4th Child Was Positive For Strep At Time Of Playdate

[sf_mom]

I just found out this morning the 4th child at the playdate in 2007 was positive for strep at time and also showing symptoms. PJ is currently close to 7 and has the following symptoms, dark circles under eyes, is lucky if he gets 8 hours of sleep at night, needs his father to sit with him for an hour nightly while he falls a sleep, can not sit still, AD/HD, has problems sitting at dinner table... typically stands, mood liability, claims to have allergies to specific foods or bugs, extreme fear of spiders and bees, often hits when in a rage, has locked himself in bathroom and wants to kill himself.

 

What are your thoughts? PANDAS? The mother and father are divorced and the father has custody, unfortunately a lot of behavior has been chalked up to the family situation. The father will be testing his CaM Kinase in the next couple of weeks. I will bet his results are similar to the other boys at the playdate and he is around 145 to 155.

 

I've attached the history once again.... DUE TO THE CLUSTERING OF CHILDREN with PANDAS.

 

November 2007 (IMPORTANT HISTORY): Sunday, Novemember 4, 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Exactly 10 days after playdate Corsa had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Eactly 10 days after the start of Corsa‘s illness our 5 ½ month old baby boy Romy started showing signs of a similar illness. However, Romy symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of Romy getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. Romy received IVIG on day 5 of high fever and symptoms/high fever relented. At the time, I asked every Dr. who entered our hospital room if Kawasaki’s was contagious and explained my older sons symptoms in detail. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s the week prior. I have recently discovered that our son‘s friend had peeling palms and feet (skin coming off in sheets) with a prior fever and rash at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was diagnosed with strep throat Thursday, Novemeber 8th, 2007 and treated with several courses of antibiotics throughout the next 7 months in an attempt to eradicate strep. It was eventuallly determined he had weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. THE SWOLLEN GLAND DID NOT RESOLVE ITSELF UNTIL ADRIAN’S ADENOIDS WERE PULLED. Our sons friend, still suffers from headaches, daily joint pain, weak immune system, separation anxiety, OCD behavior, TICS, chapped lips, dark circles under eyes similar to Corsa and Romy. There were two other children at playdate, one was continually exposed to Adrian, P.J. also confirmed positive for strep at the time of playdate and treated with a course of antibiotics, he is exhibited similar symptoms and will be tested within next couple of months to confirm possible diagnosis. Bena, Romy’s twin sister and Corsa younger sister was also playdate (only female present), did not get sick and doesn’t seem to be exhibiting symptoms at 2 ½ but will test her in the near future.

 

Adrian: CaM Kinase 147, Deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers, Anti-DNAse-B: 680 (Confirmed RF at time of playdate)

 

Corsa: CaM Kinase 124 (Blood Draw taken 11 days post 5 day steroid burst), Deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers, ASO: 244, Anti-DNAse-B: Negative (Most likely undiagnosed Kawasaki's - delayed response six months post with first TIC)

 

Romy: CaM Kinase 148, Deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, ASO: Negative, Anti-DNAse-B: Negative. (Diagnosed with Kawasaki's and first IVIG probably not enough to fight bacteria)

[thereishope]

That's just unbelieveable and so sad. So, at this playdate, did any of the parents know their child was actively sick?

 

It's just so scarey. Not only does it show that it was probably a certain strain of strep, but what made all these kids vulnerable to PANDAS in the first place? You wonder how many more kids in your area may have PANDAS and the parents are silent about the symptoms or that strain of strep is still floating around in asymptomatic children? Must be hard to feel safe.

 

They are lucky to have you, willing to share your experience, speaking up, and help guide them in possible directions.

[mama2alex]

It absolutely sounds like PANDAS. Are they trying antibiotics? Have they taken him to a local doctor about this? Dr. T., Lewis or Lloyd?

 

Have the families who were at the playdate reached out to anyone else who may have been exposed at the time to make sure their kids didn't "come down" with PANDAS and not realize what it was?

 

This is really an amazing story. The only people we know whose kids have PANDAS are on this forum. I've thought about reaching out to the families of Alex's 2nd grade class last year to try to determine who he caught strep from, but not sure how to word that particular email.

[sf_mom]

Vickie, at the time of playdate the parents did not realize that their children were sick. The mother of Adrian has been one of my best friends since college. I was actually the one who noticed the swollen gland on Adrian's neck and why I remember it so vividly..... it was huge. I was sitting across the table from his mother while Adrian was on her lap. I even remember it being on the right side of his neck and her saying Adrian had recently had a fever but was no longer symptomatic to reassure me (with my twins being only 6 months old). Anyway, I never thought it was strep, his mother never said ANYTHING at the time to me when he confirmed positive for strep 4 days later. We just didn't make the connection even though my kids got deathly ill 10 days later. Again, because it started out looking like pink eye in my older son, I didn't think much of it until my younger son got ill. I remember thinking, months later when they were not able to resolve the swollen neck gland on Adrian that he might have Leukemia. They even offered IVIG at the time to help abate but decided to pull his adenoids instead. It wasn't until I went to the head of pediatric infectious disease and immunology at Stanford's Children's hospital were we able to fully make the connection to RF. I just happen to have Adrian's lab results from that time period with me and the Dr. saying he felt it was RF.

 

Thankfully, it is only contagious when there is an active strep infection but I can't help but think how many others were potentially infected and might be suffering. I know our family has suffered greatly and I, at times, want to scream at my friend for not recognizing how sick Adrian was at the time....... but she too has sick child and he has also suffered greatly. By the way, he is doing much better post IVIG. I will continue to update on him when the opportunity arises.

 

I keep beating the dump, its contagious, its contagious, its contagious (depending on childs age and state of immune system at time of exposure), its the strain, its the strain, its the strain because of our situation. I have put numerous e-mails out to many strep experts and Dr.'s praying that they will understand and start treating this as a really resilient bacteria. I'm getting responses but we'll see if I can change any minds.

 

-Wendy

[sf_mom]

Dr. T knows and has helped, Dr. K knows and has treated Adrian, Dr. Lewis knows and will be seeing him in January, Dr. Lloyd knows the history but has not seen Adrian. Adrian lives north of SF so the Pediatrician we used see in the city is helping with all our kids when needed.

 

I did reach out at the time to Corsa's preschool, I actually hounded them.. because I thought the pre-school was the original source of the problem. Remember Romy was in such a bad state.... so bad that the Dr. at urgent care wouldn't even touch him and directed me immediately to Pediatric Emergency at CPMC.

 

-Wendy

 

 

 

 

 

It absolutely sounds like PANDAS. Are they trying antibiotics? Have they taken him to a local doctor about this? Dr. T., Lewis or Lloyd?

 

Have the families who were at the playdate reached out to anyone else who may have been exposed at the time to make sure their kids didn't "come down" with PANDAS and not realize what it was?

 

This is really an amazing story. The only people we know whose kids have PANDAS are on this forum. I've thought about reaching out to the families of Alex's 2nd grade class last year to try to determine who he caught strep from, but not sure how to word that particular email.

[thereishope]

I agree to the strain part, but I also think these children are somehow predisposed for it. Maybe for some it's genetic, some maybe not. But then what is causing so many of them to have such whacked out immune systems in such a concentrated area?

 

 

Vickie, at the time of playdate the parents did not realize that their children were sick. The mother of Adrian has been one of my best friends since college. I was actually the one who noticed the swollen gland on Adrian's neck and why I remember it so vividly..... it was huge. I was sitting across the table from his mother while Adrian was on her lap. I even remember it being on the right side of his neck and her saying Adrian had recently had a fever but was no longer symptomatic to reassure me (with my twins being only 6 months old). Anyway, I never thought it was strep, his mother never said ANYTHING at the time to me when he confirmed positive for strep 4 days later. We just didn't make the connection even though my kids got deathly ill 10 days later. Again, because it started out looking like pink eye in my older son, I didn't think much of it until my younger son got ill. I remember thinking, months later when they were not able to resolve the swollen neck gland on Adrian that he might have Leukemia. They even offered IVIG at the time to help abate but decided to pull his adenoids instead. It wasn't until I went to the head of pediatric infectious disease and immunology at Stanford's Children's hospital were we able to fully make the connection to RF. I just happen to have Adrian's lab results from that time period with me and the Dr. saying he felt it was RF.

 

Thankfully, it is only contagious when there is an active strep infection but I can't help but think how many others were potentially infected and might be suffering. I know our family has suffered greatly and I, at times, want to scream at my friend for not recognizing how sick Adrian was at the time....... but she too has sick child and he has also suffered greatly. By the way, he is doing much better post IVIG. I will continue to update on him when the opportunity arises.

 

I keep beating the dump, its contagious, its contagious, its contagious (depending on childs age and state of immune system at time of exposure), its the strain, its the strain, its the strain because of our situation. I have put numerous e-mails out to many strep experts and Dr.'s praying that they will understand and start treating this as a really resilient bacteria. I'm getting responses but we'll see if I can change any minds.

 

-Wendy

[sf_mom]

Sure maybe there is a predisposition in the child but it could also be just the age of child at time of exposure 'not a mature immune system' so no cross-immunity or a child who has a weakened immune system resulting from several recent prior illnesses.

 

In our situation, I believe whole heartedly it was the age of the children at time of exposure to a resilient strain 'S Pyogenes'. There is no coincidence when 5 children are at a playdate, 2 had active strep infections, 4 out of 5 are most likely PANDAS.

 

I am praying, praying, praying our daughter is not PANDAS too. We just had her IgGs, Strep Antibody Titers tested yesterday and will know results in a few days.

 

-Wendy

 

I agree to the strain part, but I also think these children are somehow predisposed for it. Maybe for some it's genetic, some maybe not. But then what is causing so many of them to have such whacked out immune systems in such a concentrated area?

[faith]

Wendy,

how did you find out about the 4th child? you havn't seen them since that playdate? the dad recalls that his child got sick with strep at that time? just to make sure, your not suggesting that just because the children (or any child) have strep, that they develop PANDAS or the behaviors tht seem to go with it? or do you feel that they all really had Kawasaki's? ..... also, how come all the kids I know that have strep, don't have problems like my son?... (who always tests negative) ...he had a sore throat and fever last night and we have yet another negative strep test today......I just don't get it.

 

Faith

[sf_mom]

OK... Hopefully, I can answer and help with understanding. The 4th child is my friend's boyfriend's son. I do see the 4th child but only about twice a year. I actually had concern's for PJ (his fear of bugs although I was not that familiar with OCD at the time) after exposure but in advance of Corsa's delayed/sudden on-set. Remember Corsa's first TIC happened six months post exposure 2007, that TIC was passed off as a 'bad habit' by his Dr after a 'sinus infection', sudden on-set happened a year after first TIC appeared and another strep infection and when multiple TICS occurred along with OCD. My girlfriend remembered PJ having strep at the time because her son too was very sick and they spent about 7 months trying to eradicate strep..... They just today confirmed PJs positive culture with the medical records.

 

There are many different strains of strep... I believe well over 100. The S Pyogenes has several strains itself inclusive of the M1, M3, M18. The same strain that is found in ARF and is differentiated with WHITE PUSS on the back of the throat. Oftentimes when strep is present there is no puss so typically a different strain. We know one boy had RF which carries a resilient strain typically M18, its hard to say if the other 3 were all undiagnosed Kawasaki's.... although Kawasaki's DOES NOT typically have a positive throat cultures (but they do have a sore throat with swollen tonsils, pink eye in both eyes and high fever for 5 days but NOT all symptoms present and is often misdiagnosed) and that would most likely rule out PJ due to positive culture. They know with SC that there is a delayed immune response approximately 6 to 9 months post exposure mostly likely from a IMMUNE RESPONSE (confirmed this with Dr. Kaplan strep expert). SO, if there was a resilient strain passed along between the boys and they all have similar labs, with similar CaM Kinase and variations of emotional symptoms all falling in the OCD/TIC...... its highly likely that they all got a very resilient strain that perhaps went global/intercellular and did not resolve with a typical 5 to 10 day course of antibiotics due to type of strain and state of immune system at time.

 

Were you able to read my father-in-laws summary of immune response to S Pyogenes? There is a tipping point that happens with the immune system and the child just ends up losing the battle with the bacteria because they don't have enough cross immunity to other strains to fight off more resilient stains of S Pyogenes.

 

Anyway, let me know if you have any more questions.

 

 

 

Wendy,

how did you find out about the 4th child? you havn't seen them since that playdate? the dad recalls that his child got sick with strep at that time? just to make sure, your not suggesting that just because the children (or any child) have strep, that they develop PANDAS or the behaviors tht seem to go with it? or do you feel that they all really had Kawasaki's? ..... also, how come all the kids I know that have strep, don't have problems like my son?... (who always tests negative) ...he had a sore throat and fever last night and we have yet another negative strep test today......I just don't get it.

 

Faith

[ajcire]

This is probably a dumb question and I have been around long enough now that I should know but what is IGG testing? Is that something I should have done?

[sf_mom]

IgG Subclass Testing of Immune System.

 

This is probably a dumb question and I have been around long enough now that I should know but what is IGG testing? Is that something I should have done?

[Suzan]

There are many different strains of strep... I believe well over 100. The S Pyogenes has several strains itself inclusive of the M1, M3, M18. The same strain that is found in ARF and is differentiated with WHITE PUSS on the back of the throat. Oftentimes when strep is present there is no puss so typically a different strain. We know one boy had RF which carries a resilient strain typically M18, its hard to say if the other 3 were all undiagnosed Kawasaki's.... although Kawasaki's DOES NOT typically have a positive throat cultures (but they do have a sore throat with swollen tonsils, pink eye in both eyes and high fever for 5 days but NOT all symptoms present and is often misdiagnosed) and that would most likely rule out PJ due to positive culture. They know with SC that there is a delayed immune response approximately 6 to 9 months post exposure mostly likely from a IMMUNE RESPONSE (confirmed this with Dr. Kaplan strep expert). SO, if there was a resilient strain passed along between the boys and they all have similar labs, with similar CaM Kinase and variations of emotional symptoms all falling in the OCD/TIC...... its highly likely that they all got a very resilient strain that perhaps went global/intercellular and did not resolve with a typical 5 to 10 day course of antibiotics due to type of strain and state of immune system at time.

 

Were you able to read my father-in-laws summary of immune response to S Pyogenes? There is a tipping point that happens with the immune system and the child just ends up losing the battle with the bacteria because they don't have enough cross immunity to other strains to fight off more resilient stains of S Pyogenes.

 

Although I can't begin to really understand all this yet, I do believe that this is what happened to my girls. We live in NC which seems to be one of the hot beds of PANDAS kids. I think there was a strain that was introduced in 2002/2003 that maybe only "got" the kids who were predisposed... I wish I had more info on the kids at the day-care at the time. I wish I had a more medical research brain so I could really grasp it all and maybe pass good info along to our immunologist. Thank you for all the great info and searching on this. HUGS to you and the families involved in this one.

 

Susan

[sf_mom]

Susan,

 

When we were last in Chicago there was a little boy being treated by Dr. K also from NC. I understand strep is crazy in your area....

 

Its so unfortunate, for example the study on the native Hawaiian's put OCD/Anxiety disorder at 13.8% and attribute most to household crowding and RF. Scary, scary, scary..... I figure if you are exposed over and over eventually the immune system has to cave.

 

As far as the science goes, I've been haunted by the connection and have many articles on my desk that I still don't understand. I was thankful to my father-in-law, explaining several times to both my husband and I so we could understand. I literately dictated the information from him.

 

He also told us some fairly scary stories about particular strains of bacteria doing odd things. He even mention the ability of the S Pyogenes getting into the testicles and literally eating it away. In the 4 or 5 times he saw it in his career they always had to remove testicle and would replace with an implant.

 

Thanks for the hugs. I'm determined to get Dr.'s to listen so they understand they CAN HELP MAKE OUR CHILDREN BETTER.

 

-Wendy

 

 

 

 

 

Although I can't begin to really understand all this yet, I do believe that this is what happened to my girls. We live in NC which seems to be one of the hot beds of PANDAS kids. I think there was a strain that was introduced in 2002/2003 that maybe only "got" the kids who were predisposed... I wish I had more info on the kids at the day-care at the time. I wish I had a more medical research brain so I could really grasp it all and maybe pass good info along to our immunologist. Thank you for all the great info and searching on this. HUGS to you and the families involved in this one.

 

Susan

[thereishope]

I agree it's no coincidence. But has anyone suggested that there is something environmental around you causing these children's bodies to become susceptible to this, besides age? But, then, you just said that one does not live around you so that sends my wondering out the window.

 

Sure maybe there is a predisposition in the child but it could also be just the age of child at time of exposure 'not a mature immune system' so no cross-immunity or a child who has a weakened immune system resulting from several recent prior illnesses.

 

In our situation, I believe whole heartedly it was the age of the children at time of exposure to a resilient strain 'S Pyogenes'. There is no coincidence when 5 children are at a playdate, 2 had active strep infections, 4 out of 5 are most likely PANDAS.

 

I am praying, praying, praying our daughter is not PANDAS too. We just had her IgGs, Strep Antibody Titers tested yesterday and will know results in a few days.

 

-Wendy

 

I agree to the strain part, but I also think these children are somehow predisposed for it. Maybe for some it's genetic, some maybe not. But then what is causing so many of them to have such whacked out immune systems in such a concentrated area?

[sf_mom]

Two of the boys live north of SF and we live south of SF (3 of the kids are mine)...... so about an hour and 1/2 apart on a good day no traffic.

 

Again, I think it goes back to the fact then when all the boys got REALLY sick inclusive of a six days hospital stay in 2007 on or within days of the playdate...... and all boys are most likely PANDAS. We know two boys had active strep at time of playdate. Remember the parents are dating and the boys were spending a ton of time together. ONE boy had RF at the time. Its the strain and if its the same strain known to be present in both Kawasaki's (we know one had Kawasaki's and one had RF) and RF..... its the S. Pyogenes.

 

Hopefully, my deductive reasoning makes sense.

 

-Wendy

 

I agree it's no coincidence. But has anyone suggested that there is something environmental around you causing these children's bodies to become susceptible to this, besides age? But, then, you just said that one does not live around you so that sends my wondering out the window.