Christianmom

MichaelTampa -- When you tried classical homeopathy, were you off antibiotics and other meds.?

No, I use a local naturopath. But I have heard good things about Pierre Fontaines. I guess I am sticking with the naturopath I have because I feel that he hasn't really been given much of a chance to help my son as he is on so many antibiotics right now (3). The naturopath was having some success when my son was only on one which we will go back to at the end of September. But the success was extremely slow coming except for the great sleep and mood changes that I spoke of. I did try a few months ago taking my son off of antibiotics completely and he began to regress within 24 hours. He asked to go back on his antibiotic (it was only one, Biaxin, at the time). I haven't had the nerve to try again since. We are pursuine PEX or IVIG at this point in hopes of having the "dramatic" change that others have had. And I will be continuing with homeopathy in hopes that it will then be able to keep my son well. So I don't know what to say about the homeopathy because in my son's case we really haven't given it the chance that others have since my son has stayed on his antibiotics. (Sorry to go off topic.)

I agree with sleep helping with the OCD. For us, the homeopathic remedies my son has been on have all helped him sleep. When he first went on them, he would sleep for 10 hours in a long, hard sleep. Our naturopath said it was a sign of healing. After about a month of good sleep, he learned to "handle" his OCD much better. All of his OCD is still there and he struggles with even simple things like changing his clothes and eating, but his overall mood is excellent--amazing to me. So getting sleep has really made a difference though in no way has "cured" him.

Would it possibly help to have your doctor speak with another doctor like Dr. T and see how they get the IVIG's through insurance. I think you will need to get a CVID diagnosis if possible. Dr. T has some very specific immune tests that he runs that might be helpful in getting this diagnosis even if your son is coming up normal on the regular immune tests. Not sure if insurance will accept tests run after the fact either (maybe Dr. T would know). And the tests are expensive, so maybe if wouldn't be worth it unless you've already met your deductible. One of the test is a t-cell subset test run through Mayo Clinic. We had trouble getting insurance to pay for this originally (not sure why, but I think because it may not be FDA approved yet), but they did in the end.

My son just had a complete metabolic panel run to check liver function since he has been on antibiotics for almost a year. The test was fine. I did not realize they would be testing glucose as part of this panel, so he did not fast. His glucose was tested at 82 (normal 74-106) which my son's naturopath thought was low for a non-fasting person. He suggested increasing the amount of protein in my son's diet. On this website, it is recommended to have your child checked for hypoglycemia before suspecting PANDAS. http://twicegifted.com/pandas-cause-ocd-tics I was wondering if anyone has had their child checked for hypoglycemia. This is very interesting to me as diabetes runs in my family and though I have never been tested, I have felt for years that I am hypoglycemic, though my glucose is normal. I never go more than a couple of hours without eating something. Always eat protein first thing in the morning, even if I'm not hungry. If anyone has had the test done (G.T.T. test) and it came back positive, what did you do? Is it possible being hypoglycemic could cause a child exposed to strep to get PANDAS symptoms. This is also interesting to me because my son is in perfect health except for PANDAS. We never suspected infection when he had the sudden onset of OCD. We were shocked when his ASO was high as he had no signs of infection, not even a sore throat. He has never been sickly in any way before now.

pandas16 -- What is a d8/17 marker and how do you test for it?

What caused the decline after the PEX? If it was lyme, why did it take six months before causing problems? Shouldn't the lyme have caused the PEX benefits to go away almost immediately?

I know there are some whose children have had PEX with no success and then found that the real culprit was lyme. But is there anyone whose child had success (at least at first) with PEX, yet the culprit was still lyme. I guess what I am really asking is if my son has PEX with no improvement, can I assume it is because he probably has lyme. And if he has success with PEX (at least for a reasonable length of time) that my son does not have lyme. I would appreciate anyone's thoughts.

My son 16, is extremely gifted at the piano. He has been able to play very difficult classical pieces for years. He has taken lessons since first grade. He also can play by ear and improvise. He plays the violin fairly well too and loves to sing. He is in two choirs (singing is one of the few things he can still do well). Math and science were his best subjects. By ninth grade he had completed through chemistry and advanced math. In October of tenth grade, PANDAS hit. Unfortunately now he can barely play the piano because of his OCD. It is one of the things I miss the most about him. Science and math are impossible for him now also--require too much decision making. My son is also low in vitamin D (25.8) and has recently started taking D-3 supplements.

Is very low Vitamin D common in lyme or just a little low. My son's was 25.8 (32-100 is normal). He as well is out in the sun all the time, but we do live in PA.

I was googling and found this website that offers a test for histamine level. Has anyone had a test like this done checking for low brain histamine in their PANDAS child? Did it take a doctor's order to get the test done? http://www.integrativepsychiatry.net/histamine_level_whole_blood.html They also have a more comprehensive test here: http://www.integrativepsychiatry.net/neuroscreen_neurotransmitter_test.html Anyone had this done? Hope I am thinking right that "histamine level" here is the same as "brain histamine level" that Dr. T is saying is low in PANDAS kids.

Twice I've woken up and noticed horrible build up on my teeth like that. It can be scraped off by a hygenist or a sharp instrument. I'm not sure why, but antibiotics can cause a lot of plaque at times. I'm very careful now to brush and floss really well and when I have build up, I scrape it off at times with something sort of sharp. (my hygenist would probably cringe to read that) Plus I use a whitening mouth wash which does seem to help with the color of my teeth. It really freaked me out when I saw it but when I talked to my hygentist, she told me it does usually come off. There are some antibiotics that kids with develping teeth shouldn't have. I think Doxy might be one. Thank you. It does look like plaque as it is only between his teeth. I will make an appointment with the dentist. Hope he can make it through a cleaning.

I just looked at my son's teeth yesterday and noticed he has brown stains between several of his bottom front teeth and two of his top front teeth. He has not been to the dentist for about a year and a half because of his OCD, but normally he gets a clean check-up. He does not seem to have any cavities or decay, only the discoloration between his teeth. Otherwise his teeth look normal. Could this be from his antibiotics? He has been on biaxin (and other PANDAS antibiotics) since October and has recently started amoxicillin and rifampin for lyme.

Does anyone know if there is a test for low brain histamine?

Thank you mama2alex for your reply and concern. I know we are probably making the wrong decision, but we have decided if we see no improvement in our son by the end of 3 months we are going to go for PEX. So far it has been almost two months with no improvement at all. He has "herxed," but I am not sure what he is herxing from--the die off of spirochetes or the die off of the good bacteria that the antibiotics are killing. How can you know? Yes, the lyme antibiotics are scaring me to death. And frankly I'm just sick and tired of seeing my son suffer with no improvement. He has been basically incapacitated for a year. He is risking graduating on time. Last year he earned one English credit and his transcript says "adpated" beside even that credit because I did most of the writing for him (which wasn't much). If my son improves at all in the next few weeks, I will continue lyme treatment. But otherwise we are pursuing PEX. My son needs a clean start, even if it doesn't last long. I'm not saying I won't pursue lyme again if my son doesn't do well (or stay well) after PEX. And I am willing even now to keep my son on the lyme antibiotics if there is ANY improvement. It's just that I'm not convinced that he has lyme either. And even if he does, if he has PEX and I can therefore reduce my son to only prophylactic levels of an antibiotic, perhaps the homeopathy can keep my son well. And PEX has been offered to us and I don't want to miss that opportunity, especially when the procedure has no real risk. Because of my son's age, he may not even need a PICC line.

My son (16) has had this test done as ordered by Dr. T. I went to my local hospital to have it done, and it seems like the blood may have had to be spun there (but I can't really remember). The hospital was fine about overnighting it to Mayo and was very familiar with how to do this. My only problem was that the insurance tried to deny paying for it, though they did in the end. The hospital fought it for me. I really don't know the ins and outs of it, but you may want to check that your insurance will cover it as I think the bill was high. I guessed that the problem may have been that the test is not FDA approved (hope I'm rememberinig that right). Dr. T. ran the test as part of the process of justifying to insurance the need for IVIG or PEX as my son was not showing immune deficiencies on the normal tests (immunoglobulins and IgG subclasses all normal). He said the results showed enough deficiency to justify a CVID diagnosis, but I don't if it worked as I haven't gotten that far with my son yet.

I have read on the forum about Dr. T's thoughts that low brain histamine is causing PANDAS. Does any one know which test he is ordering to test for this? Is it the cytokines TH1/TH2 serum test that he is ordering from IBT labs? If so which number on there shows the brain histamine is low? Or is it part of the t-cell subset test he orders from Mayo Clinic. If so, which result is he looking at?

The rest of the link says this: "Despite the potential for antidoting remedies, however, there should not be an excessive amount of anxiety about the possibility. The majority of the time, even in cases where patients are doing various other therapies, there is no antidoting of the remedy. When a remedy that was working well is antidoted, the resulting decline in progress should occur rather quickly and precipitously. A remedy whose benefit wears off slowly has most likely not been antidoted, but rather requires a redose or a change in remedy." So if I am understanding this correctly, though being on antibiotics is not preferred, it should not stop the remedy from working. Do you interpret it this way?

Thank you Stephanie2 and pandas16 for your replies. I will talk to my homeopath on Friday. It is not Pierre but a local naturopathic doctor. But he has treated many people who have been on antibiotics (including lyme patients) and had success. We did try to stop antibiotics (at my request not his), but my son immediately regressed. Maybe we should have tried longer, but I was afraid of going backwards as my soon is pretty incapacitated even on antibiotics. Is there anyone having success with homeopathy whose child is also on antibiotics?

Yes. Phosphorus. I know this is unusual, but the homeopath feels the remedy should work even if my son is on antibiotics and has treated many patients this way. We did try taking my son off antibiotics and he regressed with 24 hours and asked to go back on them. At the time he was only on one--biaxin 1000 mg.

We have been very conservative about supplements with my son because he is being treated by a homeopath. The homeopath feels my son only needs his homeopathic remedy, vitamin D (my son was tested as deficient), probiotics, and to avoid artificial flavoring, preservatives, colors, and MSG. We have not done anything else natural. Though this may seem crazy to only be doing so little, my son basically has no stomach issues at all--even after almost a year of antibiotics. He also has no signs of a yeast infection. His overall health is excellent--no problems at all. We are currently pursuing lyme treatment and he is on three lyme antibiotics--biaxin, amoxicillin, and rifampin. We will continue to pursue this for a couple of months and if there is no change will be looking into PEX. (I know, I should probably try the lyme treatment much longer, but the high dose of antibiotics required for lyme treatment is frightening me.) My hope is that PEX can get my son where he needs to be and perhaps then the homeopathic remedy will keep him well. Maybe I am too optimistic about this. My question is this. Am I being too conservative with the natural stuff? I hate to try too many things as it will make it difficult to tell if the homeopathy and/or lyme treatment is working.

Ziva -- Thank you, I will!

I was up in the wee hours of the night last night, worrying about my son as I know you all can relate to, and came across this site: http://twicegifted.com/pandas-cause-ocd-tics which suggests that PANDAS kids should be tested for hypoglycemia. The test suggested is a glucose tolerance test (4 hour test with all 1/2 hourly readings). I have never heard of this before but was very curious as I am hypoglycemic and most of my father's family (he was one of nine) were diabetics. Though I will say I have not seen severe signs of hypoglycemia in my son. Has anyone had this test done? Should I consider this? My son's doctor is Dr. T and he has never suggested this. Nor has my son's lyme doctor, thought we have only seen him twice. Here is another link: http://www.hypoglycemia.asn.au/articles/OCD_and_Nutrition.html

I am very curious if there are any teenage (or older) PANDAS children that are having success with homeopathy. I have read the book "Out of the Fog" by Beth Eberhardt whose teen-aged PANDAS son was healed with homeopathy, but I wondered if there are any others. Also wondering how long the improvement took and what remedies were used.

LLM -- Thank you. I will probably keep him on the curcumin and phosphorus as he has been herxing pretty badly the last couple of days and I don't want to do anything to make it any worse. The herxing started a couple days after the rifampin was added (to his amoxicillin and biaxin). I'm hoping it is a good sign.