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  1. SarahMummy

    So sorry to hear this. Feel so angry and upset for you. Yes the consultant might be busy, but is he forgetting he's dealing with a human being, a CHILD, who is in pain?! Have you tried contacting the media? Sometimes it gives them the kick up the backside they need to actually do something. Good luck!

  2. caroline gill

    Hi Anne, so sorry Star is still going through this and is in pain. Did PALS give you any advice on how to move her treatment forward and quicker? hope you get some help…..would it be worth going back to the gp and asking him for a 2nd opinion or for a referral to GOSH or somewhere else? Love Caroline x

    • Anne Stone Sweet

      Thanks Caroline x I will hear back from PALS tomorrow afternoon and then decide what I'm going to do next. I'm going to my new GP too to try for a referral. Our previous referral to the orthopaedic hospital was cancelled because they said they couldn't help! Ditto the hydrotherapy, apparently it's no good for necks.

  3. @BlueBearWood

    Oh hunny. I can't help you with this but can give my experience of what we did when my daughters heart was failing her and no-one was listening. If she deteriorates or you get worried take her to A&E. They have to do something and can't release a patient unless they have been 'fixed'. Ask for a referral to Guys or GOSH via your GP. Look up who the consultants are at GOSh and Guys and send them an email with a bullet point history of what's happened so far. Kick up a fuss. Go to your GP, use A&E phone everyday. Demand to know what the care plan is. Sadly those who shout loudest tend to be the ones who get listened to. Do not wait for the medical team to make a move. You make them move in to action. Keep a diary, write when you phoned, who you spoke to what they said and flick it all back to them in an email no matter how silly it may sound. If it's in writing they are more careful. Above all never think that you are making a fuss. Trust your self. I was always right in the end and I dread to think what avenues we'd have gone down if I hadn't stuck to my guns xxx

    • Anne Stone Sweet

      thanks for your reply, lots of advice there. I did think of going back to A&E, sadly they were pretty useless when I first took her, they told me it would fix itself in 48 hours, but I kept going back until they finally referred us to a consultant. I am writing everything down, and clutching onto a letter I received which actually says she had a CT scan which showed the sublux had gone, when she hadn't even had a scan! I'm currently writing all the details necessary to make it easier for my GP to do a referral to GOSH. I'm not normally the type to kick up a fuss, but this is my little girl and I'm actually angry with myself now for letting it get this far, so I'm channelling that to getting her sorted. xx

  4. DeeAnn Lancaster

    How old is your little girl? I just stumbled on your blog through Blog Top Sites. I have a 31 year old son with disabilities. We were in a similar situation when he was 13 years old. He was in the hospital in Eugene, Oregon for 19 days before he finally went into respiratory arrest and life flighted to Portland to Oregon Health and Science University. Whenever I think about that time in our lives, I get sick and push it into the back of my head. If I could go back in time, I would stand on the counters at the nurses station and yell or do anything to get the attention we needed. My son was treated like a guinea pig and we were naive enough to let it happen. My suggestion to you is to get your daughter to the closest University Hospital ASAP! They are teaching hospitals and have the best of the best professionals working there. University Hospitals see EVERYTHING and I am certain you will get quality knowledge and care. Please, if I can be of any more help, get in touch with me through my blog http://www.snippetsnstuff.blogspot.com . I blog about my life dealing with disabilities.

    • Anne Stone Sweet

      thank you for your reply. My little girl is 8 yrs old. I have let the hospital lead the way for the last 3 months, but now I'm standing my ground and making a fuss. I'll let you know how I get on, and pop over to your blog too. I have a disabled 25 yr old son.

  5. Lisa

    Twitter led me to your blog. Even thought I do not know you, this just makes me mad. I have has experiences with doctors putting my child on the back burner too but not to this extent. Your baby needs to be fixed! They do not understand the pain she's in and definatly not the pain your in. Hope you get some answers soon. Love your blog by the way. Im now A new follower. Come visit me sometime. http://lifeawayfromtheofficechair.blogspot.com

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