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Arteriovenous fistula 7 month old baby

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    Arteriovenous fistula 7 month old baby

    My 7 month old son has recently been diagnosed with a Arteriovenous fistula on his spine behind his chest. His legs do not work properly and his feet are pointed he also has low muscle tone. I no this is very rare and even more unusual in someone so young has any one else had an experience of this? What Treatmeant was given ect. I'm feeling very alone and desperate for answers. I'm waiting to hear from great ormand street hospital to see it there's anything they can do. I would really appericate any responce.

    Natalie.

    #2
    Natalie, I'm sorry that I have no useful information or suggestions to offer about this condition, but my heart goes out to you and your little one and I hope you hear from the hospital soon - and that people there (and here, within the CareCure community) will be able to help. Blessings to you and your son.
    MS with cervical and thoracic cord lesions

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      #3
      Natalie, I hope you hear from the hospital very soon. If you google this condition are there any pediatric support groups?

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        #4
        If I were you I would contact dr. Robert F. Spetzler at Barrow in Phoenix Arizona. He is one of the best on AVM's.

        http://www.thebarrow.org/index.htm

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          #5
          Unfortunately, AVMs of the spinal cord are most likely to be diagnosed in the young, although most do not have symptoms until in their late teens or 20s. Many people who have AVMs in the brain or spinal cord are born with them and have no symptoms for a long time.

          There is a lot of information about AVMs on-line. I would strongly urge you to be sure to see a specialist in neurologic AVMs when making a decision about treatment, especially surgery. It is not easy surgery, and there are always risks that the surgery itself will make the neurologic insult to the cord worse.

          This group may be able to offer some support services: http://www.taafonline.org/pr_therylanproject.html

          I would also urge you to see rehabilitation services for pediatric spinal cord injury ASAP, probably through of the National Spinal Cord Injury Centres in the UK. Although there may not be anything that can be done to heal damage already done to the cord, there is a lot that rehabilitation therapies and interventions can do to improve the function and quality of life for you child as they grow.

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            #6
            Welcome Natlouie. Sorry to hear about your situation, and I hope you get something positive from GOS.

            Whilst I don't have experience with AVMs, from the link that SCI-Nurse provided, I see that it appears to be more common in the brain than the spinal cord. That was also the situation with my son, who was (eventually) diagnosed with a spinal cord tumour (a tumour which is more often found in the brain).

            On a positive note for you, the fact that you have a diagnosis is good (even though it may not feel like it at the moment).

            There are a small number of parents on this forum who have children with spinal cord injuries, but none that have/had AVMs to my knowledge. However if you feel that we can help you out in any way, feel free to ask (PM or post here).
            Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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              #7
              Hi Natalie

              Sorry you and your baby are facing this. There is alot of information / support here which will help as your child grows.

              Backup Trust UK offering a mentoring service and maybe able to put you in touch of a parent in the UK with a child with a similar condition or advise you on services in the UK.

              I have sent you a PM.

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