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Posted

Dr. K,

 

Today, I'm a very worried mother. I'm sad to say my 'instincts' were correct. We can talk more about Romy's clinical picture when I'm out there next week. I've listed all of Romy's test results below (I will bring them with me). I'm thinking about having a lymphocyte subset panel done to see if he is fighting an underlying infection, your thoughts? AND..... I need to add that there was one other boy at playdate in 2007 that is also showing signs of PANDAS/OCD. His father is checking medical records to confirm if he tested positive for strep or was sick during that time period and potentially run other tests. I'll keep you posted on PJ.

 

 

Romy's Test Results:

 

CaM Kinase: 148

 

White Blood Cell Count: 4.8: Low end of normal range is 6.0

 

Red Blood Cell Count: 32: Low end of normal range is 33

 

ASO: Negative

 

Anti-DNAse-B: Negative

 

Strep Pneumoniae Antibody IGG

 

Serotype 1: < 0.3

 

Serotype 3: < 0.3

 

Serotype 4: < 0.3

 

Serotype 5: < 0.3

 

Serotype 8: < 0.3

 

Serotype 9: < 0.5

 

Serotype 12: < 0.3

 

Serotype 14: < 2.4

 

Serotype 19: < 0.4

 

Serotype 23: < 1.2

 

Serotype 26: < 1.6

 

Serotype 51: < 0.3

 

Serotype 56: < 0.3

 

Serotype 68: < 0.7

 

 

 

Brief History of Exposure in 2007

 

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's 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 was treated with IVIG on day 5 of high fever. I asked if Kawasaki’s was contagious and explained my older sons symptoms. 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 Monday, Novemeber 5th, 2007 and treated with several courses of antibiotics. 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, extreme shyness, seperation anxiety, OCD behavior, TICS, chapped lips with cold sores and is repeating Kindergarden.

 

Corsa: CaM Kinase 124, Deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers

 

Romy: CaM Kinase 148, Deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers

 

Adrian: CaM Kinase 147, Deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers (Blood Draw in Feb. 2008, Retested Pneumococcal Antibody Titers 11/12/09)

Posted

wendy,

oh. so your little one has a higher cam k than the older one who is PANDAS?

what does that other stuff at the bottom indicate? you did immuno test? interesting on the white blood count, that's what my son has on one of his, same number, so low end of normal and one was a few points under. I had a thread about blood tests a bit back, wondering if others showed low wbc. wondering if that means there is a low grade infection somewhere? don't really know, just wondering.

 

I was going to say not to worry unless you started seeing any type symptoms, I know you think you do, but I'm sure its tolerable right now. was he sick recently that you know? I'd say as long as he doesn't get a big illness, you have time to get him on the right treatment. he'll be really fine, if it is something re PANDAS, you couldn't get it earlier than this.

 

Faith

Posted

It is higher in the younger but my older son was 11 days post 5 steroid burst which can have an impact on results. Yes we did do some additional testing through pediatrician which is listed in detail under the Strep Pneumoniae Antibody IGG for Romy. As for low white, or low red blood cell count it is indicative of an underlying infection or auto-immune disease but also read about S. Pyrogenes.

 

Group A streptococcus. Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]

 

Romy was sick recently.... and he was requesting to be held constantly during that period.

 

Promise to get back to you on all the other issues when I have more time.

 

-Wendy

 

 

wendy,

oh. so your little one has a higher cam k than the older one who is PANDAS?

what does that other stuff at the bottom indicate? you did immuno test? interesting on the white blood count, that's what my son has on one of his, same number, so low end of normal and one was a few points under. I had a thread about blood tests a bit back, wondering if others showed low wbc. wondering if that means there is a low grade infection somewhere? don't really know, just wondering.

 

I was going to say not to worry unless you started seeing any type symptoms, I know you think you do, but I'm sure its tolerable right now. was he sick recently that you know? I'd say as long as he doesn't get a big illness, you have time to get him on the right treatment. he'll be really fine, if it is something re PANDAS, you couldn't get it earlier than this.

 

Faith

Posted

Wendy:

 

I just want you to know that I am thinking about you!

 

I still remember when I received the Cunningham numbers for my "non PANDAS" daughter followed by the adrenalin rush that shot through my body and then the complete panic set just set in permanently. But now you have a great doctor and your child is so young, which I think is good in terms of treatment.

 

Let us know what Dr. K says to you.

 

We will be thinking about you.

 

Elizabeth

Posted

I read your post last night but didn't have time to respond. I'm so sorry your instinct was correct. It's how everyone that the "Mommy instinct" is irreplaceable. Hopefully, you are catching it soon enough that (in the scheme of things) recovery won't be too difficult. One can wish and hope, right?

 

So, is everyone thinking that is was a strain of strep that ran rampant in your region? it's seems like so many kids around you have this. It also makes one wonder why so many kids have this susceptibility to this autoimmune disorder. Has anyone contact the CDC or local media?

 

Please keep us posted. I will keep all of you in my prayers.

Posted

Thanks everyone for you thoughts.... I'm working through the shock which will bring me to action.

 

I contacted Susan Swedo, Madeleine Cunningham and I'll be seeing the Pediatric Infectious Disease and Immunologist Specialist at Stanford again. In our case it definitely looks like it was contagious and picked on children with weak or not fully developed immune systems. Its got to be the stain. There has got to be an underlying infection that is difficult to eradicate because our younger son was treated with IVIG 'only'. Even the incubation period mirrors the S. pryogenes time frame incubation. AND its important to note that the S pryogenes was found in Kawasaki's patients blood CELLS and they do not have positive ASO or ANTI-DNAse-B.

 

I'll keep everyone update.

 

Our son Corsa 'the older one' is almost 8 weeks post his first IVIG. We've cut his antibiotic back 250 mgs and we've notice a small increase in symptoms and the dark circles under his eyes have reappeared. Its my belief the donor antibodies are starting to decrease and the antibiotic isn't strong enough to do the job. After this round of IVIG, we intend to test the Strep Pneumoniae Antibodies to see if they deplete over time and get a sense of how rapidly.

 

Just so everyone knows, I've had our younger son on 125 mgs of Azithromycin and we've seen improvement. In my heart, I knew... I actually connected all the behavioral issues in our younger son in a dream. I can't but help think somebody is out there watching over my children.

 

-Wendy

Posted
Thanks everyone for you thoughts.... I'm working through the shock which will bring me to action.

 

I contacted Susan Swedo, Madeleine Cunningham and I'll be seeing the Pediatric Infectious Disease and Immunologist Specialist at Stanford again. In our case it definitely looks like it was contagious and picked on children with weak or not fully developed immune systems. Its got to be the stain. There has got to be an underlying infection that is difficult to eradicate because our younger son was treated with IVIG 'only'. Even the incubation period mirrors the S. pryogenes time frame incubation. AND its important to note that the S pryogenes was found in Kawasaki's patients blood CELLS and they do not have positive ASO or ANTI-DNAse-B.

 

I'll keep everyone update. -Wendy

 

Wendy, I am so sorry.... I know you are devastated. I am thinking about you and your family. Please keep us posted.

 

Susan

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