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UNBELIEVABLE! Our 20 year old had IVIG over two days also. Total was a bit over $15,000 (for the hole shebang), but my hubby is a pharmacist and he said the actual drug acquisition was around $6,000. If we remember correctly, that was for 80-90g. total - but I can't swear to that. Would it be possible to find out EXACTLY what total dose and brand name they used? You can PM me with the info. I'm so disgusted with "health care". I'm beginning to think the only thing they care about is large profits.

Wow, that's surprising. Wonder why some labs and integrative docs aren't aware of this, since they are the ones suggesting using them? Once again, now I'm confused as to what path to take. We really need to control the clostridia while attacking the yeast... and the Sacc. Boul is used with culturelle to control the clostridia. Thanks for posting this. Good to be informed. Sure wish we had professionals helping us with this stuff...

I know! You are so right about all the "layers"... Exhausting trying to figure it all out. My biggest problem is I know the testing is important to give an idea of what to treat, but there are so many things to test for, and rarely does our insurance pay for it. Ugh... Hope you can get things back to normal, whatever that is. I'm not sure we've ever had "normal" with either child, but not really sure if there is such a thing as "normal"!

I don't know if this will help - maybe another parent on here has tried it. A week ago I started my son on Candisol and Yeast Away. Both I purchased through Amy Yasko's site, holisticheal.com. I don't know yet if it is making any difference, but we don't have a doctor for him to order tests or prescribe anything, and this is something I knew I could use on my own. If you can afford the testing, it would probably be better to know exactly what you're dealing with. For my dd, we are working on yeast and clostridia per Organic Acids Test. There may be better tests out there. We had a CSA a while back, and could see from that that she didn't have any good gut bacteria. Dr. Kurt Woeller said in a webinar that yeast and clostridia bacteria are living in somewhat competition in the digestive tract. "When you lower one, the other one if it is not being treated at the same time, can sometimes get worse." So in addition to the Candisol and Yeast Away, I'm giving my son Culturelle and Saccharomyces Boulardii from Jarrow. I know some parents on here have mentioned their kids don't do well with the Sacch. Boul, but it and Culturelle are used to treat Clostridia if your child has high HPHPA. Due to not having my son tested yet, I'm going ahead and treating him with the Culturelle and Sacch. Boul in addition to the Yeast Away, until we can find a doc to work with for him. Here's the webinar I referred to:http://www.autismrecoverytreatment.com/autism-treatment-%e2%80%93-clostridia-regression/

Is he on methylfolate for his MTHFR mutations? Our dd is hetereo for both, also. Due to my concern with her not utilizing her supplements due to a crappy gut, I supplement with a sublingual methylfolate/methylB12 combo through Methyl-Life, in addition to a methylfolate capsule. (Since I'm not sure how much she needs, I'm alternating 5mg and 10mg. The sublingual is low dose.) Everyone has different ideas on dosages. Her testing showed she's about in the correct range for that. We also have MAO+. Yasko suggests several things for that- we use Feverfew. Really couldn't tell you if it's helping or not. What is his VDR Taq status? Yasko suggests different things for COMT depending on the VDR Taq status. Our neurotransmitters can get really screwed up if we have gut problems, which can be caused by antibiotics (among other things.) I'm assuming he's been on abx for Lyme or PANDAS - is he taking probiotics? We tried different drugs from different classes to no avail. I had no idea how much the mind is connected with the gut. We had the Organic Oats Test run through Great Plains Lab, and our dd has yeast and clostridia overgrowth we are working on now, with specific probiotics and Nystatin and Diflucan. The interpretation on the lab test talked about how the elevated HPHPA (clostridia - not c. diff) could affect her neurotransmitters (she's very high in dopamine and low in epinephrine.) We have noticed her mood has been much better this past week. This is NOT to say her other problems are gone - but it's a step in the right direction. I'd also check B12 levels. It's amazing the wide variety of physical and mental health problems can be helped by B12.

Stephen Harrod Buhner has a book out called, "Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections". (Including coxsackie B virus.) Some of the herbs listed for Coxsackie are Chinese Skullcap, Licorice, Isatis, and Elder. He's also got a book out on Herbal Antibiotics. Oh, just to have time to read all this wonderful info...

My dd tested positive for strep on 4 different abx. No one could really explain it, and it was obvious they didn't want to deal with it anymore! She doesn't have the usual signs of strep - for my dd it's usually a little bit of nausea. She gets more anxiety and intrusive thoughts instead of all the physical stuff. I'm sure she did a week each of penicillin, Clindamycin, Amoxicillin and one other I can't remember... The nurse practitioner was so flustered she sent us to the hospital lab to have them swab her! We went ahead and did a T & A, hoping that would help stop the anxiety, etc., if strep was the culprit - but it didn't do anything but cause weeks of horrible pain. (She's 20, and it's MUCH harder on adults than kids!) BTW - when she was testing positive, she didn't have any drainage.

This article is about how researchers in a Danish study found that when a disc becomes herniated, bacteria can enter and cause an infection. Some patients have been successfully treated with abx. The article is specifically about chronic lower back pain and herniated discs, but I have to wonder if the same thing can't happen in weakened joints. Hmmm... http://www.dailymail.co.uk/health/article-1249524/Could-virus-caused-pain--And-simple-dose-antibiotics-cure-good.html

dsmom - We're using Culturelle and Saccaromyces Boulardii for the Clostridia - this was suggested in the interpretation of the OATS test. NP also has dd on other rotating probiotics for yeast markers, such as Prescript Assist (soil-based), UltaFlora 1B, etc. We use a different one every month (in addition to the Culturelle and Sacc. Boul.) Also Nystatin for 7 months, and we just started Diflucan for 1 month. The NP also has some herbals in the Candida Protocol that dd will use for 1 month each and then switch. Things like Candacid Forte, Capryllic acid, ADP and FC Cidal. Just getting started on all this. IF she improves, it will be hard to know what is helping, as she is on other stuff that she rotates for high IGG antibodies to mycoP and EBV, possible Lyme. Things like Viracid, Immucor, Transfer Factor Plasmyc, etc. - using 1 a month and switching to another. She's also on prophylactic Augmentin, which I hate because it's gonna kill all those probiotics - but I'm giving them to her far apart. (She's becomes extremely depressed without the abx...) I'm just amazed how many of our health problems can be tied directly to our guts.

Our nurse practitioner ordered the Organic Acids Test (OAT) from The Great Plains Laboratory. The lab gives an interpretation of the results, so your doc doesn't really have to do any research, although The Great Plains Lab has a site with webinars that go into detail about this stuff, and I think the extra info is very helpful. I think our nurse practitioner has spoken to docs at some of the labs, but not sure if it was specifically to this one. I'm not sure how I discovered this nurse practitioner - I may have been searching for integrative or functional medicine doctors. But she's interested in the "whole body" approach - finding the root cause of the problem and treating it. Yes, it is a urine test. It shows metabolic markers for Intestinal Microbial Overgrowth, Oxalate Metabolites, Glycolytic Cycle Metabolites, Krebs Cycle Metabolites, Neurotransmitter Metabolites, Folate metabolism, nutritional markers, amino acid metabolites and some others. The interpretation part is really interesting, our dd has high HPHPA markers and high HVA/VMA markers. So it sounds like the Clostridia is causing her high dopamine and low epinephrine. She also showed yeast, so we are treating for both and using different probiotics. BTW - she does NOT have diarrhea, she has always been extremely constipated, although the probiotics and/or magnesium citrate supplements are helping with that. BTW - Culturelle and Saccaromyces Boulardii (like Floraster or Jarrow has one) are both recommended to treat the clostridia. Dr. Greenblatt claims he's seen OCD symptoms diminish over time with treatment. We're just getting started, so I can't say yet, but the more I read, the more I'm very hopeful about this. Also the fact that our immune system and neurotransmitters are so closely related to gut activity - I'm really thinking "gut" is the key in ending this nightmare I'd be curious to hear from other parents who have had (or hadn't!) had success treating the gut. I posted the link for The Great Plains Lab, and a webinar about "Inflammation and Neuropsychiatric Illness" from Dr. Greenblatt yesterday evening. You might find that helpful. (Sorry I can't give you more right now, we are running out the door!)

I think it's important for parents to know that, unless Dr. K has changed in the last year or so, he does not do much testing to find out what is going on. He pushes the IVIG, and it simply is not helpful for everyone. We are finding after $15,000 for IVIG that was NOT helpful, our dd has gut issues (HPHPA markers high), which are probably causing her OCD, intrusive thoughts and anxiety. We are treating to bring down IGG mycoP titers as well, but I'm beginning to think the gut is the problem, and I wish we would have known that BEFORE the IVIG and trip to Chicago. (Treating a gut infection with probiotics and abx is much cheaper!) I know some of you have had tremendous results with IVIG, and I don't want to discourage anyone, but I would say to find a doc to check for these other problems BEFORE spending that kind of money. Even after we didn't have results from the IVIG, Dr. K was just pushing for another one. (Without ordering other testing...) Now we have a doc that has been willing to do other testing, and there are definitely other things going on in OUR situation.

Here is a webinar by Dr. Greenblatt. He talks about the HPHPA in it. Our dd has high HPHPA, high dopamine and low norepinephrine. We found out from the OATS test done through The Great Plains Laboratory. They have a great library of webinars: http://www.greatplainslaboratory.com/home/eng/recorded_webinars.asp

I just ran across MSG (monosodium glutamate) in an unexpected place. It's in the FluMist vaccine. This is from the CDC site, with a list of ingredients in the vaccines. http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-2.pdf

Interesting. My dd OATS test from The Great Plains Laboratory showed high HPHPA ((3-(3-hydroxyphenyl)-3-hydroxypropionic acid). The interpretation said it is "associated with behavioral, GI, and/or neuropsychiatric effects. It is an abnormal phenylalanine metabolite produced by GI bacteria of the Clostridia genus, including C. sporogenes, C. botulinum, C. caloritolerans, C. mangenoti, C. ghoni, C. bifermentans, C. difficile, and C. sordelli." (GI symptoms may include diarrhea or constipation.) So the interesting part: "In most cases, Clostridia overgrowth can be controlled by probiotics supplementation, with 30 billion cfu's/day or more of Lactobacillus rhamnosus GG (Culturelle) and/or at least 2-6 billion cfu's/day of Saccharomyces boulardii." So, with toaksmoms info, and this info, it leads me to think some OCD is caused by Clostridia. My daughter does not have the markers for C. Diff - but she does have the high markers for one or some of the other clostridia - and she has OCD and intrusive thoughts (among other things...) Once again, it looks like the gut is a major player.

3bmom - I'm sure a diet change would be helpful, but she is extremely rigid about what she eats - every calorie is counted (and I do mean EVERY calorie). Literally, she'll argue over a Zylitol packet with 2 calories... At this point she IS eating, (although I wish she'd eat enough to gain), but whenever I try and make changes to her meal plan, the anxiety around it all is so extreme (completely irrational) that I'm afraid she'll quit eating again. She's so tired from all of this - she has stopped eating from all the stress before, and we just can't go through that again. I'm convinced if we could somehow help her anxiety, she'd be able to make the changes she needs to on her own. She knows it's completely irrational, but the fear and anxiety she feels are horrible. I agree with you that the gut is a big issue - I think it's why there is such a big increase in autoimmune disorders. Just wish she was able to make those changes. We need a "bandaid" - something to lower the dopamine and lessen the anxiety - and then she can hopefully make the diet changes she needs for complete healing.

So I'm just now becoming aware of high dopamine playing a part in PANDAS. My dd has shown high dopamine on 2 separate tests. (She has PANDAS, OCD, anorexia, extreme anxiety and intrusive thoughts) The Great Plains Lab showed high HVA/VMA ratio, and explained that: "the most common reason for an elevation of the HVA/VMA ratio is the decreased conversion of dopamine to norepinephrine and epinephrine. (She's high in dopamine and low in norepinephrine.)The enzyme responsible for this conversion, dopamine betahydoxylase, is copper and vitamin C dependent, so an elevated ratio could be due to deficiencies of these cofactors. (She is deficient in copper and Vitamin C, and showed high in zinc on a hair test- yeah, weird for an anorexic to be high in zinc!.) Another common factor is inhibition of this enzyme by Clostidia byproducts. A high HPHPA, 4-Cresol, or other elevations of metabolites would be consistent with the latter explanation." (She's high in HPHPA - marker for clostridia overgrowth.) Under the HPHPA, the lab said that high levels are associated with behavioral, GI and/or neuropsychiatric effects, and that Clostridia overgrowth can be controlled by probiotics supplemention - specifically Culturelle and Saccharomyces boulardii. So, we are already supplementing for the copper/vit. C, and she has been taking Culturelle, Sach. Boul, and other probiotics for a while. Not seeing any improvement. We are also treating with Nystatin and Doxycycline for mycoP and yeast. So my question is, the anxiety is so awful and we're all so tired. I think we need a bandaid for the high dopamine until we can get everything else working correctly. I'd prefer herbal, but am willing to try anything. Has anyone had any luck trying to bring down dopamine? And if so, what has helped? Has anyone had experience with Wellbutrin? Also saw that Magnolia Bark might be of help. Her anxiety has been extreme for many years, and the intrusive thoughts never let up. Any ideas would be appreciated.

Our daughter tested positive for strep on 4 different antibiotics. The nurse practitioner was baffled, and didn't seem to want to deal with us after that! I never could get a clear answer from anyone whether she is a carrier, or just not clearing it. The docs/NP's we've dealt with really didn't seem to know that much about it. It's frustrating!

Metanx is a prescription medical food that combines methlyfolate, P5P (B6) and methylcobalamin (B12), all in the bioavailable form. From Wikipedia: Metanx contains the following active ingredients (per capsule): ##L-methylfolate (Metafolin): 3 mg. ##Pyridoxal 5'-phosphate: 35 mg. ##Methylcobalamin: 2 mg. My hubby takes the generic "Foltanx" - NOT to be confused with Foltx - which is the cheap folic acid, B6 and B12. Also, another option, especially for those with problems with absorption, is Methyl Life's B-Methylated II, which has the methylfolate and methylcobalamin (bioavailable B12) and it is sublingual, to go directly into the bloodstream.

I know nothing about Rogers, so can't comment on that. Just wanted to reiterate our nightmare experience. Alexian said they treated eating disorders, OCD and I requested testing for PANDAS. Oh, yeah, they said they did it all! I was so hopeful and thankful and literally sobbed when I heard they could help us. Long story short - the OCD unit is a separate unit (not available to the ED patients), and the eating disorder unit doesn't believe in PANDAS. There was a little boy there that was not afraid to eat - he was afraid of vomiting. My daughter mentioned to him that his family might want to look into PANDAS - and she got chastised by the staff for mentioning PANDAS and giving him false hope! She lost weight the few days she was there, and we pulled her out. They didn't seem concerned if she ate at all, so she didn't until I called and told her she'd be there longer if she didn't. We were flat-out lied to about their treatment facility. I wouldn't go anywhere unless they agreed to test/treat for PANDAS WHILE they are helping with refeeding. Like I said, I know NOTHING about Rogers - they might be great - but I just want to warn you about what some of the places are like. I had asked all the right questions - I just got lied to.

My daughter and I fit the "high histamine" symptoms perfectly, but neither one of us benefit from antihistamines, and we've tried them all. I even ordered the DAOSin, which is supposed to be really good, but it didn't do anything for me. Personally, I think the problem is the leaky gut causing food and other allergies, and then our bodies react to everything. Our daughter had the food allergen testing done, and it seemed strange to me that almost all of the foods she's mildly intolerant to are almost all of the foods she eats! (No, not just dairy or gluten... it was the foods she often eats like bananas, lettuce, mushrooms and coffee!) Then I read an article saying those tests have unacceptable high rates of false positives. Personally, I think our kids have leaky guts (thus autoimmunity) and anything that leaks out (including food) is looked upon as the enemy. That would explain why my dd is somewhat intolerant to most everything she eats. I think we need to treat the gut issues (kill whatever infections there are and heal the leaky gut), before we'll see much progress. This is what the Functional Medicine doctors are all pointing towards. http://www.functionalmedicineuniversity.com/public/Leaky-Gut.cfm It would be nice to find a "bandaid" antihistamine while trying to heal the gut, but the antihistamines haven't worked for us. Personally, I've found some relief with Quercitin and Nettle at times.

Dedee, thanks for posting that. My sons lithium levels are also undetectable. I'm trying to learn so much at once that I actually forgot about the lithium/B12 connection. Many thanks!

Well, if it's not a fear of calories, but a situation of "chewing and swallowing", I'd DEFINITELY say PANDAS. If she doesn't mind drinking, there are lots of yummy smoothie/shake recipes that are high calorie. My daughter's overnight bladder issues began in 4th grade. She also had anxiety around a lot of things most of her life, but some strange issues (OCD) would crop up every now and then and go away. She had one of those situations when she was around 4. Then in 5th or 6th grade the eating disorder developed, but she kept much of it hidden from us as she knew it was strange, but couldn't stop herself from doing it. Since then, if she gets more anxiety or depression, it's a sure bet she's actually sick. Maybe I'm overly hopeful, but I've done a lot of research, and I do believe once we get her infections taken care of and her gut back working properly, things will return to "normal" - whatever that is! Just hate to see our children suffer so much with anxiety and such. I'm pretty sure there are some case studies at this link with similar situations (but I'm a bit short on time right now...) http://pandasnetwork.org/research/ocd-in-a-young-child/ BTW - my comments earlier about forcing her to eat were when I thought she was trying to restrict. As long as she can get her calories in via liquids or smoothies, I'm not sure I'd stress her too much with the chewing/swallowing. (I'm sorry I wasn't clear on that from your original post! Just make sure she gets enough in - because weight loss in itself can manifest in anxiety/stress, etc.

So, so very sorry you are going through this. We've been doing this for 10 years BECAUSE we, and her numerous eating disorder therapists and doctors just thought it was a "psych thing". YEARS of individual therapy (with different therapists), numerous psych drugs (don't even remember them all...) to no avail. I had a gut feeling that her sudden onset bladder frequency was significant, but we went to lots of docs, 2 of which were at a very respected Children's Hospital, and they didn't know what was going on. "She'll grow out of it..." The anxiety, OCD, etc. was just chalked up to the eating disorder. (I'm beginning to wonder if most anorexics actually have something like PANDAS going on...) PANDAS/PANS kids tend to have lots of issues. I think strep started it in our case, but now she has mycoplasma P and gut issues that we are working on. Our daughter rarely presents with physical symptoms. Her anxiety, depression and OCD worsen when she is sick. I'm really beginning to wonder if it's originally the antibiotics we have to use that destroy the good gut bacteria that our kids need to fight off infection. But then they need antibiotics to control whatever else they get. What a vicious cycle! I'd make sure you get a good probiotic in her. Deficiencies can cause mental issues, and if her gut doesn't have good bacteria in it, you'll have a problem. Also some good digestive enzymes. I'm even trying to supplement our daughter with sublingual when I can - to bypass the gut. (Her testing shows she's deficient in amino acids, certain vitamins, etc.) Problem is, she counts EVERY calorie, and worries about the number of calories in the pills... Out of curiosity, had she been sick or on antibiotics before the PANDAS symptoms started? You have to force her to eat, patiently sit there no matter HOW long it takes. Tell her you know how hard it is, but food is medicine for her. The more malnourished she becomes, the harder it is for her to get better. (It's awful, and their fear and anxiety can turn them into little monsters when you push like that, but when they realize you won't back down, they are more likely to give in and eat (eventually.) But, please, do it patiently. (I wasn't always very good at that...) Also, please remember that they are literally TERRIFIED to eat, but deep down they really want you to make them eat. The eating disordered "thoughts" won't let them do it on their own. (It took my daughter YEARS to be able to tell me that, because she knew it sounded weird, but the thoughts caused such extreme anxiety.) Hug her and tell her you know how hard it is, although there is no possible way to understand their anxiety unless you've been through it. Also, be prepared to find food that you thought she ate hidden or thrown away. They are not trying to be bad, they are literally that scared. Another tip, if she's losing weight really fast, is make sure she doesn't have access to the Boost. I thought our dd was getting enough calories, but found out the reason she was losing was because she was pouring half out and diluting them with water. Also, (my daughter just piped in) that you need to check for excessive exercise. She said she was exercising a lot LONG before we were aware of it. Personally, I'd find a doctor that is willing to do some testing. She has something going on that is causing this. Functional or Integrative medicine docs, or LLMD's are better than allopathic docs, generally. We have a nurse practitioner now who has been wonderful about testing, and most of dd results show immune problems, bacterial and viral issues. Gut issues as well. I recently posted a case study where a teenage boy had both psych and neuro problems due to H. Pylori and B12 deficiency. They treated the H.pylori and gave B12 shots, and the neuropsych symptoms went away - my point being you need to have a doc willing to search for what is going on and TREAT IT. Eating disorder clinics won't test for what's going on, they think it's all in their heads. We actually had one facility say they'd look into PANDAS, but when we got there (5 hour drive later), they said they didn't believe in PANDAS. I don't want anyone to ever have to go through that nightmare.

FASCINATING case study about a 16 yr. old boy presenting with neuropsych symptoms (severe, with hallucinations) All resolved with H. Pylori treatment and B12 injections. For those of you (like us) with the MTHFR C6677T snp, he had it also, and the psychiatrist noted that that mutation may have been why his symptoms presented differently than normal B12 deficiency signs. Also of note - if we have malabsorption issues, it's important to "bypass the pesky gut". (injections or sublingual...) At least until we can find out what types of gut problems we have, and FIX them! http://evolutionarypsychiatry.blogspot.com/2012/11/b12-deficiency-and-psychosis-case-study.html

Thanks, 3bmom! The diet is the toughest for us. The eating disordered part of her makes diet changes extremely difficult. If we could get the anxiety a bit under control, it would be easier to deal with the eating part! Ugh...