Useful Info on Strep Infections from Ronna

[Guest ronna]

I just wanted to let you all know I posted more informaiton on my original thread at brain talk communities about IVIG and plasma exchange therapy as when researching PANDAS you will come across these. Hope this helps.

 

Ronna

[tictoc]

I see this thread wound down awhile ago but want to add that I think this was great, thanks very much to all, and have a happy [belated] new year!

[Ronnas]

Since I saw that this thread is bumped up I just wanted to post a small bit about prophylactic antibiotics. I left a longer thread a few days ago about this but thought I should add it here also.

 

We have chosen to not keep Kurt on prophylactic antibiotics as I think it has contributed to problems with yeast and a "leaky" gut kind of thing in which Kurt does not tolerate milk, eggs, chocolate and corn.

 

In my search on prophylactic antibiotics for treating rheumatic fever I found out that there is only one study done from the 60's that was poorly designed. At present the NIMH is doing a long term study about propylatic antibiotics. At present I am skeptical that prophylactic antibiotics will prevent a PANDAS episode in vulnerable kids.

 

Haivng said this I would say my knowledge is forever evolving. Everyone needs to go with their own feelings on the topic. My solution for Kurt has been to teach very thorough hand washing at home and at school...along with classmates etc. We get a throat swab at ANY sign of a cold, sniffle, scratchy throat or any sign of an increase in tics, behavioral issues etc. My other son was positive for strep so we treated Kurt at the same time as well even though he did not come back positive for it.

 

All medications even antibiotics have side effects. As with all medications the pros and cons need to be assessed. My feeling is that there are natural alternatives to antibiotics and it is more useful to build up the immune system through healthy eating and vitamins etc than to give long term antibiotics which can cause an imbalance in the intestinal flora and therefore compromise the immune system.

 

Anyways, this is just my opinion based on our experience. Believe me at one time on completely embraced prophylactic antibiotics and I wholehartedly understand the need to protect your child from STREP!

 

Anyways, this is where we are at now...in 6 months...who knows!

 

Ronna

[Heather]

Ronnas,

 

I agree with you regarding the antibiotics. My naturopath believes that it is the immune system that needs boosting to avoid being so vulnerable to these viruses or bacterial infections. She also says there are alternative things you can use to fight infections. Once our immune system is back in balance with proper nutrition, we are able to fight off the viruses naturally that come our way.

 

Heather

[Claire]

Heather,

 

I don't understand this last comment re your naturopath, could you explain? I could see how building your immune system would make you less resistant to catching viruses or even bacterial infections such as strep. However, my understanding is that if you actually catch strep--especially those susceptible to PANDAS, you need the antiobiotics.

 

My son just got his 6th strep notice from school since early December--his class only has 9 children--it just keeps recycling. Twice this month in a class alone!

 

Last night he said he couldn't swallow his pills because he felt like he had glass in his throat. I had a friend describe her strep symptoms to me once in exactly those words. He said he feels fine today though. I am nervous as heck-- "The only thing to fear is...strep!" I just want him to make it through the school year... It strikes me that he was exposed and it is just a matter of whether it 'takes hold' at this point.

 

Say a prayer for him...I don't want strep 5 times in 2 school years, and he definitely has a fear reaction when he gets strep.

 

Right now, he still sleeps in a pitch black room. With the melatonin at only .25 mg, he wakes up more often--but he still keeps the light off even in the middle of the night. Wow.

 

Ronna,

 

Thanks for the update on your thoughts on strep, and your youngest child's experience with strep. I hope his clinginess is gone now. I am not big on prophylatic antibiotics in general, but certainly it is a personal bias and more data is needed.

 

Claire

[Heather]

Hi Claire,

 

I edited the above post as I had mistakenly called strep a virus.

 

My naturopath says that there are natural treatments for every ailment including bacterial infections. I have not researched it enough to really have a good answer for you regarding the need for treatment with antibiotics.

 

I do know that my son had no signs or symptoms of the strep infection....no sore throat, no fever, etc. In fact, we never would have even known he had been infected with strep if he hadn't started ticcing. My doctor only did the strep test because she knew that there was an association.

 

It makes me wonder how many other children have been infected with strep and don't know it. My son also started ticcing months before this and it came and went so I am still unsure of how the whole strep bacteria fits into the picture.

 

Heather

[Claire]

Hi Heather,

 

Well I check I-Herb (thanks again Chemar, I LOVE that site!) and they said no alternative treatments exist for strep, bummer. They are pretty good about naming things with potential base even on anectodal evidence, then qualifying it as not proven. This was interesting:

 

http://healthinfo.healthgate.com/GetConten...&chunkiid=39030

 

"Principal Proposed Natural Treatments

• None"

 

"Strep throat itself will disappear in 3 to 5 days even without treatment. However, about 1 to 5 weeks later, when all seems to be well, rheumatic fever may suddenly develop. .... About 3% of untreated strep throat cases lead to rheumatic fever.1 Children ages 4 to 15 are most at risk. Adults with strep throat may develop rheumatic fever, but the chance is extremely low.

 

"The only known way to prevent rheumatic fever in people with strep throat involves using antibiotics at relatively high doses and for a prolonged period of time. The goal is to entirely eradicate the invading bacteria, so that the body does not feel a need to make antibodies against it."

 

 

 

I wonder if the incidence of PANDAS with untreated strep is the same order of magnitude or greater? And also, maybe it is the same in that adults don't seem to get PANDAS.

 

I know what you mean about not knowing how many kids got tics from strep, because no one knew they had strep. My son had fears and never even complained of a sore throat, except that I knew even to ask him about it.

[Guest Jason]

Hi Ronna my name is Jason. I am i high school senior and for my microbiology class i am doing a project on strep throat. i am very intrested in the information about PANDAS and tics. is there any other not publicly well known information you think it would be good for me to encorporate into my paper? thank you!

 

-Jason

[Ronnas]

Hi Jason...good luck on your paper. Here's a few links...I hope they help.

 

On the old braintalk I posted quite a bit about strep...

 

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html

 

At the new braintalk you can always use the "search this forum" feature and type in strep or PANDAS to see what has been posted...

 

http://brain.hastypastry.net/forums/forumd...splay.php?f=253

 

http://brain.hastypastry.net/forums/forumd...splay.php?f=196

 

Or you can check these out...

 

http://www.alertpubs.com/pandas.htm

 

http://www.neurotransmitter.net/pandas.html

 

A great web site is...

 

http://www.tourettesyndrome.net/pandas_overview.htm

 

As far as the basics about strep...emedicine is good.

 

Ronna

[Guest Amanda]

Dear Rona,

Any way the doctor says my son has strep throat although he does not have the white bumps in his throat, he does have red ones on his hands. I guess this is normal thats what the doc says.

 

By amanda

[Chemar]

bumping up for evie

[Darlene]

Hello,

 

My daughter is 13 and has had over 11 cases of scarlet fever since she was little. She has been to the disease specialist and neurologist with no help. They just wanted to put her on Strattera and that was it. I took on the mission to help her myself. The strep has not returned in over two years and her tics have subsided tremendously as have the other symptoms associated with PANDAS. I have been working with a family friend who is a nutritionist and that has helped immesely. I believe she has PANDAS but the doctors don't know what I am talking about and are easy to dismiss it. My concern right now is ADD. She still has poor focus and concentration at school. Her organization skills are really bad and it's causing a lot of frustration. She's in 7th grade and my main fear is that it's going to get worse. She is a very bright girl and does well on things that she's interested in but her overall school test scores are below average. I have been trying to educate myself with books and sites like this one to try to find some answers

 

Do you have any suggestions? Your information is very much appreciated. Thank you for your time.

 

Darlene

[mommaonamission]

Hello all...I found a good article that supports the connection between infection and Tourette's. It helps support what I have been suspecting the past couple of months. My son is 12 and had an outburst of vocal tics after a strep infection that have increased in the last 2 months since he got sick. We have been working really hard supplementing and getting him healthy, but most of our improvement only lasted temporarilly. I had a hard time understanding how my son who even started showing signs of coprallalia had it so bad all of the sudden when we have no history of Tourettes in our family.

 

Chemar, you were right if you read this about not getting better if there is still existing strep. We got his blood test results back yesterday, and he has 3 times the number of antibodies that he should. The strep has obviously settelled somewhere else and his body is continuing to try and fight it off. We go in for more tests on Monday and hopefully to get the right antibiotic.

 

This is an interesting article...I wish more docs would observe this connection:

 

http://www.sciencedaily.com/releases/1998/...80625083624.htm

[kim]

For Carmen

[kim]

dominique,

 

Go to the bottom left corner and click on page 1 to read this thread from the beginning.

 

It was started in 2003. It has comments from other's, on things that you're struggling with now, from parent's with actual experience (which I don't have ).

 

Kim