Name :    Miss Brodie Thompson (Paul, father)

E-mail :  p.thompson790@btinternet.com

Child:    two years old

Location:  Mitcham, England

Area(s) affected:  Right pelvis, knee, foot and big toe

Personal History:

I was drying my daughter one day after a bath when she was about 4 months old.  That is the first time I noticed the difference between the two legs.  My wife and I took her to our GP, Dr. Mansfield.  He sent us to St. George's Hospital to see Dr. Therbeck.  She was unsure.  She referred us to Prof. Mortimer at St. George's Hospital in Tooting, who deals with lympodeamer.  On the day we came, he had people in on the appointment from genetics.  After the examination, he was unsure and asked us to have an ultra sound done on her hip to see if the lymph fluid was flowing in and out OK, which it was.  He suggested we gave it until she was walking to see if there would be a difference and signed us off for one year.  We went back to him after nine months as Brodie had started to walk early.  He was still unsure and signed us off. 

With this in mind we were very unhappy so we returned to our GP.  This time we saw Dr. Leporta.  She referred us to Ms. Daly who was also from St. George's Hospital (Peads).  We had seen her a few times and in this time she recommended a full body x-ray.  After spending 45 minutes in x-ray we were finally done.  Ms. Daly looked at the x-rays and then said she would send them away to be looked at by a person who all they do is look at x-rays at Great Ormond Street Hospital.  We got back a suggestion of what it could be and who Ms. Daly recommended we see.

Dr. S. Mansour, who we did see April 26, 2007 to find out it was the same genetics doctor we saw the first time we went to see Prof. Mortimer.  She is meant to be emailing a doctor in Belgium to get his side of it.  It was a better meeting, as the doctor had more answers, as to what it looks like is wrong with Brodie. After looking at the sheet ourselves, we can also see this for ourselves.

Brodie has a hardening of the tissue, shortening of the limb, range of motion limitations in right leg, sensitivity to the cold (takes long time to warm up) and candle wax appearance on her x-rays. 

So we want to hear from Dr. Mansour to see if anything else has arisen (so watch this page) and will update if any more information comes to light.

Thanks,

Paul

    

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