This website has been created by the parents of a child who has been diagnosed with Floating Harbor Syndrome. My guess is that if you were to mention this syndrome to anyone other than your consultant at the hospital, you will be met with a blank stare. Even GP’s have little or no knowledge of FHS. They are General Practisioners and its not their job to know everything about everything. Doctors are learning about new things every day and our input on the effects of FHS on our child can help educate them a little more.
It would be easy for me to copy and paste lots of medical jargon on to this site, so that you can try and decipher it. Its hard enough trying to get information about FHS, but when I google the syndrome, the result is usually a copy of someone elses information. Every human being is unique, therefore the affects are different. Some may have more prominent features or more capabilities than others. There may even be some symptoms that have not been discovered yet. On the pages that I have listed the symptoms, these admittedly have been copied from various sites, only to give you an idea of what the medical profession have discovered. Again, the spectrum is very wide in what severity or actual indication that this is present. Our child does not have all the symptoms, but there are some not listed either.
The information that I provide is based on our experience. I have submitted information to various agencies regarding our child’s condition and quite often, I find that this is being quoted as ‘their’ knowledge, like they own our input and therefore the agencies become ‘experts’ in this field. The only experts when it comes to dealing with your child, is the parents and family. The people who love and care for their child 24/7, don’t forget this.
Hi just came across your website and thought it very useful so thanks.. there really is such little information out there….!
My 7 year old daughter is in the process of getting a FSH diagnosis, but not yet 100% confirmed. She has very delayed expressive speech and over a year ago I managed to get her into the Deaf school outside Edinburgh, Scotland, which is really helping as they use signing and also understand about delayed development .Lots of the children who go there have other problems other than being Deaf… Her main problems other than speech seems to be extreme tiredness, though she gets plenty of sleep. I have had her on a gluten free diet for several years after reading info from North America, you are way ahead of us!
Am just making contact as I am amazed that so few people have this diagnosis.. And I see that there is no contact group in the UK. Was wondering if you had information about where most of the people/children diagnosed lived…. In fact any additional info is most gratefully received…!
Best wishes
Anna Pink