Hello, I am new to the group

[Guest guest]

Hi ,

Thank goodness their are people like you in this world that want more then a perfect,newborn baby.Not knowing your soon to be daughters story but I would guess she has not received top notch care,which is imperative for JRA.The inflimation of the heart or other body organs is not permanant,while it can cause death if not treated,it is treatable.She is having a systemic flare that needs to be treated with steroids,if not orally or if oral isn't helping she needs IV pulse steroids.I have a 4 yr old will Stills and we were fortunate to get a VERY,early diagnosis and he never had actual organ involvement.There are several treatment options out there and several ways to help her.You need to find a pediatric rheumatoligist and get her in asap.She will need lots of physical therapy and other care from many differant doctors.Do you know what drugs she is on now and what they have tried in the past?The more details you know the more questions you can ask and be better able to help her.While us moms don't hold medical degrees we know just about as much as the doctors we take our kids to.Ask any question you want and we are all here for you.

Becki and 4systemicJRA

[Guest guest]

Dear , Good for you on your adoption. Someone else already chimed in about the heart problems. Also, once she gets some good care, she may not be in a wheelchair forever. It depends on the damage, or she might just be in a flare. I have a 14 year old daughter with Still's. She was diagnosed at 10. She is on medication, and has some difficult times during the Winter, but she is currently doing pretty good. As you learn more about systemic JRA ask all of your questions here. There is a knowledgable bunch here. (n, 14, systemic)

Hello, I am new to the group

Hello,I am in the process of adopting a 13 year old girl with Stills disease. She was diagnosed with JRA when she was 8 years old, and has progressively gotten worse. She is now in a wheelchair, and has myocarditis. sp? I was wondering... Has anyone had any experience with heart problems associated with JRA, or does anybody know what kind of effect this problem will have on life expectancy?Any info that is provided will be greatly appreciated.Thanks, To leave this mailing list, send request to: -unsubscribe

[Guest guest]

We all understand what you are going through, Shirley. It's a hard thing to deal with despite what some people seem to think. The surgery for some is long and hard and for others it is easy with a short recovery. The hardest thing to overcome I think is the hearing loss. People who have not had to deal with this sort of thing, seem to me, to make light of it. And it really something that is very tough to deal with. Not only the hearing loss and the surgery, but that there is such a significant chance of regrowth and that you will have to go through it again and again. I just went through it again after 4 1/2 years of no infections or anything. I had a radical cwd and my mastoid cavity was just so large that the ctoma came back. I went in last Friday and the surgeon took out the ctoma and filled my mastoid cavity with hydroxyapatite paste that hardens into the porous mastoid bone, to make my cavity a lot smaller and a lot

less troublesome. I am pleased. And in a few weeks I go in to have the other ear done as well.

This group offers a great support system and advice and kind words to any who need them. Come here often. You can gain knowledge and hear stories....it's just a great group.

Welcome,

Mojomom <mojomom@...> wrote:

Hello all,

I am surprised to find a group of people that are aware of Cholesteatoma. I was looking for more information and found this group. I had my first and only surgery 12 years ago. I am having some sinus/ear problems for the last 4 weeks and my doctor is concerned. I am taking steroids for this week and will go back to the doctor on Friday. I took a strong antibotic and decongestant the last two weeks. I was having bleeding from my ear and some draining that looked like infection.

I am a female 58 years of age in Atlanta, Georgia.

It is good to find folks that understand.

Thanks

Shirley

[Guest guest]

Thanks for the welcome and the understanding. You sound as if you are doing well. I hope that is the case.

Shirley

We all understand what you are going through, Shirley. It's a hard thing to deal with despite what some people seem to think. The surgery for some is long and hard and for others it is easy with a short recovery. The hardest thing to overcome I think is the hearing loss. People who have not had to deal with this sort of thing, seem to me, to make light of it. And it really something that is very tough to deal with. I went in last Friday and the surgeon took out the ctoma and filled my mastoid cavity with hydroxyapatite paste that hardens into the porous mastoid bone, to make my cavity a lot smaller and a lot less troublesome. I am pleased. And in a few weeks I go in to have the other ear done as well.

This group offers a great support system and advice and kind words to any who need them. Come here often. You can gain knowledge and hear stories....it's just a great group.

Welcome,

Mojomom <mojomom@...> wrote:

Hello all,

I am surprised to find a group of people that are aware of Cholesteatoma. I was looking for more information and found this group. I am having some sinus/ear problems for the last 4 weeks and my doctor is concerned. I am taking steroids for this week and will go back to the doctor on Friday.

It is good to find folks that understand.

Thanks

Shirley

[Guest guest]

Hi Shirley, I am a 55 year old female with my first surgery scheduled Dec. 17. I am eager to get on with this and deal with whatever damage they find. Good luck to you. glynda

Hello, I am new to the group

Hello all,

I am surprised to find a group of people that are aware of Cholesteatoma. I was looking for more information and found this group. I had my first and only surgery 12 years ago. I am having some sinus/ear problems for the last 4 weeks and my doctor is concerned. I am taking steroids for this week and will go back to the doctor on Friday. I took a strong antibotic and decongestant the last two weeks. I was having bleeding from my ear and some draining that looked like infection.

I am a female 58 years of age in Atlanta, Georgia.

It is good to find folks that understand.

Thanks

Shirley

[Guest guest]

Thank you Glynda, and good luck to you on your surgery.

Shirley

Hello, I am new to the group

Hello all,

I am surprised to find a group of people that are aware of Cholesteatoma. I was looking for more information and found this group. I had my first and only surgery 12 years ago. I am having some sinus/ear problems for the last 4 weeks and my doctor is concerned. I am taking steroids for this week and will go back to the doctor on Friday. I took a strong antibotic and decongestant the last two weeks. I was having bleeding from my ear and some draining that looked like infection.

I am a female 58 years of age in Atlanta, Georgia.

It is good to find folks that understand.

Thanks

Shirley

[Guest guest]

Hi Folks,

My name is , and I would like to introduce myself to the group and ask

one question.

I am 38 years old I have had RA since I was about 23, although I've been

diagnosed about 5 years ago.

I have a quick question for now. Does anybody know anyone that has experienced

cure from RA?

I mean real cure. Not meds, placebo, diet, etc. Basically, being able to eat and

drink whatever you want and have a normal life.

Thank you.

.