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Reply To: Child with myco Abscessus in head

Home Forums NTM Support Forum Child with myco Abscessus in head Reply To: Child with myco Abscessus in head

#5686
Asheekstasheekst
Member

My son was born with an arachnoid cyst in his left temporal lobe. It did’nt cause any problems until he was about 4. Then it shifted and started to put pressure on his brain, so they opened it to drain it. Turns out he has secondary hydro and could not absorb the excess fluid now able to get through so they had to put in a VP shunt.( drains the extra fluid to his peitineum).
His wound would not heal and ended up having multiple revisions for various infections. He had another infection last april and was in icu for 2 weeks on anitibiotics, that one cleared up but 2 weeks later he was back with temps reaching almost 106. Still nothing had showed up, but his crp rate and his white cell bands were were high. They took out his shunt and drained 200 CC’s of fluid from his belly. His cultures still had not grown anything until they took him off of the ceflex he was on. That was when we got the news it was AFB in his CSF. They had to send his cultures to NJM. after a couple of weeks it came back Abscessus. By then he had more surgeries to replace his EVD(external ventricular Drain) because of the inflammation in his head, and had laproscopic surgery because it caused severe peritinitis. It ended up causing an encapsulated granuloma in his head( yet another surgery) that took 3 neurosurgeons 4 hrs to take out. The problem was it was attached to the carroid artery so they had to leave some in.
Anway he was in ICU for 3 months then sent home on IV Amikacin, Cefoxitin, Tygacil and zofran. Oral biaxin. After 6 months of IV he is finally in his last 2 weeks of oral meds of Azithro, biaxin and Zithromax. The doc said it can come back so we just have to wait and see.
The bad thing is, even National Jewish said they have never had a case of it within the brain. They were going to send him there but they said they could’nt do anything different from what we were doing here.