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Hi ,

I read your latest post. You seem to be getting very little support

from your health professionals which must be very frustrating for you.

I also received a lot of negative comments from 'professionals' so I

understand how annoying it is. To be fair to them, RSS is so rare that

they have no knowledge of it.However that is no excuse to throw

comments about. I would tell them not to comment on something that they

know nothing about and perhaps they should take a bit of time to learn

something about it. I pushed to have Blair seen by an experienced

doctor and refused to back down until I had a definite diagnosis.

The skeletal survey was an X-ray of his skull, spine, legs and arms and

was carried out at our local hospital. I cannot help much on the eating

issue as Blair has always been a good eater, we are very lucky in that

respect.

Best wishes

xx

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