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My gorgeous girl and her CPAP

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  • My gorgeous girl and her CPAP

    Hi all. I am so glad I have found somewhere to ask questions of you guys. My daughter was diagnosed with OSA when she was 4. We always knew something was wrong - surgery on adenoids and tonsils made no difference. After sleep studies she was trialed with CPAP. Her way of coping was to hive it a name and decorate the face mask with eyes, moustache and other features. She called it 'william'. She immediately started wearing it through the night from the first night. We were very lucky. It was almost like she couldn't carry on anymore and was glad of help. She is now 6 and continues wearing William without too much problem. She is now having learning problems at school and is so short or concentration. I feel she was so sleep deprived at the crucial young stages that she has not laid down the basics she needs to learn. Has anybody got any experiences with this? She is a beautiful and courageous little girl but I do worry about her future development. She also has constant snot due to rhinnitis- this can interfere with CPAP doing its job. Any good ideas how to clear blocked nose. She already has antihistamines and nasal steroids but this is not managing the problem. This is the first time I have written about her and I feel quite emotional- so sorry for the outpouring. Maybe it has been long overdue:-)

  • #2
    Hi Claire,
    Welcome to the site. I do not have the answers you are looking for but I am sure someone on here can help.
    I have not had the problems your daughter is suffering from but I am sure James at Intus can tell you whether the sinus wash is suitable for children.
    My thoughts are with you and your lovely daughter.
    Take care
    Lorraine
    APAP: F & P Iconaax auto
    Masks: Resmed Swift FX, Sleep Weaver, Mirage Liberty and most other makes and models.

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    • #3
      Hi Claire,
      I would not use nasal irrigation on a young child without first consulting a doctor. Both the Sinupulse and Neilmed systems state that the user must be fully aware of what's going on. The sensations, while not painful could be quite frightening for a child.

      All the best.

      Pete

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      • #4
        Brave Girl

        Hi, I too do not recommend any washes of the sinus area of a child. As long as she has been treated for the drainage of her nose and its not working--- You might want to start thinking about things she might be allergic to. Children can be allergic to a lot of things. You might want to take her to a Dr who handles allergy tests to be tested for the things that children are commonly allergic to, and see if anything comes up. Some things could be dust mites, milk, nuts and peanut butter, eggs, etc. Its worth a try. I have a grandson who can't drink cows milk. He had to be raised on goats milk, since his mother was not Breast Feeding him. He's a fine strong young man now--works for an oil field in Wyoming USA. But it was difficult to figure it out when he was a baby. I wish you luck, Berneta

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        • #5
          Completely agree about the allergies-every major hospital should have a children's allergy specialist. Go to your GP for referral.

          With regard to the learning speak to your school. If they have noticed this they should put her on special needs register and look at the support she needs. You may want to mention this to your GP too as he might refer you to a paediatrician for this as well.

          You might be right - the lack of quality sleep during early years may have affected your daughters brain development but brains are wonderful things and with the right kind of stimulation and support can recover very well.

          I am Mum to 2 special needs children who had issues in their early years and also a school nurse so speak from an experience base and a professional.

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          • #6
            I Know It's Hard

            Hi Claire
            Where do I begin? This could be a long one so please bear with me while I shrink it to start. I met my partner who has MS and other complication and she became pregnant, pregnancy went ok till we were told her kidneys were not working,(Missing one & one not working well) first signs of problems. She was born december 2001 (Girl) We were told on Christmas day that she was going to die, so we waited for it to happen but it didnt. She finally came home at the end of february, shed had a brain bleed, blindness in one eye, pnuemonia I.P. 1 kidney, C.P. and other things that they didnt know as no one has had them before.

            Now she's 9, she has lots of behaviour issues. I spoke at length with specialist who told me how it would pan out over the years and it did. My daughter spent months in an incubater wired up to all kinds of machines and when she finally came home I cant tell you how happy we was. Over the comming months the norm went out the window, she never crawled, she never walked when she was suppose too and so on. I was told that she is several months behind her age group due to the problems she had as a baby she has learning difficulties and I beleive that Im going to put her a year back at school at some point. She has no attention spam and throws major wobbles when she cant grasp things that her friends are doing. Im still trying to teach her how to tell the time and its going slow, money is another hugh problem with her she just cant grasp that yet we can sit down together and do all kinds of difficult sums for her homework. I know how fustrating it can be for both of you. I sometimes have to walk outside to howl at the moon so to speak but not often as I am quite laid back. Your daughter may also be behind her actual age due to her problems when she was a child and my advise to you is talk. Talk to the specialist, talk to the sleep docs and any other specialist that will listen, email as well now we have this tool you can find specialist at hospitals in behavioural science and email them and keep asking questions untill your happy with what they are telling you and you find piece of mind. Im still asking at any opportunity I get about my daughter and what the future will bring for her but I guess I can only address an issue when it arrives, so time will tell. She will becoming a teenager in 4 years with more problems to deal with but I think she his made of strong stuff. The only thing I can do is be there for her when she needs me. Hope this helps

            Graham

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            • #7
              Dear Graham, many thanks for your message. I am extremely touched by your story and I am full of admiration for you. Thankyou fur being able to share all that difficult information- it certainly makes me realise hue lucky we are that Maya is otherwise fit and well. Your fight for your daughter makes me realise how small our issues are. I wish you and your family all the very best. Happy Christmas to you, kind regards, Claire

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              • #8
                Originally posted by claire b View Post
                Dear Graham, many thanks for your message. I am extremely touched by your story and I am full of admiration for you. Thankyou fur being able to share all that difficult information- it certainly makes me realise hue lucky we are that Maya is otherwise fit and well. Your fight for your daughter makes me realise how small our issues are. I wish you and your family all the very best. Happy Christmas to you, kind regards, Claire
                Same to you claire, have a good one, glad I could help

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