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.

[sabbott84]

Wow, it's great to find a group of people who understand what I live...My son is 10 years old and just recently diagnosed with MBL deficiency.  He suffered a ruptured appendix at the age of 10 months resulting in a brain bleed and ruptured bowel that caused him to nearly die and suffer additional brain injury. He has significant developmental delay and hearing loss.  During his first few years of life he was hospitalized for numerous infections and has had to have sinus surgery twice due to severe sinus infections.  He is on a daily dose of anitbiotics, which seems to help, but still seems to get sinus infections often.  He can go from just a little bit sick to very sick in a matter of hours.  Like many of you, I have had difficulty finding much information on the internet that I can understand, as most of it is from medical journals.  I look forward to connecting with this group in the future and I hope that a cure or treatment is found soon.

[hazelann70]

I have been diagnosed with no MBL in my system and that was only found when I had constant abscesses in my groin and arm pit.  I have since been diagnosed with hidradenitis suppurativa.  I would like to say that I am 42 years old and feel I have been very healthy most of the time other than suffering from obesity which is now under control following a gastric bypass.  However, my daughter has for the last 5 or so years (she's now 16) suffered from anything that may be going around.  She has severe allergies to virtually anything and constantly suffers with stomach cramps. She had to have 2 blood transfussions a couple of years back as her count was below 4 and they have never found out why.  We are now waiting for an appointment with the immunologist who I see as he wants to take her on.  He has already done her bloods and sure enough, she has inherrited the MBL deficiency.  I haven't read anything other than on here about MBL being related to allergies and would love some links to read if anyone can supply them to me.  

Has anyone suffered from veruccas? I had them for about 6 years as a teenage (same as my daughter) and after god knows how many years, I've got another one (had this one for nearly 3 years now).  The consultant has told me this is related to the lack of MBL.  Yet another thing I've not seen in any research.

I have read that MBL deficiency can be the cause of miscarriages.  That's an interesting one as I have had 3 in total.  I have 3 kids and one has special needs and so I now wonder if the MBL has anything to do with his problems! Hey ho, we plod on!

[KenzeesMom11]

My one year old daughter has been plagued with respiratory issues since she was just 2 weeks old and has to be hospitalized over a dozen times in her first year. We were shuffled from a pulmonologist, to an allergy doctor and finally to immunology before we got a diagnosis.  She has had tubes in her ears and her adnoids out at well trying to find something that will help.  She has been diagnosed with MBL deficiency and Transient Hypogammaglobulinemia of Infancy.  She is currently on a daily antibiotic as well as monthly IVIG infusions.  But thankfully we are starting to see a decrease in infections.

[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 .

[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 :)      

[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.