Lymphatic Malformation - Denmark
Since 1997, my son has been diagnosed with Lymphatic Malformation - especially Tongue, and mouth area. He has been through many surgeries during the last 20 yrs.
At the moment he is very ill, and awaiting another treatment/surgery here in Denmark.
It seems like he is getting worse every month - he has been waiting for allmost a year now.(he has been through several examinations and "experts" have been meeting to find a way of treatment - appearently without any conclusion other than he has to be treated - and it may be with another surgery).
At the moment we are at the point where any help would be very welcome. The doctors here seem to be very little interested in looking for help abroad, and we are meeting a wall of non understanding of the other symptoms hes is suffering from. I is very obvious to us that hes body reacts extremely to these ongoing swellings, and he is at the point now, where any food has to be of a soft type and something easy to chew.
At the moment we are very worried and it doesn't seem to go forwards with his health at all.
Worst of all - he is allways in pain, it is really hurting now and as a parent it is allmost impossible to maintain the good spirit, when watching your child suffering.
I am very proud of him, he keeps up his spirit, keeps on going out with friends even when he is tired and hurting. Thanks to a very good family practitioner and a wonderfull psykologist - both of them taking his problems very sireously - he is in a better mental state than to be expected. Every one in his surroundings helps out.
Has any one out there experience within the other symptoms like being very tired or reacting with swelling of tongue and moutharea whenever he is stressed or when eating certain food.
He has problems with his lungs and he had a large surgery a couple of years ago - they said it seemed to be an infection, but they could not see it in his blood samples...??.
His liver swells sometimes and they don't know why, just that it seems to be something he has to live with???
Do you know any of these symptoms when suffering from LM - and do you have any idea who to contact in Europe??