Christianmom

What is the test and which lab? Do you know if Quest of LabCorp offer this test? I can't seem to find it on their test menus?

LLM -- I'm going to ask my naturopath about this tomorrow. There has to be an answer to this--a specific road to follow to test properly for all this stuff so that you supplement properly. It isn't rocket science. Someone should be able to direct us. I just don't think PANDAS doctors are educated enough on the natural stuff to direct and good lyme doctor's (or infectious disease doctors as I like to think of them) are just too few and far between. Perhaps the naturopathic world can help. I'll post.

This makes sense, but if the whole histamine blood test only shows your tendency for low/high histamine and not your current state, what do you do? How do you know how to treat? If theoretically you can be born with a low-histamine tendency but become high-histamine because of a chronic infection (or vice versa for that matter), how do you know which kind of supplements to take? And as you heal from a chronic infection, what then? Would you possibly see for example benedryl help and then later actually make you worse because your methylation has change. Is there anyway to test your current histamine level and not your innate histamine? Hope this makes sense.

I was curious if those with low histamine kids had the ceruloplasmin test run. Dr. T ordered it as part of my son's initial bloodwork. I think it is checking for Wilson's disease. Anyway, if ceruloplasmin is low, I believe it is a sign of high copper. My son's number was 21 (normal is 16 to 35). But I have read that in a teenager, 20 is the low range number. So my son has very-close-to-low ceruloplasmin. Anyone else seen this? It would be buried among other tests ordered by Dr. T during your initial visit. If you child's ceruloplasmin is lowish, do you think your child is low histamine?

Not sure, but I read this at http://www.alternativementalhealth.com/articles/walshMP.htm "Please note that whole blood histamine is a marker for innate methylation tendency, but is not an indicator of wellness or the degree to which undermethylation has been overcome. Undermethylated patients can become quite well without their histamine lab results changing at all." So I would take that to mean you are born either overmethylated, undermethylated, or normal methylation.

How do you test for this?

I looked up the test on Labcorp's website and it doesn't seems to mention being off anything, but that is a good question. Here are my son's symptoms: Dry eyes, thick hair, hyperactive, low perspiration, restless legs, very artistic and musical, no seasonal allergies (not sure about food allergies, though he doesn't do well with MSG or yellow and red food dyes), very social--thrives when around people), underachiever as a child (was a late reader, but did well in school after that), doesn't like breakfast, over-stimulated mind. He does not have all the symptoms, but he seems to lean that way as opposed to high histamine. Also, he has the adolescent-variant of PANDAS, and Dr. T has found that these kids tend to be low-histamine. I'll post the results when my son has the test done.

I don't really have any comments to make except that I did find a Labcorp test for histamine level: histamine determination, whole blood My son has all the symptoms for low histamine (even the artistic/music one), so I am curious to have this test run. The interesting link is that my son has no seasonal allergies, but if he is a low-histamine person he may have food sensitvities. My naturopath has believed food allergies were part of my son's probems all along. So I will also be testing for that. He does seem sensitive to MSG and red and yellow food dyes which I read is common with KPU (which he has).

Thank you for your reply. Can you tell me what your son's antibiotic is and for how long? Also how high was the IgG?

My son has always tested normal for mycoplasma until recently--IgG 178 (normal=<100). His IgM has always been normal. I had thought I had read that PITAND doctors treat mycoplasma even if the IgM is normal, if the IgG is high. My son recently had a complete GI stool profile done through Metametrix and his mycoplasma came back normal. So is mycoplasma something that I don't have to worry about even though my son's IgG is high? Anyone have any thoughts? Thank you.

Thank you for responding. My son's only symptoms are OCD. He was asymptomatic for strep as well. One of the reasons we have had so much extra testing done is because OCD seems to my son's way of telling him he is sick. He NEVER has any other symptoms and appears to be in excellent health--doesn't even have allergies. So perhaps this hookworm thing is causing at least part of my son's OCD. I'll post how it goes.

OK, I'm quoting myself. That's weird! Anyway, the albendalzole treatment for hookworm is only two days, 4 pills. My husband thinks it is worth going the drug way instead of using herbs, etc. because the treatment is so short and hookworm can be very serious. Anyone have thoughts about this? Thank you.

My son had a complete GI stool profile run through Metametrix and came up positive for "hookworm." I was curious if anyone else has had this with their child and how they treated it.

Thank you so much for taking the time to reply. Don't know if you have read this on the Metametrix site where they explain how to interpret this test. This is what it says (the bold is mine): "Uncommon yeast/fungi is present, and one that likely colonizes other animals, or has not been identified as pathogenic to humans. Infection with Candida, Rhodotorula, Geotrichum, Saccharomyces, and Trichosporon species have been ruled out. If present at +2 or below, it is likely that this yeast is transient due to ingestion of molds or other yeasts, and is not problematic to humans. Consider patient symptoms before treating. Treatment Options: Reduce intake of refined carbohydrates and sugars • If presentation is consistent with a fungal infection, use antifungals followed by prebiotics and probiotics • Avoid FOS powder as it may feed the yeast • Address other abnormal results on the GI Effects test first, with the expectation that rare yeast/fungi will be crowded out when healthy conditions are restored" Would ingested mold (say from bad cheese or something) be different than mold you find in your home? Did your daughter test positive for mold? We have not had the proper c4a complement test done yet--should be done this week. So I don't know if my son has mold or not. Do you have any thoughts on the "hookworm" and the "Parasite present; taxonomy unavailable?" Here is what Dr. T said about the hookworm: "I haven't seen hookworm associated with PANDAS symptoms before but from all we know that inflammation in general can trigger, and that hookworm is a chronic infection, it's certainly worth a try. We have seen beneficial effects of treatment of yeast in some children. I think with all that (my son's) been through it is a no-brainer to try to treat these." He called in a prescription for albendalzole for the hookworm and diflucan for the yeast. But my naturopath wants to try to treat these naturally first, so I won't fill the prescriptions until after my appointment with him on Friday. I'll try to post what he says.

Thank you JuliaFaith. I will look into having my son's thyroid check. I'll post if it uncovers anything helpful.

Thank you. Wishing you well too. Did the parasite/worms treatments help? Do you mind sharing what the treatments were?

Here are my son's results that were high/low/positive. I would appreciate anyone's comments. Thank you. Yeast/Fungi: 1. Yeast/Fungi taxonomy unavailable -- +4 (very strong positive) (this is not the normal candida yeast) Parasites: 1. Necatoramericanus (hookworm) -- Positive 2. Parasite present; taxonomy unavailable -- Positive Beneficial SCFA: 1. Total SCFA -- 29 -- Low 2. n-Butyrate -- 4.5 -- Low 3. Acetate -- 48 -- Low 4. Propionate -- 34 -- High Inflammation: 1. lactoferrin -- 4.1 -- High Immunology: 1. Fecal sIgA -- 148 -- High Digestion: Elastase 1 -- 291 -- Low

Thank you philamom. Do you mind telling what doctor orders it for your daughter? And why is it run every three months? Do you think it is a problem more related to girls than boys?

I think it is a phrase coined by the PANDAS doctors referring to PANDAS that starts at adolescence instead of (supposedly) ending there. In other words, a child whose PANDAS is not a pediatric condition starting before the age of 12. My son's problems started at 13 and he went into total exacerbation at 15 (almost 16).

MaggieMoons and MomWithOCDSon -- Did your doctors test for high histamine or just use symptoms to diagnosis? Not to hijack this thread, but I think my son has low-histamine--no allergies whatsoever, not even to poison ivy. Also, my son has the "adolescent-variant" of PANDAS and Dr. T has found that these kids are usually low in histamine. It is significant to know whether a child is low, high, or normal for histamine in terms of what vitamins, etc. to give them, but it doesn't seem that doctor's actually ever check for this. Is it a clinical diagnosis?

I was reading about hypothyroidism and it's link to OCD and thought perhaps I should ask my PANDAS doctor to test for this. Has anyone had thyroid testing done on their child? What test (LabCorp or Quest test if possible)? Was it helpful information?

My son has been on KPU treatment for about a week, and we are very pleased with the slow but noticeable improvement in his OCD. He has not had any stomach issues (but stomach issues are not normally a problem for him either). My naturopath is treating the KPU and he did not feel comfortable with the the CORE (only because he was not familiar with the manufacture) and chose these two things instead: 1. Total Omega Pome/Blueberry Swirl 16 oz by Barlean's Organic Oils -- 1 Tbsp./day 2. Nutrient 950® w/o Cu, Fe & I 180 vcaps -- 6 caps/day (worked up to this--started with 1 and upped 1 every other day until we reached 6) So I am not familiar with CORE, but wanted to let you know that there were other options.

Wow, that is a lot of weight loss and must be very frightening for you. If you were my daughter, I would see if there is a doctor that would admit you so that they can monitor your weight and perhaps force it up with IV nutrients or something. Better safe than sorry. To me, that kind of weight loss seems very, very serious, especially if you are eating normally.

Here is a link about KPU, more commonly known as "pyroluria." The test is called a "KPU" test. The best place to have the test done is through Vitamin Diagnostics. Probably not something to worry about for your son right now. We didn't pursue it until my son wasn't improving on antibiotics, and a forum mom suggested it. If you do have the test done, please PM me as it is easy to get a false negative since it is a urine test that you do at home and send in. It is not often ordered by the PANDAS doctors, but is commonly ordered by lyme doctors. So you will see a lot more talk about it on the lyme forum. http://www.naturopathyonline.com/PatientRoles/pyroluria.htm

Christiansmom -- dcmom brings up a good point, even though it was intended as a response to another post here. So, in addition to the XR, are you doing any therapy for the OCD? I guess I'm guilty of taking that for granted, but I shouldn't. I don't know how much my DS would've improved, abx, supplements, time and all considered, had we not kept up with the CBT/ERP to fight back at the OCD. I think his attitude and emotional lability would've still shown improvement, and perhaps the OCD rituals and thoughts would've been less upsetting to him, but the therapy is a big part of what got him back to his real life. Thank you for making that point. No, we have not done professional CBT/EBP, though my husband and I have tried with some success with the worst of the worst--showers, dressing, hand-washing, eating (though he still struggles with all of these). But it is difficult to have much success with CBT/EBP when he is basically remaining in exacerbation. He shouldn't struggle with EVERYTHING, at least in my opinion (and our naturopath's). He wants to get better and is really, really trying. It is not a matter of him just giving up. Today, however, one of the ways I felt his KPU treatment was helping was that he was really working at "not staring at his hands" (part of his OCD) without me reminding him. This is the type of help I am looking for from the antibiotics, supplements, etc. before going into full-blown CBT/ERP treatment. Right now I think professional pushing the CBT/EBT too much would just frustrate him.