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.

[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.

[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...

[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!!

[Butterflies12]

I have a nine year old son that was diagnosed when he was six. He had pnuemonias from birth and it took them until he was six to find out the reason why. I found out that I have it. As long as we keep our son homebound and out of school he does well. When exposed to many kids he starts to get sick again. My sons level is .05. I would like to start blogging and tell you all everything that me and my son have been through from allergies to breathing problems.Do your children have Ehler-Danlos? Stay with constant handwashing and keep pets away from your kids because they carry psuedomonias which is something that was very hard for my son to fight. I clean my house every two days with lysol wipes and as I said before my son does not go to school. We do not expose ourselves to lots of people constantly. The more exposure to people the more infections you'll get. I have seen that a bendadryl every other day has really helped my son. I try not to give him any antibiotics unless he is really sick. Good Luck and take care. We will fight for a cure. We need to form a group to help our kids. Please feel free to email me at ***@****.

[Jasminena]

Hi all,

I have two children and my eldest nearly eight has both MBL and IGG3-SID She was diagnosed when she was two. We have been fighting a constant battle with her health. Especially from March to September (Australia) over our cold months. She has been on long term antibiotics over winter. She not only suffers from infections although not as many as she use to, but also some reactions to the antibiotics as well.

She was starting to improve but two years ago she got really bad again. The immunologist keeps saying he doesn't want to put her on Immunoglobulin Replacement Therapy, but one issue contradicts the other.  If anyone has any info to help me that would be great.

Does anyone have any information on the best treatments for both of these. Issues It has always been hard finding information that relates to her situation.

Thanks all I enjoyed reading your stories.

Hope all your kids are doing well.

[feelinggreat58]

Hi,  I am a 52 yr old woman that after a lifetime of severe infections, chronic constipation, low blood pressure, low body temperature, etc was diagnosed with an MBL deficiency.

4 yrs ago, my allergist (severe dust mites only) tested me for MBL and found I was deficient (.57).  Prior to this discovery I was diagnosed with Autoimmune Thyroid.  One study suggested thyroid medication to correct MBL deficiency but I had been on thyroid medicine for 2 yrs and I was still deficient.  

I am working hard on hoping to find the best treatment for us.  Vitamin D levels at 54 (using liquid D3) have made me feel substantially better.  Good Luck everyone!