I Found This Interesting

[sf_mom]

Most extensive list of symptoms for RF I have ever seen and interestingly enough some of the symptoms seem way too familiar: I've listed a few below.

 

Abdominal Pain

Anorexia Decreased appetite

Anorexia in Children

Chronic Abdominal Pain

Epigastric Pain

RAP syndrome/children/Recurrent abdominal pain

Recurrent Abdominal Pain

Upper Abdominal Pain

Diffuse Aches and Pains

Hip Inner Thigh Pain

Motor restlessness

Motor restlessness/akathisia

Tender muscle/tendon insertions

Athetosis

Cervical radiculopathy syndrome

Chorea signs

Choreoathetoid movement

Choreoathetosis

Hemiplegic Gait

Lethargy/torpor

Tics/sign

 

 

Link for entire listing: http://en.diagnosispro.com/disease_compari...5643-19125.html

[JDuffner]

Hi,

 

Elizabeth told me that your child had KD as a baby and now possibly PANDAS. My child was diagnosed at 3 with KD underwent IVIG...now new doctor thinks at 6.5 it's PANDAS and could have been RF all along. Can you tell me what you've found out about the link betwene KD And PANDAS? Elizabeth also mentioned Dr. K has extensive background in KD? Is this true? My childs god parents are in Hinsdale and I could potentially go there if I needed to for treatment.

 

Thanks for anything you can provide!

 

Jacque

[sf_mom]

Jacque,

 

I just spent the last couple of days with Dr. K and he was the first to diagnose a Kawasaki's case in the US - non Japanese child. Historically, Dr.'s felt that Kawasaki's was strep related due to its similarities to RF and Scarlet Fever. As you may know, Kawasaki's patients don't have positive strep cultures, elevated ASO or anti-DNAse-B..... so the medical community moved away from it being strep related over the last 20 years (they just didn't know the cause). I recently found a study out of Japan that proved in 100% of all Kawasaki's patients the S. prygenes exotoxin (the bacteria) was present. I've had some long discussions with Dr. K about this over the last couple of days and we are running further labs on our younger son to determine treatment course.

 

http://www.latitudes.org/forums/index.php?showtopic=5897

 

We've done the following so far and he had the following results. Low White Blood count, Low Red Blood count, deficiencies in 13 of 14 Strep Antibody Titers. We will be running IgG subclasses this week.

 

I would definitely consult with Dr. K......

 

-Wendy

 

 

Hi,

 

Elizabeth told me that your child had KD as a baby and now possibly PANDAS. My child was diagnosed at 3 with KD underwent IVIG...now new doctor thinks at 6.5 it's PANDAS and could have been RF all along. Can you tell me what you've found out about the link betwene KD And PANDAS? Elizabeth also mentioned Dr. K has extensive background in KD? Is this true? My childs god parents are in Hinsdale and I could potentially go there if I needed to for treatment.

 

Thanks for anything you can provide!

 

Jacque

[smartyjones]

please excuse my ignorance as i don't know anything about kawasaki's. SFmom - i think you and i recently posted about pandas, rf, sc, and kawasaki's all being on one spectrum - yes?

 

would you think it matters to deferentiate other than for terms of getting a certain diagnosis for treatment? are there things we need to know about one vs. another in terms of other body system involvement dangers or is it all part of the same goal of getting rid of the strep and healing the body?

 

thanks,

Kathy

[sf_mom]

Same goal, eradication of strep...... Kawasaki's and RF have very similar symptoms. Primary concern is the attack to the heart ventricle. BUT, also many of the symptoms mirror PANDAS as well.

 

Both Kawasaki's and RF are documented diseases and therefore covered by insurance. IVIG is standard treatment for Kawasaki's.

[EAMom]

Same goal, eradication of strep...... Kawasaki's and RF have very similar symptoms. Primary concern is the attack to the heart ventricle. BUT, also many of the symptoms mirror PANDAS as well.

 

Both Kawasaki's and RF are documented diseases and therefore covered by insurance. IVIG is standard treatment for Kawasaki's.

 

So if you have a Kawasaki's diagnosis, you should have no problem getting insurance to cover IVIG...that may not necessarily be the case with RF (or SC) or PANDAS.

[sf_mom]

IVIG is the only proven treatment 'so far'.... for Kawasaki's. I know for many kids more than one treatment is required....... So, I think its a question of how many treatments insurance would allow. Its also my understanding the IVIG/Steroids is now becoming standard for SC and I'm not completely sure of the 'standard protocol' for RF (I just know Dr.'s will actually listen with RF Diagnoses). Although my son's friend has now been diagnosed with RF based on recent Ecco results.

 

-Wendy