The kids are REALLY immunodeficient!

[momto2pandas]

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[peglem]

Not an expert, just a very frustrated amature. Wondering if they checked IgA and IgE levels. From what I have been reading (and there is very little info out there that I can find) IgE, IgA deficiencies are correlated to high risk for autoimmune disorders. Also IgG subclasses 2 & 4.

[momto2pandas]

Not an expert, just a very frustrated amature. Wondering if they checked IgA and IgE levels. From what I have been reading (and there is very little info out there that I can find) IgE, IgA deficiencies are correlated to high risk for autoimmune disorders. Also IgG subclasses 2 & 4.

 

All of those were normal. Apparently usually kids are deficient in IgG 2 & 4, but mine are deficient in 3.

[smartyjones]

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

 

 

not at all trying to derail the thread or get into vaccine arguments - just trying to understand. . .

this presupposes that the prevnar vaccine was accurate and effective at the time given, yes? so, it puts the onus on the body to have not reacted properly to the vaccine, correct?

[kim]

Prevnar was only designed to protect against 7 strains and there is very little data to give a reasonable amt. of time that you could expect to see "protective levels."

 

I think this thread might be very helpful

 

http://www.latitudes.org/forums/index.php?...c=6469&st=0

[nevergiveup]

Did you let them vaccinate with Prevnar or was this from original vaccine from pediatrician? I would not let them vaccinate again if they suggest it. My knowledge is limited to the fact that my dd has cvid and sad and also has super high lymphocytes and cd56 killer cells. (Recently found this out from specials studies done at university) Have you had your kids ANA tested and how were their neutophils? Also with a low igg3 subclass, you say super low this is an indicator of b cell problems. Many immune deficiencies cause autoimmune issues. So your kids pandas symptoms fit right into that category. Have your kids had the Cunningham test done? Did they have highly elevated auto antibodies? Please pm me and I will give you a docs name whom studies b cells, autoantibodies and immune defs, and also studied sydehams in the years past.

 

 

 

(According to my father, whom is an immune doc).

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[momto2pandas]

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

 

 

not at all trying to derail the thread or get into vaccine arguments - just trying to understand. . .

this presupposes that the prevnar vaccine was accurate and effective at the time given, yes? so, it puts the onus on the body to have not reacted properly to the vaccine, correct?

correct.

[momto2pandas]

They were both vaccinated by their pediatrician before they were diagnosed with PANDAS. I know that sometimes people are re-vaccinated to "jump start" the immune system, but I don't think the immuno will suggest this. He did it to me since my levels also "failed" after one round of vaccination, but my psychiatric reaction to the vaccine was so bad that it had to be stopped with steroids. After that, he said that my kids should never be vaccinated again.

 

I don't know the rest of the results yet - she didn't read me everything. I'll probably call back to get the rest.

 

We haven't had the Cunningham test. There has never been any question about the validity of the PANDAS diagnosis and we pay cash for all of the other tests to begin with (many thousands as you can guess), so so far we've spared ourselves the expense of the Cunningham test. I would be curious, though.

 

I'll PM you. Thank you.

 

Does your dd do monthly IVIG?

 

 

Did you let them vaccinate with Prevnar or was this from original vaccine from pediatrician? I would not let them vaccinate again if they suggest it. My knowledge is limited to the fact that my dd has cvid and sad and also has super high lymphocytes and cd56 killer cells. (Recently found this out from specials studies done at university) Have you had your kids ANA tested and how were their neutophils? Also with a low igg3 subclass, you say super low this is an indicator of b cell problems. Many immune deficiencies cause autoimmune issues. So your kids pandas symptoms fit right into that category. Have your kids had the Cunningham test done? Did they have highly elevated auto antibodies? Please pm me and I will give you a docs name whom studies b cells, autoantibodies and immune defs, and also studied sydehams in the years past.

 

 

 

(According to my father, whom is an immune doc).

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[sf_mom]

Your results are almost identical to our twins including high Lympocytes. Their CaM Kinase is 148 and 157. We also ran T and B cells for auto-immune at Stanford Children's for my daughter and they were normal. Tests are very expensive. My twin boy's immune system has been tested twice and my daughter's only once. Our plan is keep retesting them throughout the year to confirm it is NOT viral. Right now they are on antibiotics, not allowed in any social settings, taking high dose probiotics, bentonite clay, high B 12s and fish oils to see if we can't reverse this for them over the next year prior to taking any more aggressive measures.

 

My older son's results who has been treated aggressively for PANDAS were also similar... as well as my friends son.

 

-Wendy

 

 

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[momto2pandas]

So your son got IVIG for PANDAS but the others with the same test results did not get IVIG because they don't have PANDAS (or is it just because they are younger)? Am I understanding that correctly? Did you get insurance coverage for IVIG for your older son based on his immune results?

 

I can't imagine keeping my kids out of social settings at this point - they are very social and that's all they ever want to do! That must be hard, though at least in your case there are a bunch of siblings.

 

It is interesting that the whole cluster has the same results. Don't know if you were aware, but we were also living in the Bay Area in 2006 and part of 2007, and it was there that we first started to have problems with Strep.

 

 

Your results are almost identical to our twins including high Lympocytes. Their CaM Kinase is 148 and 157. We also ran T and B cells for auto-immune at Stanford Children's for my daughter and they were normal. Tests are very expensive. My twin boy's immune system has been tested twice and my daughter's only once. Our plan is keep retesting them throughout the year to confirm it is NOT viral. Right now they are on antibiotics, not allowed in any social settings, taking high dose probiotics, bentonite clay, high B 12s and fish oils to see if we can't reverse this for them over the next year prior to taking any more aggressive measures.

 

My older son's results who has been treated aggressively for PANDAS were also similar... as well as my friends son.

 

-Wendy

 

 

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[sf_mom]

Geez.... you know I live close to Buster, EAMom, Diana Polhman (our kids are in the same school district), Mom2Alex, etc. Diana's child was also exposed to child from the east bay who had RF four months prior to sudden on-set. Her son had a bunch of ear infections during the four months in between exposure and sudden on-set.

 

My twins are 2 1/2, they have each other so being at home is not a big deal. They will never remember this time. My older son's immune results were slightly different, his IgGs were low normal but every thing else was similar. BUT, our insurance did pay for part of the IVIG treatment after deductable and co-pay.

 

We've had a lot of exposure to strep this month and when my son comes home with an increase in symptoms we also see a response in our younger son. Again, if the numbers don't change much for him in the next year we will probably treatment him prior to starting any type of school.

 

Our older son, is doing well..... I expect there to be more blips throughout the year because of the exposures and the fact we are keeping him in school. BUT, my confidence is growing tremendously for him. He is a different kid as I discussed in an earlier post.

 

-Wendy

[momto2pandas]

You guys are in the East Bay? I thought you were in the Peninsula. We lived part of the time in SF proper and part in Lafayette. We were diagnosed with Strep in Lafayette - it was a bad one that the antibiotics didn't seem to get easily. In response to that strain my ds actually had strep lesions all over his face, etc. That's when we started to think that my ds6 was allergic to something in the medicines (dyes in tylenol or whatnot) - his behavior went wacky every time he relapsed. Eventually, ped figured out PANDAS. And I have been sick (sore throat, chills, etc.) every 4-6 weeks since!

 

Oddly, my ds6's best friends (you know, the types who are always here or my kids over there for the last couple of years) are both now having chronic/repeated infections and showing signs of PANDAS. I hope they didn't catch it from us.

 

 

Geez.... you know I live close to Buster, EAMom, Diana Polhman (our kids are in the same school district), Mom2Alex, etc. Diana's child was also exposed to child from the east bay who had RF four months prior to sudden on-set. Her son had a bunch of ear infections during the four months in between exposure and sudden on-set.

 

My twins are 2 1/2, they have each other so being at home is not a big deal. They will never remember this time. My older son's immune results were slightly different, his IgGs were low normal but every thing else was similar. BUT, our insurance did pay for part of the IVIG treatment after deductable and co-pay.

 

We've had a lot of exposure to strep this month and when my son comes home with an increase in symptoms we also see a response in our younger son. Again, it the numbers don't change much for him in the next year we will probably treatment him prior to starting any type of school.

 

Our older son, is doing well..... I expect there to be more blips throughout the year because of the exposures and the fact we are keeping him in school. BUT, my confidence is growing tremendously for him. He is a different kid as I discussed in an earlier post.

 

-Wendy

 

So your son got IVIG for PANDAS but the others with the same test results did not get IVIG because they don't have PANDAS (or is it just because they are younger)? Am I understanding that correctly? Did you get insurance coverage for IVIG for your older son based on his immune results?

 

I can't imagine keeping my kids out of social settings at this point - they are very social and that's all they ever want to do! That must be hard, though at least in your case there are a bunch of siblings.

 

It is interesting that the whole cluster has the same results. Don't know if you were aware, but we were also living in the Bay Area in 2006 and part of 2007, and it was there that we first started to have problems with Strep.

 

 

Your results are almost identical to our twins including high Lympocytes. Their CaM Kinase is 148 and 157. We also ran T and B cells for auto-immune at Stanford Children's for my daughter and they were normal. Tests are very expensive. My twin boy's immune system has been tested twice and my daughter's only once. Our plan is keep retesting them throughout the year to confirm it is NOT viral. Right now they are on antibiotics, not allowed in any social settings, taking high dose probiotics, bentonite clay, high B 12s and fish oils to see if we can't reverse this for them over the next year prior to taking any more aggressive measures.

 

My older son's results who has been treated aggressively for PANDAS were also similar... as well as my friends son.

 

-Wendy

 

 

Hoping some of you with more experience in the immune deficiency arena can help me here.

 

Our immunologist's nurse just gave me a preview of my kids' test results on the phone, but we won't know what comes next until we meet with him next Friday...I'm too impatient to wait that long so I'm hoping some of you can give me a preview.

 

As some of you may recall, my kids are only mildly affected with PANDAS compared to most. However, they've been having a ton of trouble with chronic sinus infections and rampant dental caries (I mean like every single tooth), hence the immune tests. We are now on antibiotic round 7 (for ds3) and 8 (for ds6) since the fall and I'm guessing that the immuno will keep them on chronically at this point.

 

So, they both have exactly the same pattern:

 

Abnormally low (totally out of the normal range) IgG subclass 3 (not sure about total IgG)

Abnormally low response to the Prevnar vaccine - only had response to 3 out of the 14 (or is it 16?) strains vaccinated; normal is apparently response to at least 10.

Lymphocytes apparently crazy out of range

M. pneumoniae normal

She didn't read me the Strep tests of any of the others...I may need to call back on that.

 

I'm no expert in primary immune deficiencies but as far as I can tell, both meet criteria for IgG subclass deficiency and specific antibody deficiency. What does this mean for future treatment? Are we in for IVIG+chronic antibiotics for immunological reasons, even though the PANDAS symptoms alone might not justify it? From the little I can get from the internet it seems like we may well be.

[sf_mom]

We were in SF proper in between the Moma and Embarcadero our son attended Hills Plaza Marine Day Preschool and now in Atherton... near Palo Alto. Diana was in Fremont prior to moving to Menlo Park and that is where her child played with a kid who was diagnosed with RF prior to sudden on-set. Mouth lesions can be Kawasaki's.... does he have elevated titers? Kawasaki's is often missed and shares 93 symtpoms with RF.

 

Cracked lips

Erythematous lips/fissuring

Oral lesion/ulcer

Oral Mucosa Erythema

Strawberry tongue

Tonsil exudate

Ulcerative stomatitis

 

http://en.diagnosispro.com/disease_compari...5643-19125.html

 

IVIG 2 m.g./kilogram is the known treatment for Kawasaki's until symptoms resolve.

[momto2pandas]

Both kids have ongoing problems with cracked/fissured lips and have had occasional mouth ulcers, in addition to the skin lesions around the mouth (looked like pimples). I have not noticed any of the other things. One of them has very red checks and lips, the other doesn't. I wondered about Kawasaki's in the past but they didn't seem to have quite enough symptoms. No strawberry tongue. Now that we have the immuno results, though, I will ask the doc about it.

 

Titers were taken but she didn't read those to me - still have to hear back on that.

 

We were in SF proper in between the Moma and Embarcadero our son attended Hills Plaza Marine Day Preschool and now in Atherton... near Palo Alto. Diana was in Fremont prior to moving to Menlo Park and that is where her child played with a kid who was diagnosed with RF prior to sudden on-set. Mouth lesions can be Kawasaki's.... does he have elevated titers? Kawasaki's is often missed and shares 93 symtpoms with RF.

 

Cracked lips

Erythematous lips/fissuring

Oral lesion/ulcer

Oral Mucosa Erythema

Strawberry tongue

Tonsil exudate

Ulcerative stomatitis

 

http://en.diagnosispro.com/disease_compari...5643-19125.html

 

IVIG 2 m.g./kilogram is the known treatment for Kawasaki's until symptoms resolve.

[nevergiveup]

MamatoPandas and SFMom,

 

 

My dd recently had high lymphocytes and she is on high dose azith with no infections that I know of receiving monthly lower dose ivig? What do your docs think of the lymphocytes, does this mean there is an underlying infection? Or can it be tied to autoimmune? SFMom how often have your children had high lymphocytes? I thought this number was suppose to increase and decrease with infection? Any info would be great. Also my dd had low CD3 and high CD52 killer cells any ideas what that is all about and does it tie in with infection. If my dd has been on high dose azith for months, how could she have high lymphocytes? I am thinking that this means the azith is the wrong abx, or could this be viral that causes the higher lymphocytes. I recently just got back my dd's tests results and the doc wants to go over them with me personally. So I have no answers right now.