The news that Meron ( our 8 month old adopted daughter) had TB was a blow, however, we were thrilled that it was a curable disease that could be easily treated with antibiotics.
Luckily, we live in a city that has many specialists to choose from. Finding a pediatric Infectious disease Dr was our first issue. We found a great one and started her on three (or was it 4?) antibiotics right away. In our state it is a law that people with TB needs to do Direct Observation Therapy (DOT). DOT means that TB pts need to be observed taking their medicine every day. TB medication often has bad side effects like joint pain, and stomach upset. On top of that, the duration of treatment is 9 months. Think about it. Most people have a hard time finishing their antibiotic prescriptions if they last 1 week. 9 months of therapy can be tough, especially if the medication makes you feel ill. So, to protect the community from a highly infectious disease, the state mandates pts with TB need to take their medicine in front of a health worker for compliance.
Every morning at 7:30 AM, the county health department sends a person to our house to watch us give Meron her medicine. Overall, she does really well with it. We initially hid the medication in applesauce or carrot juice. When the protests became too great, we decided just to give her the medication straight up. It is what it is (horrible tasting) ,and covering the flavor a bit with applesauce barely hid the taste.
We then had to get a sputum sample from her in order make sure she was on the correct antibiotics. If we could get a good sample of sputum (lung spit) from her we could be sure that the TB was sensitive to the antibiotics we had her on. In adults, this sputum sample is easy to get. “please cough up some phlegm” … In a baby… not as easy…. We took her to the hospital three days a row early in the AM. The Dr inserted a tube down her nose to get some swallowed spit from her stomach. NOT FUN for her. However, this is the test that helped us the most. The chance that we actually would isolate the TB in one of these samples was about 50/50. We lucked out, and 7 weeks later we found out that she had a very fancy type of TB. Multi-drug resistant TB (MDR-TB). The TB that she had was resistant to several of the antibiotics that she had been on for several months already. Damn!! !!!
So we had to change it up and start her on a completely new regimen. She now needed 5 different antibiotics and the treatment would be 18-24 months instead of the standard 9 months. Four were given by mouth…. and we were used to that by now. Sadly, one had to be given through her veins (IV). We got a central IV line placed in her chest and infused her medication at home (with the help of home health) , 3 times per week for 4 months. A central line is a type of long term IV site that a cancer patient might have. The trick was to keep her from pulling at it. We wrapped her up in long sleeve turtle necks, ace bandages, and tape. I must say that my husband and I did a hell of a job keeping her hands away from that line. It was a true commitment.
It was a great day when we were finished with the IV medication. Getting that IV line taken out was WONDERFUL. From then on, we only had to give her the oral medication twice a day. The health department continues to come and visit every morning at 7:30. They health workers that watch Meron take her medicine have become a part of our lives. They are sweet people that have a soft spot for one of their youngest TB patients. They come Monday thru Friday. They trust us to give the night and weekend medication without observation.
The medication can be tough on her little body and we constantly watch her for side effects. She also gets blood tests to check her liver, thyroid, and kidney function every 3 months. We get eye examinations and hearing tests every 6 months.
This morning I e-mailed our TB Dr to find out what the FINAL date of medication will be. We are planning a big party for our little girl. I think April 22 is the day and we are almost there. We are so lucky for so many reasons…… to have health insurance, to have specialists so close to our home, to be dealing with a curable disease, and to have a daughter that is truly a fighter. My husband always says that Meron is the “toughest kid on the block” .
I agree. Thanks for your time and interest in our TB story. Feel free to email me with any questions at firstname.lastname@example.org
REMEMBER…. Get your adoptive kids tested for TB!!!!!!!!!!
Here is a link to a video of Meron’s medication administration. I created this for other parents. http://www.youtube.com/watch?v=k6bEIKfHmOI