I am just a bit confused and trying desperately to find somewhere I can get more information, as it is now believed my 18 month old baby has HSAN (types III or IV suspected) and it has been a very long road getting here! With lots of hospital visits, to the point where I practically live at one hospital or another.

I have found a couple of forums which seem to be completely for these types of dysautonomias, but - as they are so rare - there is not the help and support I am looking for, because they are updated and checked so rarely. I don't want to start posting about all her problems (as I seem to have done that repeatedly with no joy now for days!) if this is for a particular type, and I am wasting your (and my) time.

Any info would be greatly appreciated - or links to other sites! Thanks in advance!

A very exhausted mum!

Hi xphile-mo,

I just noticed your post and wanted to welcome you. I'm afraid I don't really know the answer to your post, but someone here will. There are a few people who post here who have children with dys, but I'm not familiar with the intitials of the condition you listed. But, like I said, I'm sure someone here will know.

I have seen sites especially for families or children with familial dysautonomia, but, if we can help you here, this is a really active group and I know you're welcome here. Just want to make sure we meet your needs...

anyone???

Hi Moira,
Welcome to the group. I have not seen anyone with this particular dys, but after looking it up online, the symptoms are very common for us on this site such as tachycardia, hyper/hypotension, digestive issues, etc. I wish I could be of more help, but if you continue to post and ask questions, I know there are people on here who will try to help, but above all, everyone is SO supportive. Any type of dys is difficult for family and friends to deal with and the severities differ so much from person to person. Please, stay in touch and post to the site. You will not find a better group of wonderful, knowledgeable, and supportive people!

This other website could also be very helpful to you, as it is for kids with dysautonmia.

http://www.dynakids.org/index.jsp