Swollen Lymph Node Infection Non-tuberculosis mycobacterium lymphadenitis

[fruitylipgloss]

Hi,

My daughter has been diagnosed with this atypical mycobacterium infection in her lymph node and it has been ongoing for a couple of months. We were told it’s uncommon and although she’s typically well in herself she has a 4cm angry purple swelling on her neck that’s has got progressively worse over 2 months. The skin is starting to thin and peel as it turns into more of an abscess than just a hard swelling.

Just wondering if anyone has any experience with this? Doctor is taking a wait and see approach with antibiotics. Supposed to be seen by ENT and scanned every two weeks but obviously the appointment came through and it’ll be 4 weeks since she was last discharged from hospital. Not surprised by this.

Sad that this may take up to a year to clear and don’t know if we would have been better off going down the surgical route. That comes with general anaesthetic and potential nerve damage though.

Anyone out there have any experience of this?
🙏🏻

Hi, I've made an account specifically because I know this is so rare and my daughter has just been through this exact condition. My daughter was 3 last October when her lymph node became hard, then over the course of several weeks the lump became livid purple. The GP gave 2 courses of amoxicillin and flucoxicillin before realising this was ineffective and we were referred.

The hospital initially sent her to general Peds and she had an ultrasound which showed a deep infection in the next down to the jawbone. They thought it might be bone infection from dental trauma, but then swiftly ruled out because she had no tooth issues. She was referred to maxillofacial and then eventually to ENT who diagnosed Atypical Tuberculosis Mycobacterium (causing cervical lymphadenitis).

She had surgery last Friday to remove her lymph node and the surrounding tissue, and they will send the node to the lab for further testing witu results in September.

Feel free to message me with any questions you have - it's rare and so I couldn't find much! Happy to help if I can.

Hi! My now 5 year old had this when he was 2.5. He had a massive swollen lump - golf ball size - in his neck, we were terrified it was something sinister. After the GP was rubbish and things moved so slowly, we ended up seeing a paeds ENT consultant privately, and he put us on his nhs list so only had to pay for the initial consultation. We tried circa 4 weeks of antibiotics, didn’t help. His lump never got discoloured, it just got bigger. In the end he had it completely removed for biopsy, about 3 months after it first popped up. It was done as a day case. It was confirmed as non tb mycobacterium and he didn’t need any further treatment. Now has a tiny scar but he’s never had any further problems.

Thank you both for taking the time to reply! @Bug84 glad to hear your son recovered nicely. I wish I had pushed for the biopsy early on but by the time we were deciding my daughter’s swelling was too large and too close to the facial nerve to operate in the end. The doctor did say he could try to remove it but we ended up going down the wait and see route after trying the 4 weeks of antibiotics.

We have ended up letting her body do it’s thing and she has had an open wound for about 2 months. We just keep it clean and dressed most of the time and the surrounding swelling has gone so her neck looks flat but the wound is still draining. Sounds like it will be ongoing until early next year which is such a shame. Luckily, you wouldn’t really know. She’s just a happy 3 year old with a dressing on her neck most of the time. We’ve been offered curettage of the area to help speed up the process so we’ll see how it’s looking at the next ENT appointment.

@Katofbooks I hope your daughter is recovering well. Thank you for sharing your experience. You sound like you’ve been dealing with it all for a while so I hope the operation means you can soon forget about it.

Hi @fruitylipgloss it's very good to hear that your daughter is happy and the bandage doesn't seem to be slowing her down in any way. Your daughter's node might behave differently while it is draining, but after several months my daughter's eventually pulled in on itself and puckered the skin in the area. Curettage might speed up the process for you which obviously would be preferable; it's good that you have an ENT monitoring the situation on a regular basis.

The operation and recovery have gone well here - she didn't have any issues with pain and her scar is looking good after two weeks. There is very little aftercare as the stitches are dissolvable. They have tested the node and it is NTM/atypical tuberculosis - they're going to be in touch in 5 weeks to say exactly what strain if they can determine it.

The issue we did have with the surgery is that the mass was entangled with the facial nerve and my daughter now has a drop in her lip on one side when she speaks. It's not noticeable to people other than family really, but the surgeon is hoping it is temporary and will disappear over 6-12 months. He did say that if it was still there after a year it would likely be permanent.

She hasn't noticed it and is just a very active and energetic child, so we are hopeful!