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.

[TeeDee1966]

I'm 48 and I have MBL of zero.  I've had nasal/sinus infections all of my life.  I also have asthma and celiac disease. About every 4 years I get pneumonia regardless of having the pneumonia shot.  I also had flu shot every year, but guess what?  I got the flu this year and last year and the year before, and on, and on.  I'm just sick and tired of being sick and tired. I take vitamins such as C, D-2, D-3, garlic, and I frequently wash my hands, I stay away from sick people or people who cough, I even sometimes wear a N95 mask on public transportation, but I still get infections and I still get sick.  Recently, I had a positive ANA test but I was previously told that I don't have lupus or rheumatoid about 5 years ago, but I have to get tested for these again due to the positive ANA (which was pretty darn high).  I'm going to talk to my doctor about immunoglobulin replacement therapy.  Maybe it will help my immune system.

[mpk2337]

I would love to talk to you more. Im 41 y/o. Mbl of 0.5. I keep getting sick. I have been to many specialists. Nobody has been able to help me. Please contact me at ***@****. Thank you.

[emmonsd]

My 3 year old son was diagnosed with MDL yesterday.  I was about to start part time daycare but now I don't know.  What did you end up doing? How are things going?

[elbamom]

So sorry to hear about your baby. I know, we went through this too. My kiddo wasn't diagnosed until age 16. You might want to read my previous posts from 2012 and 2103 under elbamom.

Contact the IDF (immune deficiency foundation) by phone or at www.primaryimmune.org  They consider MBL deficiency as one of the 200 immune deficiencies they cover.  They offer free support, information, and even can connect you with a doc in your area who is knowledgeable about immune deficiencies.

There is no cure at this time. The treatment is a daily antibiotic. If an infection occurs the doc needs to quickly and aggressively treat it. This is not a wait and see what happens time. The doc stops the daily antibiotic and uses a stronger dose antibiotic for a short time until the infection clears then back to the daily. My kiddo uses a pro-biotic daily to help the gut bacteria stay healthy.

Be prepared to use a lot of hand sanitizer/hand washing and stay away from sick people. She needs all her vaccines as they can help prevent problems in the future. AVOID any "Live" vaccines as they will give your daughter the illness you are trying to prevent. For example, a flu shot is better than the flu nasal spray as the spray is live. Have all family members get their shots too.

If you have a doc who is knowable MBL deficiency can be managed. As school approaches you will need the school guide from the IDF and to know the legal rights your child is entitled to under the ADA.

I will say that since my kid was put on daily antibiotics she was able to graduate High School and go to a community college and even has a part time job. I spent many sleepless nights thinking this would never happen.

This forum is very supportive and helpful, but the IDF may have support groups in your area you could attend as a family.

Hang in there, this will work out and since you got her diagnosis early it will be very helpful in having her live a "normal" life.

Elbamom

[TheLightSeeker]

Hi Greka,

Sorry that your baby is going thu all this.

Mannose-binding lectin deficiency, would make sense, as it would be consistent with her recurring infections, however, please beware of the negative effects of antibiotics, so it is important that you consider a pediatric
probiotic for her, if you have not done so yet.

If it is indeed the above suspicion, genetic testing might be justified.

Usually  Mannose-binding lectin deficiency is associated with an MBL-2 gene mutation, but it is believed  other genetic and environmental factors, are involved in the development of this deficiency and increased susceptibility to infections.
Antibiotics would be considered a co-factor.
There are treatment options, but first, find out exactly what he meant.

Please let us know.

Hope this helps.

Best wishes to you and your baby.
Niko

[Greka]

I have an 8 months old baby girl and at 6 months of age she got her first cold..after this she has gotten 3 ear infections another cold and a sinus infection It seems she has been sick continously since she was 6 months old and now she is 8 months old.  She is on her 3rd round of antibiotics. She was prescribed 3 different ones...stronger ones every time so we decided to go for testing to see what was wrong.  Just got a call from her pediatrician and he said everything looks within normal range except the "Mannos" that appears mildly low.  I have an appointment to discuss this further but couldnt help to google it and I am terrified of my baby girl having something bad. Any of you have had an experience with babies and these types of results?

[jetsonj]

Can you tell me where to find the study that you mention about the thyroid therapy?  I have just been diagnosed with MBD, and I'm getting pneumonia every month, and am now allergic to many antibiotics, so I will be hospitalized if I get sick again. My immunologist has been searching for a reason, and my results just came back today. I was on synthroid when I was younger, for repeated infections, but I've tested ok for thyroid so I haven't taken it for years.  I'd like to pursue any possible method of treatment.