It took us a couple of weeks to get into the pediatrician after we got home from China. It wasn’t a big deal that we were waiting so long though. We’d already seen a nurse practitioner for the urgent medical issues, a specialist for her documented special needs, and the medical visit in China. We were covered right?
When we finally got in I sat down with the head of the practice and a medical student. The medical student examined our daughter while the doctor and I went over the list of tests that had been recommended and pieced together our daughter’s medical history from her file, updates, and info we received in China. We settled on a few tests that seemed most important. One of the recommended tests was a repeat TB. I didn’t question the doctor even though the TB test in China came back negative. The doctor opted to do the skin test.
Over the next couple days I noticed a hard raised red area and did some quick research. Since our daughter had the TB vaccine in China she would always test positive with a skin test. It usually is not recommended that a person who has had the vaccine receive a skin test. I could relax. I almost forgot to have the test read.
In an attempt to avoid taking all four children to the pediatrician, the youngest two and I rushed to the pediatrician’s office and arrived just before their lunch break. We slid into the office with a whole two minutes to spare. I didn’t think it would be a big deal because a nurse just had to glance at our daughter’s arm and we’d be on our way or so I thought. The nurse glanced down at our daughter’s arm, frowned and looked a little closer. She looked at me with concern, “I am going to have to get a doctor to look at this. Can you step into the room?” Great.
The doctor came in glanced at her arm and walked back out. She came back in with some books and a ruler. She shut the door. That’s when I knew it was serious. She drew a circle on my daughter’s arm and measured. She told us that even with the vaccine our daughter’s reaction site should be no larger than 10 mm or 15mm at the most. Our daughter’s reaction site was 25 mm, very red, raised and hard. She’d checked all her resources while she was out of the room. She was sending us to get a chest x-ray immediately.
We left the pediatrician office and headed straight to get the x-ray. I was still in shock over the news I’d received so I didn’t even think about having my other three year old with me. When we were called back the receptionist graciously offered to watch my other three year old since she wouldn’t be allowed in the room during the x-ray.
Once the x-ray was over the waiting and educating began. The CDC website was hands down the most informative and accurate information on Tuberculosis that I found. I was reassured that children under 10 can’t typically cough hard enough to pass TB. I was relieved to know if the x-ray came back and she was positive at least she wasn’t contagious and my other children were safe. We received the call that the x-ray was positive. Our daughter has latent TB.
We would not have known until it became a problem had the doctor not requested a second TB test (the first being in country). We are very fortunate it was caught since untreated latent TB can lead to meningitis and of course active TB. After being diagnosed there was a lot of cooperation between infectious disease at two major hospitals, our specialists, our pediatrician and the department of health on the county and state level. It was decided the best course of treatment would be to meet at the local detainment of health once a week for 12 weeks so two medications could be administered to our daughter.
At first I was frustrated about the weekly trip, but I’m thankful for it now. My daughter is very resistant to taking the medication so with a nurse administering it outside the home, home gets to remain a place of comfort and I get to remain the good guy. We just make a special morning of it with lots of treats and a trip to the playground.
After her treatments are finished we will need to continue to monitor our daughter for symptoms, however, in the unlikely event that the TB ever becomes active it will be less severe since we treated the latent TB.
– guest post by an anonymous mom
I’ve been following this blog for a while, but this will be the first post I comment on, mostly because I want to reassure you that: latent TB is not nearly as scary as it’s often portrayed to be. I was diagnosed with it somewhere around age 10 and, after taking medication for the prescribed amount of time, have not once had an issue thirteen years later. Even with other persistent medical issues and many illnesses that involved lung infections that I’ve had, nothing has happened and it is very, very unlikely that anything will ever come of it. All it means is that any future lung issues have to be monitored a wee bit more and your daughter won’t be able to donate blood when she gets older.
Aside from that, it really is no big deal! Please don’t spent too much time worrying about it. From one latent TB carrier to the mother of another, it’s very unlikely to negatively affect her life at all. It certainly hasn’t for me. 🙂 I remember my mother being so concerned, but here I am! 23 and with a plethora of issues, but never any regarding or because of the TB (haha!).
Thank you for sharing your story! Our daughter had a reaction to the TB skin test due to the BCG vaccine. Her chest x-ray was negative but it was still a stressful situation that took us by surprise. Hope the rest of your daughter’s treatments go well!
I normally don’t comment, but when I read poorly written medical information, I feel the need to help prevent others from panicking. I’m a pediatric nurse, living in a TB endemic area in Southern Africa and adopting from China as well. I also have LTBI (Latent TB Infection) and did 9 months of INH. I also advocated that my child (age 3 at the time) was tested and retested with quantiferon gold with the skin test was administered incorrectly twice (which can lead to false negatives/false positives).
The way this post is written, it does not make it sound like the child was diagnosed with Latent TB. First of all, the positive skin test could be a false positive in light of BCG vaccine. It sounds like her nurse/doctor overreacted. I’d have to check my infectious disease manual, but I think the statement that even a child who had BCG vaccine would have a reaction be less than 10mm is incorrect (a false positive can be > 10 mm & reactions over 15 mm are unlikely to be from previous BCG vaccine, though it is still possible). Second, a positive xray could indicate ACTIVE TB not latent, but you can’t really trust a chest xray as confirmation in a young child as it is not reliable. So again, the child isn’t confirmed to have latent TB after the x-ray alone. The next step is to check sputum & ask the usual screening questions regarding fever, cough, weight loss, night sweats, lymphadenopathy, etc. Also there is no mention of confirmation by gastric aspirate, quantiferron, gene xpert, etc. All of that would need to be done to rule out active TB and could even rule out latent TB if everything is negative –which could point to a false positive. Without all that info in the article it sounds like from info given that the child could have been misdiagnosed. Either the child has active TB that wasn’t caught from sputum, blood, gastric tests (and therefore is not on the correct treatment dose/regimen) or the child just had a false positive and they confirmed with an Xray only (which as stated previously isn’t sufficient). The child could then have taken meds unnecessarily.
I would read the article as written with a grain of salt. Maybe the author left out other pertinent info in their journey which he/she thought insignificant, but it could be helpful to know the whole picture. As it is written, it seems the medical staff’s initial reaction to a positive PPD test sounds all a little out of line.
People who aren’t familiar with LTBI and how it is confirmed, could potentially advocate to their doctor for the wrong tests and interpret results without the full picture. TB in children presents differently than adults. For example, children under 5 are way more likely to have complications from active TB. Disseminated (not pulmonary) TB is more common in children, so even a truly positive chest x-ray (confirmed by lab studies) would be extremely rare. As an aside, the BCG helps prevent dissemination not active pulmonary TB so children who have had the vaccine are not immune to TB as most parents think. In summary, you have to look at the whole picture in children and a TST and xray alone is not confirmatory so I think the author needs to clarify how the latent TB diagnosis was achieved after consulting with the experts to help parents further understand the complete journey.
My dad has latent TB and has never had any issues nor has it ever activated. He’s 59 and healthy as a lark in that regard. I’ll send up a prayer for your daughter that hers stays latent too!
I just wanted to comment that when I was pregnant with my (now 10 yo) son, I was tested for TB, as the hospital that I would be delivering at had a policy to separate the baby from mother if there was no test(!). I was flabbergasted to find that I was, indeed a (latent) carrier of the disease. My great grandmother died of the disease when my mother was a child, and I was very alarmed. The health care workers informed me that unless I had a immune disease that caused the infection to come out of dormancy, tb likely would never be an issue. In fact, I am surprised how now, 10 years later, while I look up information about latent tb, the information seems to point in a much more dire, desperate direction. I was told in the past that the antibiotics were very strong, and to be avoided unless necessary. I was happy to find the comments in the blog, as I wonder if the medical community is reacting to influx of tb patients coming into America from other countries. Perhaps the true concern is to stomp out the risk of spread. Seems like hysteria. I wish there were more conversations online with other latent carriers.