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Manosse binding lectin deficiency
Hello I would love to hear from any other parents who have children with mbl deficiency. My daughter is 1.5 and was diagnosed at 10 months old whole after having infection after infection. She has had so many ear infections, throat infections and chest infections over the last year and after going around and around circles with diff doctors we have finally seen a immuologist who has recommended having her take a preventive antibiotic during the colder months just wanting to know has this actually worked for any other kids? Look forward to response as I haven't really been able to find much informations thanks so much in advance
my daughter is about the same age was diagnosed under year 1.5 and it shook my world.
just a quick one from me as I'm planning to come back and post a history and ask some questions soon.
MBL diagnosed within first year of life. I had to push for it though.
We also saw a lady at Great Ormond Street who said the same. I wonder who you saw. I didn't think she was well informed or had many patients with MBL over the years. She, in fact, didn't even answer my question on how many previous patients she had with it.
she even asked me if i was a doctor given the questions i was asking. didn't fill me with any confidence.
what i can tell you just of the top of my head is this:
in london, we had all our NHS vaccines done, plus meningitis b vaccine, booster preschool mmr (earlier than usual as some places in london are doing them closer together). so 2 mmr in total. meningitis ACWY lined up for after she's two years of age. Im debating the hepatitis one but have been told that we don't travel to such places so we don't need it. We also avoid plane travel due to the risk of infection.
we've also been tested for egg allergies amongst others - apparently you can get an egg free injection for children with allergies but it needs to be administered in hospital. more on this from me later.
She doesn't go to nursery. Does go to some toddler classes.
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