Cystic Fibrosis

Discussion in 'Professionally Qualified, RAMC and QARANC' started by DARKCIDER, Aug 12, 2006.

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  1. Have any of you guys come across a serving soldier who has a child with CF? I have a daughter with CF and have been told I am the only one! I find this very hard to believe. Or would you know how I can find out? I have tried AWS but they could not help nor could SSAFA!

    Many thanks :D
     
  2. I am sorry that your child has CF - I really really hope that all goes well with your coping strategy with the disease. I do know of other Service Personnel out there with CF children, but of course we cannot share names due to confidential issues.

    May I suggest you contact a CF help site (I think there are two, but I do not have my books to hand and am too much of a technoprat to open one search window whilst operating in another!) and put out an appeal through them?

    What are the specifics that you need to know? If you have contacted SSAFA, I am sure that they have done their best to assist. If it is about availability of postings etc, I am sure your SMO can also assist.

    Thinking of you xxx
     
  3. I am sorry that your child has CF - I really really hope that all goes well with your coping strategy with the disease. I do know of other Service Personnel out there with CF children, but of course we cannot share names due to confidential issues.

    May I suggest you contact a CF help site (I think there are two, but I do not have my books to hand and am too much of a technoprat to open one search window whilst operating in another!) and put out an appeal through them?

    What are the specifics that you need to know? If you have contacted SSAFA, I am sure that they have done their best to assist. If it is about availability of postings etc, I am sure your SMO can also assist.

    Thinking of you xxx
     
  4. Many thanks for your reply. I am curious to find others as both me and my husband are serving and our situation is unique. We have been very fortunate with both our Corps (Int and APTC) with regards to postings. Obviously we can only be posted near a CF hospital. It would be nice to share experiences with other soldiers. How many do you know of? :D
     
  5. Darkcider,
    My daughter too has CF and I'm totally willing to help in anyway I can. I'm just a humble TA nursing officer and my wife isn't in the services but I can tell you a few things about how we coped.

    First, get the most up to date information you can. Our girl, Sarah, was diagnosed at about 3 months after failing to put on weight. The only childrens nursing I had done was in my training so I wasn't that well informed. Hence I went to the libarary. Be careful. Even books that are a few years old are quite dated and less optimistic than the present. Read nothing published or updated before 2000.

    Of course every child is different but we found that after the initial shock, we settled into a routine. The physio and medication were just part of it, like brushing teeth. Now Sarah is 9 and very well. Yes, she gets chest infections but so far, nothing awful. Most of these are viral and antibiotics are oral and just to give cover to prevent the (more damaging) secondary bacterial infections. She has only needed IV antibiotics once (for MRSA) and mercifully I was able to give them at home.

    Top tip: hospitals are nasty dirty places full of sick people. I found it better always to try and care for Sarah at home. It can be done with help from community childrens nurses. Also, even getting up in the night to give IVs was less draining than living at/traipsing up to the hospital all the time. It is quite possible to be taught to give medications. Just be a bit pushy.

    Of course things like this are in a way more difficult if you both have a service career. Even when I was called up for Telic though my wife coped very well, which you can if you get the support. As service personnel you have one advantage - the cameraderie of the services. Don't be afraid to use it. You will find that people really want to help they just don't know how to go about it.

    Top tip 2: make sure you have care in a specialist unit. We go about twice a year to Birmingham sick kids hosp for the full MOT but in the mean time we have 'shared care' with Staffordshire hospital in our home town of Stafford. This is a good compromise. We also have a specialist CF nurse who calls in to do some of the check-ups.

    Top tip 3: fight back! I personally took the diagnosis very badly but found great strength from fund-raising for the Cystic Fibrosis Trust (http://www.cftrust.org.uk). They are also an invaluable source of up-to-date information and contacts that can give support. I took up marathon running to raise money but you don't have to do that. Remember, meeting with other parents of kids with CF is great. However, it is normal to keep the kids themselves apart because of the risk of cross infection.

    We susequently had a second child. He was tested for CF in utero and he got the other 1 in 4 chance and isn't even a carrier of the gene.

    My real name is Ian. I am a lecturer at Staffordshire University and you can e-mail me on i.h.spencer@staffs.ac.uk

    Very best wishes to you and your familly.