Feldgruppe
TB&Me: Two years of treatment is a lot for a child

When nine-year-old Mukhamadjon was diagnosed with extrapulmonary (located outside of the lungs) multi-drug-resistant tuberculosis (MDR-TB), his grandmother Saida supported him through two years of grueling treatment. Here, she shares their story.

After I lost my daughter because of TB I adopted my grandson.

We were doing OK until one day I noticed swelling on his body. I got worried and took him to see a doctor.

We went to the district hospital, where we were told we needed tomography imaging for a diagnosis. Tomography costs money – I didn’t have enough but I decided to do it when I got my pension allowance.

Unfortunately, soon after I got into a car accident and I had to receive some medical treatment myself.

But time was passing.

Diagnosis

Afterwards, I noticed the swelling became bigger and I took my grandson to the hospital again.

I was finally able to pay for the tomography and the doctors did a proper screening. They said the lab tests showed he might have TB.

It was so stressful to go through the screening, especially for my grandson. I remember he was really scared of the screening machines and when the doctors suggested surgery for the swelling.

In the end, we were referred to TB hospital.

Doctors at the TB hospital confirmed the diagnosis: multidrug-resistant tuberculosis (MDR-TB). This is a form of the disease that can’t be treated with the drugs that are usually used.

The doctors told me that the treatment required many months, or even years, and there were many possible side-effects. I cried a lot – my grandson was a little child, I was afraid he would die.

It was difficult to imagine he could be cured.

Starting treatment

I calmed down a bit when the doctors explained the treatment, told me there was support, and that other children were doing well on the regimen.

Indeed, when we came to the hospital’s multi-drug-resistant TB ward I saw other children taking treatment: they were playing and taking their drugs.

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Saida and her grandson Mukhamadjon with members of the MSF team
Saida and her grandson Mukhamadjon with members of the MSF team

In the end I was satisfied with the fact that treatment would be under close observation and I agreed to start him on it.

We spent nine months in the hospital. It was not easy: nine months of injections and a lot of pills to take every day.

He used to cry, refusing to take the drugs.

I caught myself thinking it would be good if injections were prescribed only when it was absolutely necessary and for a shorter period, not 8-9 months as we had.

The play therapy room really helped him to go through this, and his mood was better when he played with other children.

Coming home

After he came back home the treatment became a bit easier because in that phase of his treatment he no longer needed to have the injections. Being at home with our family also helped a lot.

Now that he’s cured we come to the hospital for regular check-ups, as agreed with the doctors.

To be honest, witnessing my grandson’s suffering from the long treatment made me wish the regimen could be revised so that injections are replaced with drugs that are easier to take.

I also realised that moral support is very important during the treatment of multi-drug-resistant TB. During this long journey children need attention – we need to create a positive atmosphere around them, to talk and play with them.

Also, if a kid’s health condition is not so severe, why not to start treatment at home or closer to home? Staying nine months in the hospital was too much for us.