I found this when I was searching for something else...

[thereishope]

My natural temp is in the 97 range. I'm telling you, when I reach 99 I feel like I am burning inside. I feel awful. It sounds like 99 is a fever for her. So, Pixie has a pretty consistent fever they refuse to recognize. Nice.

 

Realizing we are getting off topic, but I have to add this. You all may have seen me mention Pixie's "unexplained" fevers, and that is what I am referring to. She will normally be around 97 (rather low) for her temp, but then it will raise up to 99, 100, highest has been 103 with no symptoms and that lasted 10 days and the ped FINALLY saw it for herself and ran some tests for Kawasaki, Lupus, Lyme, Leukemia.... nothing came back except a SED rate of 63!!! They said this was a lab error and re-ran it, BUT she was over the fever by the time they re-ran it (of course!) she was over the fever and the SED rate was down to 14. At that point the ped refused to do any more tests, so we changed doctors (not that that got us anywhere for a couple of years!)

 

During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms.

 

She used to get 2 big bouts of fevers each year (with no other symptoms)- in Sept and in March. BUT now they are lower and more frequent- increasing more and more. We are now to the point where a doctor would consider her "normal" baseline to be 99 because that is the temp she is probably 4 days out of the week. The fluctuations from 97 to 99 don't fit the pattern of exacerbation from before- now she will have the behaviors no matter what.

 

The chiro we just saw feels like Pixie has a viral pattern showing in her blood work (in addition to the strep) and that we should treat that with various herbs and high doses of vitamin D. There is enough to say about this for a whole other thread though!!

 

Manda

[ajcire]

Realizing we are getting off topic, but I have to add this. You all may have seen me mention Pixie's "unexplained" fevers, and that is what I am referring to. She will normally be around 97 (rather low) for her temp, but then it will raise up to 99, 100, highest has been 103 with no symptoms and that lasted 10 days and the ped FINALLY saw it for herself and ran some tests for Kawasaki, Lupus, Lyme, Leukemia.... nothing came back except a SED rate of 63!!! They said this was a lab error and re-ran it, BUT she was over the fever by the time they re-ran it (of course!) she was over the fever and the SED rate was down to 14. At that point the ped refused to do any more tests, so we changed doctors (not that that got us anywhere for a couple of years!)

 

During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms.

 

She used to get 2 big bouts of fevers each year (with no other symptoms)- in Sept and in March. BUT now they are lower and more frequent- increasing more and more. We are now to the point where a doctor would consider her "normal" baseline to be 99 because that is the temp she is probably 4 days out of the week. The fluctuations from 97 to 99 don't fit the pattern of exacerbation from before- now she will have the behaviors no matter what.

 

The chiro we just saw feels like Pixie has a viral pattern showing in her blood work (in addition to the strep) and that we should treat that with various herbs and high doses of vitamin D. There is enough to say about this for a whole other thread though!!

 

Manda

 

 

WOW... that really sounds like what I think I am seeing. I know this might be a stupid question but what is SED? and what does it indicate if it's high? Maybe I should have gone in and begged them to do bloodwork? I have an appt tuesday for him to have a titers test (ugh I know.. this test is going to shoot me in the foot big time) but if he still has the that low grade stuff going on... .hmm....

[faith]

I'm on the go at the moment, but I just want to respond re the fever..... my son is not autistic, but his presentation is mostly tics, and I have mentioned several times on this forum that when my son is sick with viral (fever, vomiting, achy, just wants to lay in bed and says "shh, don't touch me") I have noted that his tics practically disappear during that 24 hour period.

 

And that word "latent" ,, EAmom, I swear that thought was in my mind early this morning before I read this. I feel like it means something. like the virus is always there in a "latent" state, and then any illness and antibody response kind of "stirs things up"?......

 

I gotta come back and study this more later.............

 

 

Faith

[Betty04]

Just wanted to add that my son's ENT was the kind of doctor to think out of the box. He was open to the PANDAS diagnosis and removed my sons tonsils. He told me he removed several tonsils for kids who had "unexplained" chronic fevers and after the removal, no fevers... something to think about?

[sf_mom]

Manda,

 

While investigating Rhuematic Fever... I remembered reading something about a pink spidery rash. This was taken from the first website I looked at this morning trying to find it for you "rash - a pink rash with odd edges that is usually seen on the trunk of the body or arms and legs." . Additionally, my correspondence with Madeleine Cunningham yesterday, she stated the following. In her last sentence, she is referencing RF bacteria and when she states other things, she is referencing 'IVIG and PEX'. In a prior e-mail, she talked about the rash not ALWAYS being present at on-set RF. Again, RF is not on any Dr.s radar currently.

 

I truly believe PANDAS, is SC, is RF just different phases, presentation. If you investigate RF further you'll find RF lists SC as a symptom. Also the study out of Rome, indicates 58% of the kids they studied with strep triggered TIC illnesses had heart abnormalities. We all know our kids complain of joint pain. Madeleine reviewed the study and responded by saying she had worked very closely with the individuals in Rome and that their work is highly regarded.

 

Also the study regarding the outbreaks of RF in Utah clearly state the M1 and M18 strains of Bacteria are difficult stains to eradicate from host. Essentially, wiping out immune system.

 

 

Dear Wendy

 

The Scarlet Fever is caused by group A streptococci (Streptococcus pyogenes)

while pneumococci are Streptococcus pneumoniae. They are very different

organisms. Children do not respond to the pneumococcus due to the underdeveloped

immune system which improves as they grow older.

 

The Scarlet Fever is a rash and desquamation of hands and tongue sometimes if a

bad case of SF. IT IS NOT RHEUMATIC FEVER which is an autoimmune disease following

group A streptococcal infection and has nothing to do with the strep throat and scarlet fever

symptoms.

 

Unless you are diagnosed with a pathologic immunodeficiency, your immune system may

just be underdeveloped if you are in the low end of normal.

 

Group A strep are not resistant to the antibiotics but can get in areas where there is not

as much blood flow to deliver the drug. In that case you might be able to carry the organism

in the tonsil or sinus where the antibiotic may have not reached. Doctors may give a large dose

sometimes to get the blood levels up to kill organisms in these areas but it is the reason

for taking out tonsils etc.

 

I hope this helps some of the confusion. Group A strep are sensitive to penicillins while the

pneumococcus is less so and should be treated with other drugs such as azithromycin and other

things that will take care of it.

 

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

________________________________________

 

Realizing we are getting off topic, but I have to add this. You all may have seen me mention Pixie's "unexplained" fevers, and that is what I am referring to. She will normally be around 97 (rather low) for her temp, but then it will raise up to 99, 100, highest has been 103 with no symptoms and that lasted 10 days and the ped FINALLY saw it for herself and ran some tests for Kawasaki, Lupus, Lyme, Leukemia.... nothing came back except a SED rate of 63!!! They said this was a lab error and re-ran it, BUT she was over the fever by the time they re-ran it (of course!) she was over the fever and the SED rate was down to 14. At that point the ped refused to do any more tests, so we changed doctors (not that that got us anywhere for a couple of years!)

 

During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms.

 

She used to get 2 big bouts of fevers each year (with no other symptoms)- in Sept and in March. BUT now they are lower and more frequent- increasing more and more. We are now to the point where a doctor would consider her "normal" baseline to be 99 because that is the temp she is probably 4 days out of the week. The fluctuations from 97 to 99 don't fit the pattern of exacerbation from before- now she will have the behaviors no matter what.

 

The chiro we just saw feels like Pixie has a viral pattern showing in her blood work (in addition to the strep) and that we should treat that with various herbs and high doses of vitamin D. There is enough to say about this for a whole other thread though!!

 

Manda

[thereishope]

My son had his tonsils and adenoids removed in Feb 2009. He has had those higher temps since then. As recent as a month ago.

 

 

Just wanted to add that my son's ENT was the kind of doctor to think out of the box. He was open to the PANDAS diagnosis and removed my sons tonsils. He told me he removed several tonsils for kids who had "unexplained" chronic fevers and after the removal, no fevers... something to think about?

[Kayanne]

During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms.

 

2006--The first time ever that strep was in my house my son was 16 mos and broke out in hives...rapid strep was positive...there really were no other signs of it...the ped said his throat looked a little red, but not like strep, and he swabbed it to be sure...he was a little surprised it was positive.

 

Like SFMom, I too, have come across "erythema marginatum" as one of the symptoms of RF...but I don't think it is strictly limited to RF...it is known to be caused by strep. The following link takes you to a picture. I looked it up on wikipedia, and hit the photos link

 

http://www.your-doctor.net/images/cardiova..._Marginatum.jpg

 

This website also gives a good description of it at the bottom of the page.

 

http://www.fpnotebook.com/CV/ID/ActRhmtcFvr.htm

[sf_mom]

Great image... REMINDER Madeleine said rash is not always present at on-set... 30% of cases.

 

 

During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms.

 

2006--The first time ever that strep was in my house my son was 16 mos and broke out in hives...rapid strep was positive...there really were no other signs of it...the ped said his throat looked a little red, but not like strep, and he swabbed it to be sure...he was a little surprised it was positive.

 

Like SFMom, I too, have come across "erythema marginatum" as one of the symptoms of RF...but I don't think it is strictly limited to RF...it is known to be caused by strep. The following link takes you to a picture. I looked it up on wikipedia, and hit the photos link

 

http://www.your-doctor.net/images/cardiova..._Marginatum.jpg

 

This website also gives a good description of it at the bottom of the page.

 

http://www.fpnotebook.com/CV/ID/ActRhmtcFvr.htm

[matis_mom]

Just a very simplistic home-made theory about the absence of PANDAS symptoms while the child is actually sick... Could it be that all those antibodies that are just messing around with the brain, suddenly find a real enemy and go take care of that for a while and leave the brain alone??? Then when the new infection has been taken care of, they are beefed up, their numbers are strong, they are in high spirits but with nothing to do, so they say, "hey, let's go mess around with the brain again until we find something better to do!"

 

Think of them as an army with no war to fight... Interesting...

 

Isabel

[Stephanie2]

A good DAN doctor would help them to figure out if it is pandas or not. Many children with autism have pandas as one of the underlying illnesses. Treating strep is one aspect of the DAN protocol.

 

Stephanie

 

We just run through test and knowing my son has very high level of strep virus. Can strep virus be latent, too? If it can, so my son's autism comes from these strep virus in his brain, and it is in latent status most of time? Does it make sense?

THe reason I ask is because when my son is not sick, he is more autistic. When he has a fever and taking motrin, he is much less autistic ( nearly a normal boy). Dana commented that he has "Latent Virus in the brain". I am here trying to figure out what does latent virus mean and is it strep virus in the brain?

 

 

It's from this website http://onibasu.com/archives/am/236560.html, a 2008 post.

 

I just wonder if this kid has PANDAS?? It's pretty typical of PANDAS kids to improve on advil (motrin/ibuprofen).

 

And another:

 

 

Same thing with my GS, except he great when sick and on antibiotics!

 

Chris

Hmmm...great on antibiotics?

 

And the response was weird too...

 

This is a sign of latent viruses in your child's brain.

 

The fever suppresses/fights off the virus temporarily, and the motrin

reduces inflammation.

 

Dana

 

And why do they keep calling strep a virus? Strep is a bacteria...and what are they even talking about???

I just wonder how many "autistic" (and "bipolar") kids are out there that happen to get better while on antibiotics and motrin. Ughhh.