PANDAS Triggers and Homeopathy

[Rachel]

On Wednesay, Nov. 28 I was able to talk with Dr. Murphy's assistant, Jane Muntch about PANDAS. She confirmed much of what this group has discussed regarding the antibiotics. In addition, they are getting ready to perform studies on omnicef.

 

She forwarded me an article regarding OCD and PANDAS which I will bring up again with the web address for you to read. This department with Dr. Murphy really understands the disease and are actively researching it. Whene symptoms are severe they stress CBT (cognitive behaviorial therapy). How have you managed behaviorial deviations?

 

Two things struck me in our conversation: 1. Other illnesses and possible environmental triggers can trigger the antibody titers causing symptoms even while on antibiotic, 2. PANDAS carries on through adulthood. Which caused me to consider my husband's behaviorial symptoms which coincides with their behaviorial symptoms.

 

Tomorrow we are visiting an MD who also knows homeopathy to see if there is another way besides antibiotics?

 

By the way, in boosting the immune system the group has mentioned probiotics; but, isn't fish oil just as important to calm the intestine?

 

More Later, Rachel

[Chemar]

hi Rachel

 

the probiotics are intended to replenish the good biotics that occur naturally in the gut, and that the antibiotics kill off.

 

where omega 3 from fishoil or flaxseed etc is an essential element for healthy functioning, yet it doesnt fall into the same category as replenishing natural flora

 

 

on another thread I mentioned monolaurin (lauric acid from coconuts) which is a powerful natural antimicrobial

 

other natural antimicrobials include olive leaf extract, oregano oil, garlic and honey

 

 

That is interesting that Dr Murphy's assistant said they believe PANDAS continues into adulthood!

[michele]

If taking Monolaurin do you still need a probiotic while on antibiotics longterm? Coremega is what Dr. Murphy reccomended to us for Omega 3. I have heard symptoms can improve with age and immune and brain development. However I talked to a young adult who said she still gets symptoms although milder during menstration, and illness. I know our DAN said symptoms can last into adulthood. Hopefully they are milder and only during illness. Please send us a link to the article. Also, My friend really believes in homeopothy. She has been trying to get me to see hers for some time. Because we had seen the DAN I thought I'd stay the course. Let us know how it goes.

Michele

hi Rachel

 

the probiotics are intended to replenish the good biotics that occur naturally in the gut, and that the antibiotics kill off.

 

where omega 3 from fishoil or flaxseed etc is an essential element for healthy functioning, yet it doesnt fall into the same category as replenishing natural flora

 

 

on another thread I mentioned monolaurin (lauric acid from coconuts) which is a powerful natural antimicrobial

 

other natural antimicrobials include olive leaf extract, oregano oil, garlic and honey

 

 

That is interesting that Dr Murphy's assistant said they believe PANDAS continues into adulthood!

[emma1]

Regarding PANDAS and how long it lasts: I understand that some who get this "recover," that is some have symptoms for a while, but as time goes on, the symptoms become less and less until they are just gone. I have read accounts of this happening, and our doctor says he believes this to be the "usual" course. However, with others, the symptoms last longer and continue to be "severe" or "disruptive" for quite a while (though my doctor contends that he does not believe even this will be life long). So, I am surprised by this life-long information. I was told that the further away you get from the strep event that caused this (without having additional strep infections), the more the symptoms will diminish. Has anyone else been told this?

 

Regarding Monolaurin: Hmmmmmm! Chemar, do you think that this could be used long term as opposed to antibiotics? I actually read about someone using Monolaurin to keep away some other type of bacteria infection (staph perhaps?).

[LisaM]

I've also heard from a D.O. about using Propolis as a natural antibiotic but don't know much about how to use it, doses, long term etc.

 

Has anyone else heard of it?

 

Rachel, let us know what the M.D./homeopath says.

 

 

http://altmedicine.about.com/cs/herbsvitam...ee_propolis.htm

[P_Mom]

Hi!

Obviously the remark about PANDAS carried into adulthood has raised a lot of eyebrows, especially in us PANDAS Moms. I have heard the opposite about PANDAS. I e-mailed Dr. Murphy for clarification regarding this.... this was her reply....

 

 

Kelly,

 

I think the long term course is highly variable. I have many that have

almost remitted or completely remitted--especially with OCD or tics

however--they are more likely to have longer term ADHD issues. I am

guessing about 1/3 remits, 1/3 does better, and 1/3 still has longer

term problems. It does seem that with some children, as their immune

system matures and infection rates decrease, that symptoms improve. I

think addressing the symptoms early in the course allows for a more

favorable prognosis. Sometimes OCD becomes more fixed because of the

family's adaptation to it although the trigger for OCD is biological.

This is where CBT is very useful in improving the long term prognosis.

 

We do see 'PANDAS' flare ups in adulthood or new onset as adults. These

are likely due to those individuals with lower strep exposure in

childhood.

 

I hope this helps but I would say you have plenty of reason to stay

hopeful.

 

Best,

 

 

 

Tanya Murphy, M.D.

Chief, Child and Adolescent Psychiatry

Associate Professor, Dept. of Psychiatry

[P_Mom]

Please note Dr. Murphy's wording in this e-mail. " I am GUESSING....... I THINK........"

Remember, PANDAS was just recognized in 1998 by Susan Swedo at NIMH. I do not believe anyone knows yet EXACTLY what happens into adulthood, the kids who were in the study are only in teens and early 20's, and I was told by NIMH that MOST of them are well today and that the PANDAS episodes "aren't happening", but that the parents are "on top of things." I would be learly of anyone saying they know for sure what happens, be it one way or the other. I believe this e-mail from Dr. Murphy says it best, it is very variable, and the outcome can be one way or the other, they simply do not know for sure.

[emma1]

Kelly, Thank you so very much for contacting Dr. Murphy regarding this. Although her answer was not definitive, I think it does give us all hope that our child could be in the 1/3 that remits (or at least the group that does better!).

 

I know I feel very guilty because I never realized my daughter had strep when she had it. I saw this explosion of tics/ocd, and didn't make the connection until months later. I will always wonder if I had caught the strep infection immediately at the time she first had it, and treated it immediately, could have saved her from all of this.

[michele]

Emma, Don't feel guilty. We were seeing Dr's for PANDAS episodes for many years and they never even mentioned to give antibiotics during flare ups or swab his throat. I just knew he would get sick and have strange behaviors. He rarely got the sore throat after the initial strep infection. Even knowing what we were dealing with we were given no treatment plan. It was a watch and see if he outgrows it or it gets worse. I think you have done a great job from the initial episode getting the right information and being proactive on her treatment.

It is interesting that they are researching using omniseph for pandas. I've got to say it works better then the rest for us.

 

Thanks for checking with Dr. Murphy. It is great she reads and responds to them. Did you say you have an appointment with her soon? I hope we will continue to get information from her via people's appointments. She does answer questions well. So whoever is next to see her bring your list. Maybe Dr. Murphy will write he PANDAS book.

 

Michele

Kelly, Thank you so very much for contacting Dr. Murphy regarding this. Although her answer was not definitive, I think it does give us all hope that our child could be in the 1/3 that remits (or at least the group that does better!).

 

I know I feel very guilty because I never realized my daughter had strep when she had it. I saw this explosion of tics/ocd, and didn't make the connection until months later. I will always wonder if I had caught the strep infection immediately at the time she first had it, and treated it immediately, could have saved her from all of this.