Diagnosed with low MBL (mannose-binding lectin) deficiency

[johnston15]

My daughter was just diagnosed with a MBL (mannose-binding lectin) deficiency. She is 6 years old now and has been plagued by multiple pneumonias and sinus infections. What is the prognosis of this deficiency or what can we expect for her future. I am having trouble finding any down to earth explanation about this deficiency.

[Katy5762]

I too, have recently been diagnosed with MBL deficiency.  I am using prophylactic antibiotics (September -May=our cold/flu season). I haven't had an infection yet this season, even after sharing an office with someone who was sick!!  Doesn't sound like a big deal but prior to being diagnosed and prior to treating, I would have been miserable with a sinus infection.  
Sounds like your son needs a little bit more help.  I am not a doctor but I work for a plasma donation center and am very familiar with Immune Globulin treatments.  IVIG/Gamma Guard is an amazing product and I work every day to make sure that we are collecting safe plasma to be used in making these products!!!  
If antibiotics aren't helping your son live a 'normal' life then I would encourage you to follow your 'mom' instincts, even if you need to find a new Immunologist!!
Good Luck!!

[becmarch]

I am SO glad to have found you, what a relief.  My daughter, 4 years old, was diagnosed with MBL deficiency last year and it's just been a nightmare.  Tons of infections, in the hospital all the time with asthma, fevers constantly.  We keep managing each event with the help of our immunologist and pediatrician but it has still been really hard to get some real advice on what this means for her going forward.  We tried parttime preschool and there was just no way, she was sick so bad, all the time.  She is supposed to start kindergarten next year and right now I just don't see how she could go to school and be around other kids, the only thing that has helped is keeping her as isolated as possible so she isn't exposed.  Does anyone have any thoughts on the kids going to school with this?  Has it worked out ok for you?  thanks so much for any insight, everything Ive found online is so technical, and doesn't give me a clear picture of what life with this will look like...

[doubleJZmom]

My son is 7 yrs. old, he was diagnosed at age 5 with MBL deficiency is levels are .01 he attends regular public schools but he wears a mask for his protection, he is also on rotating prophylactic antibiotics which means one month is sulpha, the next month amoxil, the next month sulpha, etc.... Does it cut down on being sick?   A little but whatever his life will be like (a long life or short life), my husband and I want him to experience life just like any other little boy.  There is something you also need to know about my son, he has had ASD closure for his heart almost one year ago and he bleeds from his nose profusely and has dime size bruising on his back, legs and arms.   He is being tested at Duke University Children's Medical Center.   Good luck to each and everyone of you.

[jenjenski]

My daughter has been diagnosed with MBL deficiency and is 18 months old.  Her doctor has also suggested rotating prophylactic antibiotics.  Does this help your son fight off more infections?  My daughter has been sick constantly for 3 months (respiratory infections, ear infections, colds, etc) but everyone chalked it up to being in preschool--now we know otherwise.  Have you been able to keep your son in school consistently?  I definitely want her to live a full life and be just like any other little girl as well.  Good luck and thank you to everyone on here-this is the most information I have found that doesn't have a ton of medical jargon.

[laydeebugg]

I am now 16 years old and have had trouble with my immune system since I was born, after discovering I had astma at one years old, glue ear, after having a virus simular to polio which paralysed my left arm, type 1 diabetes at 11 years old, multiple opperations and multiple chest and ear infections I was rereffured (I had been there for my arm) to Great Ormond Street at 13 years old they ran multiple tests and found that I have acid reflux and Low MBL I have now been given acid reflux medication and am on azithromicin 500mg three days a week for the rest of my life as it is one of the only antibiotics I am not allergic to , my health has improved conciderably and after only being in 60% of my GCSE's I came away with good grades and am now doing Alevels which I have only missed a few days of, I can not express how much I owe to Great Ormond Street and can not thank them enough , I would really love a career there helping people like they have helped me :)      

[1tofmum2]

my boys have MBL , they are aged 11 with a level of 48 , and 6 with a level of 60 . i am told for my 6 yr old 75 is a normal level , but apart from being told it is genetic , and an auto progressive immune dificiency i know little else , i am glad i have found you lovely people to share with .my eldest has many helth issues he is a TOF born unable to swallow , heart murmer , reflus , tracheomalacia , reflex anoxic seizures etc , my little fella has ENT infections regularly and a complex speech and language issue .