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Thread: My 7 years daughter is recently diagnosed to have CF

  1. #1
    Junior Member
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    My 7 years daughter is recently diagnosed to have CF

    I am a Pakistani living in Jeddah, KSA.
    My 7 years daughter is recently diagnosed to have CF with pseudomonas in her sputum and positive sweat chloride (3 times)
    Currently she is on pulmicort , Ventolin and hypertonic saline nebulisation .
    And antibiotics .
    Looking for :
    How can I help regarding physiotherapy?
    How can I help her to gain wait ?
    What can be done to prevent nasal polyps?
    What is the role and dose of NAC?
    How can I help her to lead a normal life?

  2. #2
    Administrator
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    Hi Ali,
    Welcome to our community! I have reached out to Christine Noke the head of the https://www.linkedin.com/in/christinenoke/
    the Middle East CF society.
    I think others will be able to help you from this community. We have at least 32 members from Pakistan! Good luck with the healthcare of your daughter!
    Salt and Light,
    imogene

  3. #3
    Senior Member
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    Sep 2016
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    Hey! So to answer your questions
    1) Physiotherapy....what does she use to do airway clearance? Vest? Aerobika? or are you manually doing it? That might help us give you a better answer. But keeping her active and encouraging it is really important. If you can get her to lift weights, that would help too. Muscle weighs more than fat and will help sustain her weight

    2) Weight gain...make sure she takes her enzymes if she needs them. CF patients usually follow a high protein/ high calorie diet. So the more fat there is in food, the better it is for us. Also lots of salt, butter, and cheese. If you can add those to the dish, do it.

    3)Nasal Polyps...they can happen no matter what, but it's a good idea to do sinus rinses with salt water. Keeping your sinuses as clear and clean as possible helps too.

    4)NAC is a vitamin that anyone can take, but it helps keep mucus thin and moving, which is key for CF patients. Her doctor can help with the dose.

    5) As far as a normal life, plan for her future and treat her like a normal kid that she is. I was also diagnosed at 7 (I'm 33 now). The most important thing is to get her into a normal routine with her meds and stick with it. If you make it normal, it will become her normal. Keep her active and using her lungs. That will help strengthen her and her lungs. She'll be able to participate in more activities that way and maintain relationships with people. It will also help people understand that this disease does not define her and that she's able to do great things! Good luck! We are here for you and happy to answer any questions

  4. #4
    Junior Member
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    Jul 2018
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    Thanks for the response

    Good day dear all !
    She is diagnosed with the condition just a few days back...so far I am just doing manual chest PT...hopefully will buy a flutter device soon.
    If anything better available on Amazon please guide me as what I have learnt so far that good chest PT is very important .
    I am trying my level best to get all the possible and available treatments .
    Your message has really given me courage and a positive energy.
    Love n prayers .

  5. #5
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    My son was diagnosed shortly after he was born. We did CPT until he was 3 when we got a vest. We still did manual cpt in the mornings because he wasn't too thrilled with being awakened that way. Plus it was good practice in case something ever went wrong with the vest or there were power issues. Always have our hands.

    I think it's important to be proactive -- getting into a routine and keeping a routine in terms of treatments. He is/was on albuterol (bronchodilator) to open up the lungs during treatments. Because he cultured pseudomonas at 3 months, he was put on an inhalable antibiotic (Tobi or Tobramycin) twice a day, every other month. If he developed a cough, we would increase CPT treatments and he was put on an oral antibiotic.

    His symptoms were mainly sinus related and digestive. CF multivitamin twice a day, extra Vitamin K, E & A as well. He had difficulty gaining weight, so we added fat to everything. Also because he sweated out so much salt, his food was highly seasoned because he craves salt. His nose was always stuffed up as the nasal mucus was so thick, so we'd used saline drops as a baby and when he got older (4) we had him do sinus rinses to clear everything out.

    He pretty much leads a normal life -- goes to school, plays a musical instrument, took swimming lessons, gymnastics, tennis, trapshooting.... He rides his bicycle.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  6. #6
    Adding Budesonide to the saline nasal rinse really seems to help with polyps.
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

  7. #7
    Administrator
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    Ali: I am not sure if this matters for you...I did receive this from Christine Noke of the Middle East CF foundation:
    "I missed that but if its saudi then he doesnt need any help, it has a very high level of care, more so than most of eastern europe and the middle east, they even offer lung transplants. I can find him a dr in Jeddah but my guess he has already seen the very qualified clinician in Jeddah, but what he may not have is insurance and that is something we cannot help with. Most expats from Pakistan or India go back home when they have a diagnosis like this because they get their state health benefits."

  8. #8
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    Kenna2 I was reading your response and had to laugh as you were dxed same age as my son and he is now 33. I agree totally with everything you suggested, actually the post sounded like I wrote it. Have a wonderful night

  9. #9
    Senior Member
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    Sep 2016
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    lol...how cool! I hope he's doing well!

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