Congenital CMV hearing loss

[patch2006uk]

Isaac was born with a mild hearing loss in his left ear, and a severe high frequency loss in his right ear.

We have been having investigations done for the last year, and today they have given us a provisional diagnosis of congenital CMV. His newborn blood spot was negative for CMV, however he is excreting CMV in his urine, and has been for months. Based on this, the paediatrician is led to believe that the blood spot is a false negative, and that since he has been excreting the virus for so long, that he was exposed to it in utero.

So, we've got an appointment with a CMV specialist in a few months, another hearing test in June, and eye test in July and a little leaflet explaining what CMV is and what it causes.

Apparently it can be a progressive hearing loss, so we're planning on keeping going with the signing and maybe learning some BSL, just in case his hearing deteriorates rapidly at any point. He's speaking well already, so I think regardless of what happens from now on, he'll retain some speech.

It's just the unknown now. His hearing might stay the same, might get a little worse, or might go completely. We won't know until it happens. It seems that most lose their hearing, if they're going to, in the first 3-6 years, however I have read that some people are fine until adolescence, and then wake up one morning with their hearing reduced. We're supposed to have 6 monthly hearing tests until basically forever, however he hates the tests and doesn't cooperate, so we've struggled to get a baseline as to what his hearing actually has been up to now. We're just going to have to keep a close eye on him, and if he suddenly can't hear as well as he could, we have to take him for urgent tests to see what's happened.

Fortunately his eyes don't seem to be affected by it - there's no scar tissue they could see, and his vision is perfectly normal up to now. They recommend eye tests every year, so we'll be keeping tabs on what's going on with his sight.

Has anyone else had this diagnosis? The only symptom in Isaac seems to be this hearing loss, which I'm grateful for as in utero CMV can be really nasty from what I've been reading.

 

[mummyruston]

Isaac was born with a mild hearing loss in his left ear, and a severe high frequency loss in his right ear.

We have been having investigations done for the last year, and today they have given us a provisional diagnosis of congenital CMV. His newborn blood spot was negative for CMV, however he is excreting CMV in his urine, and has been for months. Based on this, the paediatrician is led to believe that the blood spot is a false negative, and that since he has been excreting the virus for so long, that he was exposed to it in utero.

So, we've got an appointment with a CMV specialist in a few months, another hearing test in June, and eye test in July and a little leaflet explaining what CMV is and what it causes.



Apparently it can be a progressive hearing loss, so we're planning on keeping going with the signing and maybe learning some BSL, just in case his hearing deteriorates rapidly at any point. He's speaking well already, so I think regardless of what happens from now on, he'll retain some speech.

It's just the unknown now. His hearing might stay the same, might get a little worse, or might go completely. We won't know until it happens. It seems that most lose their hearing, if they're going to, in the first 3-6 years, however I have read that some people are fine until adolescence, and then wake up one morning with their hearing reduced. We're supposed to have 6 monthly hearing tests until basically forever, however he hates the tests and doesn't cooperate, so we've struggled to get a baseline as to what his hearing actually has been up to now. We're just going to have to keep a close eye on him, and if he suddenly can't hear as well as he could, we have to take him for urgent tests to see what's happened.

Fortunately his eyes don't seem to be affected by it - there's no scar tissue they could see, and his vision is perfectly normal up to now. They recommend eye tests every year, so we'll be keeping tabs on what's going on with his sight.

Has anyone else had this diagnosis? The only symptom in Isaac seems to be this hearing loss, which I'm grateful for as in utero CMV can be really nasty from what I've been reading.

How did you get on? How do you know he was excreting CMV? And was the bloodspot for CMV standard?