Acquired CMV and Medication Side Effects

Hi, I just wanted the experiences and advice of others. My toddler is 21 months old. He reached all his milestones early/on time, feeding very well and was very healthy/strong/super energetic. When he was almost 1 he caught a nasty virus and he stopped sitting unsupported, developed mild low muscle tone and couldn’t gain weight properly. Other than that, he was still developing in all other areas appropriate for his age. When he was 17 months old, I took him to see a Paediatrician as he was still not fully back to himself and still couldn’t do some things which he used to. I was hoping for a treatment. Well, he was hospitalised and given some strong medication to manage some mild symptoms of acid reflux and to prevent any future chest infections (although he’s only ever had it once after the virus) but they never gave a final diagnosis or treatment. They performed some blood tests and found he had previously had two different viruses - Cytomegalovirus (CMV) and Parvovirus B19. His full blood count was normal. He has an enlarged liver/spleen, glue ear and enlarged adenoids. Once we came back home, strange enough he couldn’t sit in his chair anymore and fell, his head was wobbling out of control as it did when he was a newborn, kept sleeping and he couldn’t move any part of his body properly including his hands! He is still like this now - literally like a newborn! - with no answers from any healthcare professional as to why. Funnily enough, once his medication was stopped two months ago and with some physiotherapy he has been slowly moving his hands/arms/etc - very slowly - turns out these medications shouldn’t have even been given to him as they are for severe symptoms only and for adults only!

So, now my baby is having to deal with both the effects of CMV as well as drug-induced myopathy. I just wanted to know what complications your little ones with acquired CMV had, how long it took for them to get back to normal and any treatment given or did they go back to their normal selves naturally with time? Also, if any children suffered from severe side effects (including myopathy) how long did it take for them to fully recover and how?

Thanks.

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