jstone

Has anyone had success treating PANDAS and/or active strep infections with natural medicine. More specifically, what natural methods have you used or have knowledge of that act as an effective antibiotic against strep. Thanks in advance!

Hello. I am relatively new to the forum. I appreciate all of the incredible information on this forum. My wife and I focus primarily on alternative and natural approaches for our son's healing needs. Learning from others who share the same philosophy and experiences is so very helpful. Can you recommend any fellow forum members who have a reputation of being experts (aka gurus) in alternative/natural medicine? Any help and suggestions would be so greatly appreciated. Health and Hope!

Stephanie2, thanks for your response. Ironically we have been using homeopathy for over 3 years to treat our son's ASD with very little tangible results, but still want to try to stick with other natural approaches as long as possible. We are open to any possibilities and I will follow up with Lemke. Since she seems to target PANDAS it might be more productive than the other homeopathic route we have pursued. Thanks!

Thanks junkyardjean. I will look into Rondeau.

Hello friends. Can someone recommend a doctor (MD/DO) or naturopath that is known for successfully treating and/or having a deep understanding and level of experience using natural methods to treat Strep? Looking for the best nationally. Thanks,

Darla, I have been traveling alot the past two months so I am really late to this post topic. If you still need advice, please let me know as I have alot of experience with SCD. Jstone

I am a little late to this post, but it is a great topic and one that I have heard over and over in other circles I am involved in locally. Chemar is on to something in that the natural food based probiotics are probably the best for a variety of reasons. We have given our son both home made fermented veggies and young green coconut kefir and both caused severe die off symptoms or what we suspect were die off symptoms. On one hand, this is tough b/c our son seemed to have suffered, but on the other hand the symptoms probably mean that the probiotics are doing their job and working to re-establish themselves in the GI tract and duking it out with the bad microflora. In my personal opinion, the Body Ecology Diet and its related passages and products relative to fermented foods is a great resource for this topic. Donna Gates is the author. It is worth checking out. Our son is on the BED diet and has made remarkable strides toward normalizing his gut issues. Good luck !

Sahm, You've come to the right place. See the following thread by Chemar http://www.latitudes.org/forums/index.php?showtopic=687 Also, I suggest you check out Sheila's book Natural Treatments for Tics and Tourette's: A Patient and Family Guide. I hope this helps you.

Thank you Cheri. What you are saying about Tics vs. Stims does make sense. I think I generalized in my conclusion and that wasn’t accurate on my part. You confirmed something I did not know, which is that true TS is a genetic condition. From reading Shiela’s Natural Treatments book, I was convinced that it was a combination of probable underlying genetic conditions with environmental triggers. I will follow up with peglem. It does seems like some of my son's stims are not tied to a specific trigger.

Thank you Cheri. It is amazing how similar certain components of Autism are to TS and the other tic/OCD conditions I read about on ACN. Like TS and the other conditions, Autism is really only the name of the presenting symptoms that have an underlying physiological cause. Our son also has sensory integration issues and has sensory integarative therapy for that reason, which has helped alot. The therapy, in our opinion, hasn't helped near as much as the intervention we have pursued to treat the physiogical issues, but still, we combine them for what we hope is a more integrative approach. His stims, or what I may need to start calling tics, are almost always triggered by a series of specific stimuli. Someone please tell me if I am wrong to be calling stims, tics.

Our son was diagnosed with Autism Spectrum Disorder over 2 years ago. We suspect and should have diagnostic confirmation soon, that our son is PANDAS because he has OCD behavior that seems to 'flare up'. He also has what we call 'stims', which seems to be a terms used more in the Autism world. For my clarification - Are stims (stimulory response to certain sensory triggers) the same as tics?

Does anyone have a link to any research or other explanation of how or why NAC works ? What aspect of PANDAS does it help with?

I feel like a first grader sitting in a college class given that I am new to all of this and keep having questions that have probably been covered so I apologize in advance. My wife and I recently received the PANDAS diagnosis for our 4 year old son. We are working toward understanding the treatment options, but it's clear that Abx is a primary route for treatment and it can include some long term use of Abx. Can Strep A develop a resistence to these Abx over time? I am not questioning the use of Abx just curious if this is a concern for treating PANDAS and how it is addressed. My guess is that the Abx's are alternated or rotated in some way to avoid the resistence issue. Any feedback would be great. Thanks!

I have seen a couple of posts where kids seem to have both Celiac and PANDAS. Forgive me if this has already been covered since I am new to the forum, but can someone explain if there is an established link/relationship between the two conditions or if this is just a coincidence? Thank you!

Yes, our Dan! suspects PANDAS. I am working to get in to see Dr. K to get his expert diagnosis.

Hello all. Part I: Our 4 year old son has strep flare ups (we suspect) that cause certain intense obsessions. One main obsession is going around the house and turning on all of the lights. Have any of you experienced the same obsession. Part II: Also, our son Sneezes a lot throughout the day. It’s the first sound we hear in the morning when he wakes up and he has approximately 20 subsequent sneezing fits throughout the day. Also, the sneezing seems particularly prompted by bright lights, but lights don’t appear to be the singular cause. Have any of you experienced this excessive sneezing? Thanks!

SF Mom, So it seems to be the minority of the cases and unless you disagree, I assume that if Staph was somehow more involved with PANDAS or other OCD / tic related disorders that Swedo et al would have already studied it and addressed that. One consideration is that if the immune system of our kids is compromised, it probably means that any micro-organism has an easier time successfully attacking our kids' bodies. I am sure an immunologist could explain why Strep and its antibodies has been more successful cross reacting with the neurons in the brain. Thanks for your reply.

I apologize in advance for what I feel could be a very newbie question, but is anyone aware of any studies linking Staph related infections/autoimmue responses to PANDAS or OCD symptoms?

Airial95, Thank you so much for your response b/c until I read your post, I wasn't sure what form(s) impetigo took other than a rash. Did the pimples pop? Did you happen to have the pustule tested?

Sorry I am late responding. I just joined the forum recently. I recommend you and/or your family members get the book by Pam Marshalla called Becoming Verbal with Childhood Apraxia. We always look for a silver lining right? One silver lining that we learned after receiving our son's diagnosis of Apraxia/Dyspraxia (our son also has an Autism diagnosis) is that the Aprax/Dysprax diagnosis is a medical diagnosis and so you now have a position, which your pedi should be able to support in a letter, that any services your niece needs are medically necessary and therefore much easier to get covered by insurance. I wish you and your family the best of luck.

I suggest you call Autism Research Institute and ask. He spoke at the national DAN! Conference recently so he is definitely around. I think he is only semi retired. I hope that helps!

I have a call into our pedi as of this morning and will see if they can run a test. This spot on his skin is definitely a single pimple/pustule and is not a rash, so based on what we researched it does not appear to be impetigo. We will ask our pedi as well. It will be interesting to see if, as the infection goes away, his severe OCD behaviors also lessen. I really appreciate eveyone's responses.

Hello. I am relatively new to the group. First, thanks so much for all of the great information. We really feel we hit a sweet spot on this forum. Our 4 yr old son does not have an official PANDAS diagnosis, but based on his OCD behavior, medical history and some antibodies testing, he is a clear candidate. Anyway, some of his more severe OCD behavior comes and goes. We have been suspecting that those specific and more severe behaviors occur when he is having an active strep infection or going through some kind of strep clearing (we are doing some homeopathic treatments at present). When it is not so severe, well, who knows. Hopefully its some kind of healing, but I also know that those strep buggers can hide, go dormant, or the immune system is simply not doing its job because of autoimmune issues. Anyway, on this past Friday, the more severe OCD started. We noticed that he also was getting a large pimple looking growth on his tummy. It looked like a bite because it got so big, but today after his FIR Sauna, it grew a head. Well, we couldn't help ourselves, and we popped it. A large amount of puss came out (about a 1/2 Tsp). it was yellow and light brown. My question is in two parts: 1) could this be strep? and 2) we saved the puss on the kleenex and so does anyone know of a test we can do on the puss and do we freeze it or just keep it at room temp in the meantime?. BTW, the last time he had these severe OCD behaviors, he got a similar 'pimple' on his finger. Could the strep be manifesting itself through his skin. And if so, how does this relate to the strep that we all agree is infecting the PANDAS kids' basal ganglia or at least cross reacting with the good neorons from an antibody standpoint. Any feedback would be greatly appreciated!