So far cultures are still negative, we would be very surprised if that changes. Lucy’s urine culture did come back with bacteria that she has grown before. We believe that her bladder is most likely colonized with the bacteria, we are not really surprised since she has a neurogenic bladder and is cathed several times a day, everyday. We believe that Lucy experienced a very rare side effect, serotonin syndrome, from the medication that she started on Friday. We started Lucy on Lexapro, it is an SSRI-selective serotonin reuptake inhibitor. These types of meds are most commonly used to treat depression, this is not why we were using this med for Lucy. SSRI’s are also used as an effective pain management medicine for individuals with neuropathic pain, the type of pain that we believe Lucy experiences on a daily basis. In theory this would have been a good alternative to narcotic pain relief for Lucy…if it had worked. Serotonin syndrome can be fatal if it is not detected early, the treatment is discontinuation of the medicine and supportive medicine for the resulting symptoms. Lucy only had one dose of the medicine, thank God, we don’t even want to think about what could have happened if she had any more than that. Lucy’s autonomic system is storming due to her adverse reaction to the med; blood pressures, heart rates, body temperatures, are all over the place. Her neurological system took the brunt of the impact, affecting her balance, speech, movements, and causing seizures. As the medication metabolizes through her system we are seeing a decrease in her symptoms.
When discussing Lucy’s symptoms with our main doc he said that he was surprised, but then again not, it’s Lucy! I know I have mentioned this before, you know the fine print that reads less than 1% of people will experience this, that, or the other when taking this medication, that’s Lucy! Our palliative and hospice care team have officially been initiated into Lucy’s medical world.
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Poor little one! Praying that she's feeling better for Christmas.
Thank you for explaining this so well. Your explanation helps others understand and direct their prayers.
Barbara
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