Our summer has been filled with doctors visits, praying, diagnostic tests, praying, waiting, praying, research and more praying. Well... I wish we had better news to report to you. However, Leah has been diagnosed with an NTM (Nontuberculous Mycobacteria) infection, more specifically, a mycobacterium abscessus (also known as m. abscessus) infection.
Testing Process
This is a very serious infection and the treatment is extremely intense and taxing on the body. Therefore, there are a series of steps to go through to diagnosis this infection and determine whether or not she has an active infection. Here is the process we have been through this summer after having two positive NTM cultures.
- Tuesday, June 10 - High Resolution CT Chest Scan
Doctor was looking for enlarged lymph nodes and nodules. The scans showed both were present, but didn't give us definitive results that the NTM infection is active. - Thursday, June 19 - Bronchoscopy
Leah's CF doctor, Dr. Akhter, performed the procedure. This allowed doctor to take a deeper sputum sample to culture. Doctor also suctioned out as much mucus as he could while he was down there. - Monday, June 30 - Culture Results from Bronchoscopy
We knew the longer we had to wait for results, the more likely they would be good. However, within two weeks, we got a call from the doctor's office. Leah's culture from the bronchoscopy showed a rare amount of Mycobacterium abscessus. - Thursday, July 3 - Consultation with Dr. Akhter and Dr. Collins
That Thursday, we went in for a consultation with Dr. Akhter and Dr. Collins (an infectious disease doctor that Dr. Akhter has been consulting with) to talk about this infection and discuss treatment options.
Lots of questions... not very many answers
After our appointment with Dr. Collins and Dr. Akhter on July 3rd, we were pretty sure that we were going to start treating this NTM infection soon. The treatment for this NTM infection is very intense. It involves 2-3 weeks of IV antibiotics, followed by oral and nebulized antibiotics for probably at least a year, in which she would be on multiple antibiotics at a time. This particular infection is known to be extremely resistant to treatment.
During the weekend, we spent time talking and praying and asking more questions and praying and asking others to pray. We put a call in to doctor on Monday with a list of questions. Since this is a rare infection, there's just not answers to many of our questions. We specifically wanted to ask if we could consult with other CF doctors who have treated patients with the m. abscessus infection.
Leah is Dr. Akhter's first patient to have multiple positive NTM cultures. He has had two bronchiectasis patients who have had one positive NTM culture, but their repeat culture came back clear. Leah is also Dr. Collins first patient with this infection, although a doctor she works with has seen one or two patients with it. Dr. Akhter also consulted with Dr. McColley (the director of the CF Center at Lurie Children's Hospital in Chicago) and she has not had any patients with this before.
Dr. Akhter contacted Bruce Marshall (the head of the medical branch of the CFF). He said most centers have probably only seen one or two CF patients at the most with this infection. He suggested contacting Dr. Scott Sagel (the director of the CF Center at Children's Hospital Colorado - which appears to be the leading experts in NTM and is the pediatric equivalent to National Jewish for adults). Dr. Sagel responded to Dr. Akhter and put doctor in contact with Dr. Stacey Martiniano, who is also at Children's Hospital Colorado and known as the local CF NTM expert.
They both recommended NOT starting treatment on Leah right now, but to watch her closely. Since she is so healthy right now, not showing any symptoms of having an active NTM infection, and the treatment requires being on 2-3 antibiotics for years, it is their professional opinion to watch Leah closely to see if the disease is active. They said the slow clinical progression of the disease would not put Leah to harm.
To watch Leah closely, we will be looking for any clinical changes (decline in pulmonary function, changes in chest x-ray or CT scans) or symptoms that might indicate disease (increased cough, fever/night sweats, weight loss). We will have appointments every 6 weeks. We will do a PFT (Pulmonary Function Test) at each appointment, a chest x-ray every 3 mos (when CT Scan is not done), and a CT Scan done every 6 to 12 months.
If she starts showing any of these changes or symptoms, we will first try to treat any of the typical CF pathogens Leah may have (she has cultured both staphylococcus aureus and haemophilus influenzae for years) before starting NTM treatment. Doctor said that he will be able to consult with both Dr. Sagel and Dr. Martiniano on Leah's case.
For those interested in learning more about the m. abscessus infection, we would be happy to pass along some of the medical articles we have been researching. Let us know and we can send it to you via email. Here is a link to information on NTM infections from the CFF: http://www.cff.org/Adults/Germs/NTM/
During the weekend, we spent time talking and praying and asking more questions and praying and asking others to pray. We put a call in to doctor on Monday with a list of questions. Since this is a rare infection, there's just not answers to many of our questions. We specifically wanted to ask if we could consult with other CF doctors who have treated patients with the m. abscessus infection.
Leah is Dr. Akhter's first patient to have multiple positive NTM cultures. He has had two bronchiectasis patients who have had one positive NTM culture, but their repeat culture came back clear. Leah is also Dr. Collins first patient with this infection, although a doctor she works with has seen one or two patients with it. Dr. Akhter also consulted with Dr. McColley (the director of the CF Center at Lurie Children's Hospital in Chicago) and she has not had any patients with this before.
Dr. Akhter contacted Bruce Marshall (the head of the medical branch of the CFF). He said most centers have probably only seen one or two CF patients at the most with this infection. He suggested contacting Dr. Scott Sagel (the director of the CF Center at Children's Hospital Colorado - which appears to be the leading experts in NTM and is the pediatric equivalent to National Jewish for adults). Dr. Sagel responded to Dr. Akhter and put doctor in contact with Dr. Stacey Martiniano, who is also at Children's Hospital Colorado and known as the local CF NTM expert.
They both recommended NOT starting treatment on Leah right now, but to watch her closely. Since she is so healthy right now, not showing any symptoms of having an active NTM infection, and the treatment requires being on 2-3 antibiotics for years, it is their professional opinion to watch Leah closely to see if the disease is active. They said the slow clinical progression of the disease would not put Leah to harm.
To watch Leah closely, we will be looking for any clinical changes (decline in pulmonary function, changes in chest x-ray or CT scans) or symptoms that might indicate disease (increased cough, fever/night sweats, weight loss). We will have appointments every 6 weeks. We will do a PFT (Pulmonary Function Test) at each appointment, a chest x-ray every 3 mos (when CT Scan is not done), and a CT Scan done every 6 to 12 months.
If she starts showing any of these changes or symptoms, we will first try to treat any of the typical CF pathogens Leah may have (she has cultured both staphylococcus aureus and haemophilus influenzae for years) before starting NTM treatment. Doctor said that he will be able to consult with both Dr. Sagel and Dr. Martiniano on Leah's case.
For those interested in learning more about the m. abscessus infection, we would be happy to pass along some of the medical articles we have been researching. Let us know and we can send it to you via email. Here is a link to information on NTM infections from the CFF: http://www.cff.org/Adults/Germs/NTM/
How are we doing?
This summer has been a bit crazy for us. We have been praying for a miracle. Honestly, we don't feel very confident in the treatments available for this infection, so we are convinced that we need to trust God with our little girl. We are praying that Leah will know how much God loves her as she goes through this. We are asking for God to work in a mighty way and take away this infection and heal Leah from this NTM disease. We know God is able to do what seems impossible to us. We are praying and trusting in him.
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As far as in how Leah is doing... she continues to look great and is not showing any outward symptoms. It is hard to believe this infection is inside her little body. Honestly, we are very concerned about the impact of this infection. We need your prayers and support as we go through this.
We are thankful that it has not slowed her down at all. She is fully taking advantage of her summer, playing with her sisters and friends, running around, swimming in our pool, reading new books, even going on all the water slides at the water park! Please keep our little girl in your prayers!
We are thankful that it has not slowed her down at all. She is fully taking advantage of her summer, playing with her sisters and friends, running around, swimming in our pool, reading new books, even going on all the water slides at the water park! Please keep our little girl in your prayers!
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