,

I just wanted you to know that I am back.

Lee, thanks for the email.

hugs, ellen:p [FONT=”Fixedsys”][/FONT]

Does anyone have Doc Bod’s email we sure need him back here with his professional advise. I have a website for Eric Vance and will try to let him know he is another expert that we need.
LEA

Well so much for that idea Eric’s website don’t work???
LEA

Hi Lee.

DocDavid’s been in hospital the past few weeks, so he’s been off the UK forums as well. He’s improving, and once he comes back we’ll let him know the USA is now functioning again. Anyone wanting to send him a message, there’s a thread on the UK forum at [url]http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=446095ac42daffff;act=ST;f=2;t=122[/url]
His daughter is printing out messages and taking them to him.

Deb

I’m still sending out emails from my bracelets list, I think I have about 20 more to go. I will get to everyone who’s address I have. I think Brandy sent an email to badmommy (Mary). I have Mary’s home address, so intend to send her a card with notice. I sent an email to Shannon & Ben (gemini), hope she’ll come back. Does anyone have an E for GOATGODDESS or Suziporshe (the one in Spain, oldie member)?? I’m going to send an email to Kassandra. Pam said One Eyed George is in Cleavand, Oh. area, and as an Ohio liesison (sp?) maybe she can help find him.
I’m worried about angel2ndclass (cheryl) sent an E, hope she’ll respond.
I have an old email for Dawn Lynn, but also have her home address, will contact her and I also have an old email for angelwings, will try that, but also have her home addy, will contact her.

I NEED A SECRETARY!!!!

Liz,

George – OneEyeGeo – has registered again and has already posted. He doesnt sound as if he is doing too well though, wish we knew someone who lived near to him who could go check him out somehow.

liz,

suziporshe has moved back to england. i may have her e addy on my desktop. i’ll look when i get there. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=Lee Spurgeon]Dear Friends:

Marc Muirhead is back but he has an alias. How cool is that? It may be that he is in the Witness Protection Program. Just a speculation, but it IS Tuesday.

Lee[/QUOTE]

Oh that’s right , today is “Tuesday Conspiracy Day.” I think you might be on to something Lee. I hope the Sopranos don’t find him.:D

I just sent out e-mail to a whole other bunch od e-addys I found.

I did found Suzyporche’s email for the UK.

Could Marc be hiding from annoyed (not annoying) women on the forums?

Cheers,
Margaret Dumont

Hi Guys,

Its so good to be back, how I have missed you all.
Thank-you Brandy for contacting me.

I have Doc David’s e-mail address. Lets pray that he is soon back with us.

Marge great to see you here posting my friend. Gene, how I have missed you, also Kassandra, Jethro and everybody else!

We are back in Wales at the moment, spending as much time as possible with the family.

Looking forward to catching up with you all.

Love
Suzy

[FONT=Georgia][SIZE=3][COLOR=plum]Ohhhhh, Marc! You can run, but you can’t hide.:cool: [/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#dda0dd][/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#dda0dd]Hugs,[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=#dda0dd]Debi[/COLOR][/SIZE][/FONT]

Welcome back Suzy. We have missed you and everyone else. All of us have been trying so hard to get in touch with people but unfortunatly we don’t have everyone’s e-mail address. Lucky we had a lot of people to contact.

How’s the UK? Are you enjoying it? Will you be going back to Spain at all?

Take care my dear friend. 🙂

[QUOTE=codystanley]I’m still sending out emails from my bracelets list, I think I have about 20 more to go. I will get to everyone who’s address I have. I think Brandy sent an email to badmommy (Mary). I have Mary’s home address, so intend to send her a card with notice. I sent an email to Shannon & Ben (gemini), hope she’ll come back. Does anyone have an E for GOATGODDESS or Suziporshe (the one in Spain, oldie member)?? I’m going to send an email to Kassandra. Pam said One Eyed George is in Cleavand, Oh. area, and as an Ohio liesison (sp?) maybe she can help find him.
I’m worried about angel2ndclass (cheryl) sent an E, hope she’ll respond.
I have an old email for Dawn Lynn, but also have her home address, will contact her and I also have an old email for angelwings, will try that, but also have her home addy, will contact her.

I NEED A SECRETARY!!!![/QUOTE]

I sent Dawn~Lynn an e-mail. Also Angel2ndclass(Cheryl), Sandeep. I sent out about 50 e-mails and none came back, so I am presuming that these e-addys are correct.

I’m baaAAAAAaaaack! 😀

lea, what’s broke on my website? i’ll try to get it fixed. i’ve been posting updates to it lately (finally).

good to be back y’all!

gimme an “R”
gimme an “I”
gimme a “T”
gimme a “U”
gimme an “X”
gimme an “A”
gimme an “N”

whatcagot? RITUXAN
louder = RITUXAN
YYYYEEEEAAAAAAA!!!!!

Y’all ain’t ready for me to be this much better! Cutting grass weekly, doing projects around the house (using power tools! :D), coaching baseball. Trying to get motivated to get rid of this extry 75 lbs.

Next Rituxan infusion 2 June 2006 and then off to Walt Disney World!

Later Y’all!

Hi Eric

Are you sure Rituxan is all you’re taking?!!

It’s great to hear you so cheerful.

From the posts I realise how much I have missed.

[QUOTE=ericvance]I’m baaAAAAAaaaack! 😀

lea, what’s broke on my website? i’ll try to get it fixed. i’ve been posting updates to it lately (finally).

good to be back y’all!

gimme an “R”
gimme an “I”
gimme a “T”
gimme a “U”
gimme an “X”
gimme an “A”
gimme an “N”

whatcagot? RITUXAN
louder = RITUXAN
YYYYEEEEAAAAAAA!!!!!

Y’all ain’t ready for me to be this much better! Cutting grass weekly, doing projects around the house (using power tools! :D), coaching baseball. Trying to get motivated to get rid of this extry 75 lbs.

Next Rituxan infusion 2 June 2006 and then off to Walt Disney World!

Give me an G
Give me an R
Give me an E
Give me an A
Give me a T

Give me an N
Give me an E
Give me a W
Give me an S

Enjoy your trip with Kaye and Ethan.

Hi,
I think I’ll post this anyhow, not to show off, but just so 2nd or 3rd emails aren’t sent out. If you think of anyone who is still missing, post their names so we can help each other find addy’s for them.
These are the last of the people that I’ve notified from my bracelet list. Some are here already.
angelwings
twinkles
BreeAnn
Cat
Linda
Mark
Joanna C
Cyndee W
Susan P
Tonya
Ron Hagan
MammaV
MaryJo
CathyB
JessieEyes
Michaelifornia
Hart
VTsullivan
Barb419
Buckeye
LoriAnn
Connie Connor
Peggy 80
David P
Kim Davis
CcCamp
Stormy
Bonney
Nails
Kassandra

This bad penny is BAAAAAACK!!!! 😀
I thought this site would never come back on the internet.
Glad I kept checking.
Now for all the catching up on all the gossip–good new–and no news.
Glad to see so many of the “family” have returned.
I’m sure I’ll have more to say later…
Take care and WELCOME BACK!!!!
ski86401… 😮

[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Navy”]Hi Everyone 😀 !!!
Thanks Donna for e-mailing me the new link, (Lee, I can not believe you forgot about me 🙁 )……I will forward it to our other friends as well. Nice to be back, the site looks great! I hope this finds all of you doing & feeling well. I am doing great, still working & getting ready to buy a new house this summer plus our son is graduating high school! Lots of good things happening. I have missed you all, I will continue to check in 😉 Take Care,
Hugs,
Dawn~Lynn[/COLOR][/SIZE][/FONT]

Your welcome Dawn. 🙂 🙂

hi gang, thanks for the emails donna and liz. i tried getting on here last sat but couldn’t and i had to go out of town for the night. then sunday i was transported to the hospital paralyzed again, but now i’m back home and online—WOOOHOOOO!!!! hope everyone is doing good!

Sorry Cheryl you had a rough time take it easy.

Sue

Hey Cheryl, missed you. Glad you finally made it to the new/old forum. People were asking about you. That trip to the hospital sounds scary. Hope you are doing OK.

Just curious. Why did you pick such a long name this time?

Hi Cheryl,
I WAS worried about you and was thinking that something was wrong. So glad to see you here now. The family is coming home. I’m still worried about Shannon (Gemini) and Jody. Emailed them both twice. Maybe I’ll snail mail them, have their addys. Even if they don’t want to re-join, being worried isn’t wrong.

I have been noticing so many names that I don’t really recognize, but which obviously belong to long time members, that I can’t but think that it is kind of nice to have just one forum (for awhile….things might become too crowded 🙂 ) so that we can get to know all of the members of gbsfi… Gosh, was THAT ever a run-on sentence… 😀

Aimee

Hi Dawn-Lynn,
Didn’t forget you. I too sent an email, but have old email and you may not have it anymore.

GET GOING WITH THOSE GIFS NOW:D

hey norb, trip wasn’t scary at all-i have this belief–no fear-it uses too much energy! i couldn’t open my eyelids so it was pretty much, just wait and see–haaaaa i made a funny! my neuro saw me and poked my eyeballs with a q-tip, then put a couple up my nose-since i didn’t react to them, i failed her test and she admitted me to the stroke unit in the hospital. strange thing, the only part of my body that i could controll was the left side of my face. so far, this has been the worse paralysis event i’ve had, shortest hospital stay though.
i added my date of feb -2, 26-day, 99-1999-the day i had my out of body experience after a nubaine injection at my drs office.

well gotta go, there have been possible tornado touch downs in my area. hopefully i will be on again later. take care.;)

Hi Cheryl,

Good to see you made it back home.:)

Aimie, I used to have Cliff’s addy. I will try to get a message to him tomorrow.

I will be seeing Ben and Shannon tonight, she has a new job so I am not sure how much she can be on here during work. I will ask her when I see her.

Jer

Hi Jerimy,
Thanks for the info that Shannon and Ben are okay, that’s all we need to know.

Now, I only have JODY to worry about. Does anyone else remember her? I was in email touch with her before our old forum went down, and the last I had heard was that she wasn’t doing well. I’ve sent her emails, but gotten no response.

Ben and Shannon….I have been racking my brains trying to remember their names and wondering where and how they are…….Use to have some good arguments with Shannon over politics…..I missed those arguments….

going to have to start some type of threads for discussions…..I bet Marc would love to tear into a debate over high gas prices and who’s to blame:rolleyes:

Morrada

Bet all of us would like to debate the high cost of gas, along with the invasion of our privacy by the government, with wire tapping and checking up on e-mails,etc.

I’ll let Marc do the debating since he’s so good at it.:)

Thank you sooooo very much for sending this site address. I have been having forum withdrawals for months now. I’m happy to be here. I’m approching my one year date and it’s pretty unreal.

Talk to everyone later.

Tonya Correll

I finally have that long sought over appointment with the neurologist that is the absolute best in Canada…on Monday..remember? Finally seeing a doctor that knows about this disorder..and it only took over a year to see her thanks to my inept GP. Taking the day off Monday to see her as it is about an hour away. Cheers, I hope everybody is as well as they can be. I would know absolutely nothing about this disorder if it weren’t for my friends here over the last year. You have been my lifeboat and inspiration and hope. I thank you all.
Hugs
Val

Val,

Its really good to see you back! 🙂 Cant believe the day is finally here, its been ages for you to have to wait, All the best, and thinking of you. Please let us know how it went, i am dying to know the outcome.

Think I’ll send an email to the GBS Foundation & ask if they can post a message on the home page of this site to let users (old & new) know how to get to this forum, because I still can’t get a thing by clicking on Discussion Forums… I also had to re-register. Maybe they can help out people like me who have been trying to get on here for months!!!

HI Ali and all:
Up late tonight being sort of nervous about the neuologist apointment first thing in the morning. I will update you. It’s good to see so many familiar faces.
I also found that I couldn’t get into the forums from the Homepage. I have to type [url]www.gbs-cidp.org/forums/[/url]
and added it to my favourites. Hope that helps some of you.

Cheers and hugs all around
Val

LEE,
I sent an email to Gemini (shannon & ben) and I know someone else did too (maybe Brandy), she knows, so it’s up to her to rejoin.

DOES ANYONE HAVE AN EMAIL FOR ROSEBUDOZEN (nancy)????

Is there anyone else we can get together on to find???

GOOD IDEA ABOUT A LINK TO THE FORUM PLACED ON FOUNDATION PAGE. I”M GOING TO EMAIL THEM.

Hi,

I got an email from a friend telling me about this forum. I did not know they had the one forum going – short from what it was, but a start!!

Glad to be back.

Jethro

[B]Welcome Back Jethro.[/B] 🙂

Hi All — you all sound like such terrific people! I’m new and not at all sure I’m doing anything correctly — never have done anything like this before. I developed GBS 10/5/05. I’m into my eigth month and beginning to wonder if I’ll walk on my own again. After a month in the hospital, I had two months in rehab and I still have a PT come to the house twice a week. Otherwise, I just get out of the house for dr. appointments etc. Bummer! I’ve been rubber-necking on your forum and the UK one for a week or so and you all sound like fab people — hope I can catch some of your spirit!:)

Barb

Hello Barb,
Welcome to our forum where we become a family who feels what you feel. I’m one of the “oldies” (in membership, not age 🙂 and we’re looking for our old members and saying welcome back because our forum was hacked and we lost it. Since we’re still being restored and don’t have catagories yet, just pick a post that suits what you want to say, or start a new one.

Hi Barb,

Welcome to the Family. There is a wealth of knowledge from all the members that can help you if you have any questions. 🙂 🙂

Dear Barb

Welcome! We sound terrific – cos we are! 😀 (okay, I just couldn’t resist that).

Where are you at present on the walking scale? Wheelchair? Zimmer frame?

After 8 months, I would reckon you’re still in the getting better phase (I have no medical background whatsoever – it’s just my guess).

I think I might be a bit of an oldie in membership, and age. Ah well.

And [B]Welcome back to Jethro[/B]. I was away for while before the Forum disappeared and missed your postings.

Glad to see you back Jethro! 😀

Hi Teresa,

Thanks for the question about my walking … I just didn’t know where to start.:) I’m assuming a Zimmer frame is what I call a walker and that’s where I’m at. However, I’m also using forearm crutches, but only when someone is walking with me. Endurance is a big problem for me. What was your experience with walking?

Barb,

Just wanted to say welcome and glad you found us.

Jerimy

has anyone emailed kathy (big sissy) yet?

Barb,

Not every GBS case is the same, but at 8 months I was also on forearm crutches learning to walk again too. This was after 5 weeks in ICU and over 3 months in a rehab center, following another 4 months of out patient therapy at the rehab center. It takes a lot of work to build your endurance levels up. Rewards are seen in months, not days or weeks, and you must know your limits because you can’t try to do more than your body is ready for. At the same time, you can not be lazy. Keep your spirits high, a positive attitude, and you will get better. Most importantly, divine spiritual and family love protects, restores, and uplifts life more than anything else on Earth.

Warmest regards.

Jethro

Boy was I confused! I am so happy the forum is up and running again. I sent a new member to the site only to find out it was gone. Glad we are trying to reconnect with old members. I have e-mail and phone numbers for a few members not mentioned yet and I will contact them.

Bev in Pleasanton
Mike in New Orleans
Benny in Pacifica

Again, great to have the Forum back up.

Hello,
Does anyone know about KASSANDRA yet? I did send her an email, but I think she’d know how to find her way back.

When our liaison’s go to meetings, tell new people how to use the /forums or other links so that they can get here. Once our discussion forum is fully functional, they won’t be so confused.

Kass knows about how to get here Liz I think, I saw her this weekend at the Liason meeting and she didn’t mention that she was having any problems with it.

Jer

Hi everyone,
I am so glad the site is back!!! I missed all of you. I haven’t gotten better but then I’m no worse. Now I have started Cytoxan. The Rituxan didn’t work fdor me so this is my last option for now. Wish me luck. If anyone has taken Cytoxan let me know will you? My hair is falling out and I wonder if if I should color again?
Connie

Thanks Liz for emailing me. Had to re-register, so from MamaV, it’s gone to MamaVisme. 😀

Been reading about everyone’s progress and what’s going on.

Would like to get things moving with local GBS group. What do any of you have for opinion on booster shots? My Monica turned 10 in December and technically she is due for a series of shots but I am not sure whether this would be a smart move.

Great news on her end: She just had her dance recital 2 weekends ago (she dances ballet, jazz, and hip hop – 7th year) and her hip hop class has been invited to dance at Six Flags Gurnee Mills, IL for DanceFest. How cool is that???!!! She’s so excited.

She’s having a hard time getting her legs moving in the mornings again now. I am attributing that to it being spring and her being more active and running about more which is taking more of her energy and endurance. They just had to do their physical fitness stuff for phy ed class and had to run a mile – UGH! It’s stuff like this that makes it hard for people to really understand with her – she wants to participate, but there are days where it is just really tough to keep up with the other kids and it’s a constant reminder that has to be made for teachers and staff that she isn’t being sluggish or lazy. It’s frustrating at times because taking your first glance at her and even watching her on the playground, you honestly would not know that there was anything different with her compared to the other kids. But you keep that up for 20-30 minutes…..and then you see her drop off. Next school year she is able to be on the softball and basketball teams. I worry about her being able to maintain the energy necessary to keep up with those, ya’ know? But of course I keep those worries to myself and just encourage her to go out there and try and do her best – which she does with a smile and all the fight in the world.

Anyway, back to my question of the week – what about booster shots???? :confused:

MamaVisme,

This is just my 2 cents worth on booster shots but as far as I am concerned I will probably avoid them. I came down with GBS five days after receiving HepA/HepB booster shots for a trip overseas. I have had these shots before with no problems, but that particular time they got me. I have heard, that if you get GBS/CIDP from a particular type of shot, you should be cautious in getting the same type of shot again (i.e. flu, hepatitis, etc.). I will definately not get the the Hep shots again.

Not sure what the school rules are for shots though, as kids often are required to have certain shots. You might have to check and get an opinion from your daughter’s neuro/family doctor.

Glad to hear your daughter is doing so well! Tell her congrats on the Dancefest selection. 🙂

hi mamav, that is great that monica can participate in sports and dance like that. congrats to her on going to dancefest, i hear the kids have a ball at those things. the booster question, for me would be a no, if it were my child i would put it in writing to the school board and principle that she has a history of gbs, and give them as much research and even print out your answers from this site, on the dangers of getting vaccs with this disease. any vacc poses the possiblity of triggering another episode or reaction, even if it is not the same way the first episode started. just my opinion. please make sure monica gets plenty of rest and doesn’t over do things, i wouldn’t want anything to come back again. take care.:)

Hi Vicky,
I did notice that you got back. I’m glad I chose to keep the emails from the bracelet sales, I was able to notify about 60 people. If we can compare booster shots to flu shots, I am one of the members who would say NEVER NEVER AGAIN will I chance it.

Hey Jerimy!!!!!!! What’s up dude????? I missed ya………….now we can “jawjack” again.

The Per

Hi Liz
lPlease e- mail me your address so I can pay you for the bracelets. I haven’t been feeling to well but I’m getting back noqw.Connie