Madeleine Cunningham's Comment To Me Regarding RF

[sf_mom]

Dear Wendy

Thank you for your kind email. We will keep trying to get funding.

Fortunately we have received funding for autoimmune heart diseases.

 

Rheumatic fever is not exactly contagious but it does require a streptococcal infection and

then several weeks or maybe months later, the child develops one or more of several major symptoms

such as a heart murmur, Sydenham chorea(involuntary movements) or arthritis. There could also be

a circular skin rash but it is rare. At the onset one discovers usually a high ASO and anti-DNASe B titer reflecting

PREVIOUS infection with group A streptococci. The disease is autoimmune and attacks the heart, joints, brain or skin.

It is treated with penicillin prophylactic therapy until the child is out of danger of having streptococcal infections

around 20-25 years old. Let me know if there are further questions.

 

Best Wishes

Madeleine

 

 

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

________________________________________

 

 

Madeleine,

 

Corsa's IVIG treatment was in late September so I think I'll save the kit for when we'll be able to get a more accurate measure. Corsa is about 98% better to date!!!! Unfortunately, we are a little worried about our younger son Romy who also took ill after play date in 2007.

 

In brief, an immunologist Dr. David Lewis at Stanford University feels our son's friend, Adrian might have had RF at time of play date due to symptoms at time, current symptoms, high anti-DNase-B of 680 and CaM Kinase of 147. Again, all three children got very ill within 10 days of each other... our youngest was only 6 months old and was treated with IVIG. He was diagnosed with Kawasaki's but did not exhibit all the traditional symptoms but his heart ventricles were definitely impacted. Now that I am aware of what OCD looks like... I have concerns and plan to have Romy's CaM Kinase tested. I'm sure you can shed a little light about Rheumatic Fever. Is it contagious or is it just past along as 'strep' and eventually becomes RF if it goes untreated?

 

I pray you get further funding so you can study the heck out of this disease!!!!

 

 

 

> Dear Wendy

>

> You probably should wait until we open the study again sometime

> in late January and you could wait until February. You may

> even decide if Corsa is doing very well to wait even longer.

>

> We have not yet done an IVIG study so I cannot give you any

> advice, but it does take time for donor antibodies to expire.

>

> How is Corsa doing? We are closing the second week in November.

> When was the IVIG treatment?

>

> Thanks

> Madeleine

[matis_mom]

Rheumatic fever is not exactly contagious but it does require a streptococcal infection and

then several weeks or maybe months later, the child develops one or more of several major symptoms

such as a heart murmur, Sydenham chorea(involuntary movements) or arthritis. There could also be

a circular skin rash but it is rare. At the onset one discovers usually a high ASO and anti-DNASe B titer reflecting

PREVIOUS infection with group A streptococci. The disease is autoimmune and attacks the heart, joints, brain or skin.

It is treated with penicillin prophylactic therapy until the child is out of danger of having streptococcal infections

around 20-25 years old. Let me know if there are further questions.

 

Thanks for posting this, it's not encouraging, but at least I know what the prospects are... my ds is showing signs of arthritis and a heart murmur. He's always had the murmur and it was always dismissed as innocent. Our current doctor's ears perked up on the last visit when I mentioned it. She requested a full cardio consult. It checked out ok, but now three months later they are still concerned about the heart as the murmur sounds more like a mitral-valve murmur. He is on abx but not really responding to them. Just makes me mad to think all this symptoms started years ago and they were always dismissed by the pediatrician . I really need to go get a copy of his chart and check the timeline of strep infections / joint swelling / murmur noticed.