Our little Ezra is way to cool for your run-of-the-mill ear infection or any other kind of typical childhood illness! Somehow, he managed to contract an Atypical Mycobacterial Infection. What's that?? Well, it's something you get from drinking unpasteurized milk (which Ezra hasn't) or from eating bird poop!! The infection has an incubation period, so that means he contracted it when he was 3-4 months old...not sure how he managed to get into bird poop at that age!
See the red lump on his jaw line? It just started turning red last week (which is the normal course of the infection) and it doesn't bother him at all; he doesn't poke at it and it doesn't hurt him when we touch it.
This is the short version of how we figured out what he had...
On November 28th, I noticed a lump on his jaw line and instantly freaked out. Lump=Cancer in my brain! The next morning I called to make an appointment with his pediatrician. Unfortunately, he wasn't in that day so we had to see a different doctor...I won't go into the details, but that was a BIG mistake!
After 3 weeks of appointments including an ultrasound, blood work, seeing a pediatric ENT, a CT Scan, a Fine Needle Biopsy, a TB skin test, and a chest x-ray, we FINALLY had our diagnosis. An Atypical Mycobacterial Infection. It requires surgery, but it is NOT life threatening and that was a huge answer to prayers.
We are lucky enough to live within an hour of several amazing Children's Hospitals and the one Ezra will have surgery at is brand spankin' new! His doctor/surgeon is awesome, and we are confident that he will do a fantastic job. The main risk to the surgery is damage to the facial nerve that runs along the jaw line. Ezra's doctor has never damaged the nerve, though! Surgery is in a week. Any prayers that you could say for a successful surgery and smooth recovery would be greatly appreciated! I will update you all as soon as possible after surgery.
If you have more questions about our experience with Atypical Mycobacterium, please leave a comment or email me at thoner02k @ yahoo . com. You can read all my posts related to this here.
If you have more questions about our experience with Atypical Mycobacterium, please leave a comment or email me at thoner02k @ yahoo . com
Thanks a bunch!
~Anika
13 comments:
Poor little guy, Anika! I'll be praying for a fast recovery!
Glad that it doesn't bother him but sad that you guys have to go on this journey. He is so lucky to have such a wonderful Mom and Dad! Hang in there! I cannot imagine how difficult it would be to have to go through this but your an amazing mom and in a week he will be recovering!!!
Our prayers are with Ezra and you both during this time of waiting, surgery and recovery. Hugs to you all!
Talk about nerve-racking! I'm glad the surgery went well, hope the rest of the recovery goes well too! :)
My daughter presented these symptoms. I took her to the ER and she was discharged after blood work for catscratch the first time. It got worse and she was admitted the second time with iv antibiotics which did not help. After more blood work, chest xray, CT scan and ultrasound, they say it appears to be 'scrofula' . I've been scouring the internet tonight to find answers to my questions and similar cases. She will have the mass surgically removed on Thursday.
Hi, my son currently has a lump that looks similar. We checked in the hospital for 3 nights for IV antibiotics. They did a blood test and ultrasound. We got released as it looked better, but wasn't gone. We were given oral antibiotic for home. But, returned two days later as it got worse. His is tender to the touch. When we returned, they did a CT scan (there were no fluids), chest x ray, and a FNA for biopsy. ALL test have come back negative, including bartonella (cat scratch) and atypical mycobacterium infection, which is what the docs suspected. Which one of your tests indicated a.t. mycobacteria? The only test you had that we didn't seems like the skin test. Although I am not sure if that's necessary since they did the fine needle aspiration for a biopsy. We were released again after 3 nights, and now its getting red again. Clearly the oral antibiotic is not helping and they need to determine what it is!
Hi OneTwoIDo,
After the biopsy showed infectious cells, they did the tuberculosis skin test. We suspected it would be negative because he was so young, but when it came back positive, we knew it was the atypical mycobacterium. (We had already had a chest x-ray to rule our actual tuberculosis.) It was a very slowly developing lump...the skin did not change to red for nearly 6 weeks after we first noticed the lump and it never caused Ezra pain. I hope they get to the bottom of your son's case quickly. Waiting for answers is hard!
Did he get any scarring? My two year old has the same infection. We've been fighting it for 6 months. (3months of hardcore antibiotics) it ain't getting any better. I'm considering doing the surgery. How quickly did your son recover and how did the ENT approach the surgery? We've had a consult and they said it would be best to go to the neck to avoid the facial nerve. My sons infection is infront of his right ear, an inch above the jawline.
Hi Mari-ego, I have written several follow up posts that will answer your questions...just click on the Atypical Myco label.
Our surgeon started the incision by the front of the ear, from there they located the facial nerve and hooked it up to a monitor that would buzz if they got close to the nerve at any point. Then they continued the incision down to the infection under his jawline. We are almost 3 years post op now, and the incision is so light you really have to look to see it...we used Mederma for Kids following surgery. He has a pea size scar where the infection was, but it continues to get lighter and it is hard to notice due to the location.
If you have more questions, you can email me at thoner02k at yahoo dot com I hope you are able to figure out your son's case soon.
Hi Anika,
Thanks so much for your response to me! Would you believe I just now saw your post? My little boy ended up spending 3 additional nights in the hospital, for a total of 6 nights for IV antibiotics. They initially gave him Clindamycin, but them switched it to Azythramax, which seemed to do the trick and got him healed. It appeared in October 2014 and we were just now cleared from the ENT at the end of Jan 2015. All tests, including the one we had to wait 6 months to culture, came back negative or inconclusive. Docs said the inconclusive was likely because the antibiotics, but still diagnosed it as atypical mycobacterial infection.
Hi Anika,
My daughter is having surgery on Monday for the same thing! Our journey started last month when the entire left side of her neck was swollen. We went to the ER and they tested her for mumps! Of course it was negative and the swelling went away but there was still a very hard lump up under the left side of her jaw so they said it was an infected lymph node and put her on an antibiotic for 10 days. I ended up having to go out of town for 6 days for work shortly after that. When I returned she was done taking her antibiotic but she still had the hard lump and it was bigger! So off to Children's ER we went. They then did a sonogram and wanted us to see a pediatric ENT. Went and saw him which was this Weds and he has scheduled her surgery for Monday! He has actually dealt with this before so as soon as he saw it he knew. He gave us the options to do a biopsy or MRI first but said that he would prefer to remove it and then do a biopsy. Which worked for me because I want it out of her. It started turning red about 5 days ago. It pretty gross looking! I will be so glad to get this out of her! I'm so happy to see that Ezra has healed so well. Thank you so much for sharing your story, it makes me very hopeful.
Attie
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