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thread: Felix's Mystery Respiratory Condition

  1. #181
    BellyBelly Life Subscriber

    Nov 2003
    Kilmore Vic

    Thinking of Felix today and hoping things went well and you finally have the answers to what is wrong with your ds.
    Cheers michelle

  2. #182
    katanya Guest

    Hi everyone,
    Thanks for all your well wishes and prayers, they must have done the job because he went through all it very well and is even home earlier than expected!!

    They told me beforehand they had booked him into the ICU(Intensive care unit) after last time (complications after the anthestic) and he'd be there if they wanted to moitor him more carefully.

    When he was done they told me he was in the ICU, so I went down a bit worried something had gone wrong, but they said they were just monitoring him as he had some sugical ephesemia(bubble of air under the skin) The biopsy itself went very smoothly, no complications at all. He woke up crying but was able to have a breastfeed after an hour..all the machines in the ICU were pretty scarey but you get one on one nursing so it's a great place to be for that. We were told after a few hours he could go back to the ward, he didn't want to leave my arms, but eventually had a sleep in the cot (I was scared to sleep with him due to his surgery) He had a few bubbles in his chest but they weren't anything to worry about..

    Next day we was up and walking around the ward again, he charmed the pants off all the doctors and nurses, made lots of new friends and had a visit from Ambah, Jackson and Aidyn! all in all a great time!
    Much better than I anticipated..after all this build up!

    So now we have to wait for a week or 2 for the results to come back, they have to analysed by a specialist, so not just a case of sending it to any lab..fingers crossed everyone we get an answer!

    Yay it's good to be home and have it all behind us!!

  3. #183
    BellyBelly Member

    Feb 2004

    Katanya, I am so glad to hear it went well and that you are home already, that is fantastic. Big hugs to Felix - what a good, brave boy! And my fingers are crossed for you that you get an answer soon!

  4. #184
    BellyBelly Life Subscriber

    Nov 2004
    Chasing Daylight...

    Katanya I'm so pleased for you! I just dropped in here not expecting you to have posted... but wow! Felix has done so well.

  5. #185
    katanya Guest

    yep it was much smoother than expected, I guess after last time, the way he reacted with a lesser procedure .. about time things go well for us!

    Here are some photos of us in him in hospital (a few just before) as you can see he now has some succulent thighes! he is now 9.5 kgs!!!! Lets hope we can keep the weight on now the tube is gone!

    There are some of Ambah and Aidyn too!

    Felix in RCH'shttp://share.shutterfly.com/osi.jsp?i=EeANmzVqzaMmzE6A

  6. #186
    BellyBelly Member

    Aug 2003
    Melbourne, Australia

    Great news Katanya! I hope you do get an answer. Felix looks fantastic after his procedure. The photos are so gorgeous. The boys look like they will be great friends.

    Oh and 9.5kgs, Woo Hoo!!!!!

  7. #187
    BellyBelly Life Subscriber

    Nov 2003
    Kilmore Vic

    Excellent news all round, esp on how big your darling boy is, WTG!

    Fingers crossed for good news from the tests,
    best wishes michelle

  8. #188
    BellyBelly Life Member

    Jul 2004
    House of the crazy cat ladies...

    I'm so glad that everything has gone so well for little Felix, Katanya. And like I said before, he is looking fantastic & healthy, and is SUCH a little cutie pie!
    They are lovely photos too

  9. #189
    mama mel Guest

    That's wonderful news Katanya!

    Hoping this holds all the answers for you now too

  10. #190
    BellyBelly Life Subscriber

    Oct 2003
    Forestville NSW

    Such great photos! He looks fantastic, as does Aidyn...how cute they are!

  11. #191
    *Yvette* Guest

    Great pics Katanya. Felix looks well and happy! So glad it went well. Love the little doggy at the hospital, & Ambah & Aidyn there too!

  12. #192
    BellyBelly Life Subscriber

    Feb 2005


    Fantastic news about Felix. He really looks wonderful.

    Love the photos of you guys, Ambah and Aidyn.


  13. #193
    katanya Guest

    We had the long awaited biopsy results today..

    well it was good news firstly because the inflamation on his lungs in minor, and the piece of lung they sampled contained no scarring.

    Unfortunately they were unable to determine a cause. The positive is they have identified it as fibrostic pneumonitis, which he could either grow out of in the next few years or by the end of childhood (with a chance that he will always have a vunerability there)

    They are still unable to rule out completely the posibility of autoimmune conditions, at this stage, there are more tests, but they will wait for other symtioms to present themselves for those to be taken..

    Hi current state ogf health is good, with the crackles (inflamation) in his lungs is still there as usual, obviously winter is going to be a difficult time for him as he is very vunerable to have a significant reaction to normal viruses..

    The next step was determining whether we would start on a trial of corticosteroids or not.. the specialist explained that the sucess was not guaranteed, with this sort of condition. He was incinded to believe Felix was improving on his own and perhaps with his health being so good curretly that perhaps we should just sit tight and keep a track of him. he asked my opinion. I agreed that his health (appart from the breathing rate and oxygen requirement) was good, and the steriods have nasty side efefcts that using them when we may not even see results (minimum course of 2 months) seems pointless when he is doing better without anything.

    We are going back in a month for a sleep study to see what his oxygen levels are doing at night and we get to stay at the lodge(accomodation near the hospital) instead of being admitted YAYAYAY!!! I got the shivers being in the hospital again today..SO glad we dont have to stay in there again..Dr Francis's reason was to avoid Felix catching anything from the other patients!!

    Anyhow..no cause, but more info which makes it all easier to take in..

    Basically I have learnt that I just have to learn to take things as they come, there is not going to be a definate answer about this one.

    What his breathing will be like as e gets older is uncertain, the only thing I am still sure of is that we'll be able to deal with it!

  14. #194
    katanya Guest

    I thought I'd post an explaination of interstatial lung disease, because it's not really something you come across everyday.


    Interstitial Lung Disease (ILD) is a general term that includes a variety of chronic lung disorders. When a person has ILD, the lung is affected in three ways. First, the lung tissue is damaged in some known or unknown way. Second, the walls of the air sacs in the lung become inflamed. Finally, scarring (or fibrosis) begins in the interstitium (or tissue between the air sacs), and the lung becomes stiff.

    Breathlessness during exercise can be one of the first symptoms of these diseases. A dry cough also may be present. These are common symptoms that many people ignore. Someone with these symptoms may wait until they feel quite ill before going to the doctor.

    People with different types of ILD may have the same kind of symptoms but their symptoms may vary in severity. Their chest X-rays may look alike. Further testing is usually recommended to identify the specific type of ILD a person has. Some ILDs have known causes and some (idiopathic) have unknown causes.


    The tissue between the air sacs of the lungs is called the interstitium. Interstitial lung disease is named after this tissue because this is the tissue affected by fibrosis (scarring). Interstitial lung disease is sometimes also known as "interstitial pulmonary fibrosis." The terms interstitial lung disease, pulmonary fibrosis and interstitial pulmonary fibrosis are often used to describe the same condition.


    The course of these diseases is unpredictable. If they progress, the lung tissue thickens and becomes stiff. The work of breathing then becomes more difficult and demanding. Some of the diseases improve with medication if treated when inflammation occurs. Some people may need oxygen therapy as part of their treatment.

    The diseases may run a gradual course or a rapid course. People with ILD may notice variations in symptoms -- from very mild to moderate to very severe. Their condition may remain the same for long periods of time or it may change quickly. It's important to stay in touch with your doctor and report any changes in symptoms. You and your doctor can work together to manage ILD.


    While the progress and symptoms of these diseases may vary from person to person, there is one common link between the many forms of ILD. They all begin with an inflammation. The inflammation may affect different parts of the lung, as explained below:

    1. The walls of the bronchioles (small airways). When inflammation involves the bronchioles, it is called bronchiolitis

    2. The walls and air spaces of the alveoli (air sacs). When inflammation involves the alveoli, it is called alveolitis.

    3. The small blood vessels (capillaries) of the lungs. When inflammation involves the small blood vessels, it is called vasculitis.

    Inflammation of these parts of the lung may heal or may lead to permanent scarring of the lung tissue. When scarring of the lung tissue takes place, the condition is called pulmonary fibrosis.

    Fibrosis, or scarring of the lung tissue, results in permanent loss of that tissue's ability to transport oxygen. The level of disability that a person experiences depends on the amount of scarring of the tissue. This is because the air sacs, as well as the lung tissue between and surrounding the air sacs, and the lung capillaries, are destroyed by the formation of scar tissue. If this happens, your doctor may prescribe oxygen to help you breathe easier.


    Several causes of pulmonary fibrosis are known. They include:

    1. Occupational and environmental exposures. Many jobs - particularly those that involve mining or that expose workers to asbestos or metal dusts -- can cause pulmonary fibrosis. Workers doing these kinds of jobs may inhale small particles (like silica dusts or asbestos fibers) that can damage the lungs, especially the small airways and air sacs, and cause scarring (fibrosis).
    Agricultural workers also can be affected. Some organic substances, such as moldy hay, cause an allergic reaction in the lung. This reaction is called Farmer's Lung and can cause pulmonary fibrosis. Other fumes found on farms are directly toxic to the lungs.

    2. Sarcoidosis. A disease characterized by the formation of granulomas (areas of inflammatory cells), which can attack any area of the body but most frequently affects the lungs.

    3. Drugs. Certain medicines may have the undersirable side effect of causing pulmonary fibrosis. Check with your doctor about the medicines you are taking and ask about any possible side effects.

    4. Radiation. (treatment for breast cancer)

    4. Connective tissue or collagen diseases such as rheumatoid arthritis and systemic sclerosis.

    5. Genetic/familial. This is not as common as the other causes listed.

    When all known causes of interstitial lung disease have been ruled out, the condition is called "idiopathic" (of unknown origin) pulmonary fibrosis (IPF).

    There are several theories as to what may cause IPF; including viral illness and allergic or environmental exposure (including tobacco smoke). These theories are still being researched. Bacteria and other microorganisms are not thought to be the cause of IPF.

    There is also a familial form of the disease, known as familial idiopathic pulmonary fibrosis. Additional research is being done to determine whether there is a genetic tendency to develop the disease, as well as to determine other causes of IPF.


    Shortness of breath is the main symptom of idiopathic pulmonary fibrosis. Since this is a symptom of many types of lung disease, making the correct diagnosis may be difficult. The shortness of breath may first appear during exercise. The condition then may progress to the point where any exertion is impossible. If the disease progresses, the person with IPF eventually may be short of breath even at rest.

    Other symptoms may include a dry cough (without sputum). When the disease is severe and prolonged, heart failure with swelling of the legs may occur.


    A very careful patient history is an important tool for diagnosis. The history will include environmental and occupational factors, hobbies, legal and illegal drug use, arthritis, and risk factors for diseases that affect the immune system. A physical examination, chest X-ray, pulmonary function tests, and blood tests are important. These tests will help your doctor rule out other lung diseases and determine the extent of disease.

    Bronchoalveolar lavage (BAL) -- a test which permits removal and examination of cells from the lower respiratory tract -- may be used to diagnose IPF: this test helps a doctor identify inflammation in lung tissue, and also helps exclude infections and malignancies (cancer) as a cause of a patient's symptoms. The test is done during bronchoscopy, a special examination of the lung.

    Lung biopsy --Either done during bronchoscopy or as a surgical procedure that removes a sample of lung tissue for your doctor to study -- this proceedure is usually required for for diagnosis of IPF.

    Diagnostic Tests That May Be Used to Identify Pulmonary Fibrosis or Interstitial Lung Disease

    1. Blood Tests

    2. Pulmonary Function Tests

    3. Chest X-ray

    4. CT Scan

    5. Bronchoscopy

    6. Bronchoalveolar Lavage

    7. Lung Biopsy

    8. CT Scan


    Corticosteroids may be administered to treat the inflammation present in some people with IPF. The success of this treatment for many forms of pulmonary fibrosis is variable and is still being researched. Other drugs are occasionally added when it is clear that the steroids are not effective in reversing the disease.

    Some doctors may use corticosteroids in combination with other drugs when the diagnosis is first established. Which drug treatment plan is effective, and how long to use the drugs is the focus of current research.

    Oxygen therapy may be prescribed for some people with IPF. The need for oxygen will be determined by your doctor and may depend on the severity of disease, as well as your activity level. Talk with you doctor if you think you may need oxygen or if you have concerns about oxygen.

    Influenza vaccine and pneumococcal pneumonia vaccine are both recommended for people with IPF or any lung disease. These two shots may help prevent infection and keep you healthy.

    Lung transplantation may offer hope for selected people with severe IPF and other lung diseases. Speak with your doctor about eligibility criteria for lung transplant recipients.

    Rehabilitation and education programs may help some people with IPF. Local support groups have been of benefit for people with IPF and their family members and friends.

  15. #195
    BellyBelly Life Subscriber

    Nov 2003
    Kilmore Vic

    Yay katanya,

    that is some really good news and I bet you guys ae feeling so much better. Although there is actually no definitive answer it lets you know where you stand and that's great. Fingers crossed that Felix stays healthy and avoids the lurgies this winter cos that would be a bonus.

    Again super news and hugs to you all, and you can deal with it together, you have done a wonderful job that's for sure.
    Best wishes Michelle

  16. #196
    katanya Guest

    Did I read correctly, did you say that he will probably grow out of it over the next few years or by the end of childhood? How good is that to hear?
    Yeah he said children with this sort of thing often grow out of it..that is if it's not an autoimmunity condition..I guess there are still possibilities of worse things but for now, he's doing great and I have to focus on that, and there's every possibility that it will heal on it's own without drugs

  17. #197
    katanya Guest

    Give him a big hug for me!!!
    will do!

  18. #198
    BellyBelly Member

    Aug 2003
    Melbourne, Australia

    YAY FELIX!!!!!

    Katanya that is great news. Especially if it is something that he grows out of. I guess the main thing now is to keep Felix healthy and for everyone concerned to keep an eye on his progress. But sounds positive.

    I found the ILD info very interesting.

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