Christianmom

We used Vitamin Diagnostics' KPU test as well.

Sorry for the ignorance, but monthly IV's of what? Did your LLM order them?

Sorry to go off topic, but why is this test important? Did it affect your child's treatment?

As for your own situation, only you have enough background info to decide which feels right, but try not to tie yourself in knots. It's likely a chicken/egg question that you may only be able to answer when chronic infection is gone from the picture. Thank you, LLM, for reading my rambling. I guess my thoughts (or should I say hopes) are that if the KPU was their first, perhaps fixing the KPU will take care of my son's problems and this will all be over for him. But as I read your post I finally understood--even if you fix the KPU, the lyme (or whatever infections my son has) will still have to be treated. But perhaps fixing the KPU will keeping him well once he is completely over infection. Thank you! Susan -- In what way is the test unreliable. Are you talking about the problems with taking urine properly and preserving it properly? I guess I am asking, is the problem with the test giving a false negative (or a lower than should be positive)? There shouldn't be a problem with getting a false positive, right? I am asking lots of questions as I have an appointment with my homeopath tomorrow to discuss treatment for my son's KPU and I want to understand it all as much as I can.

This is what is confusing to me. If KPU can exist as a genetic error of metabolism without being caused by an infection like lyme (or strep or whatever), then why don't PANDAS doctors test for this as standard? Is the reason because it is unlikely that PANDAS is set into motion by this genetic error? Is it unlikely that a child would have KPU that would then cause then to be more likely to react with PANDAS symptoms to a strep infection? In other words, KPU first, PANDAS second? Or do they shy away from the test because it has to be done through a specialty lab? The reason why I as asking is because I have read of pure KPU stories (no PANDAS) where the symptoms are basically "sudden-onset OCD." I read stories of children who have the genetic form of KPU but never know it until a stressful event triggers severe OCD often in the teen years. For example, they have to move to a new school. They are then tested and treated for KYU and they fully recover. But don't the symptoms sound like the adolescent variant of PANDAS (which my son has)? Is it possible that my son's main problem is KPU that later led to PANDAS? He did undergo a stressful move at 13 which started noticeable OCD symptoms, but he was not incapactiated until 15. I have no idea if he had strep at 13 (he is asymptomatic), but his strep titers were high at 15 when he went into full exacerbation. He has not responded well to antibiotics. Or is it more likely that KPU is simply "making matters worse" and the root problem is PANDAS/LYME?

What is the test and which lab?

What test do you run to check for low glutathione levels?

My son has none of the symptoms of KPU except for mild hypoglycemia and cold hands yet he tested in the "extreme" range. But he is also asymptomatic for strep and/or lyme. My son's symptoms for everything seem to be OCD. It seems to be his body's way of telling him he is sick. It's an inexpensive test, worth having done, especially as 80% of lyme patients will test positive for it.

My 16-year-old son had PANDAS-induced anorexia and was almost hospitalized for it. He walked into Dr. T's office weighing 104 lbs. (he was 5' 6" and 15 at the time)--scared Dr. T. The PANDAS antibiotics quickly got the anorexia under control. Actually the steroid burst gave the most help as my son had two "really good" days which convinced him that he had PANDAS and helped him start fighting. We also began sitting with him at every meal and insisting that he eat. Also helps that steroids make you VERY hungry. My son has never had "regular" anorexia. He doesn't care a thing about his appearance. His anorexia was completely brought on by PANDAS OCD.

Thought some might be interested in this link. Interesting as it mentions "low histamine" in people with KPU as Dr. T thinks my son has low histamine. Hope I am remembering this right, but I think he said he saw the low histamine link in his adolescent-variant of PANDAS patients. The symptoms are interesting too, as my son tested in the "extreme" high range for KPU and his only symptoms now are OCD and hypoglycemia. But as a baby he did have the "China doll" look (perfect skin; most perfect skin of my four children), "bloated belly," and "frequently gets hurt" symptoms. "Mr. Bump" would almost be the right way to describe him as a toddler. He was always falling down--again unlike his siblings. I attributed that, however, to the fact that he is my only boy. Anyway, here's the link: http://www.liliasahmeira.com/austism/kpu-and-autism.html

My son is having a c3a and c4a complement test run through LabCorp. Unfortunately the hospital ordered the wrong test (did a c3 and c4 complement test instead) so I am waiting to have the right test done. The hospital has to order a preservative from Labcorp before they can run the test and I am waiting for this to come in.

I am already on her waiting list, it is 9 months. I have been on for about 3. I was hoping to find someone else so as not to have to wait that long. But thank you. I have heard very good things about her.

I am looking for a good LLMD doctor in the central Pennsylvania, New Jersey, D.C., or Maryland area and was wondering if anyone could recommend someone. Preferrably one that would be familiar with PANDAS and neurological lyme.

Thank you so much for your thorough reply! I had thought the opposite about the lyme connection -- treat KPU and then lyme treatment will be effective. I had thought that possibly the KPU problem was keeping my son's lyme (or mycoplasma or whatever my son has) treatment from working.

So saddened by your post. Please know that my son has been on antibiotics for a year and has never gone into "remission." He is still very debiliated in terms of functioning though he is strong now and happy. Through this journey I would say that I am more convinced than ever that my son is PITAND and that there is some infection causing it. I agree with getting a second opinion. PANDAS doctors tend to see things through PANDAS glasses. I know what I really needed for my son was a doctor that would look at him through PITAND glasses. I think Dr. B and Dr. T would do that. There are may more triggers than strep involved and to stop there I feel is a disservice to my son. And about the thoughts that it's too late with some children. I know some doctors are talking that way, but that just doesn't make any sense to me. Harder to treat, yes. Too late, no way. At least that's how I feel with my 16 year old. In terms of what the infection trigger may be, my son just came back very positive for KPU, a test I had waited to run because I was sure it would come back negative and didn't want to take my son off supplements for a week as it requires. So in other words, I'm going to keep digging. I would be glad to PM a list of the tests we have had done. Most were covered by insurance. If money is an issue, if there is any doctor that would be sympathetic (or even empathetic) to that it would be Dr. T. Praying for you and your daughter. God is able!

LLM -- Are either of your children's only symptom OCD? I was so surprised when my son's test came back positive as he really had no symptoms other than OCD and some hypoglycemia. Also, when I had him take the urine sample, I didn't know about not using the first morning urine, not exposing the sample to light, or adding 500 mg. of ascorbic as a preservative. So basically I made a lot of mistakes with the sample. Is that OK? I would think my mistakes would have made the test come back negative instead of positive. But it came back 30.5 which the tests notes as "extreme" positive. So with all my mistakes can I assume my son would have come back even higher had I done it correctly? Also, do you think having my naturopath guide the KPU treatment would work? I have an excellent naturopathic doctor who is very accessible to me. I know Dr. T would have to stay involved to order testing, but I would feel better if my naturopath was guiding the treatment as Dr. T is so hard to reach. And as much as I respect him, he doesn't seem to be up on natural things. Also was wondering, since KPU is positive for my son, should I and my other children be checked as I read it can be inherited through the mother. We are awaiting mold testing as I know mold (and lyme) are possible causes of KPU as well. Thank you so much!

My son recently had a KPU test ordered through a lyme doctor we were working with briefly (it was my idea to order the test, the lyme doctor was not familiar with it). Anyone I just got back the results and am no longer working with that doctor. My question is can I expect my PANDAS doctor (Dr. T) to be familiar with this test and be able to treat? Also, was wondering if there is anyone else whose PANDAS child tested positive for this. If so, what did you (or your doctor) do?

Thank you so much for your reply. I notice that your daughter recently had PEX. Did this doctor suggest the PEX or are you working with a PANDAS doctor too? Would you PM the integrative doctor's name and number? Is she taking new patients? Does she have a waiting list?

In trying to get my son better, I have mostly worked with a PANDAS doctor (Dr. T), a local naturopath, and a lyme doctor (for a short period of time). I was wondering if anyone could suggest other possible doctors I should go to (besides my son's GP). I am asking this because of so many things that seem to be the trigger for PANDAS besides strep (mold, celiac, viruses, thyroid, mycoplasma, lyme, yeast, etc.). I am concerned that checking for and treating everything is too much to ask of Dr. T since he is a neurologist. Should I get an immunologist involved? An infectious disease doctor? I know I have not spent enough time pursuing lyme, but if you take that out of consideration, what other doctors have you taken your children to? Were they helpful? My son is 16. His only symptom is sudden-onset severe OCD (adolescent on-set PANDAS/PITANDS). Thank you.

Does anyone know what the correct tests are to test thyroid function? Does Labcorp run them?

I'm sure everyone probably already knows this, but I thought I would post because I didn't and thought it might help someone. My son was tested for magnesium and B12 deficiencies and my son's naturopath feels that the wrong tests were ordered by the doctors (one was a lyme doctor, one a PANDAS doctor). According to his naturopath, the preferred test for magnesium deficiency is "magnesium, red blood cell," and the preferred test for B12 deficiency is "methyl malonic acid, serum." He feels that the regular tests for magnesium and B12 are not meaningful if the results come back normal as my son's did. I am going to have the tests rerun if I can.

I spoke with my son's naturopath today and he suggested the following enzyme that does not contain cellulase--Biocore Enhanced Enzymes by Protocol for Life. Here's a link to the cheapest place I found to buy it. He suggested 1-2 capsules before each meal. http://pureformulas.com/biocore-enhanced-enzymes-90-vcaps-by-protocol-for-life-balance.html

I just got back from an appointment with my son's naturopath and he said the same thing basically that you said. He said the information gleaned from staying on antibiotics will tell us if the probiotics are doing their job. So I'm going to keep my son on antibiotics for the test. Thank you!

The problem isn't gas, more like he feels like he's going to throw up. Like his stomach isn't settled. He has had this problem a few times in the past which is why I started the enzymes. He was taking one enzyme with each meal ("super enzymes" by NOW) and that took care of the problem. But I will look into the bentonite clay. Thank you.

Has anyone seen Dr. Bach in Hamburg, PA for lyme? He was highly recommended to me by a mom who's son had babesia and OCD. He has worked with a lot of children with lyme. I would appreciate anyone's comments. Here's his website: http://www.drgregorybach.com/