Hello to all
Long delay in posting but many things have happenend, Joe has been up and down quite a lot just lately and was taken to A&E by ambulance last friday diagnosis cellulitis in his lip he was very unwell and it affected all the autonomic probs too anyway after the lip ruptured Max Fax saw him and were worried about the wound healing and want info from Prof Grahame about wound healing probs in poss EDS! so I phoned UCLH adolescent unit only to be told that he is not being given an appointment at their clinic, they have written to our local paed explaining why but we don't see them till next week so won't know why until then. However I have my first appt. with Prof Grahame/one of his team tomorrow so I will go armed with Joe's referral letter and family history ironic that I am being seen after referral from NHNN. When Joe's paed referred him to Dr. S at the adolescent unit she included a full family history including 19 yo daughter who is being admitted in to NHNN for 5 days in April, who has also had some basic "joint tests" at one of her pots appointments and they noted paper scarring and stretch marks on her legs and back (she is not over weight). So I am totaly astonished that Joe will not be seen in the adolescent unit.
As he displays the same markers as my daughter and NHNN are referring her to Prof Grahame too!!.
Anyway an update on secodary school, Joe has had a GCSE science resit two weeks ago and the invidulator came to our house so he took the exam at home, the school had also arranged for him to take the other exams at home if he is not well enough to go to school on the exam days and at the moment it looks likely that will be the case as he is no better and atm is spending a lot of time sleeping, he is getting more episodes of tachy and is getting chest pains too. At least when he was taken into hospital last week they could see that although he was tachy it was sinus rhythm and not an irregular beat although too fast. however I won't relax until someone does a 24hour tape or an echo to check that it is a sinus tachy.
Joe seems to have lost all contact with friends at school and that affects his moral, do you have similar problems with children missing school a lot?
and how are you all getting on with the education welfare issues? hopefully things are sorting themselves out for you all and things are in place for your children including things like extra time and rest breaks for exams especially the English papers which are 2 hours long! even a half hour paper with extra time should give them an extra 7 minutes! the average allowance is 25% extra time. Also if you have a very poorly child maybe think about whether or not they might be in a better situation taking their exams at home where they don't have to worry about getting up dressed into school uniform and then make the journey and be totally exhausted bthe time they get to school.
good luck to you all with your endevours