Non tuberculosis micro-bacteria infection

[mummywithLplates]

My DS has had a lump under his chin since Feb of this year. After various visits to gp and a scan and X-ray taken we were referred to consultant at our local hospital. Consultant believed it to be a non tuberculosis microbacteria infection, but did tests to rule out tb. I've never heard of this type of infection before but the lump started to reduce when DS starting taking antibiotics that were prescribed but this has stalled and we referred to surgeon as it was felt that this would be the only way to remove lump. In the meantime another lump has appeared towards the back of neck and surgeon has advised that he would rather not operate as too close to facial nerves. DS is now being referred to the evalina at st Thomas and just wondering if anyone has experienced this type of infection and are will to share their stories? Apologies for such a long post!

[mummywithLplates]

Any one have any experience of this?

[working3jobs]

will PM you

[working3jobs]

actually, I don't know how to !!

In 2002, my son had a non-TB MYCO-bacterium lump on his neck aged two. I had been told it was just a swollen gland but went with my gut instinct, it turned purple!

luckily got referred to a ENT paediatric surgeon who had done a lot of research on this, thank god.

DS was then put on clarythromicin and azithromycin to reduce the size so surgery could be as small as possible.

was told that in uk at that time it was treated medically only, but research in USA had shown that the risk of it coming back could only be ruled out completely by surgical removal following drug therapy, it can, in rare cases lead to cardiac problems (VERY RARE< don't panic, like I did!!)

we were warned his facial nerves may be damaged, and scarring could be vast, but the fantastic surgeon managed to get it all out avoiding the nerves and the scar is just a pale line running along just under his jaw-line.

any other questions, just ask, :)

[working3jobs]

remember, this was 11 years ago, am sure there is more knowledge and understanding now :)

[mummywithLplates]

Thanks for your reply working. My DS's original lump went purple and the other one is starting to do the same. He too has been on the same medication, but it's interesting to hear what you say with re medication vs surgery. If you don't mind me asking, can you remember the name of the dr that you saw and which hospital?

[working3jobs]

think I have now figured out how to PM you!