Question:

My 6 yr old daughter has been having asthma problems since she had RSV two years ago.  This fall/winter she has been having almost continuous problems, and as we live in Michigan, I am taking her to the U of M Pediatric Pulmonary unit next week in hopes they can help. I am trying to think of questions to ask so that my time there won’t be wasted.  Any suggestions?

1.  What is wrong? 2.  What is your treatment plan? 3.  I didn’t understand that, please explain again. Good luck. Chris Owens

Response:

Hi Chris: Sorry for the confusing post.  Her asthma started a couple of years ago, when she was four.  For the most part, she only had a problem with it when she became ill, and it would always develop into asthma.  However, since September, she has had almost continuous problems.  She has a lot of coughing, and is obviously ‘choked up’ (that’s what I called when I was struggling with asthma as a kid).  The albuterol hasn’t really done her any good recently.  It helps for maybe 2 to 3 hours, then she’s back struggling to breathe.  When I suggested to her doctor that maybe she should be tested to make sure it is asthma, and then maybe to put her on some kind of preventive treatment, I was just brushed off, and they have done nothing but treat the crisis.  She was taking .5 mg albuterol every 4 hours, Prelone syrup, Amoxicillin, and Claritin.  This helped for about one week, then as the meds were tapered off all symptoms came back.   She would puffy in the face, develop a rash around the outside of her mouth (red dots) and within an hour or two of that would begin coughing badly.  Kept her on the albuterol regiment, but they gave her an additional antibiotic, Zithromax, for 5 more days.  This helped for another week, then everything came back again.  Currently, she is still on the albuterol every 4 hours, and a Claritin in the morning.  She is not getting better.  I have the feeling that the doctor here is just hoping something will work, but really doesn’t know how to deal with it. I made an appointment with the University of Michigan’s Pediatric Pulmonary clinic on the advise of a friend whose daugher was recently diagnosed with cystic fibrosis. Anyway, I was hoping to get some feedback on what kinds of questions to ask these doctors.  Maybe what kinds of tests she should have done to determine if she really has asthma, and not something else?  Should she be tested for allergies?  What kinds of medications might be appropriate?  I don’t really know WHAT to ask them, and was hoping for some guidance from all of you. Thanks, Margaret

– Hide quoted text — Show quoted text – My 6 yr old daughter has been having asthma problems since she had RSV two years ago.  This fall/winter she has been having almost continuous problems, and as we live in Michigan, I am taking her to the U of M Pediatric Pulmonary unit next week in hopes they can help. I am trying to think of questions to ask so that my time there won’t be wasted.  Any suggestions? 1.  What is wrong? 2.  What is your treatment plan? 3.  I didn’t understand that, please explain again. Good luck. Chris Owens

Response:

Anyway, I was hoping to get some feedback on what kinds of questions to ask these doctors.  Maybe what kinds of tests she should have done to determine if she really has asthma, and not something else?  Should she be tested for allergies?  What kinds of medications might be appropriate?

Dear Margaret, I tried emailing you but it bounced back so I will post to the group.   An University program is usually top notch about diagnosisng and treating.   I would expect a cystic fibrosis test (all major programs do them just to be on the safe side).  I would inquire about a chest xray to see what is going on now.They might do a pulmunary function test, 4 year olds sometimes can’t understand exactly how to do them properly.  Allergy testing might be a good idea but they will refer you to am allergist for that.  She is not to young to be tested.  And you might want to inquire about an immune series (blood work up on her immune system).  Ask them what kind of preventive medication could she be on and if tthere is anotther treatment for what is going on now.  Write all your questions down because, as I have learned, you get nervous and they (docs) throw a lot of info at you. I have been through all of this with my son (and more) many times, if you have any other questions, concern or just want to chat, email me directly. Good luck, Gina

Response:

My 6 yr old daughter has been having asthma problems since she had RSV two years ago.  This fall/winter she has been having almost continuous problems, and as we live in Michigan, I am taking her to the U of M Pediatric Pulmonary unit next week in hopes they can help. I am trying to think of questions to ask so that my time there won’t be wasted.  Any suggestions? Thanks, Margaret

Response:

is ra controllable? why do some people get worse and have surgeries? isnt there anything they could do to prevent surgeries? when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation? aren’t there some success stories with ra?

Response:

is ra controllable?

Absolutely! why do some people get worse and have surgeries?

Some people delay seeking help for too long.  And some people have a hard time finding a drug that will slow down their disease.  Everybody reacts differently to different drugs.  What works for some, wont work for others. isnt there anything they could do to prevent surgeries?

Early aggressive treatment is the key to limiting damage cause by these diseases. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation?

It sure is!  For a pretty clear idea of what is going on in RA and other forms of inflammatory arthritis, check out www.arthritisinsight.com aren’t there some success stories with ra?

Of course there are, and many of them hang around here. Ken McCann   Has RA and runs marathons Mary Z  Has RA and just a few weeks ago, white water rafted the Colorado river through the Grand Canyon and is planning another rafting trip, even as we speak. Krissy Jo-Has RA which has not yet been successfully controlled but continutes to lead her life and is the founder of Arthritis Insight Harv has RA and (I think it was last summer) painted his own house Sarah L- has RA and is a practicing psychologist Amy (lkgoddess)  has RA and is a mother and a school teacher Rose Balan-Has RA and is a school teacher.  And is fighting a battle to keep getting the Remicade she needs to fight her Juvenile onset Rhematoid Arthritis. Kitty Kelly-a lady who is no longer able to be a part of our group because of her RA–But for several years was an active member of this group, and could hold her own in any flame war or against any troll. Every person who has RA or any other type of arthritis, but continues to wake up in the morning and face what that day has to offer, IS a SUCCESS STORY. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

Welcome to alt.support.arthritis.    I have never known anyone with inflamitory arthritis that has been cured.   I have had RA for close to 25 years and I have never spent one day in my life in a hospital for any reason.  Most of my days are pain free.  My disease modifying drug is Enbrel and I see my Rheumatologist about every 3-4 months.  I consider myself a success with my RA and I never expect to be cured. Harv – Hide quoted text — Show quoted text – is ra controllable? why do some people get worse and have surgeries? isnt there anything they could do to prevent surgeries? when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation? aren’t there some success stories with ra?

Response:

is ra controllable?

For some, yes.  For others, like Tina, Kitty Kelly and myself, no. why do some people get worse and have surgeries?

That’s the nature of the beast. isnt there anything they could do to prevent surgeries?

Yes, you can ignore them but the consequences there may be very severe. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped?

Medicines don’t "limit" RA, per se.  Some are blessed with "remission", often for extended periods of time.  I was almost normal for 4 years until my DMARD, Gold, just stopped working. inflammation?

That is but one of the symptoms.  Joint pain and overwhelming fatigue are my biggest dreads when I go into a flair. aren’t there some success stories with ra?

Lots, really.  Like Gloria Basford whose life returned to normal using Enbrel.  Harv and others are almost there with Enbrel and Arava.  Celebrex and Vioxx have helped others.  Methotrexate, originally a cancer chemotherapy drug, is very effective as a DMARD.  MTX and Remicade, originally used for Chron’s Disease, are a combination that is working for many who were not helped by any of the others.  Lots of us have high hopes for Anakinra and a few others due out soon.  Since Tina, Kitty & I have tried all the rest with no positive results we are among those waiting and hoping.  The future is very bright for those diagnosed with RA today versus those with a diagnoses dating back just 5 or 10 years.  We’ve come a long way from the days of three dozen aspirin to stop inflammation while getting stomach ulcers as the price for that treatment. — Be Well, Larry — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

is ra controllable?

For some of us.  I am on Remicade and have been doing really well, the trick is early aggressive treatment and a little luck. why do some people get worse and have surgeries?

Historically, it was treated worth a darn until the damage was done.  Now the trend is early treatment.  However, not everyone responds to the meds and some folks have more aggressive RA than others. isnt there anything they could do to prevent surgeries?

Again, early aggressive treatment is essential but not everyone will respond to the meds. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation?

The inflammation needs controlled but the disease processs itself needs controlled. aren’t there some success stories with ra?

Yes, we have several "poster children" here.  GloriaB has been on enbrel since the original studies and is doing great.  We have one member who competes in triatholons.  We one who just rafted the Grand Canyon.  On a smaller scale, I have kept my job and I have recently started painting my kitchen cabinets.  I was diagnosed I guess about 3-4 years ago now.  My RD is very good and have found a medication that works very well for me and there isn’t much that I can’t do. There is life after RA.  Here are a couple of websites that will give you some really good info: http://www.arthritisinsight.com/ http://www.arthritis.co.za/ Learn all you can about it and be a fully informed partner in your healthcare. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success

Wow – I really wish I had your confidence! Jayne

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success Wow – I really wish I had your confidence! Jayne

Hi Jayne,   Life, problems, whatever is better lived while being positive.   A person needs to believe that the decisions they make and the things they do ARE going to work best for them.  Proof of this are the results of improvement when a person is receiving the placebo.  We come together and discuss many things here in our support of arthritis and the people that have it.  I make an effort to be as honest as I can be in this newsgroup.  My RA and the medicines that I have worked with over the years have worked well but I still remember the mental anguish of accepting the fact of my having RA.  People need to know that they can still do well in their life and have inflamitory arthritis. Harv

Response:

I don’t know if what I am doing is confidence even though I do have a lot of it but I do many very good things every day for my body and health always have and always will and it shows and it is making a big difference I don’t plan on more meds and more sickness but I do plan on being a success by being pain free besides there is too much to do and I want to be an example of health not sickness thanks

Response:

very well put Harv you are right doing well in life is very important ra has to take a back seat to a happy life

Response:

Wow – I really wish I had your confidence! Jayne Hi Jayne,   Life, problems, whatever is better lived while being positive.   A person needs to believe that the decisions they make and the things they do ARE going to work best for them.  Proof of this are the results of improvement when a person is receiving the placebo.  We come together and discuss many things here in our support of arthritis and the people that have it.  I make an effort to be as honest as I can be in this newsgroup.  My RA and the medicines that I have worked with over the years have worked well but I still remember the mental anguish of accepting the fact of my having RA.  People need to know that they can still do well in their life and have inflamitory arthritis. Harv

Oops – I just re-read what I posted and realised it sounded sarcastic.  I truly didn’t mean it to though – I really do wish my outlook would turn round to a more positive one.  I’m still off work sick after 12 weeks, and going nuts being at home.  My manager is trying to sort out a job for me that won’t involve standing all day, and she is such a nice person, but I am still waiting to hear about it.  They say life begins at 40, and I really hope there’s some truth in that!  Roll on the end of the year. Apologies if my posting sounded somewhat trite. Jayne

Response:

is ra controllable?

I was talking about this with my RD and he said drugs are effective for about 85% of his patients. why do some people get worse and have surgeries?

Early treatment before damage sets in isnt there anything they could do to prevent surgeries?

Early aggressive treatment before the damage occurs when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped?

inflammation and slowing down that over active immune system inflammation? aren’t there some success stories with ra?

My treatment has been a success.  Not a single surgery and I have an extremely active lifestyle.  I am the one who rowed the Grand Canyon this summer.  I take anti-inflammatories only on an occasional basis. — MZ — website: http://members.home.net/mzuschlag

Response:

is ra controllable? why do some people get worse and have surgeries? isnt there anything they could do to prevent surgeries? when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation? aren’t there some success stories with ra?

Response:

is ra controllable?

Absolutely! why do some people get worse and have surgeries?

Some people delay seeking help for too long.  And some people have a hard time finding a drug that will slow down their disease.  Everybody reacts differently to different drugs.  What works for some, wont work for others. isnt there anything they could do to prevent surgeries?

Early aggressive treatment is the key to limiting damage cause by these diseases. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation?

It sure is!  For a pretty clear idea of what is going on in RA and other forms of inflammatory arthritis, check out www.arthritisinsight.com aren’t there some success stories with ra?

Of course there are, and many of them hang around here. Ken McCann   Has RA and runs marathons Mary Z  Has RA and just a few weeks ago, white water rafted the Colorado river through the Grand Canyon and is planning another rafting trip, even as we speak. Krissy Jo-Has RA which has not yet been successfully controlled but continutes to lead her life and is the founder of Arthritis Insight Harv has RA and (I think it was last summer) painted his own house Sarah L- has RA and is a practicing psychologist Amy (lkgoddess)  has RA and is a mother and a school teacher Rose Balan-Has RA and is a school teacher.  And is fighting a battle to keep getting the Remicade she needs to fight her Juvenile onset Rhematoid Arthritis. Kitty Kelly-a lady who is no longer able to be a part of our group because of her RA–But for several years was an active member of this group, and could hold her own in any flame war or against any troll. Every person who has RA or any other type of arthritis, but continues to wake up in the morning and face what that day has to offer, IS a SUCCESS STORY. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

Welcome to alt.support.arthritis.    I have never known anyone with inflamitory arthritis that has been cured.   I have had RA for close to 25 years and I have never spent one day in my life in a hospital for any reason.  Most of my days are pain free.  My disease modifying drug is Enbrel and I see my Rheumatologist about every 3-4 months.  I consider myself a success with my RA and I never expect to be cured. Harv – Hide quoted text — Show quoted text – is ra controllable? why do some people get worse and have surgeries? isnt there anything they could do to prevent surgeries? when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation? aren’t there some success stories with ra?

Response:

is ra controllable?

For some, yes.  For others, like Tina, Kitty Kelly and myself, no. why do some people get worse and have surgeries?

That’s the nature of the beast. isnt there anything they could do to prevent surgeries?

Yes, you can ignore them but the consequences there may be very severe. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped?

Medicines don’t "limit" RA, per se.  Some are blessed with "remission", often for extended periods of time.  I was almost normal for 4 years until my DMARD, Gold, just stopped working. inflammation?

That is but one of the symptoms.  Joint pain and overwhelming fatigue are my biggest dreads when I go into a flair. aren’t there some success stories with ra?

Lots, really.  Like Gloria Basford whose life returned to normal using Enbrel.  Harv and others are almost there with Enbrel and Arava.  Celebrex and Vioxx have helped others.  Methotrexate, originally a cancer chemotherapy drug, is very effective as a DMARD.  MTX and Remicade, originally used for Chron’s Disease, are a combination that is working for many who were not helped by any of the others.  Lots of us have high hopes for Anakinra and a few others due out soon.  Since Tina, Kitty & I have tried all the rest with no positive results we are among those waiting and hoping.  The future is very bright for those diagnosed with RA today versus those with a diagnoses dating back just 5 or 10 years.  We’ve come a long way from the days of three dozen aspirin to stop inflammation while getting stomach ulcers as the price for that treatment. — Be Well, Larry — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

is ra controllable?

For some of us.  I am on Remicade and have been doing really well, the trick is early aggressive treatment and a little luck. why do some people get worse and have surgeries?

Historically, it was treated worth a darn until the damage was done.  Now the trend is early treatment.  However, not everyone responds to the meds and some folks have more aggressive RA than others. isnt there anything they could do to prevent surgeries?

Again, early aggressive treatment is essential but not everyone will respond to the meds. when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped? inflammation?

The inflammation needs controlled but the disease processs itself needs controlled. aren’t there some success stories with ra?

Yes, we have several "poster children" here.  GloriaB has been on enbrel since the original studies and is doing great.  We have one member who competes in triatholons.  We one who just rafted the Grand Canyon.  On a smaller scale, I have kept my job and I have recently started painting my kitchen cabinets.  I was diagnosed I guess about 3-4 years ago now.  My RD is very good and have found a medication that works very well for me and there isn’t much that I can’t do. There is life after RA.  Here are a couple of websites that will give you some really good info: http://www.arthritisinsight.com/ http://www.arthritis.co.za/ Learn all you can about it and be a fully informed partner in your healthcare. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success

Wow – I really wish I had your confidence! Jayne

Response:

thanks for all your answers and for Harv that is what I wanted to know and you answered the question about surgery I am not going to get worse or ever go in a hospital, pain free is success Wow – I really wish I had your confidence! Jayne

Hi Jayne,   Life, problems, whatever is better lived while being positive.   A person needs to believe that the decisions they make and the things they do ARE going to work best for them.  Proof of this are the results of improvement when a person is receiving the placebo.  We come together and discuss many things here in our support of arthritis and the people that have it.  I make an effort to be as honest as I can be in this newsgroup.  My RA and the medicines that I have worked with over the years have worked well but I still remember the mental anguish of accepting the fact of my having RA.  People need to know that they can still do well in their life and have inflamitory arthritis. Harv

Response:

I don’t know if what I am doing is confidence even though I do have a lot of it but I do many very good things every day for my body and health always have and always will and it shows and it is making a big difference I don’t plan on more meds and more sickness but I do plan on being a success by being pain free besides there is too much to do and I want to be an example of health not sickness thanks

Response:

very well put Harv you are right doing well in life is very important ra has to take a back seat to a happy life

Response:

Wow – I really wish I had your confidence! Jayne Hi Jayne,   Life, problems, whatever is better lived while being positive.   A person needs to believe that the decisions they make and the things they do ARE going to work best for them.  Proof of this are the results of improvement when a person is receiving the placebo.  We come together and discuss many things here in our support of arthritis and the people that have it.  I make an effort to be as honest as I can be in this newsgroup.  My RA and the medicines that I have worked with over the years have worked well but I still remember the mental anguish of accepting the fact of my having RA.  People need to know that they can still do well in their life and have inflamitory arthritis. Harv

Oops – I just re-read what I posted and realised it sounded sarcastic.  I truly didn’t mean it to though – I really do wish my outlook would turn round to a more positive one.  I’m still off work sick after 12 weeks, and going nuts being at home.  My manager is trying to sort out a job for me that won’t involve standing all day, and she is such a nice person, but I am still waiting to hear about it.  They say life begins at 40, and I really hope there’s some truth in that!  Roll on the end of the year. Apologies if my posting sounded somewhat trite. Jayne

Response:

is ra controllable?

I was talking about this with my RD and he said drugs are effective for about 85% of his patients. why do some people get worse and have surgeries?

Early treatment before damage sets in isnt there anything they could do to prevent surgeries?

Early aggressive treatment before the damage occurs when people mention medicine being the thing that limits arthritis, what is it that needs to be stopped?

inflammation and slowing down that over active immune system inflammation? aren’t there some success stories with ra?

My treatment has been a success.  Not a single surgery and I have an extremely active lifestyle.  I am the one who rowed the Grand Canyon this summer.  I take anti-inflammatories only on an occasional basis. — MZ — website: http://members.home.net/mzuschlag

Response:

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