Introduction

[Guest guest]

greendaygirl39 wrote:

> and I recieve no PCA help or anything like that, anyone else

>like us?

>

>

My husband and I also have no PCA help. I have SMA type 2. We've been

married over 14 years and have two daughters.

Jenn

[Guest guest]

Wow its so great to hear from couples who also don't recieve any help I was

worried I'd feel pressured on this group:)

As for you with children, how long did it take for your spouce to get in the

role of being a parent and doing the spouce stuff? We really want children but

I know towards the end of my pregnancy I could not lift , and also I think

maybe in the begining it would help to have PCA help [although I cringe at the

thought- we like our privacy] until I'm in the swing of things, what are your

experiences?

Love, Peace and Green Day,

Ali +

Re: Introduction

Same here...I have sma II. and I have been together 21 years. :-)

Lori

Jenn Malatesta wrote:

> greendaygirl39 wrote:

>

> > and I recieve no PCA help or anything like that, anyone else

> >like us?

> >

> >

> My husband and I also have no PCA help. I have SMA type 2. We've been

> married over 14 years and have two daughters.

>

> Jenn

>

>

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[Guest guest]

Yes! Simone that is very true, We dont know what we would do without

my mother...well we do, and I lived in Washington for a year

and it is so nice to have an advocate for us here.

>

> > Nice! Has your spouce recieved any special

> > training? I have not, all the things I know

> > has taught me. I was thinking though if it couldnt

> > hurt to get some training.

> >

> > Love, Peace and Green Day,

> > Ali +

>

>

>

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> " Character cannot be developed in ease and quiet. Only through

experience of trial and suffering can the soul be strengthened,

vision cleared, ambition inspired, and success achieved. "

>

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[Guest guest]

Since I'm the one that has SMA and the one that was pregnant, our

situation was a bit different. The only difference for Lee in taking

care of me was about 20 more pounds or so he had to lift when I neared

full term. Once the kids were born, he slipped into daddy role pretty

easily. A lot of friends volunteered to babysit or help at the house too.

Jenn

nimrod2985@... wrote:

>Wow its so great to hear from couples who also don't recieve any help I was

worried I'd feel pressured on this group:)

>As for you with children, how long did it take for your spouce to get in the

role of being a parent and doing the spouce stuff? We really want children but

I know towards the end of my pregnancy I could not lift , and also I think

maybe in the begining it would help to have PCA help [although I cringe at the

thought- we like our privacy] until I'm in the swing of things, what are your

experiences?

>

>Love, Peace and Green Day,

>Ali +

>

>

>

[Guest guest]

HI Jean

Welcome to the group. ITs very admirable that you joined trying to help

" your kids " . Could you elaborate on what kind of behavioral problems?

Allie

9year old son dx with AS. NVLD, anxiety, depression, rages, dysphasia

and dysgraphia

[Guest guest]

allie340@... wrote:

> HI Jean

> Welcome to the group. ITs very admirable that you joined trying to help

> " your kids " . Could you elaborate on what kind of behavioral problems?

Yes, I do love 'my kids'. We have a lot of fun in my class and each one

is adorable in his/her own way.

Right now, I have one most immediate problem. My student, C, is

behaving very sexually. He touches one of my aides, one of my female

students and one of my school volunteers. He gets an erection when he

gropes them so it is not innocent patting. He also masturbates in

class. I honestly believe it is normal teenaged hormones complicated by

his autism and the fact that he has practically no limits at home. So

far, I am using incompatible behaviors and sending him to his seat when

he touches someone. If it is really egregious, I use the TOOTS model

where he has to put his head down and I count to ten. I am also trying

to reward good behavior. This is hard since his favorite reward is to

grope someone :>) He doesn't like snacks much but he does like juice so

I am giving him sips of juice as a reward. This is much harder

logistically for me than M & M's but I am managing. It is going slowly

but I do think we are making headway. I'll know more when I get a

chance to look at my data.

Thanks for asking,

R

[Guest guest]

Does he lose any privileges or a preferred item when it happens? One thing I've heard of is training the student that there is a specific time and place for such behavior (i.e. their bedroom or bathroom at home), and they can only do that during that time and in that place. Sometimes, a bathroom break can be used at school, but you'd want to be sure no other students are using it at the same time.

Also, is it possible to have him seated away from the targeted student, and have another aide assist him? Assuming he's being assisted by female aides, would it help for a male aide to be assigned to him, or would that even make a difference?

HTH,

Heidi

-------------- Original message -------------- From: <luvsbt@...> > allie340@... wrote: > > > HI > > Welcome to the group. ITs very admirable that you joined trying to help > > "your kids". Could you elaborate on what kind of behavioral problems? > > Yes, I do love 'my kids'. We have a lot of fun in my class and each one > is adorable in his/her own way. > Right now, I have one most immediate problem. My student, C, is > behaving very sexually. He touches one of my aides, one of my female > students and one of my school volunteers. He gets an erection when he > gropes them so it is not innocent patting. He also masturbates in > class. I honestly believe it is normal teenaged hormones complicated by > his autism and the fact that he has practically no limits at home. So > far, I am using incompatible behaviors and sending him to his seat when > he touches someone. If it is really egregious, I use the TOOTS model > where he has to put his head down and I count to ten. I am also trying > to reward good behavior. This is hard since his favorite reward is to > grope someone :>) He doesn't like snacks much but he does like juice so > I am giving him sips of juice as a reward. This is much harder > logistically for me than M & M's but I am managing. It is going slowly > but I do think we are making headway. I'll know more when I get a > chance to look at my data. > Thanks for asking, > R > > >

[Guest guest]

Welcome I have a 16 yo son and have dealt with the issue you mentioned

for many years. I think it is imperative that you get some cooperation and

help from home with this. We all know how important it is to have continuity

when it comes to our autistic population. My son used to get busy where ever

he pleased..........the store, the park, etc. He has been taught that the

one and only place he can masturbate is in his room. I never made a big deal

over it but always led him to his room and told him that is something we do

in private. It takes time but they catch on. My son usually heads to his

bedroom when he comes in from school. He knows that is his space.

That said, I want to thank you for having the fortitude and devotion to work

with our children. I have appreciated every one of my son's special ed

teachers over the years.

Donna

Re: Introduction

> allie340@... wrote:

>

> > HI Jean

> > Welcome to the group. ITs very admirable that you joined trying to help

> > " your kids " . Could you elaborate on what kind of behavioral problems?

>

> Yes, I do love 'my kids'. We have a lot of fun in my class and each one

> is adorable in his/her own way.

> Right now, I have one most immediate problem. My student, C, is

> behaving very sexually. He touches one of my aides, one of my female

> students and one of my school volunteers. He gets an erection when he

> gropes them so it is not innocent patting. He also masturbates in

> class. I honestly believe it is normal teenaged hormones complicated by

> his autism and the fact that he has practically no limits at home. So

> far, I am using incompatible behaviors and sending him to his seat when

> he touches someone. If it is really egregious, I use the TOOTS model

> where he has to put his head down and I count to ten. I am also trying

> to reward good behavior. This is hard since his favorite reward is to

> grope someone :>) He doesn't like snacks much but he does like juice so

> I am giving him sips of juice as a reward. This is much harder

> logistically for me than M & M's but I am managing. It is going slowly

> but I do think we are making headway. I'll know more when I get a

> chance to look at my data.

> Thanks for asking,

> R

>

>

>

>

>

[Guest guest]

Hello Donna, So glad that you found us through our dear Johanna. Sorry to hear that you are going through this with your husband. We have other wives,girlfriends,lifemates here that are the caregivers and supporters of their mates. Sometimes it is you as the caregiver that has to take that first step forward to getting the information and education so that you can understand and lead your husband. Yes, many times us with Hep C can get that mind set of being the King or Queen of De-Nile(play on words here). But as the illness goes on at one point you and your husband have to face the reality of this diease. So we are here for you, to help you through that. Believe me, this is the best group on the net. Because of the member here. We have researchers here(Liz,Jackie and not forgetting the many others) that if a question comes to the board

they do their dead level best to make sure it is answered with the most current and informative and correct information possible. We have others here that will wrap you in their arms and make you feel safe. The thing about this group, we have members from the ages of 17 to ??? So you get a wide amount of support here. Much love and hugs, Janetisgrig77 <isgrig77@...> wrote: Hi, My name is Donna and my husband has Hepc with cirrrhosis. We have a 14 yr. old and a 2yr. old and really need Dad to get well. I met Johanna and she thought we could use the support of this group. Joe tryed Pegintron but failed to respond. We are planning to try again with daily Infergen shots

and Riba in January. The treatment made him very sick and depressed last time and I wish we could afford to wait for some of the better drugs but Joe already had considerable damage before we knew he had hep c. We are definately struggling around here and I have been letting the problems eat me up. I know I have to stop it and find some new ways to cope. My husband is not very involved with finding a solution. He is coping by trying not to think about it and I am thinking too much about it. I look forward to listening and sharing.Blessings,Donna I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

[Johanna

(HEP C- MO)] Hi

Donna!

Good to see you’ve joined the group.

You’re going to be hard pressed to find a better group of people to get

info and support, and the moderators here are full of professional and personal

experience.

Sending good thoughts your way, and I’ll

give you a call on Friday.

Hugs,

Johanna

isgrig77

<isgrig77@...> wrote:

Hi,

My name is Donna and my husband has Hepc with

cirrrhosis. We have a

14 yr. old and a 2yr. old and really need Dad to

get well. I met

Johanna and she thought we could use the support

of this group. Joe

tryed Pegintron but failed to respond. We

are planning to try again

with daily Infergen shots and Riba in

January. The treatment made him

very sick and depressed last time and I wish we

could afford to wait

for some of the better drugs but Joe already had

considerable damage

before we knew he had hep c. We are definately

struggling around here

and I have been letting the problems eat me

up. I know I have to stop

it and find some new ways to cope. My husband is

not very involved

with finding a solution. He is coping by

trying not to think about it

and I am thinking too much about it. I look

forward to listening and

sharing.

Blessings,

Donna

I am a rock, I am island...and a rock feels no pain, and a island never

cries...- Simon

[Guest guest]

I can relate to this ..

I to had a lot of damage before finding out...

The thing I have come to realize is I am NOT an expert and all the information can get over whelming at times...

But I do what my doctors tell me and ask questions when I can...

Sometimes I get where good god I can't take any more so I just try to get through the best I can....

I tell my wife I have to deal with this MY way cause I have to live with it...

And at times just getting through the day is all I can deal with...

I am on the transplant list and almost had a live not to long ago, but it wasn't meant to be...

I wish you and your husband all the luck there is,

And anytime I can help just yell

<smile>

Sometimes my mind is clear enough to talk other times all I can say is I'm sorry if it doesn't come out clear......

Don't let all the information over whelm you, just take in what you can for now

-- Introduction

Hi, My name is Donna and my husband has Hepc with cirrrhosis. We have a 14 yr. old and a 2yr. old and really need Dad to get well. I met Johanna and she thought we could use the support of this group. Joe tryed Pegintron but failed to respond. We are planning to try again with daily Infergen shots and Riba in January. The treatment made him very sick and depressed last time and I wish we could afford to wait for some of the better drugs but Joe already had considerable damage before we knew he had hep c. We are definately struggling around here and I have been letting the problems eat me up. I know I have to stop it and find some new ways to cope. My husband is not very involved with finding a solution. He is coping by trying not to think about it and I am thinking too much about it. I look forward to listening and sharing.Blessings,Donna

[Guest guest]

HELLO MY NAME IS BUDDY. i READ THE POSTS EACH DAY. I DONT COMMENT BUT I GET ALOT OUT OF THE POSTS. THANK YOU ALL. IN 96 I WAS TOLD I HAD HEP C I WENT TO SAN FRANCISCO FOR STUDIES AND SINCE THEN I HAVE BEEN IN 2 DIFFERENT TREATMENTS BUT I DONT RESPOND I HAVE CIRR ALSO BUT I AM DOING GOOD IN 96 THEY TOLD ME IN 8 TO 10 YEARS MIGHT NEED A TRANSPLANT BUT I AM DOING GOOD JUST ALOT OF FATIGUE BUT I STILL WORK . NO MAJOR SYSTOMS. I PANICKED IN 96 THOUGHT I WAS DYING BUT AS YEARS GO BY I LOOK FOR DIFFERENT TREATMENTS AND ENVEN THOUGH NOT RESPONDING IM TOLD THEY DO GOOD TO MY LIVER. IM TOLD I GOT IT PROBABLY IN 69 IN VIETNAM.. THANK YOU ALL FOR LISTENING. GOOD LUCK AND KEEP A POSITIVE ATTITUDE...BUDDYJohanna <johanna@...> wrote: [Johanna (HEP C- MO)] Hi Donna! Good to see you’ve joined the group. You’re going to be hard pressed to find a better group of people to get info and support, and the moderators here are full of professional and personal experience. Sending good thoughts your way, and I’ll give you a call on Friday. Hugs, Johannaisgrig77 <isgrig77@...> wrote: Hi, My name is Donna and my husband has Hepc with cirrrhosis. We have a 14 yr. old and a 2yr. old and really need Dad to get well. I met Johanna and she thought we could use the support of this group. Joe tryed Pegintron but failed to respond. We are planning to try again with daily Infergen shots and Riba in January. The treatment made him very sick and depressed last time and I wish we could afford to wait for some of the better drugs but Joe already had considerable damage before we knew he had hep c. We are definately struggling around here and I have been letting the problems eat me up. I know I have to stop it and find some new ways to cope. My husband is not very involved with finding a solution. He is coping by trying not

to think about it and I am thinking too much about it. I look forward to listening and sharing.Blessings,Donna I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

Hi Buddy , nice to meet you and welcome to the group .

RE: Introduction

HELLO MY NAME IS BUDDY. i READ THE POSTS EACH DAY. I DONT COMMENT BUT I GET ALOT OUT OF THE POSTS. THANK YOU ALL. IN 96 I WAS TOLD I HAD HEP C I WENT TO SAN FRANCISCO FOR STUDIES AND SINCE THEN I HAVE BEEN IN 2 DIFFERENT TREATMENTS BUT I DONT RESPOND I HAVE CIRR ALSO BUT I AM DOING GOOD IN 96 THEY TOLD ME IN 8 TO 10 YEARS MIGHT NEED A TRANSPLANT BUT I AM DOING GOOD JUST ALOT OF FATIGUE BUT I STILL WORK . NO MAJOR SYSTOMS. I PANICKED IN 96 THOUGHT I WAS DYING BUT AS YEARS GO BY I LOOK FOR DIFFERENT TREATMENTS AND ENVEN THOUGH NOT RESPONDING IM TOLD THEY DO GOOD TO MY LIVER. IM TOLD I GOT IT PROBABLY IN 69 IN VIETNAM.. THANK YOU ALL FOR LISTENING. GOOD LUCK AND KEEP A POSITIVE ATTITUDE...BUDDYJohanna <johanna@...> wrote:

[Johanna (HEP C- MO)] Hi Donna!

Good to see you’ve joined the group. You’re going to be hard pressed to find a better group of people to get info and support, and the moderators here are full of professional and personal experience.

Sending good thoughts your way, and I’ll give you a call on Friday.

Hugs,

Johannaisgrig77 <isgrig77@...> wrote:

Hi, My name is Donna and my husband has Hepc with cirrrhosis. We have a 14 yr. old and a 2yr. old and really need Dad to get well. I met Johanna and she thought we could use the support of this group. Joe tryed Pegintron but failed to respond. We are planning to try again with daily Infergen shots and Riba in January. The treatment made him very sick and depressed last time and I wish we could afford to wait for some of the better drugs but Joe already had considerable damage before we knew he had hep c. We are definately struggling around here and I have been letting the problems eat me up. I know I have to stop it and find some new ways to cope. My husband is not very involved with finding a solution. He is coping by trying not to think about it and I am thinking too much about it. I look forward to listening and sharing.Blessings,Donna

I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

Oh Donna First off,, WELCOME! You did the right thing to come here, we will help you as much as possible..I think the main thing is to educate yourselves about this disease and get all his labs and biopsy done to see IF he needs to do tx at this point or can wait until hopefully something easier and better comes along. Keep a copy of EVERY lab done and just everything that applies to his hep in a folder at home so you will be able to reference it as you need too. Well, we are here for you so let us know how we can help you and once again, WELCOME! jaxisgrig77 <isgrig77@...> wrote: Hi, My name is Donna and my husband has Hepc with cirrrhosis. We have a 14 yr. old and a 2yr. old and really need Dad to get well. I met Johanna and she thought we could use the support of this

group. Joe tryed Pegintron but failed to respond. We are planning to try again with daily Infergen shots and Riba in January. The treatment made him very sick and depressed last time and I wish we could afford to wait for some of the better drugs but Joe already had considerable damage before we knew he had hep c. We are definately struggling around here and I have been letting the problems eat me up. I know I have to stop it and find some new ways to cope. My husband is not very involved with finding a solution. He is coping by trying not to think about it and I am thinking too much about it. I look forward to listening and sharing.Blessings,Donna Jackie

[Guest guest]

Hi ,

Welcome to the group. I am Rose, I live in Portland OR and am 48 yrs

old. I have 3 teenage sons- 16, 17 and 18 and my

sweetie . We have 2 cats and a dog. I suffer from RA of the

cervical spine, bi-lateral epilepsy, agoraphobia w/panic disorder and

mild clinical depression w/anxiety attacks. I am glad you found your

way to . Here you will find some of the most compassionate,

helpful, friendly people you will ever meet!

Fuzzy Hugs,

Rose

[Guest guest]

I new that the job loss was coming. It would have been better if it would have come at a later date so that I would have my Associates under my belt, but I guess there was really never a good time. I really want to move closer to my family so this gives me more of an opportunity to do that if I can figure out where I want to go with my marriage. I was getting really burned out on my job. This whole cancer thing has been a huge surprise and has changed my entire outlook on my whole life. Kim H Cody <lecody@...> wrote: Is losing the job a good thing or a bad thing? They do say that everything comes in threes, good and bad!!!!!! c. Re: Re: Introduction I am very lucky that it was caught early. I have been doing a lot of research and found that only 25% find it early enough. Ovarian Cancer is extremely aggressive. Luckily my Oncologist got me in immediately

for a hysterectomy. The did a biopsy of my lymph nodes and it game back clean. I will not have to take any other treat met. I do however have to go to the Oncologist every three months for the next two years, then every six month until my five year anniversary and then once a year. Ovarian Cancer and Breast Cancer have the same cells so I will have to go in for a Mammogram every six months. I will be out of work until March 21 because I had two surgeries back to back. Unfortunately the week before I went to the emergency room for the tumor my employer announced that it was closing the doors. I am entitled to severance but they are now telling me I may have to wait until I am released to go back to work because the Short Term Disability will continue to pay (not enough). Kim Cody <lecody@...> wrote: Welcome Kim. I am very pleased they caught your cancer so early. I understand that is kind of rare to catch it before it is too late. Will you have to do chemo and/or radiation? How long will you be off work? C.

Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Cancer can certainly change one's perspective on life... sometimes even for the better. Then, hopefully, you can look back on it and say it was the best thing that ever happened to you.

laura c.

Re: Re: Introduction

I am very lucky that it was caught early. I have been doing a lot of research and found that only 25% find it early enough. Ovarian Cancer is extremely aggressive. Luckily my Oncologist got me in immediately for a hysterectomy. The did a biopsy of my lymph nodes and it game back clean. I will not have to take any other treat met. I do however have to go to the Oncologist every three months for the next two years, then every six month until my five year anniversary and then once a year. Ovarian Cancer and Breast Cancer have the same cells so I will have to go in for a Mammogram every six months.

I will be out of work until March 21 because I had two surgeries back to back. Unfortunately the week before I went to the emergency room for the tumor my employer announced that it was closing the doors. I am entitled to severance but they are now telling me I may have to wait until I am released to go back to work because the Short Term Disability will continue to pay (not enough).

Kim Cody <lecody@...> wrote:

Welcome Kim. I am very pleased they caught your cancer so early. I understand that is kind of rare to catch it before it is too late. Will you have to do chemo and/or radiation? How long will you be off work? C.

PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Hi Donna!

My

husband does receive SSD and he also gets money from the va because of his service connected PTSD. He is

fighting the VA right now for full compensation. If social security won’t

give it to you, appeal it. I mean, he got it in the first try because they took

weapons away from him while he was in the army. Have you filed for social security?

[Guest guest]

Hi Tammy,

You just described my life - almost. My husband is extremely supportive and

strong for us. He works hard and he has to do a lot of overtime, which he

welcomes, because we sure can use a little extra money most of the time. I

cannot keep a job when I constantly have to take off to be with my daughter.

I gave up trying to work when Lea Aileen was a baby. Yet my hubby comes home

to help me with our kids and then does the dishes if I look too tired. He

tires to give me a few hours alone on the weekend to rest or do whatever I

want to do - usually it's grocery shopping with out the kids. No one else

likes to hear my kids whine in the store (ha, ha). Besides I never spend as

much money.

Any way, my mom and sisters are wonderful. They know it is tough and will

offer to help out. I trust my sisters to look after Lea Aileen. They will

call me immediately is anything starts, but they have their own busy lives

and families to take care of too. No one in my family understands the day

in and day out issues we face. I stopped talking to them about it and just

try to enjoy what time they spend with my children.

Thanks for sharing your story. It is so wonderful to have someone who just

deeply understands the real situation.

Rose

>From: " Tammy " <rlw_124@...>

>Reply-

>

>Subject: introduction

>Date: Fri, 27 Jan 2006 04:31:32 -0000

>

>I apologize for not introducing myself. I am Tammy, stay at home Mom.

>My husband, Randy, is a deputy sheriff. We have a daughter that is

>11 and no signs of the illness. Clay, 4, has been diagnosised with

>HIDS. He has two mutated genes verses one. There are roughly 200

>worldwide cases documented of HIDS. I am sure that number will

>dramatically increase when doctors learn what to test for. Clay

>first hospital stay was at 6 weeks and about every 3-4 weeks after

>that for severe dehydration and high temps. We were sent on wild

>ride for two years to find out what was going on,I think we saw

>every " ologist " . We were lucky enough to have Dr DeGuzman

>(rheumitologist), who was a pitbull and would not stop til she knew

>what was going on. He is very symtomatic. Without the meds he would

>go back to laying on the couch and not have much of a life.

>

>We became apart of the NIH study in December with Dr Lewey as our

>doctor.

>

>I have a descent support system but they do not get the impact of day

>to day living. My husband is my rock & my daughter is too mature

>for her age. She is a very smart girl. She makes us very proud of

>her. Clay is in speech and OT therapy an hour each twice a week.

>He is developmental delayed (36 months). He is amazing and finally

>talking....alot. I am trying to take off the weight that I ate

>through with all of the hospitalazations. Snickers bar was my best

>buddy for awhile. HA HA

>

>Things are better. We are having fevers once a week. A day before he

>gets the enbrel he gets a fever. We gave the shot last night and he

>has not quite bounced back yet. I am a little frustrated with that.

>At least on Naprosyn he had fevers once a month. Things were so bad

>before that I am very protective that does not happen again.

>

>Thank you again Fran for having the insight for having a group even

>with your day to day struggles. Thank you for the parents for

>opening up with your stories.

>

>Fran, I hope ph feels better soon, hang in there.

>

>Tammy, Edna Texas about 1 1/2 from Houston

>

>

>

_________________________________________________________________

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[Guest guest]

> Just wanted to say hi. I am also rather new to the group. My daughter is not

quite two and the feelings of helplessness is so familiar for me. Her symptoms

are " worsening " in that she gets more of them with each cycle. I guess we were

lucky to like very close to a major pediatric hospital (Hershey/ Penn State

Geisinger) but the feeling of unanswered questions still looms with me too. I

have just started the process fo taking my daughter to NIH (as many in this

group have done) but it will be anywhere from 6 months to a year before she can

be seen there. My daughter is on Cimetdrine to help but I can't say it has done

much for her yet. Has maybe lowered the fevers from 105-106 to maybe 103-104,

and possible decreased cycle length form 5-7 days to four days. We will try the

six months we were told and see. I think you feel the same that I do that your

child is given kind of a brush off because they are not " that sick " . I know I

should count my blessings but man if those drs were here for those sleepless

nights and had a child that couldn't stand being in her own body for 1- 2 weeks

out of a month (or less) then maybe they wouldn't be so laid back about our

children. Well see I have vented too and I hope that this group helps you out.

To me it is so helpful just to read the struggles that other parents have that

are just like mine but before now I didn't know any one else had. No we are not

out of our mind. I think this group alone would keep ibuprofen companies in

business. Good luck to you and your child.

Lori

Mom to - 10

Jenna- 7

Abby - 5

- 22 months (possible )

> From: Henry <heatherp_87@...>

> Date: 2006/06/13 Tue PM 01:57:15 EDT

>

> Subject: Introduction

>

> It is so nice to know that we are not the only ones

> frustrated with the many unanswered questions

> regarding . Here is our story...

>

> My daughter started getting fevers just before her

> second birthday. Before she was diagnosed with ,

> her fevers lasted six to seven days and they peaked at

> 106 - 107, and were only kept below 102 during that

> week if I rotated Tylenol and Motrin every 3 hours on

> the dot - if I missed one dose even by a half-hour her

> fever shot back up. I was literally setting my alarm

> clock at night to give her these medications for a

> week straight. Also, she would vomit when her fevers

> peaked - early on these were the only noticeable

> symptoms.

>

> At first my pediatrician said the fevers were simply

> due to this or that virus but after the first couple

> of episodes I noticed that the fevers where cyclical -

> they came exactly 21 days apart. After two trips to

> the E.R. and five episodes later, I insisted that

> there was more to it than virus after virus and my

> pediatrician referred me to Oakland Children's

> Hospital in California. The diagnosis was really

> only a process of elimination as test after test came

> back negative. They were at first reluctant to

> diagnose because my daughter vomited with every

> episode - they said this was not typical for

> patients (they obviously haven't read any message

> boards). I was finally able to get her in to

> Children's Hospital mid-fever (the fevers always

> seemed to hit after-hours, on weekends or when we were

> out of town) and they noticed the lesions in her

> mouth.

>

> Once officially diagnosed we were given instructions

> to administer one 3ml dose of Orapred at the onset of

> the fever. We waited and when her fever came we gave

> her the Orapred - I can't tell you how relieved I was

> when it actually worked! However, two or three

> episodes later the fevers started coming back a day or

> two after the dose. Her dose was upped to 6ml of

> Orapred at onset of fever. This worked for two fevers

> then they started coming back again.

>

> She has had these fevers for just over a year now and

> has been on Orapred for about nine months. All of a

> sudden the fevers have been coming closer together and

> she has had four fevers in less than a month, though

> the fevers do not generally spike as high as before we

> started the Orapred. She will be 3 at the end of June.

>

> Of course, no matter how confident I am in her

> doctors, I can never seem to get rid of that little

> voice in the back of my head that says is just a

> fancy name for saying they don't know what is wrong

> with her - that perhaps she is living with something

> more serious than these periodic fevers with no real

> consequence to her long term health.

>

> At this point I am very frustrated and I feel like my

> daughter is a bit lost in the cracks so to speak since

> her pediatrician is not familiar with the syndrome and

> Children's Hospital has more life-threatening diseases

> to deal with. Children's Hospital told me that once

> diagnosed their patients, armed with the power

> of steroids, are usually never heard from again - that

> these children go on to lead normal, nearly symptom

> free lives. They've made me feel as if we've been

> given this diagnosis - they've done their job and we

> need to just move on.

>

> So, I find myself quite alone in an attempt to unravel

> these mysterious fevers that disrupt our lives and

> make my daughter miserable. As I am sure many of you

> can relate, I am on the Verge of tears with excitement

> over finding this group.

>

> Sorry about the winded intro. It is just so nice to

> share with people who have experienced what we've been

> through. I look forward to learning from you all.

>

> Best regards,

>

> ez, CA

>

> __________________________________________________

>

[Guest guest]

Hey my name is nicole bagwell. my son is 3 and he just was diagnosed

with . I am also very frustrated about this. We went through the exact same

thing. My poor son has had his blood taken so many times.My son also has

vomiting at times. His fevers get up to 106, I also have to set my clock to give

medicine. Unfortunatley I don't know a lot about it so hopefully we can learn

together please write back

Henry <heatherp_87@...> wrote: It is so nice to know that

we are not the only ones

frustrated with the many unanswered questions

regarding . Here is our story...

My daughter started getting fevers just before her

second birthday. Before she was diagnosed with ,

her fevers lasted six to seven days and they peaked at

106 - 107, and were only kept below 102 during that

week if I rotated Tylenol and Motrin every 3 hours on

the dot - if I missed one dose even by a half-hour her

fever shot back up. I was literally setting my alarm

clock at night to give her these medications for a

week straight. Also, she would vomit when her fevers

peaked - early on these were the only noticeable

symptoms.

At first my pediatrician said the fevers were simply

due to this or that virus but after the first couple

of episodes I noticed that the fevers where cyclical -

they came exactly 21 days apart. After two trips to

the E.R. and five episodes later, I insisted that

there was more to it than virus after virus and my

pediatrician referred me to Oakland Children's

Hospital in California. The diagnosis was really

only a process of elimination as test after test came

back negative. They were at first reluctant to

diagnose because my daughter vomited with every

episode - they said this was not typical for

patients (they obviously haven't read any message

boards). I was finally able to get her in to

Children's Hospital mid-fever (the fevers always

seemed to hit after-hours, on weekends or when we were

out of town) and they noticed the lesions in her

mouth.

Once officially diagnosed we were given instructions

to administer one 3ml dose of Orapred at the onset of

the fever. We waited and when her fever came we gave

her the Orapred - I can't tell you how relieved I was

when it actually worked! However, two or three

episodes later the fevers started coming back a day or

two after the dose. Her dose was upped to 6ml of

Orapred at onset of fever. This worked for two fevers

then they started coming back again.

She has had these fevers for just over a year now and

has been on Orapred for about nine months. All of a

sudden the fevers have been coming closer together and

she has had four fevers in less than a month, though

the fevers do not generally spike as high as before we

started the Orapred. She will be 3 at the end of June.

Of course, no matter how confident I am in her

doctors, I can never seem to get rid of that little

voice in the back of my head that says is just a

fancy name for saying they don't know what is wrong

with her - that perhaps she is living with something

more serious than these periodic fevers with no real

consequence to her long term health.

At this point I am very frustrated and I feel like my

daughter is a bit lost in the cracks so to speak since

her pediatrician is not familiar with the syndrome and

Children's Hospital has more life-threatening diseases

to deal with. Children's Hospital told me that once

diagnosed their patients, armed with the power

of steroids, are usually never heard from again - that

these children go on to lead normal, nearly symptom

free lives. They've made me feel as if we've been

given this diagnosis - they've done their job and we

need to just move on.

So, I find myself quite alone in an attempt to unravel

these mysterious fevers that disrupt our lives and

make my daughter miserable. As I am sure many of you

can relate, I am on the Verge of tears with excitement

over finding this group.

Sorry about the winded intro. It is just so nice to

share with people who have experienced what we've been

through. I look forward to learning from you all.

Best regards,

ez, CA

__________________________________________________

[Guest guest]

Hi ,

Yes, your story sounds very familiar to mine.

Unfortunately, with there are a lot more

questions than answers. It is very hard to find good

information, because it just isn't out there I am

beginning to believe. I was very happy to find this

group. Anyway, feel free to email with any questions.

I may not have the answers but we can compare notes.

Best regards,

--- keisha Bagwell <keishb@...> wrote:

> Hey my name is nicole bagwell. my son is 3

> and he just was diagnosed with . I am also very

> frustrated about this. We went through the exact

> same thing. My poor son has had his blood taken so

> many times.My son also has vomiting at times. His

> fevers get up to 106, I also have to set my clock to

> give medicine. Unfortunatley I don't know a lot

> about it so hopefully we can learn together please

> write back

>

> Henry <heatherp_87@...> wrote:

> It is so nice to know that we are not the only ones

> frustrated with the many unanswered questions

> regarding . Here is our story...

>

> My daughter started getting fevers just before her

> second birthday. Before she was diagnosed with

> ,

> her fevers lasted six to seven days and they peaked

> at

> 106 - 107, and were only kept below 102 during that

> week if I rotated Tylenol and Motrin every 3 hours

> on

> the dot - if I missed one dose even by a half-hour

> her

> fever shot back up. I was literally setting my alarm

> clock at night to give her these medications for a

> week straight. Also, she would vomit when her fevers

> peaked - early on these were the only noticeable

> symptoms.

>

> At first my pediatrician said the fevers were simply

> due to this or that virus but after the first couple

> of episodes I noticed that the fevers where cyclical

> -

> they came exactly 21 days apart. After two trips to

> the E.R. and five episodes later, I insisted that

> there was more to it than virus after virus and my

> pediatrician referred me to Oakland Children's

> Hospital in California. The diagnosis was

> really

> only a process of elimination as test after test

> came

> back negative. They were at first reluctant to

> diagnose because my daughter vomited with

> every

> episode - they said this was not typical for

> patients (they obviously haven't read any message

> boards). I was finally able to get her in to

> Children's Hospital mid-fever (the fevers always

> seemed to hit after-hours, on weekends or when we

> were

> out of town) and they noticed the lesions in her

> mouth.

>

> Once officially diagnosed we were given instructions

> to administer one 3ml dose of Orapred at the onset

> of

> the fever. We waited and when her fever came we gave

> her the Orapred - I can't tell you how relieved I

> was

> when it actually worked! However, two or three

> episodes later the fevers started coming back a day

> or

> two after the dose. Her dose was upped to 6ml of

> Orapred at onset of fever. This worked for two

> fevers

> then they started coming back again.

>

> She has had these fevers for just over a year now

> and

> has been on Orapred for about nine months. All of a

> sudden the fevers have been coming closer together

> and

> she has had four fevers in less than a month, though

> the fevers do not generally spike as high as before

> we

> started the Orapred. She will be 3 at the end of

> June.

>

> Of course, no matter how confident I am in her

> doctors, I can never seem to get rid of that little

> voice in the back of my head that says is just

> a

> fancy name for saying they don't know what is wrong

> with her - that perhaps she is living with something

> more serious than these periodic fevers with no real

> consequence to her long term health.

>

> At this point I am very frustrated and I feel like

> my

> daughter is a bit lost in the cracks so to speak

> since

> her pediatrician is not familiar with the syndrome

> and

> Children's Hospital has more life-threatening

> diseases

> to deal with. Children's Hospital told me that once

> diagnosed their patients, armed with the power

> of steroids, are usually never heard from again -

> that

> these children go on to lead normal, nearly symptom

> free lives. They've made me feel as if we've been

> given this diagnosis - they've done their job and we

> need to just move on.

>

> So, I find myself quite alone in an attempt to

> unravel

> these mysterious fevers that disrupt our lives and

> make my daughter miserable. As I am sure many of you

> can relate, I am on the Verge of tears with

> excitement

> over finding this group.

>

> Sorry about the winded intro. It is just so nice to

> share with people who have experienced what we've

> been

> through. I look forward to learning from you all.

>

> Best regards,

>

> ez, CA

>

> __________________________________________________

>

[Guest guest]

Hi ,

I know how hard this is for you and your daughter. I still get the fearful

feeling every time has his fever. It's almost like a manic episode for

me. When it's over I'm like a mad women researching everything I can for

answers. I end up with the same scenario !!!!! I am glad for this site

especially when is having an episode. There is always someone to talk to

and who will answer you when you need them.Who understand. Hang in there and

know we are all here. Gretchen & 13 with

Henry <heatherp_87@...> wrote:

It is so nice to know that we are not the only ones

frustrated with the many unanswered questions

regarding . Here is our story...

My daughter started getting fevers just before her

second birthday. Before she was diagnosed with ,

her fevers lasted six to seven days and they peaked at

106 - 107, and were only kept below 102 during that

week if I rotated Tylenol and Motrin every 3 hours on

the dot - if I missed one dose even by a half-hour her

fever shot back up. I was literally setting my alarm

clock at night to give her these medications for a

week straight. Also, she would vomit when her fevers

peaked - early on these were the only noticeable

symptoms.

At first my pediatrician said the fevers were simply

due to this or that virus but after the first couple

of episodes I noticed that the fevers where cyclical -

they came exactly 21 days apart. After two trips to

the E.R. and five episodes later, I insisted that

there was more to it than virus after virus and my

pediatrician referred me to Oakland Children's

Hospital in California. The diagnosis was really

only a process of elimination as test after test came

back negative. They were at first reluctant to

diagnose because my daughter vomited with every

episode - they said this was not typical for

patients (they obviously haven't read any message

boards). I was finally able to get her in to

Children's Hospital mid-fever (the fevers always

seemed to hit after-hours, on weekends or when we were

out of town) and they noticed the lesions in her

mouth.

Once officially diagnosed we were given instructions

to administer one 3ml dose of Orapred at the onset of

the fever. We waited and when her fever came we gave

her the Orapred - I can't tell you how relieved I was

when it actually worked! However, two or three

episodes later the fevers started coming back a day or

two after the dose. Her dose was upped to 6ml of

Orapred at onset of fever. This worked for two fevers

then they started coming back again.

She has had these fevers for just over a year now and

has been on Orapred for about nine months. All of a

sudden the fevers have been coming closer together and

she has had four fevers in less than a month, though

the fevers do not generally spike as high as before we

started the Orapred. She will be 3 at the end of June.

Of course, no matter how confident I am in her

doctors, I can never seem to get rid of that little

voice in the back of my head that says is just a

fancy name for saying they don't know what is wrong

with her - that perhaps she is living with something

more serious than these periodic fevers with no real

consequence to her long term health.

At this point I am very frustrated and I feel like my

daughter is a bit lost in the cracks so to speak since

her pediatrician is not familiar with the syndrome and

Children's Hospital has more life-threatening diseases

to deal with. Children's Hospital told me that once

diagnosed their patients, armed with the power

of steroids, are usually never heard from again - that

these children go on to lead normal, nearly symptom

free lives. They've made me feel as if we've been

given this diagnosis - they've done their job and we

need to just move on.

So, I find myself quite alone in an attempt to unravel

these mysterious fevers that disrupt our lives and

make my daughter miserable. As I am sure many of you

can relate, I am on the Verge of tears with excitement

over finding this group.

Sorry about the winded intro. It is just so nice to

share with people who have experienced what we've been

through. I look forward to learning from you all.

Best regards,

ez, CA

__________________________________________________

[Guest guest]

Hi , Stick with this site and you will learn everything here. Look back on

old post and in the files. Fran is always great to ask questions. We all feel so

fortunate to have all this support and information at our finger tips. Hang in

there as well. Gretchen & 13 with

keisha Bagwell <keishb@...> wrote: Hey my name is nicole

bagwell. my son is 3 and he just was diagnosed with . I am also very

frustrated about this. We went through the exact same thing. My poor son has had

his blood taken so many times.My son also has vomiting at times. His fevers get

up to 106, I also have to set my clock to give medicine. Unfortunatley I don't

know a lot about it so hopefully we can learn together please write back

Henry <heatherp_87@...> wrote: It is so nice to know that we are

not the only ones

frustrated with the many unanswered questions

regarding . Here is our story...

My daughter started getting fevers just before her

second birthday. Before she was diagnosed with ,

her fevers lasted six to seven days and they peaked at

106 - 107, and were only kept below 102 during that

week if I rotated Tylenol and Motrin every 3 hours on

the dot - if I missed one dose even by a half-hour her

fever shot back up. I was literally setting my alarm

clock at night to give her these medications for a

week straight. Also, she would vomit when her fevers

peaked - early on these were the only noticeable

symptoms.

At first my pediatrician said the fevers were simply

due to this or that virus but after the first couple

of episodes I noticed that the fevers where cyclical -

they came exactly 21 days apart. After two trips to

the E.R. and five episodes later, I insisted that

there was more to it than virus after virus and my

pediatrician referred me to Oakland Children's

Hospital in California. The diagnosis was really

only a process of elimination as test after test came

back negative. They were at first reluctant to

diagnose because my daughter vomited with every

episode - they said this was not typical for

patients (they obviously haven't read any message

boards). I was finally able to get her in to

Children's Hospital mid-fever (the fevers always

seemed to hit after-hours, on weekends or when we were

out of town) and they noticed the lesions in her

mouth.

Once officially diagnosed we were given instructions

to administer one 3ml dose of Orapred at the onset of

the fever. We waited and when her fever came we gave

her the Orapred - I can't tell you how relieved I was

when it actually worked! However, two or three

episodes later the fevers started coming back a day or

two after the dose. Her dose was upped to 6ml of

Orapred at onset of fever. This worked for two fevers

then they started coming back again.

She has had these fevers for just over a year now and

has been on Orapred for about nine months. All of a

sudden the fevers have been coming closer together and

she has had four fevers in less than a month, though

the fevers do not generally spike as high as before we

started the Orapred. She will be 3 at the end of June.

Of course, no matter how confident I am in her

doctors, I can never seem to get rid of that little

voice in the back of my head that says is just a

fancy name for saying they don't know what is wrong

with her - that perhaps she is living with something

more serious than these periodic fevers with no real

consequence to her long term health.

At this point I am very frustrated and I feel like my

daughter is a bit lost in the cracks so to speak since

her pediatrician is not familiar with the syndrome and

Children's Hospital has more life-threatening diseases

to deal with. Children's Hospital told me that once

diagnosed their patients, armed with the power

of steroids, are usually never heard from again - that

these children go on to lead normal, nearly symptom

free lives. They've made me feel as if we've been

given this diagnosis - they've done their job and we

need to just move on.

So, I find myself quite alone in an attempt to unravel

these mysterious fevers that disrupt our lives and

make my daughter miserable. As I am sure many of you

can relate, I am on the Verge of tears with excitement

over finding this group.

Sorry about the winded intro. It is just so nice to

share with people who have experienced what we've been

through. I look forward to learning from you all.

Best regards,

ez, CA

__________________________________________________

[Guest guest]

Thank you. I hope we can be helpful to each other.

Henry <heatherp_87@...> wrote: Hi ,

Yes, your story sounds very familiar to mine.

Unfortunately, with there are a lot more

questions than answers. It is very hard to find good

information, because it just isn't out there I am

beginning to believe. I was very happy to find this

group. Anyway, feel free to email with any questions.

I may not have the answers but we can compare notes.

Best regards,

--- keisha Bagwell <keishb@...> wrote:

> Hey my name is nicole bagwell. my son is 3

> and he just was diagnosed with . I am also very

> frustrated about this. We went through the exact

> same thing. My poor son has had his blood taken so

> many times.My son also has vomiting at times. His

> fevers get up to 106, I also have to set my clock to

> give medicine. Unfortunatley I don't know a lot

> about it so hopefully we can learn together please

> write back

>

> Henry <heatherp_87@...> wrote:

> It is so nice to know that we are not the only ones

> frustrated with the many unanswered questions

> regarding . Here is our story...

>

> My daughter started getting fevers just before her

> second birthday. Before she was diagnosed with

> ,

> her fevers lasted six to seven days and they peaked

> at

> 106 - 107, and were only kept below 102 during that

> week if I rotated Tylenol and Motrin every 3 hours

> on

> the dot - if I missed one dose even by a half-hour

> her

> fever shot back up. I was literally setting my alarm

> clock at night to give her these medications for a

> week straight. Also, she would vomit when her fevers

> peaked - early on these were the only noticeable

> symptoms.

>

> At first my pediatrician said the fevers were simply

> due to this or that virus but after the first couple

> of episodes I noticed that the fevers where cyclical

> -

> they came exactly 21 days apart. After two trips to

> the E.R. and five episodes later, I insisted that

> there was more to it than virus after virus and my

> pediatrician referred me to Oakland Children's

> Hospital in California. The diagnosis was

> really

> only a process of elimination as test after test

> came

> back negative. They were at first reluctant to

> diagnose because my daughter vomited with

> every

> episode - they said this was not typical for

> patients (they obviously haven't read any message

> boards). I was finally able to get her in to

> Children's Hospital mid-fever (the fevers always

> seemed to hit after-hours, on weekends or when we

> were

> out of town) and they noticed the lesions in her

> mouth.

>

> Once officially diagnosed we were given instructions

> to administer one 3ml dose of Orapred at the onset

> of

> the fever. We waited and when her fever came we gave

> her the Orapred - I can't tell you how relieved I

> was

> when it actually worked! However, two or three

> episodes later the fevers started coming back a day

> or

> two after the dose. Her dose was upped to 6ml of

> Orapred at onset of fever. This worked for two

> fevers

> then they started coming back again.

>

> She has had these fevers for just over a year now

> and

> has been on Orapred for about nine months. All of a

> sudden the fevers have been coming closer together

> and

> she has had four fevers in less than a month, though

> the fevers do not generally spike as high as before

> we

> started the Orapred. She will be 3 at the end of

> June.

>

> Of course, no matter how confident I am in her

> doctors, I can never seem to get rid of that little

> voice in the back of my head that says is just

> a

> fancy name for saying they don't know what is wrong

> with her - that perhaps she is living with something

> more serious than these periodic fevers with no real

> consequence to her long term health.

>

> At this point I am very frustrated and I feel like

> my

> daughter is a bit lost in the cracks so to speak

> since

> her pediatrician is not familiar with the syndrome

> and

> Children's Hospital has more life-threatening

> diseases

> to deal with. Children's Hospital told me that once

> diagnosed their patients, armed with the power

> of steroids, are usually never heard from again -

> that

> these children go on to lead normal, nearly symptom

> free lives. They've made me feel as if we've been

> given this diagnosis - they've done their job and we

> need to just move on.

>

> So, I find myself quite alone in an attempt to

> unravel

> these mysterious fevers that disrupt our lives and

> make my daughter miserable. As I am sure many of you

> can relate, I am on the Verge of tears with

> excitement

> over finding this group.

>

> Sorry about the winded intro. It is just so nice to

> share with people who have experienced what we've

> been

> through. I look forward to learning from you all.

>

> Best regards,

>

> ez, CA

>

> __________________________________________________

>