Neuropathy Problems Archives

Congenital CMV

I would be really interested in chatting with other parents of children born with congenital CMV. Material is really difficult to find re:congenital, as CMV is often linked with CFS and HIV. My son is now five years of age and I am wondering if other parents have considered NGF or any other drug used to enhance nerve repair or speed it up.Is there any other medication that works similiar to NGF? or any other treatment that parents have used. I realises that congenital CMV affects each child differently, however it would be great to get some feedback and hear from other parents as to what they are trying. Regards Mandy

Follow Ups:

• Re: Congenital CMV Walt Stoll 09:39:21 6/27/00 (2)
  • Re: Congenital CMV Mandy Hodshon 06:45:52 6/28/00 (1)
    • Re: Congenital CMV (archive under neurological) Walt Stoll 08:18:14 6/29/00 (0)

In Reply to: Congenital CMV posted by Mandy on June 24, 2000 at 10:29:56:

Hi, Mandy.

You need a cutting edge neurologist or infectious disease specialist in your part of the country. There is SO much being learned about this now that the gap between the physicians on the cutting edge and those in conventional practice is widening by the minute.

If I knew your part of the country perhaps I could put you on the trail of finding someone like that.

Walt

Follow Ups:

• Re: Congenital CMV Mandy Hodshon 06:45:52 6/28/00 (1)
  • Re: Congenital CMV (archive under neurological) Walt Stoll 08:18:14 6/29/00 (0)

In Reply to: Re: Congenital CMV posted by Walt Stoll on June 27, 2000 at 09:39:21:

Dear Walt, Sorry that it has taken me a few days to reply, however I have not been near the cmputer for afew days. I live in South Australia, Australia, and my son is currently working with physio's from the crippled childrens associaltion, speech pathologists (alpha talker and sign language) and rehab doct- botox injections, swash brace, medication for drooling and in approx 6 weeks an operation concussing is soft tissue in realtion to hips. I have mentioned NGF and other relatively new medications that have been brought to my attention, however I have not recieved any positive responses. Do you have a child born with congenital CMV or work with children with CMV. We have not tested our son in the past 4 years for CMV, however I am aware that there may be a possibility that he may still be in possession of CMV although the strain would be very diluted. I have met one child born with congenital CMV but was unable to chat with his parents/caregivers so at this stage feel very isolated. One very unusual aspect of our sonis that he his hearing has been unaffected, he can hear apin drop oin one ear and just abone that in the other, which is very unusual with congenital CMV. He walks, very slowly, with a gutter frame and is currently in the process of learning to drive an electric wheelchair. I know that I have offloaded a lot of information about him, however I would love to hear back from you and hear your experiences with congenital CMV or even your exposure to material. Regards Mandy

Follow Ups:

• Re: Congenital CMV (archive under neurological) Walt Stoll 08:18:14 6/29/00 (0)

In Reply to: Re: Congenital CMV posted by Mandy Hodshon on June 28, 2000 at 06:45:52:

Hi, (Aussie) Mandy.

Your best bet would be to contact the premier organization in the world, for collecting the cutting edge information from the world literature about stuff like this, and ask them for the names of your local physicians who have subscribed to their monthly service for at least 2 years.

Their website is healthcomm.com and their phone number is (800) 843-9660. Local # is (253) 851-3843 if you cannot get the (800) # to work. Let us know what you learn.

Walt