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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.
I have to say that after reading all of these posts I am so grateful that our infectious disease dr had the right blood work done the first time. My son is 15 and his level is a 5. We are still waiting to have more blood work done in six weeks as he is testing him for another deficiency that he may have as well. The interesting thing, after reading all of these posts, is that I think I need to have my younger son tested as well.
He is 12 now, but since birth he had so many ear infections that by 10 months he had tubes put in and has had five total. He had gone almost three years without one until two months ago and his eardrum ruptured again. He also has acid re flux that gets worse with his anxiety.
My older son gets sick every 2 1/2-3 months with fevers of 105 and then is diagnosed with a sinus or ear infection (just about every time). I am leery about putting him on antibiotics for so long, so we are going to try the vitamins first and see how that goes.
I am also going to check out the websites that you have mentioned as well. Thanks so much for the info and good luck to everyone!
He is 12 now, but since birth he had so many ear infections that by 10 months he had tubes put in and has had five total. He had gone almost three years without one until two months ago and his eardrum ruptured again. He also has acid re flux that gets worse with his anxiety.
My older son gets sick every 2 1/2-3 months with fevers of 105 and then is diagnosed with a sinus or ear infection (just about every time). I am leery about putting him on antibiotics for so long, so we are going to try the vitamins first and see how that goes.
I am also going to check out the websites that you have mentioned as well. Thanks so much for the info and good luck to everyone!
Dear Stephanie:
I live in Denver and we are lucky to have an allergy,asthma,immunologist. He is very aware of immune deficiencies and the Immune Deficiency Foundation. Between him and the IDF is where I got the info and help to get my daughter as healthy as possible.
She had over 30 ear infections between birth and age 3. Then it was chronic sinus infections. I didn't even count these as it was every virus that causes them. She wasn't diagnosed until 16, and was basically sick all the time. She has allergies, asthma, and life-threatening allergies to nuts as well as the MBL.
I would contact the IDF today! Their website has lots of info and they can connect you with an immunologist in your area who knows about immune deficiency, and how to treat it. Their site is www.primaryimmune.org.
If you call and talk to the people there at the IDF, they have been super helpful for our family. They also have local meeting and yearly meeting that your family can attend. This was so helpful to us. MBL is a compliment deficiency and there isn't a "cure" but there are things to do that help. Your son can meet other kids who have the same thing and you can meet other families dealing with immune deficiency.
Our immunologist has my kiddo on Singular, Zyrtec, Flonase, and Flovent I think all these are generic too) daily! She also does a sinus rinse with a Neil Med bottle 2 times a day. These have helped prevent a lot of sinus infections, not all. She also does a small dose of Amoxicillian daily during the school year so from August to June. Then she takes a break off of that, restarting in the fall. She also does allergy shots year round.
If she get a sinus infection while on the Amox, the doc switches her to something else until the sinus infection is over then back on the Amox. His reasoning was that it was better to be on a small daily dose then huge Mega-does for 6-8month every year, like she had been since birth. He also wants to see her asap when she gets sick. He doesn't want watchful waiting since it just means she gets worse. After he see her, if it looks like her immune system is handling it, then she stays on the Amox.
BUT he insists on our calling if she takes a turn for the worse immediately! Even after hours! So we are so lucky to have him. He also asks that we call the office after a visit to let him know how she is doing even if she is doing OK. If we didn't have this doc, our life would be hell. He also communicates with other docs about her and her medical problems, and has written letters to her school.
My kid also takes VSL#3 which is a super-probiotic every day. This helps replace the good bacteria in the gut that the antibiotic is killing. Intestinal health is also necessary for over all health. VSL#3 is over the counter at Costco in the pharmacy since it needs to be kept cold. We also got the sinus rinse bottle there too. Other places carry these things, Costco is just cheap.
All of the above help her maintain her health and fight off as much as possible a virus and stop it from becoming a sinus infection. I would try the above before a sinus surgery which will not fix the MBL anyway.
The other thing we found out was that my kiddo was deficient in vitamin D3. The immunologist has her on 10,000 IU of D3 a day. He checks her twice a year to see if she is in the "optimal range" of between 50 and 70 ml. Originally she was at 10ml. She started at 6,000 IU and was still below the optimal level after 6 months. It takes time to build the D3 up in your body. D3 is also cheap and easy to find. Costco has this too as do walmart, walgreens ect. I just try to find things cheap as we use meds daily and the money builds up. More info about D3 at www.vitamindcouncil.org
The medical problems of MBL are horrific and overwhelming. That was bad enough! We also had major issues with public school since she was out sick so much. We got help and info from the school expert at the IDF. This lady knows her stuff. The school must work with him/you as he has a disability under the ADA. When you call the IDF ask to contact her and get her help with school issues.
I hope you find out how to help your son. For me that meant the more info the better! We are going the the IDF convention this summer in Baltimore and maybe we will meet you there. I hope you find out how to help your son. For me that meant the more info the better! If you have more questions, I will try to help.
Good luck,
Elbamom
I live in Denver and we are lucky to have an allergy,asthma,immunologist. He is very aware of immune deficiencies and the Immune Deficiency Foundation. Between him and the IDF is where I got the info and help to get my daughter as healthy as possible.
She had over 30 ear infections between birth and age 3. Then it was chronic sinus infections. I didn't even count these as it was every virus that causes them. She wasn't diagnosed until 16, and was basically sick all the time. She has allergies, asthma, and life-threatening allergies to nuts as well as the MBL.
I would contact the IDF today! Their website has lots of info and they can connect you with an immunologist in your area who knows about immune deficiency, and how to treat it. Their site is www.primaryimmune.org.
If you call and talk to the people there at the IDF, they have been super helpful for our family. They also have local meeting and yearly meeting that your family can attend. This was so helpful to us. MBL is a compliment deficiency and there isn't a "cure" but there are things to do that help. Your son can meet other kids who have the same thing and you can meet other families dealing with immune deficiency.
Our immunologist has my kiddo on Singular, Zyrtec, Flonase, and Flovent I think all these are generic too) daily! She also does a sinus rinse with a Neil Med bottle 2 times a day. These have helped prevent a lot of sinus infections, not all. She also does a small dose of Amoxicillian daily during the school year so from August to June. Then she takes a break off of that, restarting in the fall. She also does allergy shots year round.
If she get a sinus infection while on the Amox, the doc switches her to something else until the sinus infection is over then back on the Amox. His reasoning was that it was better to be on a small daily dose then huge Mega-does for 6-8month every year, like she had been since birth. He also wants to see her asap when she gets sick. He doesn't want watchful waiting since it just means she gets worse. After he see her, if it looks like her immune system is handling it, then she stays on the Amox.
BUT he insists on our calling if she takes a turn for the worse immediately! Even after hours! So we are so lucky to have him. He also asks that we call the office after a visit to let him know how she is doing even if she is doing OK. If we didn't have this doc, our life would be hell. He also communicates with other docs about her and her medical problems, and has written letters to her school.
My kid also takes VSL#3 which is a super-probiotic every day. This helps replace the good bacteria in the gut that the antibiotic is killing. Intestinal health is also necessary for over all health. VSL#3 is over the counter at Costco in the pharmacy since it needs to be kept cold. We also got the sinus rinse bottle there too. Other places carry these things, Costco is just cheap.
All of the above help her maintain her health and fight off as much as possible a virus and stop it from becoming a sinus infection. I would try the above before a sinus surgery which will not fix the MBL anyway.
The other thing we found out was that my kiddo was deficient in vitamin D3. The immunologist has her on 10,000 IU of D3 a day. He checks her twice a year to see if she is in the "optimal range" of between 50 and 70 ml. Originally she was at 10ml. She started at 6,000 IU and was still below the optimal level after 6 months. It takes time to build the D3 up in your body. D3 is also cheap and easy to find. Costco has this too as do walmart, walgreens ect. I just try to find things cheap as we use meds daily and the money builds up. More info about D3 at www.vitamindcouncil.org
The medical problems of MBL are horrific and overwhelming. That was bad enough! We also had major issues with public school since she was out sick so much. We got help and info from the school expert at the IDF. This lady knows her stuff. The school must work with him/you as he has a disability under the ADA. When you call the IDF ask to contact her and get her help with school issues.
I hope you find out how to help your son. For me that meant the more info the better! We are going the the IDF convention this summer in Baltimore and maybe we will meet you there. I hope you find out how to help your son. For me that meant the more info the better! If you have more questions, I will try to help.
Good luck,
Elbamom
Just received a letter in the mail from an immunologist we saw a few weeks back. The letter stated that our son has MBL and there is no cure. What a great way to hear news:( Anyway, your posts have been very helpful since getting the letter last night. Our son is 11 and has been sickly since birth with the heavy hitting infections, hospitalization, and chronic sinus infections. We were told by one Immunologist 4 years ago that he had Common Variable Immune deficiency. However, recently we went to another Immunologist and he said "no, our son did not have an immune issue" he felt it was a sinus/anatomy issue. However, apparently he did not have the MBL test results he sent us for. So question... were does this leave us? MBL appears to be an immune dysfunction. Do I go back to the 1st or 2nd Immunologist? Also, ENT is recommending sphenoid surgery for chronic sinus infections. Is that necessary with this new information? Would surgery help if it is his immune system that is the problem? Would appreciate any insight as at times I feel like I am crazy. I can't tell you how many people pre-judge like I am looking for illness or somehow causing him to get sick. Would love to hear where some of you live and what Dr.s you work with and your approach.Thanks,
Ooslow:
I am glad you read all of the info that is here from the original postings. If your boy is 7 is he in the second grade? I really recommend the IDF at www.primary immune.org Their school guide will help you with dealing with public school. Your son should have an IEP which is an individual education program. This means he has to qualify for special ed, which he does since he has an immune deficiency.
He meets the criteria for the ADA, American with Disabilities Act. According to the ADA a disability is " a physical or mental impairment that substantially limits one or more major life activities of an individual" Major life activity include the operation of a major bodily function, including but not limited to functions of the immune system,....." This is covered through the IDEA individual with disabilities education act. More info in the school guide at the IDF website.
If you call the IDF ask to talk to their school expert, or contact her through email. In my case the school didn't know anything about immune deficiency, didn't want to learn and was upset that my daughter didn't fit into the system the way they wanted. They legally can't refuse to educate your son even though they may not want to. We had to get a lawyer at one point and you may have to also.
The IDF is also a large and caring community and has lots of help available for people to deal with all the mental, physical, educational, social, insurance, etc areas that we need help with. It is free. My daughter had never met another kid with immune deficiency until she was 16 and going to an IDF meeting was the best thing I have done for her, because we both found out we weren't alone in dealing with this.
I hope that you find some ideas that help your son both physically, and at school.
If you have more questions I will try to help just post them here. Other people have good ideas too!
Good luck,
elbamom
I am glad you read all of the info that is here from the original postings. If your boy is 7 is he in the second grade? I really recommend the IDF at www.primary immune.org Their school guide will help you with dealing with public school. Your son should have an IEP which is an individual education program. This means he has to qualify for special ed, which he does since he has an immune deficiency.
He meets the criteria for the ADA, American with Disabilities Act. According to the ADA a disability is " a physical or mental impairment that substantially limits one or more major life activities of an individual" Major life activity include the operation of a major bodily function, including but not limited to functions of the immune system,....." This is covered through the IDEA individual with disabilities education act. More info in the school guide at the IDF website.
If you call the IDF ask to talk to their school expert, or contact her through email. In my case the school didn't know anything about immune deficiency, didn't want to learn and was upset that my daughter didn't fit into the system the way they wanted. They legally can't refuse to educate your son even though they may not want to. We had to get a lawyer at one point and you may have to also.
The IDF is also a large and caring community and has lots of help available for people to deal with all the mental, physical, educational, social, insurance, etc areas that we need help with. It is free. My daughter had never met another kid with immune deficiency until she was 16 and going to an IDF meeting was the best thing I have done for her, because we both found out we weren't alone in dealing with this.
I hope that you find some ideas that help your son both physically, and at school.
If you have more questions I will try to help just post them here. Other people have good ideas too!
Good luck,
elbamom
My son has MBL and is 7now. Since birth he has been very sick and constant infections. He misses so much school due to being so sick. I am so excited to find others and being able to read about what you all are going through and doing. I have had no luck with finding any information about MBL or others who are trying to deal with it.
I am glad that my Aug 2012 post helped. Have you contacted the IDF?
I replied to Italy 10 today with some ideas about daily antibiotics, vitamin D3 and re vaccinating that have helped my kiddo. Since you are in the states, I would either call and ask the IDF to send you the publications about school, living with immune deficiency etc or read them on line then ask for the ones you want. Their web site is www.primaryimmune.org
There is a big convention in Baltimore this summer and there are grants available too. The IDF can also tell you about immunologists in your area who are aware of the immune deficiency and how to treat it. But with MBL there really isn't much to do. It is a compliment deficiency. There may be local meeting you could attend. The IDF even offers professional courses and info about the 150 different kinds of immune deficiency.
For my child there hasn't been one answer, but many different pieces that have helped. Daily small doses of antibiotics helped a lot, D3 helped, we have taken that daily for the last 4 years and do a blood test 2 times yearly to adjust up or down. The doc wants her between 50 and 70 ml. For a 16 year old she takes 8,000 IU daily.
Go to www.vitamindcouncil.org it has lots of info on D3. I am not sure of the dose for a 3 year old but I know 1,000 IU is safe since they give that to babies in Germany. Check the site for a dosage. As long as she doesn't go over 100 ml in her blood work she should be fine.
Our doc. also did a vitamin panel and she was low in B12. Once he got that up he had her stop that vitamin. He also checks her vaccinations every so often and has re-vaccinated her twice in the last 6 years. She takes allergy shots and allergy medicine daily with a multi-vitamin and the D3.
Public school was a big problem. Again the IDF has info on school and immune disabilities too. Your granddaughter is covered under the ADA and with school under the IDEA(Individuals with disabilities education act) having an immune system that doesn't work means she is disabled and she has rights under the law and at school.
The school must meet her needs, the nurse and staff need to be aware of her medical condition. Since she is 3 you have a couple of years to get ready. She will need an IEP. (individual education plan) I would suggest talking to the IDF school specialist so you know your rights, then getting to know the disability service person in your local school district. Is she in daycare? If so, they need to know what to do to help her avoid getting sick. They also have obligations they have to follow under the law.
I will watch the MBL section better and reply if you have more questions.
It was 16 years before my daughter was diagnosed so I know the sorrow and pain you are going through. Since you found out now, it will help her so much in the future. It will avoid even more medical problems.
I am hoping you contact the IDF soon and you find help there.
Blessing from Denver
elbamom
I replied to Italy 10 today with some ideas about daily antibiotics, vitamin D3 and re vaccinating that have helped my kiddo. Since you are in the states, I would either call and ask the IDF to send you the publications about school, living with immune deficiency etc or read them on line then ask for the ones you want. Their web site is www.primaryimmune.org
There is a big convention in Baltimore this summer and there are grants available too. The IDF can also tell you about immunologists in your area who are aware of the immune deficiency and how to treat it. But with MBL there really isn't much to do. It is a compliment deficiency. There may be local meeting you could attend. The IDF even offers professional courses and info about the 150 different kinds of immune deficiency.
For my child there hasn't been one answer, but many different pieces that have helped. Daily small doses of antibiotics helped a lot, D3 helped, we have taken that daily for the last 4 years and do a blood test 2 times yearly to adjust up or down. The doc wants her between 50 and 70 ml. For a 16 year old she takes 8,000 IU daily.
Go to www.vitamindcouncil.org it has lots of info on D3. I am not sure of the dose for a 3 year old but I know 1,000 IU is safe since they give that to babies in Germany. Check the site for a dosage. As long as she doesn't go over 100 ml in her blood work she should be fine.
Our doc. also did a vitamin panel and she was low in B12. Once he got that up he had her stop that vitamin. He also checks her vaccinations every so often and has re-vaccinated her twice in the last 6 years. She takes allergy shots and allergy medicine daily with a multi-vitamin and the D3.
Public school was a big problem. Again the IDF has info on school and immune disabilities too. Your granddaughter is covered under the ADA and with school under the IDEA(Individuals with disabilities education act) having an immune system that doesn't work means she is disabled and she has rights under the law and at school.
The school must meet her needs, the nurse and staff need to be aware of her medical condition. Since she is 3 you have a couple of years to get ready. She will need an IEP. (individual education plan) I would suggest talking to the IDF school specialist so you know your rights, then getting to know the disability service person in your local school district. Is she in daycare? If so, they need to know what to do to help her avoid getting sick. They also have obligations they have to follow under the law.
I will watch the MBL section better and reply if you have more questions.
It was 16 years before my daughter was diagnosed so I know the sorrow and pain you are going through. Since you found out now, it will help her so much in the future. It will avoid even more medical problems.
I am hoping you contact the IDF soon and you find help there.
Blessing from Denver
elbamom
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