Our whole family has/had step when Lauren manifested inti

[laurenjohnsonsmom]

That makes three! Just got off the phone with Dr. Bouboulis discussing our famlies lab results. My 10 yr. Old, DD2,  

my husband and I all have elevated/positive strep titers which coincide  

fallen with the timeframe associated when both girls were sick back in  

the end of October...crazy!!!

[matis_mom]

That makes three! Just got off the phone with Dr. Bouboulis discussing our famlies lab results. My 10 yr. Old, DD2,  

my husband and I all have elevated/positive strep titers which coincide  

fallen with the timeframe associated when both girls were sick back in  

the end of October...crazy!!!

Many of the families in this forum have gone through this... you'll have to have everyone treated simultaneously and do a thorough house cleaning to get rid of it. Don't forget to change toothbrushes and toothpaste too! (each person get's their own tube of paste and cup)

[laurenjohnsonsmom]

I did the "housecleaning" thing weeks ago, including toothpaste/toothbrush as we suspected someone else (DD2) would have it. Guess I was surprised we all were positive, non being symptomatic. Dr.T theory is that there is a particular strain going around. He has seen over a dozen children that have a sneezing tic like our daughter, in the last few months. Some manifested a few months before, some about the same time, others after. From what the top PANDAS doc's have told me (trust me, I have spike to them all), they have never seen the sneezing tic in a PANDAS case until they saw Lauren. Now, because of her media exposure they're "coming out of the woodwork"!!

 

Thanks for your great advice!!

[matis_mom]

I did the "housecleaning" thing weeks ago, including toothpaste/toothbrush as we suspected someone else (DD2) would have it. Guess I was surprised we all were positive, non being symptomatic. Dr.T theory is that there is a particular strain going around. He has seen over a dozen children that have a sneezing tic like our daughter, in the last few months. Some manifested a few months before, some about the same time, others after. From what the top PANDAS doc's have told me (trust me, I have spike to them all), they have never seen the sneezing tic in a PANDAS case until they saw Lauren. Now, because of her media exposure they're "coming out of the woodwork"!!

 

Thanks for your great advice!!

I hope you get it under control soon! Keep us posted on how it goes, i'd l ike to hear which antibiotic does the trick for something like this...

[thereishope]

I found out all 3 of my kids are asymptomatic. It makes things more stressful.

[sf_mom]

I know no one likes to hear this........... but based on our personal situation ITS THE STRAIN. All three of our children look like the are suffering from similar due to their age (under developed immune system) at time of exposure to a child who had RF. We will be drawing blood for the CaM Kinase test for our DD 2 1/2 on Monday.

 

Basically 5 children at playdate, 3 are confirmed PANDAS with the other two looking like they are PANDAS but waiting until all the tests completed to confirm diagnoses.

 

Our son 5 1/2, CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst), low normal IgGs, deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers

 

Our son 2 1/2, CaM Kinase 148, Low IgG 525, deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, Low RBC, Low WBC, Lympocytes 65 - range 35 to 65

 

Our daughter 2 1/2, Low IgG 412, deficiencies in 9 of 14 Strep Pneumococcal Antibody Titers, Low WBC, High Lympoctes 70 -range 35 to 65

 

Our son's friend 6 1/2, CaM Kinase 148, diagnosed with RF: High ESR, CPR, deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers, Low IgGs, ETC (many more abnormal labs)

 

-Wendy

[bmom]

Our whole family tested positive at one time too. We all had no symptoms, yet tested positive on the rapid. Even my son who was on preventative antibiotics at the time. I could understand if just my children and either me or my husband (blood relatives). But considering that my husband and I are not blood relatives, that leads me to think it is the strain as wel.

[matis_mom]

I know no one likes to hear this........... but based on our personal situation ITS THE STRAIN. All three of our children look like the are suffering from similar due to their age (under developed immune system) at time of exposure to a child who had RF. We will be drawing blood for the CaM Kinase test for our DD 2 1/2 on Monday.

 

Basically 5 children at playdate, 3 are confirmed PANDAS with the other two looking like they are PANDAS but waiting until all the tests completed to confirm diagnoses.

 

Our son 5 1/2, CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst), low normal IgGs, deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers

 

Our son 2 1/2, CaM Kinase 148, Low IgG 525, deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, Low RBC, Low WBC, Lympocytes 65 - range 35 to 65

 

Our daughter 2 1/2, Low IgG 412, deficiencies in 9 of 14 Strep Pneumococcal Antibody Titers, Low WBC, High Lympoctes 70 -range 35 to 65

 

Our son's friend 6 1/2, CaM Kinase 148, diagnosed with RF: High ESR, CPR, deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers, Low IgGs, ETC (many more abnormal labs)

 

-Wendy

Wendy,

Wow, so it's not just an individual's genetic make up but a specific strain that causes this? Dr. Latimer also mentioned she thinks it's a particularly resistant strain. We are seeing an infectious disease specialist soon to try to figure it out, but I would like to know more about your experience... Has the particularly strain your children have been isolated? Can it be isolated? What antibiotic has worked for you? I am just puzzled to see how in this forum different families have had success with different antibiotics, and trying to figure out what will do the trick for my family. It'd be interesting to correlate the location / time of exposure / initial symptoms (as in asymptomatic for strep vs. RF vs. kawasaki vs. scarlet fever, etc) / PANDAS symptoms / etc with the kind of antibiotic that works, maybe we all can benefit from connecting some dots here...

[sf_mom]

I will post more information in a bit.... running out the door. The type of strains has been found in RF and Kawasaki's (based on certain studies) all S. pyogenes group A.

 

 

 

I know no one likes to hear this........... but based on our personal situation ITS THE STRAIN. All three of our children look like the are suffering from similar due to their age (under developed immune system) at time of exposure to a child who had RF. We will be drawing blood for the CaM Kinase test for our DD 2 1/2 on Monday.

 

Basically 5 children at playdate, 3 are confirmed PANDAS with the other two looking like they are PANDAS but waiting until all the tests completed to confirm diagnoses.

 

Our son 5 1/2, CaM Kinase 124 (blood drawn 11 days post 5 day steroid burst), low normal IgGs, deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers

 

Our son 2 1/2, CaM Kinase 148, Low IgG 525, deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, Low RBC, Low WBC, Lympocytes 65 - range 35 to 65

 

Our daughter 2 1/2, Low IgG 412, deficiencies in 9 of 14 Strep Pneumococcal Antibody Titers, Low WBC, High Lympoctes 70 -range 35 to 65

 

Our son's friend 6 1/2, CaM Kinase 148, diagnosed with RF: High ESR, CPR, deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers, Low IgGs, ETC (many more abnormal labs)

 

-Wendy

Wendy,

Wow, so it's not just an individual's genetic make up but a specific strain that causes this? Dr. Latimer also mentioned she thinks it's a particularly resistant strain. We are seeing an infectious disease specialist soon to try to figure it out, but I would like to know more about your experience... Has the particularly strain your children have been isolated? Can it be isolated? What antibiotic has worked for you? I am just puzzled to see how in this forum different families have had success with different antibiotics, and trying to figure out what will do the trick for my family. It'd be interesting to correlate the location / time of exposure / initial symptoms (as in asymptomatic for strep vs. RF vs. kawasaki vs. scarlet fever, etc) / PANDAS symptoms / etc with the kind of antibiotic that works, maybe we all can benefit from connecting some dots here...

[sf_mom]

In our situation, it is not genetics or predisposition 'we think'.... our children are not biologically related fully (thanks to ARTs) but carried by me in utero. The two additional boys are not related to each other or our children. I attempted to have my younger son tested. Unfortunately, you would need a culture from time of exposure. I was told tracking bacteria in the blood can be inconclusive because there could be more than one type.... All different bacteria's reside in our bodies and it is up to the immune system to manage the level of bacteria.

 

High dose Azithromycin is working, in conjunction with IVIG (our oldest son has his third high dose IVIG infusion next week). Going forward, he will most likely be receiving monthly IgG shots. Our twins will most likely receive a high dose IVIG treatment, followed also by IgG shots. Our children were exposed over two years ago and it has essentially done a number on their immune system since. They would have no ability to fight this thing with just antibiotics. We already know this because they spent 8 months trying to eradicate the strep from my friends son with no success and he had a much stronger immune system than our 6 month old twins did at the time.

 

-Wendy

 

 

 

 

 

 

-Wendy

Wendy,

Wow, so it's not just an individual's genetic make up but a specific strain that causes this? Dr. Latimer also mentioned she thinks it's a particularly resistant strain. We are seeing an infectious disease specialist soon to try to figure it out, but I would like to know more about your experience... Has the particularly strain your children have been isolated? Can it be isolated? What antibiotic has worked for you? I am just puzzled to see how in this forum different families have had success with different antibiotics, and trying to figure out what will do the trick for my family. It'd be interesting to correlate the location / time of exposure / initial symptoms (as in asymptomatic for strep vs. RF vs. kawasaki vs. scarlet fever, etc) / PANDAS symptoms / etc with the kind of antibiotic that works, maybe we all can benefit from connecting some dots here...

/2

[Worried_Dad]

I'd like to get opinions from the "step testing gurus" on the forum. My son has been pretty chronically ill with PANDAS symptoms for 3 years, and has only improved temporarily after treatments like IVIG or steroids even while on normal abx prophylaxis dose. He's making steady progress now on the 2000 mg of daily augmentin XR... but I worry that part of the problem may be consistent re-exposure. He hasn't been attending school for 3 years, so the only source of exposure would be family: me, my wife, and his 2 younger brothers.

 

We've repeatedly tested everybody for strep using throat cultures and have not had any positives. But our son has also never had a positive culture, despite elevated ASO titer after each exacerbation. So maybe the cultures are giving us a false sense of security....

 

Do you think we should run ASO titers on the whole family as a precaution? Or is that paranoia?

[ajcire]

I don't see the harm in doing the aso titers on the family.... even if it was paranoia but I don't fully understand the whole thing. Even if yours came back elevated... doesn't that just tell you that at one point within the last year you had it? It doesn't mean you actually have strep currently right? I thought that most people would have at least slightly elevated titers if checked because of how common strep is? No?

 

 

 

 

 

I'd like to get opinions from the "step testing gurus" on the forum. My son has been pretty chronically ill with PANDAS symptoms for 3 years, and has only improved temporarily after treatments like IVIG or steroids even while on normal abx prophylaxis dose. He's making steady progress now on the 2000 mg of daily augmentin XR... but I worry that part of the problem may be consistent re-exposure. He hasn't been attending school for 3 years, so the only source of exposure would be family: me, my wife, and his 2 younger brothers.

 

We've repeatedly tested everybody for strep using throat cultures and have not had any positives. But our son has also never had a positive culture, despite elevated ASO titer after each exacerbation. So maybe the cultures are giving us a false sense of security....

 

Do you think we should run ASO titers on the whole family as a precaution? Or is that paranoia?

[dut]

Dr T suggested that we get everybody's titers run in our family just to be sure there's no simmering infection in anyone. Not paranoia in my mind....

[EAMom]

WD--

I think it is worthwhile doing if you can't get a positive culture...as long as everyone understands that neg titers don't completely rule out strep since some people just don't make them.

[ajcire]

But don't positive titers just indicate that at one point there was strep?

 

 

 

 

 

 

 

WD--

I think it is worthwhile doing if you can't get a positive culture...as long as everyone understands that neg titers don't completely rule out strep since some people just don't make them.