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Thread: Felix's Mystery Respiratory Condition

  1. #1
    katanya Guest

    Default Felix's Mystery Respiratory Condition

    I thought I'd post in here as now I know there is definately a "something" just not sure yet what it is!

    Had a bit of a nigtmare in the RCH parking on the 7th floor and it has NO lift, so had to run down the ramps, tried the stairs and the wheel of my pram came off and I nearly satrting crying becaise I thought it was broken, but luckily I was able to put it back on! I mananged to get there in perfect time (thanks Christy for reminding me )

    Well yesterday was Felix's appointment at the Respiratory Specialist at the Royal Children's Hospital in Brisbane (so the best person in the state to work out what is going on) and after examinations, asking me a million questions about my pregnancy Felix breathing and illnesses, another chest Xray, an oxygen monitor etc. (all over a couple of hours) He told me that it is still a mystery, and more tests will be needed.

    What we do know is:
    • It's not asthma the noise in his chest isn't wheezy (that would be easy to treat apparently)
      There is a crackling in his lungs
      It's making him work hard to breathe and therefore affecting his weight gain
      He said it is a respiratory condition that is either viral or congential (he suspects either contacted shortly after birth or born with it) what the treatment is requires a diagnoses, which we don't have yet.


    The next step is to totally eliminate all the things you can test for with minimal intervention, and then if nothing comes back then the next step will be a Brochialoscopy (tube down throat under general antisthetic) and a CT Scan at the same time. If nothing discovered there then a lung biopsy would be needed 8-[

    Because Felix is doing okay (apart from the weight gain) the next time I will see him is in 5 weeks, were we will see a Cardiologist (just to totally rule that side out before we go down the invasive testing lines) and then discuss with the next step with the Respiratory Specialist.

    I initially was very against the idea of a the brochialoscopy, especially while he is doing okay, and I said I'd talk it over with DP, he is also not happy about it, but as I talked about it with family I thought perhaps if we identify it while he is NOT majorly affected by it.

    His growth is being affected as he has only grown 2 cms in 2 months and is now below his height line. We have been prescribed Glucuse Polymer which is pure carbohydrates to add to his food, to increase the KJ's, which is great as it doesn't mena he has to eat MORE just pump up the K's of what he does eat and I can add it to custard

    The specialist spoke very positively about treament with the conditions he is looking at, like steriods that they use for asthma and things like antiinflamatory drugs..that may possible keep it under control..I really hope we aren't heading for a life time of drugs because they also have other effects.

    Felix had a wonderful time in the RCH, all the dangly things and bright clours, and charmed the pants off all the nurses and Doctors, only crying when they held him down for more blood tests, I wore my Felix the cat T-shirt and we were called "team Felix" don't think I'll be doing that again

    Anyhow, we get the results to blood tests he has had back in 2 weeks at the Gold Coast Hospital, and then we'll have to wait to see where we head from there!


  2. #2

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    Best of luck that they find something soon Katanya!

    I was on steriods from a young baby until i was 8yrs old (I have no muscles) Due to asthma, bronchitus, ongoing bouts of phneumonia etc, etc!
    I guess I am Ok, I am the shortest in my family, but hey I can live with that!!!!

    Big Kisses to Felix & hopefully he will be putting on weight nicely soon...

  3. #3

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    Oh thats so hard! I was hoping for some answers for you yesterday. I'm glad you got there on time though . Its good that things don't have to be done straight away and you have time to discuss with DP & family and choose your options as what is best for Felix. Its so scary too! But thats great news about adding the kj's and not having to force feed more stuff into that beautiful boy of yours.

  4. #4

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    Katanya

    I am so glad that Felix is going well and that the specialist is trying everything to see what may be wrong with your beautiful little boy.

    I guess, as hard as it is to do and process, the Brochialoscopy and other tests may help to let you know not only what might be affecting Felix, but let you know if there is any risk to you and your future children having the same condition.

    I know that it is easy for someone that is removed from the situation to say something like that, and I am sure that you have already thought of such things.

    You are doing such an excellent job raising your gorgeous boy and I am sure it is so hard taking him to so many practitioners.

    Please know that I am thinking of you and hope that minimal treatment is needed.

    Best of luck and best wishes

  5. #5
    mama mel Guest

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    Hi Katanya,

    So does that mean it's possible that it's just something viral or a infection that they can clear up and get rid of? From what I could gather, that's still a possibility... I'll definately be [-o< for you that it doesn't get to the stage of needing a biopsy to diagnose what's going on!!!

    Glad to hear you found that magic kj additive so you don't need to stress so much about him not wanting to eat!

    Stay strong, I'll be thinking about you and sending you all the positive energy I can.

  6. #6

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    Dear Katanya;

    I'm so sorry to hear that it is a condition that will require treatment, and not just a 'skinny baby' issue.

    At least you know you're at the right place. The Children's Hospitals are really the best place for kids with health issues.

    And you've caught "it" (whatever "it" is) early, so at least you can get on with the recommended treatment after diagnosis, and Felix will have a normal healthy life.

    Best wishes, and my prayers will go out for you.

  7. #7
    katanya Guest

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    Thanks for your thoughts everyone, I actually felt better last night than I did before for some strange reason, I guess it was that finally there was a definate answer about the fact he has a "something" and it wasn't just my imagination that it was more than the amount going into his mouth (IE my breastmilk supply) making him lose weight, sometimes the total unknown is worse than when you are told there is something...I think too the feeling of blame I was subconciously putting on myself was lifted.

    I wondered if somehow my stubborness to continue breastfeeding etc was contrubuting to his low weight, now I know that what I felt was right and it is more than that, very happy I trusted my instincts, because I believe that BFing him now especially is the very best thing to help an illness of this nature.

    yes mel there is still a possibility that it is something that can be cleared up or treated and gotten rid of, because some viruses lay undetected but are quite strong IYKWIM? I think the Specialist is leaning towards a more long term rare respiratory condition but he seems quite optimistic that it would respond to treatment.

    Kelli I agree with what you are saying and the more I think about it, I believe understanding what is going on is important. The specialist asked all about family histories to see if there was a flag to start investigations.
    Also the general and bronchialoscopy wouldn't probably be as bad it is first seems, I am just terrified of doing these tests and putting him through it to the find nothing again..I wonder how many we'll have to do?

    Anyhow I have told DP to take the day off next visit up there so we can make the decision together and DP can listen to what the Specialist thinks so it's not just me relaying information.

    Thanks again for listening!

  8. #8

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    Hi Katanya,

    I have to say that I think you are amazing. You are taking everything in your stride and sound so positive, which is awesome. (I truly believe in the power of positive thinking.)
    I'm so glad to hear that you are feeling better about yourself and the bf'ing issues, and are not blaming or doubting yourself anymore. Its just so true about mother's instincts... good on you for sticking with yours

    And HOORAY for being able to add carbs straight into Felix's food, that must be such a relief after all of the stress about how many kj's he needs to be consuming.

    I will have everything crossed that when they do find out what the problem is, that it is something easily treatable, and he will not need any invasive procedures.

    Best of luck and best wishes... and please give your adorable little sweetie a cuddle from me

  9. #9

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    All the best Katanya, I will be thinking of you and Felix - he is such a beautiful little boy!

  10. #10

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    katanya

    Just wanted to let you know that if you do have to go down the bronchialoscopy path, it's not too stressful and invasive. My son had one to investigate his vocal chords when he was one, and apart from the little fast he had to do, he was ok with the whole thing... a bit disoriented when he woke up, and very thirsty, but soon settled down with lots of cuddles.

    he didn't have any reaction to the anaesthetic or even any signs of a sore throat after it.

    So even if he does have a bronchialoscopy, he'll be ok (I think it's tougher on the parents, IKYWIM

  11. #11
    katanya Guest

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    Mistyfying thanks so much for that reassurance about the bronchiloscopy, I think the thought of it scares me more than anything. I am not sure how he'll go with no feeding how long do they have to fast for?
    DP and I talked again about it and DP has a fear of doctors so it's not great when we have to deal with so many. I want him to see first hand what is going on, so he feel reassured that Felix won't expereince what he did as a child (has had many bad expereinces and hates going to the doctor now) I don't want felix growing up like he did and having a fear of hospital and doctors!

  12. #12

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    Glad for you all that you are on the road to discovering what Felix has, and hope the answers come soon. I agree with your mother's instinct thing, and you need to keep trusting yourself in know ing when things are good or not.

    The Children's hospital id definetly the place to be, and whatever they can do to get to the bottom of the mystery is probably worth doing, although these things are stressful, esp for us parents, bt stay positive and know that the best thing you can do is be there with loads of hugs and kisses for your darling son.

    Best wishes Michelle

  13. #13

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    Katanya in Zeke's case he had to fast from midnight, and he was scheduled to go to theatre at 9am (he was held up because an emergency came in, so actually fasted until 11am when they put him under.) By the time he woke up after it all and felt like eating, I think it was about 12.30pm

    Zeke's was done at the Royal, too. They were excellent. They have a little kid's play room on the ward, where they can wait and play before they have to get ready to go down to theatre. The staff were really helpful and friendly, and genuinely seemed to care that it was quite a stressful time for the parents (even though they probably thought it was a very minor thing...)

    Hope that helps.

  14. #14
    katanya Guest

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    mistyfying: thanks for that info, Felix is only 8.5 mths old and still feeds through the night, not sure how we're going to stop that one~! did you drive down from the sunshine coast or did he stay on the ward? Otherwise I might stay overnight with him in Brisbane, because I am not sure how we'll go with a 1 hour car trip when he hasn't been fed!

    The staff at the RCH are absolutely amazing, and there are millions of volunteers running around everywhere keen to help, a bit of a change from the overrun Gold Coast hospital!

  15. #15

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    You guys are welcome to stay here! The whole fam.... its a bit of a mad house, but I'm sure Felix will love the dogs

  16. #16
    katanya Guest

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    Thanks Christy that is a very generous offer, we might take you up on it if it ends up happening yes and dogs might just take his mind off the hunger factor, only problem is he might wake up everyone in the early morning without his BB

  17. #17

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    We were living at Caboolture at the time, so it was about a one hour trip in for us.

    I just lined up some of his favourite toys, music etc for the car ride in and thankfully it worked as a distraction.

  18. #18

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    We're up at 6am anyway

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