Mono then GBS in 24 month old

    • October 11, 2021 at 3:00 pm

      My 24-month-old son had a severe case of mono in August. It was misdiagnosed as strep. He was given amoxicillin — 7 days later he had a rash from head to foot. They took him off thinking it was an allergy to the antibiotic. His throat was still terrible. They put him on clindamycin. The rash turned into a petechial rash. He started complaining of pain in his feet and his penis (at the time we thought it was the rash). His fever spiked to 102: we took him to the ER. My mother insisted they do a mono test because she had a rash with mono on antibiotics when she was a teen. He had a positive mono spot test. They sent him home. His pain seemed to get worse. Night terrors. No sleep. We took him back to the ER. They basically sedated him. Sent him home. As soon as the drug wore off the sleeplessness continued. For 4 weeks, the pain in his penis, legs, hands, feet continued to get worse. Regular doc visits. We tried everything we could think of at home: he no longer wears a diaper or anything from the waist down. Especially not at night. We try putting wet and dry cloths on his feet, penis, Vaseline on the feet and then blowing on it. We got him soft sheets. The pediatrician put him on round the clock motrin and tylenol for a weekend (it took the edge off — he’d still wake in the night but i could get him back down. he’s still in pain but it’s more manageable) then told me to take him off after 4 days  — hoped that this would reset his system. It didn’t. Redness appeared but not at the joints: ears, bottoms of the feet, splotches on his cheeks. It went away. New doc said try benadryl at night. That worked to knock him out at night for 4 days. Referral to pediatic rheumatology: they wanted him back on the motrin and tylenol at night. Not benadryl. They referred to neurology. Neurologist couldn’t get any reflexes in my son’s legs or arms during the physical exam. We opted not to put him through the lumbar puncture etc to test for GBS. Neurologist can’t confirm without the tests, we know but he thinks it’s GBS. It makes sense. We are afraid of gabapentin: bad family history with frightening and dangerous side effects. We’ve been managing the neuropathy with weighted blankets and deep pressure devices and motrin at night or when it gets bad. Some days are better than others. We are almost 2 months in. We are opting to watch and wait and hope that this improves with time.

      Here is the summary of what he seems to experience: nerve pain in feet, penis, hands, legs. night terrors. overheating. sensitivity to heat (though he likes his weighted blanket despite the fact that it sometimes seems to overheat him). possible increase in nerve pain when it rains. he is still walking but he’s not steady and can fall out of nowhere.

      My question for the forum is: have you or your child experienced GBS from mono? Can you describe for me the experience? My son is basically nonverbal (he can tell me if something hurts but not how) so I need to know what it was like so that I can care for him. Any advice would be appreciated. Thank you.

    • October 13, 2021 at 10:50 pm

      I have never had mononucleosis but I understand it can trigger GBS in some. Without the tests to confirm GBS (check for elevated protein, EMG, etc.) it could also be Epstein—Barr Virus (EBV). Some symptoms are similar. Here is a CDC overview: