Hi I am new here

July 12, 2005

Welcome aboard !

July 12, 2005

,

Welcome to .

July 15 is right around the corner and I know you're probably

excited and nervous at the same time.

I remember waiting on pins and needles wondering " Is this really

going to work for me? " Even though my mother had been implanted some

8 years before I was.. I still couldn't help but wonder.

Glad to say, I have been hearing well for almost 4 years now.

There are currently 4 implant users in my family with more to come

in the future as our hearing loss is due to hereditary progressive

nerve deafness.

What a great Birthday gift you are giving yourself.. the gift of

sound.

Here's hoping that everything goes well for you and hope you will

share your activation experience with us.

Any questions you may have, jump right in and ask. There's always

someone here willing to give an answer or opinion.

Also a very Happy Birthday to you!

Hugs,

Silly MI

In , " bearhuggie4u " <kaszonyi@t...> wrote:

> Hi my name is and I am from Down Under - Sydney.

>

> I just had the Nucleus Freedom implant surgery on the 1st July 05

> and await on the switch on which will be on the 15th July - yep on

> my 30th Birthday.

>

> I am going well at the moment.

>

> I am looking forward to meeting and share thoughts, concerns and

> feelings with you all guys.

>

> Smiles,

>

July 12, 2005

, I hope you have the best birthday even when your CI is turned oon!

Welcome to the list.

Implanted December 1988, Activated January 1989, N22

Legally blind most of my life

Totally deaf for part of my life

Nan Rosen

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

July 12, 2005

,

Welcome to the list! <smile> How exciting to have your activation scheduled

on your 30th birthday. What a wonderful birthday gift that will be! I hope

your surgery went well and you're enjoying a smooth recovery.

Again, welcome to the list. I look forward to reading more about your CI

journey.

Only a few more days before your activation! <smile>

Implanted: 12/22/04 Activated: 1/18/05

Nucleus 24 Contour Advance with 3G

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

July 12, 2005

Hi ! I just got the Freedom BTE yesterday. The body worn one is not out yet

but I will get one when it comes out. You are getting activated so fast. Lucky!

I had to wait 41 days! Do you wear a hearing aid? Good luck on the 15th . I am

sure you will be pleased. GOD BLESS

bearhuggie4u <kaszonyi@...> wrote:Hi my name is and I am from Down

Under - Sydney.

I just had the Nucleus Freedom implant surgery on the 1st July 05

and await on the switch on which will be on the 15th July - yep on

my 30th Birthday.

I am going well at the moment.

I am looking forward to meeting and share thoughts, concerns and

feelings with you all guys.

Smiles,

July 12, 2005

Welcome to ,

What a wonderful birthday gift! Looking forward to sharing and reading your

journey. Keep us posted.

Sharon

******************************

Hi my name is and I am from Down Under - Sydney.

I just had the Nucleus Freedom implant surgery on the 1st July 05

and await on the switch on which will be on the 15th July - yep on

my 30th Birthday.

I am going well at the moment.

I am looking forward to meeting and share thoughts, concerns and

feelings with you all guys.

Smiles,

---------------------------------

Start your day with - make it your home page

November 28, 2006

Hi a, I cried when I read your email, and my blood was boiling.

It was boiling because of what the doctors put you and your daughter

thru. I am glad that you didn't accept their diagnosis, and that you

continued to fight. You are so right. Go with your instincts.

My daughter was ten when she was diagnosed with systemic JRA. That

was seven years ago. I would recommend that you get a notebook and

start a diary on your daughter. Don't lose it, and bring it to every

appt. If she has a fever, write it down. If her finger hurts, write

it down. Write down everything.

a, it can be up to a year before the arthritis sets in. Shame on

that rheumy, who said that she didn't have systemic JRA because she

didn't have any arthritis.

Stay with this listserve. I have been here for seven years, and I am

always learning. There are many systemic parents here. We know what

you are going thru. You have a shoulder to cry on here. Your

daughter will be fine. Things might get bumpy at times, but you have

made it over the toughest hurdle-the diagnosis. Treat it

aggressively to avoid any damage, and you may even possibly be

blessed with remission. I know personally of two systemics that had

the disease for a year and then it went into remission. They have

been symptom free for five years now. Take care, (n, 17,

systemic)

On Nov 28, 2006, at 11:41 AM, paula wrote:

> Hi m my 9 year old daughter was just diagnosed with SOJRA last

> week.She has been sick since April, started with an itchy rash on her

> entire body that would move around but not go away.Our primary doctor

> sent us to dermatologists and allergist and we went round and round

> with the dostors and many different antihistamines until late august

> when she developed a fever of 104.5 that would not let up and

> continued for 6 days before my doctor would send us to the hospital.

> The hospital wasnt very helpful, they ran blood work and said she

> probably had a virus and we would never know what from and it would

> go away in a few weeks and sent us home. The following day I

> received a call from a doctor at the hospital telling me she received

> lab work back and that my daughter has JRA and she scheduled us to

> see a pediatric rheumatologist at the hospital the following friday.

> We went in and saw the rheumatologist and Jordan was put on

> naproxyn and they did more blood work and scheduled us to come back

> in 3 weeks.We were told to start the medicine when she started

> feeling joint pain which was not a symptom she had yet. I was also

> told she would go downhill quickly over the next few weeks as far as

> healthwise, so I took a one month personal leave from work.

> Three weeks later we went back to the rheumatologist for her

> appointment, still with no pain, just a never ending rash and low

> grade fever. The doctor said she got the bloodwork back and since her

> levels were returning to normal and no arthritis had set in it is not

> JRA.She said she would treat Jordan for her rash as an urticarial

> rash and put her back on Zyrtec and had more blood work done and sent

> us home.

> The following day Jordans fever was back up to 104.7 and she

> satrted vomiting . She was even more tired than she had been for the

> past few weeks and she wasnt drinking or eating. By monday I called

> our primary doctor and asked what to do. He called and got the

> bloodwork form friday and called me back and said get her into the

> hospital and have her admitted.We were in the hospital for over a

> week and no one could diagnose her,they did extensive lab work.They

> finally did a CT scan and found enlarged lymphnodes and decided they

> needed to do a biopsy.At 10 pm on friday sept 29, 2006 my ex husband

> and I were taken into a small room and told Jordan has non-hodgkins

> lymphoma, I cried so hard my niece was diagnosed with leukemia at the

> same age as Jordan and had passed away from it when she was 11.I felt

> like I was reliving a nightmare. Plans were made to start chemo the

> following week but to first get a spinal tap and bone marrow done to

> see how advanced it was. This was scheduled for monday morning.

> Well monday morning came and went and we didnt see the doctor

> finally at 1:30 in the afternoon the doctor came in and said Jordans

> biopsy was looked at again and it may not be cancer.They sent us home

> and had us come in on Friday for another biopsy and the bone marrow

> and spinal tap.We found out the following week that it was not cancer

> and we were back to the beginning and not knowing what was wrong with

> Jordan.We continued going into the hospital seeing a pediatric

> infectious disease doctor who was as concerned as I was about Jordan

> and was determined to help us find an answer.She ran any and all lab

> work she could think of.Poor Jordan even had a skin biopsy done on

> her rash, she is such a trooper with all that has been done to her.

> I finally got to my wits end and came on the internet and looked up

> the top childrens hospitals in the U.S. Philedelphia and Boston are

> ranked one and two.I have family in Boston so I decided to contact

> the infectious disease doctor and she set up appointments for us to

> take Jordan to Boston to see 3 different doctors Infectious Disease,

> Hematology and Rheumatology. We were scheduled to go mid November.

> November 1 we end up back in our hospital because Jordan has become

> so sick she has stopped eating and drinking and lost over 20

> pounds .Her fever is at 104.9 and has lasted for over a week again ,

> she was diagnosed with a UTI and put on medicine that she had a

> severe allergic reaction to and I feel like I am ready to give up.The

> hospital runs more lab work and does another CT scan, which shows her

> lymphnodes have become more enlarged and her spleen is enlarged.They

> also had her get her eyes tested and an echocardiogram.We had the

> pediatric rheumatologist in to visit a few times and they stood their

> ground saying that since Jordan had no signs of arthritis it wasnt a

> rheumatologic issue.

> After 4 days in the hospital we went home again with no

> answers.Finally we went to Boston, the first 2 doctors had no answers

> then we went to see Dr. Stoll and Dr. Nigrovic at

> Children's Hospital in Boston, we spent 6 hours there and they went

> over all of Jordans labs and gave Jordan a thorough exam.Final

> diagnosis is SOJRA the doctor is 90% sure.They said it can take

> months for the arthritis to set in.

> I was so relieved to finally have an answer and a treatment.I am

> a single mom and have been on leave from work for 3 months now trying

> to get Jordan well.The doctor didnt want to put Jordan on steroids

> and mtx he was concerned about the weight gain that comes with it.So

> since the arthritis hasnt set in yet he asked if I would be willing

> to try a newer drug Anakinra (Kineret).Jordan has been on the kineret

> for over a week, a daily injection.She has been rash free and fever

> free and she is returning to her old self.Her energy level has

> returned to normal amd she is back in school.I am hoping this will

> continue and I can go back to work a return to a somewhat normal life.

> All I can say to all moms is go with your gut and your instinct.If

> you dont like your doctors answer go to another one.And dont take the

> answer of we have to wait because waiting may be the wrong thing to

> do.

> We go back to Boston in late January ,because we live in western

> NY the doctors here will follow Jordan and send all labs to Boston.I

> am grateful for the kind and caring doctors that we do have and I am

> angry at the ones that just wanted to wait.Most of all I am grateful

> to have my little girl back.

> Im sorry this is so long .

> a

>

November 28, 2006

Oh my goodness a what a horrible nightmare you and your family have gone

through. I am so glad that you stuck with your instincts and that you finally

have a diagnosis and treatment that is working. May it continue to improve for

your daughter.

e

paula <sapphire61768@...> wrote:

Hi m my 9 year old daughter was just diagnosed with SOJRA last

week.She has been sick since April, started with an itchy rash on her

entire body that would move around but not go away.Our primary doctor

sent us to dermatologists and allergist and we went round and round

with the dostors and many different antihistamines until late august

when she developed a fever of 104.5 that would not let up and

continued for 6 days before my doctor would send us to the hospital.

The hospital wasnt very helpful, they ran blood work and said she

probably had a virus and we would never know what from and it would

go away in a few weeks and sent us home. The following day I

received a call from a doctor at the hospital telling me she received

lab work back and that my daughter has JRA and she scheduled us to

see a pediatric rheumatologist at the hospital the following friday.

We went in and saw the rheumatologist and Jordan was put on

naproxyn and they did more blood work and scheduled us to come back

in 3 weeks.We were told to start the medicine when she started

feeling joint pain which was not a symptom she had yet. I was also

told she would go downhill quickly over the next few weeks as far as

healthwise, so I took a one month personal leave from work.

Three weeks later we went back to the rheumatologist for her

appointment, still with no pain, just a never ending rash and low

grade fever. The doctor said she got the bloodwork back and since her

levels were returning to normal and no arthritis had set in it is not

JRA.She said she would treat Jordan for her rash as an urticarial

rash and put her back on Zyrtec and had more blood work done and sent

us home.

The following day Jordans fever was back up to 104.7 and she

satrted vomiting . She was even more tired than she had been for the

past few weeks and she wasnt drinking or eating. By monday I called

our primary doctor and asked what to do. He called and got the

bloodwork form friday and called me back and said get her into the

hospital and have her admitted.We were in the hospital for over a

week and no one could diagnose her,they did extensive lab work.They

finally did a CT scan and found enlarged lymphnodes and decided they

needed to do a biopsy.At 10 pm on friday sept 29, 2006 my ex husband

and I were taken into a small room and told Jordan has non-hodgkins

lymphoma, I cried so hard my niece was diagnosed with leukemia at the

same age as Jordan and had passed away from it when she was 11.I felt

like I was reliving a nightmare. Plans were made to start chemo the

following week but to first get a spinal tap and bone marrow done to

see how advanced it was. This was scheduled for monday morning.

Well monday morning came and went and we didnt see the doctor

finally at 1:30 in the afternoon the doctor came in and said Jordans

biopsy was looked at again and it may not be cancer.They sent us home

and had us come in on Friday for another biopsy and the bone marrow

and spinal tap.We found out the following week that it was not cancer

and we were back to the beginning and not knowing what was wrong with

Jordan.We continued going into the hospital seeing a pediatric

infectious disease doctor who was as concerned as I was about Jordan

and was determined to help us find an answer.She ran any and all lab

work she could think of.Poor Jordan even had a skin biopsy done on

her rash, she is such a trooper with all that has been done to her.

I finally got to my wits end and came on the internet and looked up

the top childrens hospitals in the U.S. Philedelphia and Boston are

ranked one and two.I have family in Boston so I decided to contact

the infectious disease doctor and she set up appointments for us to

take Jordan to Boston to see 3 different doctors Infectious Disease,

Hematology and Rheumatology. We were scheduled to go mid November.

November 1 we end up back in our hospital because Jordan has become

so sick she has stopped eating and drinking and lost over 20

pounds .Her fever is at 104.9 and has lasted for over a week again ,

she was diagnosed with a UTI and put on medicine that she had a

severe allergic reaction to and I feel like I am ready to give up.The

hospital runs more lab work and does another CT scan, which shows her

lymphnodes have become more enlarged and her spleen is enlarged.They

also had her get her eyes tested and an echocardiogram.We had the

pediatric rheumatologist in to visit a few times and they stood their

ground saying that since Jordan had no signs of arthritis it wasnt a

rheumatologic issue.

After 4 days in the hospital we went home again with no

answers.Finally we went to Boston, the first 2 doctors had no answers

then we went to see Dr. Stoll and Dr. Nigrovic at

Children's Hospital in Boston, we spent 6 hours there and they went

over all of Jordans labs and gave Jordan a thorough exam.Final

diagnosis is SOJRA the doctor is 90% sure.They said it can take

months for the arthritis to set in.

I was so relieved to finally have an answer and a treatment.I am

a single mom and have been on leave from work for 3 months now trying

to get Jordan well.The doctor didnt want to put Jordan on steroids

and mtx he was concerned about the weight gain that comes with it.So

since the arthritis hasnt set in yet he asked if I would be willing

to try a newer drug Anakinra (Kineret).Jordan has been on the kineret

for over a week, a daily injection.She has been rash free and fever

free and she is returning to her old self.Her energy level has

returned to normal amd she is back in school.I am hoping this will

continue and I can go back to work a return to a somewhat normal life.

All I can say to all moms is go with your gut and your instinct.If

you dont like your doctors answer go to another one.And dont take the

answer of we have to wait because waiting may be the wrong thing to

do.

We go back to Boston in late January ,because we live in western

NY the doctors here will follow Jordan and send all labs to Boston.I

am grateful for the kind and caring doctors that we do have and I am

angry at the ones that just wanted to wait.Most of all I am grateful

to have my little girl back.

Im sorry this is so long .

a

---------------------------------

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November 29, 2006

a:

Your story broke my heart. No one should have to go through what you and

your daughter have been through.

I am so glad that you have finally gotten the right treatment and Jordan

is doing so well.

I URGE you to send a copy of your story to the doctors who treated

Jordan, especially the rheumatologists who " stood their ground " . That is

ludicrous when doctors won't admit they are wrong, at the expense of a

little girl. They NEED to know about the Kineret working so well and

getting a 90% diagnosis, that in my eyes, is backed up by the excellent

response to Kineret. Please do contact her former doctors by letter and

let them know. Maybe it will save another child from being put through

such misery.

Welcome, we are so glad that you are here. You will find many caring

people here who will help you process what you have been through.

and Rob 17 spondy

(juvenile ankylosing spondylitis)

On Tue, 28 Nov 2006 19:41:32 -0000 " paula " <sapphire61768@...>

writes: