Sunday, January 27, 2013

Atypical Mycobacterial Infection: One year post surgery

In some ways the past year has flown by and I feel like we were just checking into the hospital for Ezra's surgery with anxious stomachs.  In other ways, it seems like SO long ago.  Ezra was a only 9 month old baby then.  Now he's a walking, running, climbing, talking, eating-on-his-own toddler!

Here we are in prep-op on surgery day - 1/27/2012

We are so thankful everyday that his surgery and recovery went so smoothly!  We will never forget how blessed we are to live with modern medicine and to live so close to such amazing Children's hospitals - had we not been satisfied with the first doctor we saw, there would have been at least 3 other places we could have went all within an hour of our house.

(He napped while the doc was prepping him.)

Ezra has healed up well.  His incision scar is barely visible - even if you are looking for it.  The red spot left on his skin from where the infection was shrunk from the size of a Quarter to the size of a Pea.  It seems to continue to shrink bit by bit each month.  His doctor said that if it stops shrinking he could remove that small section of skin, but I think we will give it a little more time to heal on it own.

The only way I can get a picture of it these days is while he's asleep.

Ezra also developed Frey's Syndrome from the surgery.  (He gets a red area on his cheek when he eats acidic foods, such as fruit.)  Not much is known about Frey's because it's so rare.  We aren't sure if he will have this for a few years or the rest of his life, but I don't think the area seems to get as red as it used to.  So maybe it will just go away!  It's nothing that hurts him though so we will just wait and see!

Here's his best "cheese face" for you!

So thankful that both boys have been very healthy over the past year...one ear infection each and pink eye for Ashton was all we had to deal with since the crazy, how-on-earth-did-my-baby-develop-that, Atypical Mycobacterial Infection!

(You can read about his diagnosis here, his hospital stay and initial recovery here, and his 6 month post-op update here.)

If you have more questions about our experience with Atypical Mycobacterium, please leave a comment or email me at thoner02k @ yahoo . com
~Anika

17 comments:

Mutzy Mia said...

This is such an answer to prayer. Ezra is getting so big...I can't believe it was a year ago...seems longer. Thanks for sharing his cute "smile". Hugs.

adrianne klein said...

Hey Anika! Its me again! Anyway its 6 months after my daughters surgery and we went to go see the dr and he seemed concerned that her neck was still red! I am concerned he may not have a lot of experience with this... :/ her surgery site has gotten smaller and the redness has also gotten smaller but defiantly still there. Was Ezra's still red at 6months?? I tried looking in your photos and its hard to tell. Sorry to keep asking all these questions but with a dr that hasn't had a lot of experience with this I don't have a ton of options with all this :(

Adrianne

Anika said...

Hi Adrianne, Ezra's infection site was still red at 6 months post-op. actually, we are coming up on 2 years and he still has a small scar that is finally fading from red to pink. When his doctor felt the spot he was confident that there wasn't any infection left in it...it's just some scar tissue from the skin getting so thin and then after surgery, Ezra scratched it once, so I am sure that didn't help! Hope that helps!

adrianne klein said...

Yes helps lots! Thank you again for answering my question! :)

aimee reinhart said...

Hi Anika. I just read your blog and felt like I finally found someone who has gone through the same thing that I have. My son was diagnosed with atypical mycobacteria a couple months ago. However, my ENT and Infectious Disease doctors feel the best treatment is to let it go and see if it heals on it's own. It may take 12-18 months but they would rather not do surgery due to the location (the same location as Ezra's). They would also prefer not to put him on antibiotics for an extended period of time since the antibiotics that were tried initially didn't affect the infection and they are not positive they will work. I am beginning to think that maybe we should have opted for surgery but the proximity to the facial nerve scares me. I'm also worried that by letting it go, it may be more challenging to remove if it doesn't go away on it's own. How long after your son was diagnosed did he have surgery? Also, if you don't mind me asking, where did you have the surgery done? Thanks so much.

Anika said...

Hi Aimee,

I hope you check back and get this response...sorry I didn't see your comment and questions earlier.

What I was told by our ENT is that the body can't absorb this type of infection, therefore it will push its way out of the body...hence the red bump Ezra had right before surgery. He told us that without surgery, the infection would come to the surface, break open the skin, and drain for a long time, possibly over a year, and then he would be left with a large scar and indentation. So surgery was our best/only option.

We first noticed the bump around Thanksgiving time and it took about 3-4 weeks to get in with the specialist and get our diagnosis, then surgery was at the end of January...so it was about 2 months.

The facial nerve certainly made it a scary and long procedure, but they used monitors to help prevent damaging it.

Ezra's surgery was done at Amplatz Children's Hospital which is part of the University of Minnesota's hospital. Our Pediatric ENT was Dr. Frank Rimmel...he was amazing (interesting bedside manner, but extremely knowledgable and has a lot of experience.)

Tmille said...

OH MY GOSH! I am so glad I randomly found this blog. I live in MN, and my 2 year old son Cam also has been diagnosed with this. I now think I will see if I can get in with your ENT - and have it opereated on. The guy we saw at children's wants to operate, our ENT doesn't, and now we have a referral to a different ENT... so we feel like we are just jumping through hoops. Meanwhile he is on Clarythromyacin 2 times daily... :( Cam's is in the EXACT same place your son's was!

Anika said...

Hi Tmille,
Glad you found my blog too...I had such a hard time finding anything out about this crazy infection and others experiences with it when Ezra was diagnosed. I am not sure where Dr. Rimmel is seeing patients now, we got a letter saying he was leaving the U of M. I think he was also at Children's, so maybe he is still there. He was amazing though so definitely worth looking into! Good luck!

Tmille said...

​Hi Anika-
Sorry to bother you. I found your blog, and my little guy also has atypical mycobacterium (can I just call it AM so I don't have to keep typing that!!?)

Anyway... he started with just an enlarged lymph node, and then finally it got big and started getting red and purple colored. At that point we brought him to an ENT, who said A.M.

He referred us to a guy at children's, who also said a.m. but that guy said to do surgery, and my ENT said to do clarithyromyacin. So... Cam has now been on Clar.... for 3 rounds (14 days each).

Friday night - the thing was so huge and swollen that in his sleep it burst. He woke up several times crying oweee" in the middle of the night, and Saturday when I got him out of his crib, i saw that it was no longer a lump, and it had drained.

I thought it was ok, until this morning when I emailed my mom, she emailed back freaking out asking me if I thought it could have drained back into his system...and this morning he did have a bit of a fever, so now I'm worried!

Just wondering if your son's AM burst, or if they operated before it had a chance to burst? Also, did you get a blood test done to say it was for sure AM or not? They have not done any kind of testing on it, and so I am leaning towards surgery since 3 rounds of antibiotics didn't work... but I would like them to know for sure what it is before I have them operate.

Anika said...

Hi Tmille,

Ezra had surgery before it burst. Afterwards, some of the residual infection did drain out when he scratched it, but it wasn't much. They did send the mass in for testing to confirm that is was A.M. Once it was tested they determined what antibiotic could help wipe the rest of it out so he went through a cycle of that...sorry, I have no idea what antibiotic it was, but I think he was on it for 3 weeks.

From what our ENT said, if we didn't do the surgery it would continue a swelling then bursting pattern for a long time...possibly more than a year...and leave a bad scar. In his opinion it was never an option to not do surgery and we trusted him.

Tmille said...

Cam sees dr. Rimmell today! So very thankful I found this blog, I only requested dr. Rimmell after reading this!

Anika said...

Tmille, I am so excited that you got in with him! He is an amazing doctor! Please keep me posted, I would love to hear how things turn out! I will keep you and Cam in my thoughts and prayers. :)

Sammy Yang said...

Hi Tmille, so did your son finally went under surgery?

Sammy Yang said...
This comment has been removed by the author.
Lindsay Darling said...

Hi Anika,

I have been following your blog for quite sometime as my now 3.5 year old daughter has had AM for 1 year now. We did an initial I&D for drainage and culture a year ago and then had her on 3 daily antibiotics for 9 months. The antibiotics seemed to shrink it and made the color lighten up as well. However, we decided with our ID physician to stop the antibiotics due to the positive progress. She has been off of antibiotics for 2 months now, however, it looks exactly the same. Not better, not worse.

I am just curious if anyone else out there has gone this route and had success? The ENT is extremely resistant to surgical removal as her AM is right in the middle of her cheek along the facial nerve, not along the chin or neck. I don't want to put her through surgery this point, especially since it is not advisable. However, how long is long enough? This is my true struggle. I feel like we have been patient and attempted the least invasive routes with no cure. Has anyone actually seen this go away after 1 year of treatment or is surgery inevitable? Thanks again for sharing Anika, this is very helpful.

Thank You.
-Lindsay-

Anika said...

Hi Lindsay,

Our ENT said surgery was the only option...granted that was over 5 years ago and advances are always being made in the medical field. As far as the location of her AM, it may be possible for them to make an incision along her jawline so it's better hidden; Ezra's incision ended before it reached the location of the infection, and even if it's not possible, kids skin heals amazingly well, we used Mederma for Kids for a few months after surgery and his scar is nearly invisible. If I were you, I would look for a second opinion at this point. That's a long time to be on antibiotics and I would worry that the area of the infection would leave a worse scar than a surgical incision.

Claire Frost said...

Can't believe I stumbled across this! My 2YO developed a lump that terrified everyone for over a month of dr visits and specialists until AM was what it was determined to be.

We had a surgery to remove one lump (not the visible one) to confirm and she's on azythromycin (antibiotic) now to speed along the healing of the other bump. Well, it's been almost 2 months since the surgery and we're still on antibiotic but there is no change in size, but there is definite change is color. It's getting redder (and still darker in one spot) and it seems like the texture is changing. It's almost flaking.

I'm terrified it's going to burst, which to be honest, no one (not the ENT, not the ID doc) has mentioned. I was told "after this round of antibiotics I won't prescribe anything else bc it will heal on its own, though that may take up to a year," and "there may be scaring." It's just from my own research that I deduced that the healing/scarring he was referring to was it bursting and then scarring over.

Like so many other posts, our docs were all against surgery to remove this nodule. It's in an awkward place that is risky to facial nerves. She's only just now getting her normal smile back from the first surgery... and I just can't bare to risk another, but I also don't want her to scar or go through the pain of bursting.

Any words of advice, opinions, thoughts, support, etc... are welcomed! We're in Atlanta and went to Children's (which I LOVE) for the surgery, and while I love, love, love our pediatrician, I'm not so in love with our ID & ENT docs.

I just feel overwhelmed emotionally, mentally, and financially! Surgeries aren't cheap as I'm sure you know! And we've already gone through one.

Claire