Right now a lot happen, I heard from another parent that there is a big international study going about children and PH. I think there is a new medicine that is being tested. I wrote a mail to a professor in Sweden who is a specialist in PH and who is involved in this study. In the letter I described Elliot’s history with PH and I got a quick answer. The professor’s opinion was that we have the best treatment there is to have.
The day before yesterday I made my first entry to the Nordic message board for PH. I have already made contacts via this forum and it feels great to know that you are not alone in this mess. I have also found the message board that PH Association has and it was a positive discovery to find that they have a forum for parents with children that have PH. You will find the links to these two boards in my link list.
Yesterday I paid a visit to my ear doctor and this was not a positive meeting. I now have Ménière’s disease (tinnitus, loss of hearing, dizziness) on both my ears. I got diagnosed for Ménière on my left ear in 1996 and now it’s on both my ears. My belief is that it is Elliot’s disease has to do with this negative progress, I worry a lot and this affects my hearing.
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