Re: Kids and teens with RA with Lung Involvement

[Guest guest]

Hi Becki, yes I do. The pulmonary doc calls it right middle lobe syndrome.

That is where the red cells like to become inflamed in me. It brings on bouts

of pheumonia and plurisy if I get a cold or sinus infection. He puts me on

antibiotics and fixes me right up. There are times when my chests aches just

like a joint does. I don't run fevers like a normal pheumonia person would

because the meds help mask the symptoms. Take care, hope this helps,

Carolyn

[Guest guest]

Becki,

I don't know exactly what is going on with Tas, but she has been hospitalized with lung involvement. She has trouble breathing, but doesn't have allergies or asthma. Her lips turn blue at times and she has sleep apnea. We are still trying to figure it out. On her x-rays she does show something with her lungs, but the doctors are still puzzled.

Love to all,

Casaria

[Guest guest]

Becki:

My son was diagnosed with juvenile ankylosing spondylitis in May. He has always had poorly controlled asthma. The asthma doc is thinking that he either has a restrictive component to his asthma (inflammation in ribs, etc) or interstitial lung disease. He is going for some pulmonary function testing on Wednesday to figure this out. Our asthma/allergy doc will refer him on to a pediatric pulmonologist if his PFT's are abnormal. I'll be sure and keep you posted on the results.

Best wishes,

and Rob 13 jas

[Guest guest]

Hello

I don't know how many of your know this but RA CAN cause what is called Rheumatoid Interstitial Lung Disease...most often called Non-Specific Interstitial Lung Disease. Its much less severe than typical Pulmonary Fibrosis but Kids and Teens with ILDs have different symptoms than adults and also ILDs are such a pain in the rear end to Diagnose. It take a lot of Well...not so pleasant ...testing.X-Rays are non-specific and can even be normal.PFT's usually show a restrictive pattern ( LOW FVC and DIffusion Capacity) High Resolution CT scan is the best indicator.....

Then they do stuff like bronchoscopies and Biopsies....I know this sounds scary but if your child is having ANY of the symptoms of an ILD...I will Copy an article under my post that you can read PRETTY please try to get to the bottom of it.... If your child doesn't go to a Childrens hospital that might be where they need to go.....

Also The best centers for it are Childrens Hospital in LA , Texas Childrens Hospital, and National Jewish Medical Center.....

I just went my whole life not knowing and well my poor lungs paid the price.....I will send a seperate email with the info...it would be to long for one email in this letter.....

Becki

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[Guest guest]

Hello

Have them do a HRCT Scan and a PFT's with Diffusion Capasity....if its low it may raise a RED flag.....

Becki

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[Guest guest]

Becki:

is having a PFT with diffusion capacity on Wed. I'll remember to ask about the HRCT. Thanks so much! I'm going to print out your article too..so I can keep for reference. Thanks so much!

and Rob 13 jas

[Guest guest]

NO PROBLEM...Most docs aren't used to seeing it in people under 40 so its really hard for it to be Dx...

Becki

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[Guest guest]

Hi All!

I too have been busy Vacation Bible School, vacations etc...not off THIS list...

I was just wondering about the comments with the asthma issue...

wakes up in the middle of the night needing her inhaler (depending on the time of year) just to be able to relax and go back to sleep..

Should I get her a pulmanary function test too?

Have a sunny day!

Carol and (15 JAS)

[Guest guest]

Becki

has chest pain the doctor says its due to Arthritis in the ribs they keep EKGs on her also she also has Asthma Robbin

[Guest guest]

Hi

Most probably do have that but Metho and RA can cause the ILD's.... A PFT with Diffusion capacity is a good first step....

Becki

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