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DanL

Looking for success stories

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Hello

New to the forum and this PANDAS.

 

 

Please describe your experience. When symptoms started, what were the symptoms, time of Dx and treatment used.

 

thanks

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you may want to do a search of this forum. there were numerous histories posted. such search will give you good idea how diverse and different pandas/pans can be, but also how similar some cases are.

good luck

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Many of the success stories are titled with the word "update" in them. So, when you search, use that word or even "success" as your search terms.

 

We are in a much better place, but not a success story yet. If we can ever get kiddo to speak again AND in a normal voice, I would consider us almost there :D. Right now, kiddo is not speaking at all (learning sign language and writing requests), and when she was speaking post PANDAS, she was whispering.

Edited by mayzoo

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Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs.

 

As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences.

 

My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12.

 

At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily.

 

When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention.

 

DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it.

 

He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time.

 

I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!

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We have a success story:

 

In our case, our 13 year old daughter's lyme/bartonella infections were the cause of her PANS/PANDAS symptoms. The Tourette's and minor OCD symptoms were mostly the result of die-off toxins produced by bartonella, and we saw flares in these symptoms with abx treatment. For her, toxin build-up (especially bartonella toxins and yeast/mold toxins) lead to motor/vocal ticcing. Detoxing (oral magnesium citrate, Epsom salt baths, frequent lemon juice/stevia in water, soluble fiber supplementation, vitamin c to bowel tolerance), and the use of anti-inflammatories (Japanese knotweed, curcumin) decreased the flares.

We have found most of the improvement in her Asperger's symptoms (behavioural regression, cognitive/executive function impairment) resulted from herbal treatment for protozoan infection, although she tested negative for the babesias through Igenex. I initially observed a good response to malarone, but the response to Buhner’s herbal combination for babesia (cryptolepis/sida/alchornea) has been far more impressive.


Our pediatric psychologist had initially diagnosed our daughter with Tourette's, Aspergers, ADHD, motor delay and then PANDAS (Pediatric Autoimmune Neurological Disease Associated with Strep) because her symptoms would escalate during strep infections, while our LLMD diagnosed her with PANS (Pediatric Autoimmune Neurological Syndrome) which is essentially the same symptomology but is caused by other types of infection, in our case bartonella.

 

There is a long list of symptoms associated with PANS/PANDAS and our daughter had every one of them. More information can be found here:

http://pandasnetwork.org/pans/

We never did do the PEX (plasma exchange) or IVIG (intravenous immunoglobulin) treatments suggested on the above site. We are Canadian and IVIG is not available here except for severely compromised individuals, and our daughter was still functioning well enough to attend school (although with an IEP and EA and many considerations). We did not have the money to attempt treatment out-of-pocket in the US (other than with abx prescribed by a LLMD).

Fortunately our LLMD was a good one who assured me that the PANS symptoms would resolve with treatment and they have. They have actually improved considerably more with herbal treatments then they did with abx.

A recent trip back to the pediatric psychologist was a great one. She was flabbergasted that her previous diagnoses of Asperger's, Tourette's and motor delay were no longer applicable.

We remain on the low-dose herbal protocols for bartonella and babesia and I am still trying to increase herbal dosages to address protozoa.

Bartonella is a very common cause of neurological/psychological symptoms, and although most doctors don't realize this fact many veterinarians do.

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

After everything we have been though I feel that symptomatic disease has little to do with the presence of infective organisms and much more to do with the competence of the immune system which is impacted greatly by toxin load (pesticides, heavy metal vaccination adjuvants), and the body's ability to excrete those toxins.

http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx

http://www.ageofautism.com/2014/04/pesticides-and-the-age-of-polio.html

http://www.mdpi.com/1099-4300/15/4/1416

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

We are being poisoned by pesticides and the ever increasing amounts of glyphosate poured onto GMO foods.
Pesticides preferentially destroy good gut bacteria resulting in overgrowth of pathogenic species and the development of leaky gut. This allows foreign proteins to escape into the blood stream, resulting in autoimmune and allergic conditions.

 

Our children are being impacted by the adjuvants in the 70+ vaccinations now required.

 

Something has to give and it is our immune competence and our health.

We try to eat non-GMO and organic as much as possible (conventional grains and legumes are sprayed both during growth to address pests and before harvest to facilitate desiccation - if it doesn't say ORGANIC it isn't), and I have taken out vaccination exemptions for both of our children (our 18 year old is neurotypical and asymptomatic). We use wired phones and computers to further decrease electrical stressors; after all, our nervous systems and hearts function through changes in electrical potential.


DD's timeline and more specific symptomology is listed in my signature.

Edited by rowingmom

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Ditto Rowing Mom's story times 3 children.

 

Gestational Lyme, Bartonella, Babesia, 1child 'FL 1953', mold, viruses, etc for all our children. One considered ASD, one considered Aspergers, one sudden on-set of PANS at 5. The twins regressed after MMR at 18 months. Older son regressed after MMR at 5, a strep related illness and exposure to virus in three week period.... suddenly a different child.

 

All of them 'almost' fully recovered. No OCD, no ASD/Asperger's diagnoses, etc. 4 years of treatment. We are still detoxing mold for all three (one almost done) and trying normalize IgG levels in one child with monthly LD IVIG.

 

Interestingly the child that has always done the best with treatment had IVIG for Kawasaki's diagnoses just prior to MMR vaccine. We just had our first soccer game last week and we are thrilled older son was able to keep up on the field with his peers (he had stamina issues probably from mold). Huge difference year, over year in their recovery process.

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