Lymphangioma and hope
Not sure where to post this, so thought I would reply to you. An update on Cara's situation since my last post. the outcome so far is good. Cara looks very well and is happy but it was a rough ride.
All through December and January Cara suffered with painful swelling and bleeding of her tongue. Our plans to visit Dr Levitin in April were overtaken by events when she was booked in for urgent laser treatment. It seems there is at least one person in the UK who knows about 'lymphatic malformations' as he calls them - Dr Ben Hartley in Great Ormond Street Children's Hospital in London.
The procedure seemed to go well - she was allowed home the next day and went to school the day after that, but it was to be short-lived. She suffered from delayed post-operative swelling and quite badly. I suspect it was a too-sudden tapering off of the steroids. She was taken back into hospital where the swelling rapidly improved and then returned just as quickly, and with a vengeance. The ENT doctors were very good at reassuring us that, although quite extreme and unpleasant, that the reaction was typical of healing after laser. This was confirmed by Dr Levitin via his regular email contact with us throughout this whole saga. Without his 'virtual' presence, I am not sure how we would have coped.
Finally, Cara was allowed home again and has been fine since. It has now been only two weeks since her treatment and it looks to be healing completely. I understand she may need follow-ups, but for now we are happy that she is no longer in pain, discomfort and distress. We are taking one day at a time.
We are still hoping to come to the US at some point as Cara really wants to meet Dr Levitin "one way or another" as she puts it.
I just wanted to let people know that patience, research and the right expertise (Dr Levitin for example) is essential to get the right treatment. For months we were messing arround with a Maxillo Facial consultant when we should have been dealing with ENT, Vascular and Pediatric professionals.
Thanks for listening