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Diagnosed with low MBL (mannose-binding lectin) deficiency
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.
Sorry I wasn't watching the comment section better. How have things been going since Nov? The IDF immune deficiency foundation is international. Their website is www.primaryimmune.org. This is where I found help for my daughter. In the U.S. immune deficiency is recognized under the Am,. with Disabilities Act. I don't know is there is something like that in the U.K.
The IDF can help you with that. They are free, and have all sorts of help available, medical. legal, educational and insurance wise.
I only know that my daughter is on a daily dose of amoxicillion 250mg for the school year. Then off during the summer. This has helped enormously.
There is no cure, for MBL and nothing to do but ha, ha not get sick and then take antibiotics when you do.
At least our immunologist thinks that a small dose of antibiotics 9 months a year is better than huge doses for months fighting various infection, after infection. There is a line between antibiotic resistance and doing nothing. How many infections does it take to cross the line? My kid had over 30 ear infections the first 3 years of life. Was losing some of her hearing, developing auditory processing disorder worth it. I say NO!
We talked to someone else who suffered 150 UTI's before the docs finally decided that she had an immune deficiency!
Some other things the immunologist recommended that have helped are vitamin D3 in large does of 8,000 IU a day. For more info on D3 go to www.vitamindcouncil.org The doc also checked her vaccinations and if they weren't holding he has vaccinated her twice in the last 6 years. All of these helped. We are big hand sanitizers and try to avoid sick people. Clorox wipes at school for her desk, and any other items she has to share has also been very helpful. She wipes down her computer keyboard and books too.
Contact the IDF and let them help you.
Good luck,
elbamom
The IDF can help you with that. They are free, and have all sorts of help available, medical. legal, educational and insurance wise.
I only know that my daughter is on a daily dose of amoxicillion 250mg for the school year. Then off during the summer. This has helped enormously.
There is no cure, for MBL and nothing to do but ha, ha not get sick and then take antibiotics when you do.
At least our immunologist thinks that a small dose of antibiotics 9 months a year is better than huge doses for months fighting various infection, after infection. There is a line between antibiotic resistance and doing nothing. How many infections does it take to cross the line? My kid had over 30 ear infections the first 3 years of life. Was losing some of her hearing, developing auditory processing disorder worth it. I say NO!
We talked to someone else who suffered 150 UTI's before the docs finally decided that she had an immune deficiency!
Some other things the immunologist recommended that have helped are vitamin D3 in large does of 8,000 IU a day. For more info on D3 go to www.vitamindcouncil.org The doc also checked her vaccinations and if they weren't holding he has vaccinated her twice in the last 6 years. All of these helped. We are big hand sanitizers and try to avoid sick people. Clorox wipes at school for her desk, and any other items she has to share has also been very helpful. She wipes down her computer keyboard and books too.
Contact the IDF and let them help you.
Good luck,
elbamom
Thank you for the information. My granddaughter is 3 and was diagnosed last month. We are currently sitting in children's hospital in Birmingham getting treated for pneumonia and metapneumovirus. This is 5th pneumonia since December. We are also scared, frustrated, and looking for options. I am a 20 year veteran ER nurse and my daughter a nursing student. Having my hands tied is very frustrating. Her pulmonologist suggest prophylactic antibiotics but her immunologist cautions about super infections and resistant bacteria with long term antibiotics.
Any vitamins, herbs or other natural products anyone has found to help?
Any vitamins, herbs or other natural products anyone has found to help?
Get a 2nd opinion. Some of these professionals are a bit too cocky for their own or our own good. This is a deficiency syndrome. There are blood products that will help her have a greater chance of fighting infections and long term antibiotics are NOT IT. I am in my 50s and have had pneumonia more than I can remember, when everyone else gets a cold, I get flu and if they get flu, I get pneumonia. I only found out how low my immune system was by looking at my bloods OVER the drs shoulder and pointing it out to him., he was mid way through telling me my bloods were normal - which they are largely except for my Immune response. Now I am finally getting treatment and I have another couple of months to go and hopefully, I can retire my ''season ticket'' to the drs for next winter and get healthy.
My daughter is 4years old and after 4years of pneumonia and non stop various infections, we were told she had MBL. Help! I am going round in circles wtih medical teams. Her care is shared by our local hospital that don't have a clue about what she has and keep sending us home saying "It's a virus" only for us to be back a few days later to have an x-ray and end up on IV drugs fighting pneumonia and a Professor at St Georges.
The Proff at St Georges is very laid back about it all, and leads us to believe "she's not that bad" and "can lead a normal life" but the life she and we as a family are living is far from normal. I have had to leave work after taking so much time off to look after her, she can't seem to go more than 2-3 weeks before she is ill again, and she has hardly been at school even though she has just started. The school are now saying they want her statemented and then that's a whole other battle which I just don't have the energy to fight. My daughter currently takes 5mls of Cefelexin every day and she uses Co amoxiclav to fight an infection. Please tell me there is light at the end of the tunnel because right now I feel I am going mad. We can't go out, we can't have anyone over, I just feel we are trapped in the house. I am battling to try and claim DLA for her but sadly they are not recognising her illness and I am having to take it to an appeal, I don’t hold out much hope especially as I have a Professor who thinks it’s no big deal.
The Proff at St Georges is very laid back about it all, and leads us to believe "she's not that bad" and "can lead a normal life" but the life she and we as a family are living is far from normal. I have had to leave work after taking so much time off to look after her, she can't seem to go more than 2-3 weeks before she is ill again, and she has hardly been at school even though she has just started. The school are now saying they want her statemented and then that's a whole other battle which I just don't have the energy to fight. My daughter currently takes 5mls of Cefelexin every day and she uses Co amoxiclav to fight an infection. Please tell me there is light at the end of the tunnel because right now I feel I am going mad. We can't go out, we can't have anyone over, I just feel we are trapped in the house. I am battling to try and claim DLA for her but sadly they are not recognising her illness and I am having to take it to an appeal, I don’t hold out much hope especially as I have a Professor who thinks it’s no big deal.
My daughter was also diagnosed with low MBL at age 16. By that time she had hearing loss and auditory processing disorder due to the low MBL causing continuous infections month after month year after year. The doc who finally diagnosed her told us to check out the Immune Deficiency Foundation. Their web-site is primaryimmune.org This has been a fantastic resource! It is free to join as they consider MBL one of the 150 immune deficiencies they follow.
The IDF has free publications including a school guide that explains the legal rights of people with immune deficiency in public schools and college as well as the work place. Also helpful is the guide called "Our Immune System" It explains in easy language how the immune system works. MBL is part of the complement system in the immune system and it helped us understand where the problem occurs in the immune response.
The IDF has health insurance information, medical resources, and many, many other good resources as well as local conventions for people to meet other people who have immune deficiencies. It is worth checking them out for information you need. I have become a better advocate for her and she has learned how to advocate for herself with this disease.
Unfortunately there is no treatment for low MBL that I know of at this time, and very little research going on. My daughter currently does a daily antibiotic during the school year, she also has severe life-threatening allergies and asthma. Her treatment includes weekly allergy shots and daily allergy medicines. Her doc also has her on vitamin D3 at 8,000 a day. She takes pro-biotics daily, to protect against yeast infections. The immunologist checks the level of her vaccinations to make sure they are holding. If they aren't holding he has re-vaccinated her.
We now know that when she starts with a sinus, or ear infection to go to him and get antibiotics right away! The regular PCP was useless as they would just say to wait and she would get better on her own. With a damaged immune system that didn't work. She would get worse and worse until she had to have massive doses of extremely strong antibiotics for months to recover. It is better to be on a small dose 9 months of the year and go to a different antibiotic when she gets sick. That way the episodes last a much shorter time.
I would suggest keeping detailed medical records of which doc you saw and when. What was done, how effective it was and anything else you can think of. Know your legal rights under the" Am. with Disabilities Act "(ADA) and in public school under the "Individuals with Disabilities Education Act" (IDEA) The more you know the better you or your child can get their needs met.
Blessing on us all,
elbamom
The IDF has free publications including a school guide that explains the legal rights of people with immune deficiency in public schools and college as well as the work place. Also helpful is the guide called "Our Immune System" It explains in easy language how the immune system works. MBL is part of the complement system in the immune system and it helped us understand where the problem occurs in the immune response.
The IDF has health insurance information, medical resources, and many, many other good resources as well as local conventions for people to meet other people who have immune deficiencies. It is worth checking them out for information you need. I have become a better advocate for her and she has learned how to advocate for herself with this disease.
Unfortunately there is no treatment for low MBL that I know of at this time, and very little research going on. My daughter currently does a daily antibiotic during the school year, she also has severe life-threatening allergies and asthma. Her treatment includes weekly allergy shots and daily allergy medicines. Her doc also has her on vitamin D3 at 8,000 a day. She takes pro-biotics daily, to protect against yeast infections. The immunologist checks the level of her vaccinations to make sure they are holding. If they aren't holding he has re-vaccinated her.
We now know that when she starts with a sinus, or ear infection to go to him and get antibiotics right away! The regular PCP was useless as they would just say to wait and she would get better on her own. With a damaged immune system that didn't work. She would get worse and worse until she had to have massive doses of extremely strong antibiotics for months to recover. It is better to be on a small dose 9 months of the year and go to a different antibiotic when she gets sick. That way the episodes last a much shorter time.
I would suggest keeping detailed medical records of which doc you saw and when. What was done, how effective it was and anything else you can think of. Know your legal rights under the" Am. with Disabilities Act "(ADA) and in public school under the "Individuals with Disabilities Education Act" (IDEA) The more you know the better you or your child can get their needs met.
Blessing on us all,
elbamom
I have a two year old with Downs syndrome who has had many many infections since birth. She had Hirsphrungs, ASD , laryngomalasia, asthma,GERD, and multiple ear, sinus and lung infections. She had pneumonia twice and has neen hospitalized 12 times with 9 surgeries. She had 21 courses of antibiotics over a 12 month period. I took her to a wonderful immunologist who worked her up for a variety of immune deficiencies. Her MBL level is 4. Immunoglobulins were normal. We have just started to rotate prophalytic antibiotics (amoxil and bactrim) when she is not on a stonger course of antibiotics for an active infection. It hasn't been long enough to see if low dose antibiotics between infections will help or not. The literature can be confusing, but I am glad to have a label for her problem and will continue to research how best to help kids like ours. I have found that a close relationship with an immunologist has been so helpful. For those parents going through this know that you are your childs best advocate.
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