searching_for_help

Yes, my dd has yeast and clostridia (NOT diff.) issues. Honestly, with all the processed foods, abx, even things like Splenda affecting good gut bacteria, I doubt if there are many Americans with "good guts". We treat with Nystatin and probiotics. We use several different probiotics. Culturelle and Jarrow's Sacch. Boulardii for the clostridia. Higher amounts with more strains for the other issues. Since she is currently on an abx for mycoP, I space it out so the abx doesn't kill the probiotic. For instance, I'll give her the second dose of abx around 7 pm, and give her a probiotic around 10 pm, in hopes that the probiotic will be helping replenish during the night. IF she didn't have restrictive eating issues, I'd make Kefir shakes and add other fermented foods in, but she won't eat them anymore. She used to drink Kefir shakes - with organic yogurt, Kefir (strawberry or pomegrate flavored), banana, frozen strawberries, a bit of stevia to sweeten it and the ice. Throw it all in a blender, and it's very yummy. Do the probiotics do any good? Beats me... but I figure it's worth a try. We haven't retested to see if it is helping. So many test... so little money left!

Yasko offers some tests on her site: http://www.holisticheal.com/health-tests/all-health-tests Dr. Nancy Mullen is connected with Yasko. We have not worked personally worked with her. This is her website: http://nancymullanmd.com/about/ Yasko's book explaining her program is available for free here: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html Notice it says you can download it for free under where it says it's out of stock. It's a LOT of information... Has your son been tested for various infections? (Strep, mycoP, EBV, Lyme, yeast, other gut issues, etc.) If I understand correctly, it's the infections that can cause the gene snps to over or under express. (Not sure I said that right.) Might be faster to treat the infection while "fine tuning" the snps. (Anyone else have ideas about this? - Don't want to lead anyone in the wrong direction...)

Found this great research on Cannaboid oil, that answered one of my concerns. I had heard a doctor say that those with high dopamine could become psychotic when using marijuana. (I realize the THC is taken out of the CBD oil, but I didn't know what exactly about marijuana was causing the problem.) My dd has high dopamine. Although this research is specifically about schizophrenia, it's the anti-anxiety part to help with OCD that I'm interested in. It says that it is the THC (that is NOT in CBD oil) that causes the problems. Here's a quote: "The remaining 20 patients were given CBD, a substance found in marijuana that is considered responsible for the mellowing or anxiety-reducing effects. Unlike the main ingredient in marijuana, THC, which can trigger psychotic episodes and worsen schizophrenia, CBD has antipsychotic effects, according to prior research in both animals and humans." This is the link:http://psychcentral.com/news/2012/06/07/marijuana-compound-may-beat-antipsychotics-at-treating-schizophrenia/39803.html This sounds awesome - help without the side affects! Sadly, one of the last paragraphs sums up what is wrong with healthcare. Since CBD is a natural compound, it can't be patented - so the drug companies won't invest any research into it. "Researchers are working to develop synthetic versions..." They sure invest in trying to convince people that "natural" alternatives don't work, while trying to make synthetic versions they can make a fortune on!

Yeah, it's a major puzzle. Might want to look into an H. Pylori test as well. Our dd has it with no usual stomach symptoms. It can cause brain fog and a host of other problems, due to it causing nutritional deficiencies. I posted a while back about a teen boy who developed all kinds of neuropsych problems and physical things that went away after being treated for H. pylori and also B12 injections for the deficiency it caused. That being said, our dd is being treated for h. pylori and we aren't seeing any improvement YET, but her symptoms are more OCD, etc. And don't forget about the rest of the gut. Yeast overgrowth or bacterial infections there cause nutritional deficiencies as well. That can affect us both mentally and physically. Do you have a doc willing to do some testing? Might be cheaper than going the PEX, IVIG route. They work great for some people, but the $15,000 IVIG did nothing for our dd, although her symptoms are different. I'd look into stomach, gut, nutritional deficiencies and Lyme. Curious about the scalp pain. Others have mentioned that. Seems like Lyme usually gets brought up.

Most psychiatrists are not going to be helpful. I say "most", because a few are seeing what they've been taught is baloney. A few are beginning to see that all of these mental conditions are caused by something going wrong in the body that needs to be fixed. If you read enough about so-called "mental illness", you'll see that they are caused by infections, inflammation, deficiencies, etc. that need to be treated. Psychiatrists aren't trained that way. Most are still under the idea that you can be "talked" out of your problems, OR, more currently, that a pill is going to make it all better. Sometimes those pills help some, but they aren't getting to the underlying issue. Those SSRI's might bounce some serotonin around for a while, but they don't help you make more. What's ridiculous is most (none that I've heard of) even TEST your neurotransmitters FIRST to see what you need! Our dd has been handed SSRI's for YEARS and when we finally get her tested through a doc (MY request), her serotonin was unbelievably high - probably causing more harm than good. I'm not saying that some of the scripts they pass out aren't helpful for some. Some can help decrease anxiety to get them to a point they can work on things themselves. (OCD, etc.) But what I find ridiculous (from our experience) is that they try different pills without doing ANY medical workup at all - basically, you are a guinea pig. (Oooops, no, that one caused a BAD reaction so we'll try this one...) Good grief. How many people have committed suicide due to trying another pill that they didn't react to well? Is that "science-based" medicine? Dr. Walsh's "Nutrient Power" is a good book showing how many of our mental illnesses are caused by deficiencies. Think about it. Those deficiencies aren't always caused by genetics, you can easily become deficient from good gut bacteria being destroyed by abx, malabsorption in the stomach from GERD drugs, etc. (I realize we need the abx to treat the infections, but then we need to heal the gut, where our vitamins and nutrients are utilized, for our whole body, as well as our minds.) We know from PANDAS/PANS that an infection can be the root of the trouble. Infection/inflammation is a biggy in causing problems with the mind. Sorry, another rant. I'm so exhausted from the wasted time and dollars to psychiatrists, therapists, etc...

Ditto, dasu! We kept a port-a-pot in the back of the van or we couldn't leave the house. It also came in handy on a vacation. An accident occurred on a major interstate and traffic didn't move for FOUR HOURS. We were so very glad to have it then, for all of our sakes!

I'm curious about that as well. Our dd's first noticeable sign was an overnight sudden-onset bladder frequency and incontinency. Took her to a ridiculous number of "specialists", and they couldn't find anything wrong. She had that problems for years. It still gets bad when she's extra stressed, and she still frequently wakes in the night to use that bathroom. We've noticed that in high stress situations, our son has frequency issues as well.

I was so excited that something was hopeful for OCD treatment that I didn't let you know how happy I am for you all! I so hope he continues to improve.

PLEASE keep us updated. My husband would kill me if I ordered another product that didn't work!

My dd had high dopamine on a neurotransmitter test. I'm not clear on exactly what D1 and D2 are. Is that the same thing as high dopamine, or something else? Found a pdf that might interest some of you. "Inhibition of dopamine conversion to norepinephrine by Clostidia metabolites appears to be a (the) major cause of autism, schizophrenia, and other neuropsychiatric disorders..." It's by William Shaw, Ph.D of The Great Plains Lab. It discusses HPHPA, elevated dopamine, clostridia, etc. I know our dd has high dopamine and low norepinephrine. Treating for clostridia, but just found out she has H. pylori as well. Actually, she ends up having most everything we test for. Ugh... http://www.greatplainslaboratory.com/home/eng/articles/Interference%20in%20dopamine%20conversion%20to%20norepinephrine%20FINAL.pdf

Although my dd has no stomach upset unless she is sick, I requested a H. Pylori test and it was positive. (I requested this after reading about H.Pylori causing psychiatric issues.) Like many of you, she tends to test positive for all kinds of stuff, although is asymptomatic physically and suffers mentally. I'm guessing the H. Pylori and other gut issues are causing her autoimmune issues and food sensitivities. My questions would be - have any of you treated for H.Pylori and seen diminishment of intrusive thoughts or OCD? (She has multiple other problems, but just wondering if anyone had seen progress with H. Pylori treatment.) Should the whole family be tested? I've had IBS my whole life, and a "pre-ulcer" when I was in my 20's, but no one tested me for anything. Now I'm wondering if it was actually H. Pylori.

We had the same thing happen with our dd. She's the one that definitely needed the testing, and the only one they couldn't get results from (although I had to send my own in twice.) We finally just spent the extra money and went through Yasko. It's done with blood, and was about $500. Yasko has a lot of helpful information, BUT she only tests for certain snps and I wanted ALL the raw data that 23andme has. But it least we have enough to work on her methylation cycle. I know how frustrating all that waiting is!

Has anyone ever tested you for H. Pylori?

Sorry, I'm not up on your history. Have you ruled out the main infectious triggers with testing? (Many of these kids don't show the typical symptoms, so docs should test and not assume!) Has the gut been tested for signs of yeast or clostridia overgrowth? I guess I'm just wondering what all your doc has ruled out from actual testing!

Ohh, this neurotransmitter stuff is difficult. There's so much more to it than I ever dreamed. Our dd has "extra"cellular serotonin - LOTS of it. Yet she has all the symptoms of LOW serotonin. And a MAO++ snp - so maybe she's not breaking it down. It's absolutely insane trying to figure this out. There are receptors, but not just ONE, there are LOTS of different types. She's very high in dopamine, but low in norepinephrine, yet dopamine is the step BEFORE norepinephrine, so increasing the norepinephrine is tricky. (But clostridia can cause that, also lack of vitamin C and copper...) WAY to hard to figure out. I'm not sure the "experts" have a good grasp on this. I even started dd on Inositol - read it can help the receptors in some way (can't remember exactly now), but after several days, she became very agitated. This is so very complicated. One thing to keep in mind though, is the gut brain connection. Our body is run by what happens in our gut. Amino acids - they are SO important concerning neurotransmitters. (I know our dd is low on many amino acids...) If out digestive system is not doing its job, we're going to have deficiencies that affect our brain. If your kids are on PPI's or other things that can lower stomach acids, or abx and not using probiotics - you can BET they are going to end up with vitamin/nutritional deficiencies, which are directly related to our neurotransmitters. But how to keep that all balanced? Then there are all the "co-factors" when dealing with neurotransmitters - B6(P5P), copper, vit. C, etc, etc. I know if you're low in B12 it can affect serotonin. Etc., etc. Point is - the gut working, and getting correct nutrition, is very important. Are there any others out there who have VDR Fok? Our dd pancreatic enzymes aren't doing there job, and I wonder how much that is contributing to our problems. We do use digestive enzymes, but not seeing any great improvement. I would LOVE to see Dr. Greenblatt, and have him try and figure this all out. But we're just not up for that kind of drive. Hope it works out for you, and you're able to see some success.

James Greenblatt? I would love to see him. He gets the whole gut-brain connection. He has lots of interesting webinars on The Great Plain Laboratory website. Or is this a different Dr. Greenblatt?

I am so sorry and wish I had answers for you. Our experience with IVIG was not successful, but I'm sure others will chime in on their experiences. It does seem like some get worse before they get better, and maybe that is what is happening. All I can give you are cyber hugs and just know we are thinking of you and your mom. Hopefully the doc will get the test results back soon and will know what direction to take your treatment.

I'm not sure if she's still on the Prilosec, but if so, make sure she's getting some magnesium. Here's a quick read by a pharmacist about PPI's and acid reflux drugs and how they can cause deficiencies: http://www.dearpharmacist.com/2011/03/28/dangerous-drug-mugging-effect-by-acid-blockers/ Absolutely drives me crazy that docs pass these out like candy, but I've never heard one mention the problems they can cause. Most health care workers generally don't seem to understand how the body functions (in my opinion), especially the gut, where all of our vitamins and nutrients are absorbed and used throughout out bodies. I don't have time to look it up right now, but I've read recently that research is finding that many times the people that have symptoms of high acid in the gut, when tested, actually have LOW acid. Imagine the deficiencies happening when they have low acid to begin with, and add a drug to that. Ugh...

I think this article is important to consider, as well. If I were to do it all over again, I'd definitely skip the Tylenol. BTW - there are other articles online associating Tylenol use with asthma. Evidence that Increased Acetaminophen use in Genetically Vulnerable Children Appears to be a Major Cause of the Epidemics of Autism, Attention Deficit with Hyperactivity, and Asthma By William Shaw, Ph.D. http://www.greatplainslaboratory.com/home/eng/Acetaminophen.asp

I just ran across this site, and don't know if it would be helpful or not. I believe these articles are more about the dangers of vaccines in general. http://www.vaccinationcouncil.org/category/webinar/ My kids were fully vaccinated (before PANDAS diagnosis), but my dd will definitely NOT be getting the Gardasil, FluMist, or probably any of the flu vaccines. Honestly, the more I read the more uncomfortable I am. I know that most doctors don't report to VAERS, even when the parents request it. We have had a pediatrician tell us that he thinks the schedule should be changed - not giving so many vaccines to babies, not so early, and not multiple vaccines at once. Yet they know they can't say anything publicly or it will hurt their reputations. Sad state of affairs, really. Everyone terrified to be labeled an "anti-vaxxer", so we just can't even question the safety. I'm not anti-vaccine, but anytime you aren't "allowed" to raise questions without people labeling you as a nut - I'm guessing something seems a bit fishy. If I had to do it over again, I'd just make sure they were given later than the schedule. And not several at once. I just don't see the need in that. I read repeatedly that the baby is covered by the mother's immunity for, I think, 6 months or longer. And if that's true, then why are they jabbing the poor little things before they leave the hospital?

Just picked up the April issue of Psychology Today. Pg. 40 "The Psychobiotic Revolution". "It may be possible to relieve anxiety and depression solely by manipulating bacteria in the gut." "Recently, he coined a term for the live organisms in the gut that are psychoactive and of potential benefit to those suffering from a variety of psychiatric illnesses - psychobiotics." (Yeah, they are just probiotics...) Some interesting info: A cocktail of Lactobacillus helveticus and Bifidobacterium longum was found to reduce cortisol levels and curb inflammation. Gut microbes that actively secrete GABA are Lactobacillus and Bifidobacterium. (Lack of GABA in the brain may bring on the negative ruminations long linked with depression.) Bifidobacterium infantis as a probiotic alters levels of serotonin - just like Prozac. Lactobacillus reuteri, delivered in either yogurt or supplement form, improves mood, appearance, and general health by increasing levels of oxytocin. B. infantis, L. reuteri and several other strains work throughout the immune system by attacking inflammation, a hallmark of depression. Lactobacillus rhamnosus reduces anxiety and depression and beefs up production of GABA receptors. B. infantis and L. reuteri work on the immune system, where they suppress proinflammatory cytokines. HERE's what makes me aggravated about this article. Instead of encouraging probiotic use NOW, they talk about these "therapeutic psychobiotics being a long way from reaching the market", but that you can still eat yogurt and fermented foods. They say that most probiotics don't make it past our stomach acid - but this article is from Psychology Today, so I'm sure it's not "Pharmaceutically Correct" to push anything that is already out there on the market. Sorry, but I'm fully aware that most research is paid for by the pharmaceutical companies, and they want to get their money grubbing paws on this. All of the microbes listed are in probiotics I have here in my refrigerator, and some of them are specifically made to get to the gut. That rant being said, I'm just glad that psychiatry is starting to see the light of day! Finally realizing that the brain is actually attached to our bodies, and affected by them! Hoorah! Since I pretty much typed out the whole article, I guess I should give the author credit! Thank you, Jordan Davidson.

This article has some good info on restless leg syndrome, and mentions tyrosine: http://www.dearpharmacist.com/2012/12/04/non-drug-solutions-for-restless-legs-syndrome/

I don't know if this will give you any new ideas are not, but this is some info from a pharmacist on different things that can cause migraines. Hope it helps. http://www.dearpharmacist.com/2013/06/27/finding-the-cause-of-migraine-headaches/

My ds is the one who hasn't been tested yet. My dd HPHPA was 334. The Interpretation on the test said that neuropsych effects are common when values exceed 500 mmol/mol creatinine. But she has several tests that say they are off and the cause can be due to clostridia (not diff.) Too many point to clostridia, so we're treating for that. Vancomycen hasn't been mentioned by our nurse practitioner. I was going to mention Flagyl at the next appt. But guess I should ask about Vancomycen also?

Which "genetic deletions" would make you more prone to viruses?