Lymph Node - Atypical Mycobacterium in 2 year old

[Tillyboo]

My dd was diagnosed a couple of months ago with an abcess in her lympth node. She had a swelling under her jaw which got bigger & bigger until it was 'ripe' enough to operate on.
The pus was drained from the abcess which was very deep and she was left with a 'wick' sticking out which was there to keep to channel open for healing. DD had her dressing changed daily which was pretty upsetting and a cm of wick was pulled out daily. After about 2.5 weeks the wick came out and the wound started to heal.
We were told that the infection that caused the abcess in the first place was either a) the TB bacteria or b) An atypical mycobacteria. We have now been told that it's the latter.
We were originally told this diagnosis would mean another operation to remove the lymph node but now we are now being told that they may treat dd with long term antibiotics rather than operating. We are concerned about the effects of long term ab's but we would have the worry of another general and possible damage to dd's facial nerves if an op is needed.
We have an appoint with a consultant on the 8th to discuss.
We have also been told that these infections are uncommon but on the increase so we wondered whether anyone else has been/ is going through the same thing.

gosh how distressing for you and your dd Tillyboo. I have had no experience of this, although ds has had an enlarged gland for a while now and doctor says it is ok, but want to wish you well and hope your dd is feeling better.

Thank you very much !
DD is absolutely fine and has never been ill as such, which has been a blessing.
The most traumatic part, apart from the upset and worry of a general anaesthetic, was the daily dressing changes as we had to peel it off her skin and it got so sore & raw no matter how gentle we were or how many things we tried to get the adhesive off.
It's just been dragging on and we want to know what the next step is so that we can deal with it.
Children get enlarged glands frequently but you always worry don't you. DD had an ultrasound and that's how they discovered the diagnosis.
Where is it and how long has he had it?

DD showed no signs of illness at all & the doctors thought it was an enlarged salivary gland at first so dismissed it. My gut feeling told me that there was something wrong so I saw another GP and fortunately he agreed with me and referred dd to an ENT specialist.
My advice to you would be to pursue things if you are not happy, ask to be referred - or if you have private health cover, all the better.

We have been told there is an increase in TB bacteria infections and also the atypical mycobactria infections so I'm glad we took it further & got it dealt with before any complications set in.

Good luck with your ds and keep me posted on how you get on

that is something to think about tillyboo - thankyou. So glad your dd hasn't been ill with it.

I have no experience from the patient end so I may not be a great deal of help, but I did used to work in a lab specialising in mycobacterial diagnosis and followed several cases of children with cervical lymph node infections like this. Most of those we did see were TB rather than atypical, but we did get a few of the environmental ones, and the old-timers in the lab were convinced they were on the increase because there were more immunocompromised patients.
I guess your dd's immune status is ok as you haven't mentioned it, and this bodes well for her recovery - in fact she sounds like she's doing really well. You sound very together and clued-up too, which will be a great help to everyone concerned!
Long term abs for mycobacterial infections are generally very effective if taken properly and very well tolerated, but they are long term - maybe a year or more.
I know less about the consequences of surgical intervention, but hopefully the fact that it might not be necessary at all makes it sound like any surgery might be fairly minor.

Good luck with the meeting on the 8th, and feel free to either post again or CAT me if I can help with anything or you want to bore someone with all the details!

Dd2 had an abscess on her lymph nodes a couple of months ago which required surgical drainage under general anaesthetic. She was 5 months old at the time. We were told that this type of infection, although rare, is more common in babies than older children. The doctors also said that children normally get quite ill as the abscess develops, but, like your daughter, dd2 was absulutely fine.
We were discharged from hospital care (Lewisham hospital) 48 hours after the operation with no follow up.

tillyboo, I have absolutely no experience with this kind of infection (although I did have an infected lymph node once and it was very unpleasant - sympathies to your poor dd) - but I do know about long-term use of antibiotics.

My dd2 has Down's syndrome and an impaired immune system, something that is quite common in little ones with DS. Anyway, she was on full-dose, full-strength antibiotics (mainly erythromycin) for well over a year when she was 2 - 3, and tolerated it extremely well. In fact she had no side effects at all, all it did was keep her healthy. Eventually her immune system picked up a bit and now at age 5 she's on antibiotics maybe one week per month or less.

There are so many different types of antibiotics now, and it really should be quite straightforward to find a type that is well-tolerated by your little girl and will not give her any side effects.

your poor dd tillyboo!

just in case you don't know (re the problems with the dressings), you can get wipes called Zoff Adhesive Remover Wipes that you use after the plaster has come off - it removes the sticky residue that is left behind with no pulling whatsoever - you literally wipe the skin and the sticky stuff comes off. One of mine had a nasty wound that required a very sticky dressing and this was the only thing that got all that gunk off!

Glad she seems out of the woods.

giving your child a good probiotic [Solgar ABCAcidophilus for example] will help replace the 'good' bacteria antibiotics wipe out and boost her immune system.

I don't think there's much point giving a probiotic during use of antibiotics though - it'll just get wiped out straightaway.
Correct me if I'm wrong!

you may have a point there geekgrrl!

Hi Tillyboo

DS2 (2.1yrs) had a benign tumour removed from his neck (and part of the bone) in January this year. It was a thyroglossal/branchial cleft problem though not a lymph problem. However, since the op he has had problems with protruding lymph nodes which come up and go down from time to time. However, because he has had quite a lot of trauma and medical intervention in his life already - understatement - (and the fact that he is otherwise okay in himself - although still has niggling health problems) we have said no to more investigations atm.

Anyway, apologies for going on so much, but I just wanted to say that I am very interested to hear about your experiences and the treatment/follow up. I'd be very wary of a long course of antibiotics unless absolutely necessary though.

Good luck - keep us posted. I hope your DD makes a full recovery asap!

naswm x

Naswm - sorry to hear about your ds2, poor little mite has really been through it. Children are so resilient and put us adults to shame sometimes so I'm really happy to hear he is Ok in himself.
We are very wary of long term ab's and have tried to weigh up what option would be best, an op or AB's. Obviously the choice may not be down to us and until we speak to the specialist on the 8th I'm trying not to favour one or t'other. Both have pro's and con's so it's very difficult until we know all the downsides of both options.

I'll post again after the 8th and let you all know what the specialist has said.

Interestingly we've just found out from our ENT consultant that another little girl, same age as our dd1, has been diagnosed with exactly the same infection in exactly the same place.

Rather than be told the bacteria is 'found in the community', I'd really love to be given some idea as to where it came from i.e. airborne, soil, animal/ bird poo, water ?

Hope your ds2 remains well x

sorry to bump this after so long but ds has to have a biopsy tomorrow for suspected non-hodkins lymphoma but his symptoms sound similar to your dc's. Can I ask if they had pain or fever with their swollen lymph nodes? He doesn't which has led the doctors towards lymphoma but I'm grasping at straws here hoping for an alternative condition

Hi Tillyboo,

My 22 month old son has just been diagnosed with Aytpical Microbacteria. He has had 2 lumps in the lymph nodes on his neck for just over 2 months....no pain, not ill, no fever. The Dr's originally thought it was lymphoma and he had a biospy done and the results showed it was not cancerous (thanks god) and that it was this Atypical Micorbacteria. He has 2 swollen lymph nodes and the one under his jaw his really red and almost looks like it's starting to rot. He is on 2 antibiotics (which i'm having a really hard time getting him to take) and we go back to the specialist on july 28th and if the lumps don't decrease then they will probably have to me removed surgically. the one specialist we saw said antibiotics usually don't work for this type of infection was this the case for you?

Could you fill me in on what happened with your child? Did they need surgery? if so was there any nerve damage? Did the lump start to ooze? did you have to take antiobiotics if so how long? as i'm sure you know it is quite difficult to find information on this type of infection as it is rare so any information you can provide would be greatly appreciated

IFEDZ- I have pm'd you.

I too have a 4 year old with suspected atypical mycobacteria. She has a really angry looking large lump in her neck. Any info or advice would be greatly received, it takes such a long time to get results etc from the lab and hardly any info found on it so far! Just want to know what to expect etc. Thanks in advance :)

Hi ifedz and mrs t. My youngest DS went through this 3 or 4 years ago, if you search my user name there is a thread on here. We were told either lymphoma or serious infection, was the latter. If you are in the West Midlands then let me know and I will PM you the details of our surgeon and hospital. Surgical treatment apparently gives the best outcome for children that have this infection. Our DS had 2 lots of surgery followed by 6 months of antibiotics. He had 5 necrotic lymph nodes removed and had he not had the surgery his scarring would have been a lot worse. The second surgery did cause some nerve damage. This has improved massively over the years and now only I see his very slightly wonky smile. Initially though it looked awful. Just shout with any questions and I'll do my best to answer them.

Hi all,

Our DS was diagnosed with Atypical Micobacterial infection. Unfortunately it wasn't diagnosed until very late and the abscess burst. Although not sure how much different this will have made in the long term. After that he had about three months of antibiotics and he doesn't seem to have had any reinfection after that. But they say there is a high chance of reinfection in the future.

At the moment the doctors are saying he will need an operation in his neck. They say this has a his chance of complications including cutting a thin chord to his mouth. (As someone mentioned above).

We'd really like to get in touch with some other parents who've had the same challenge.

Hello!

My son has been diagnosed with this! He had surgery to remove it but it came back. Anyone have any experience of the aftermath of this infection? I see this is an older thread so maybe someone can help me with a little aftermath insight.

Thank you