mama2alex

I don't really have an answer for you regarding the possible cavity, but I have read a number of posts on this forum over the last few years about exacerbations of PANDAS/PANS after dental cleanings or dental work. You can do a search and read these past posts to learn more. When was the crown placed in relation to the onset of her symptoms this Fall? I did want to mention that I developed mercury poisoning - we believe from my amalgam fillings - some years back. I had to have them removed and then go through chelation to recover my health. You should ask your dentist if he used amalgam under the crown, and if he did you should go to a mercury-free/environmental dentist and have it safely removed. Amalgam fillings are about 50% mercury and they DO leak, no matter what your dentist tells you. They shouldn't flake off (thinking of the black specks you're finding on the floss), but I don't know for sure that it's impossible. You can find a mercury-free dentist in your area on www.IAOMT.org. This is is the website of the International Academy of Oral Medicine and Toxicology.

I'm really sorry you are going through this. You definitely shouldn't panic - you WILL get him through this. What you describe sounds like herxing to me. This is when the body gets overloaded with toxins from the die-off of infections (viruses, bacteria). The IVIG can introduce antibodies that kill off infections your son's own body wasn't dealing with. Then additional antibiotics could have caused more die-off on top of that. I would try doing aggressive detox. Your doctor should know how to do that or you can ask for ideas here. Things that have helped my son detox are lots of water with lemon, Bentonite Clay, Epsom Salts baths, and Burbur.

So sorry to hear this! I was hoping he'd come through the pneumonia without any problems. Did they end up just giving him the one Z-Pack? I can't get it out of my mind that our doctor said a Z-pack isn't enough for pneumonia. The pneumonia they gave our ds the Z-pack is when he had is first PANDAS episode, although we didn't know what it was until a few years later. I'm sorry too that your ped isn't helping you. Sounds like you plan to leave her practice, and that makes sense. We recently did the same thing for similar reasons. Prayers for a safe trip and successful treatment this week!

In the US there haven't been any documented cases of Hep B from IVIG, but it sounds like you aren't in the US. Can you find information on the regulation of IVIG in your country? I have no real advice otherwise, except I agree you can ask for the Hep B titers to be run If your child had this vaccine earlier in life. We are no longer vaccinating, but everyone's decision process has to be different depending on their circumstances.

I saw the doctor yesterday and Michael, you were right. DS has the 4,3,53 allele, which means multisusceptible. The doctor says my husband can have this allele and not necessarily be sick, but it does mean he's vulnerable to some degree. Once we are out of the house, we'll do more testing for mold toxicity on DS - MSH, C4A, VEGF, etc.

I'm taking Phosphatidyl Choline by BodyBio, 900mg 3 times a week. I'm around 120 lbs. My doctor said it repairs cell membranes and helps with detox. I can't really tell you if its helping me, because I'm now on a number of supplements.

I finished the book a couple of days ago and really enjoyed it! I agree that this is good for general awareness - it brings into the mainstream the idea that mental illness can have a neurological/immunological cause, which the vast majority of people still don't know. I also got one little nugget out of the book. She talks about believing her father was an imposter during her illness - this happened to our ds in the first year of PANDAS. It was fleeting and only happened a few times, but it always bothered me and I asked several doctors, including a psychiatrist about it. I asked if it was psychosis, and they all said no, but couldn't tell me anything else. It turns out this phenomenon is call Capgras Syndrome and is common in people with schizophrenia, brain injury and dementia, and occasionally happens to people with diabetes and hypothyroidism.

I don't have any experience with this drug, and haven't actually every heard of it, sorry. We tried low-dose Zoloft for about a month, but it was causing disturbing intrusive thoughts at the end, so we stopped. You might try posting this question on the PANDAS forum too - many who read that one are dealing with Lyme, but even if they're not, we are basically all talking about the same sets of symptoms. There are a lot more parents on that forum, so you might get more responses.

Yes, and thanks for taking the time to translate the numbers. The weird thing is that it looks like the 8-4 comes from me. My other allele is 13,6,52A, as stated by my doctor - this is the mold susceptible one. So that would mean the multisusceptibility comes from my husband, but he is fairly healthy. I will let you all know how the doctor explains this on Monday. I supposed there could have been an error on one of our tests.

Thanks for all this information! Just wondering how you knew this combination would mean he can't recover from Lyme using abx alone? I thought certain combinations had trouble detoxing from Lyme, mold or both. I didn't know they meant certain treatments weren't effective.

Thanks! I did find a document called "Instructions for using the Rosetta Stone for HLA DR by PCR" via Google that I think explained how to interpret the table on Shoemaker's web site. The table wasn't labeled "Rosetta Stone," but seemed to be a key to the test results. If I got it right, Alex is susceptible to both Lyme and mold. Don't know if this is the so-called "dreaded" combination, but am talking to the doctor on Monday, so I'll find out.

I started listening to the podcast, but then decided I'd just read the book. I started reading it last night. The similarities are very intriguing to me, though I'm not expecting any real answers from this book.

Sorry, I don't have an aswer for you. My son takes transdermal glutathione, which seems to be effective in bringing his levels up, though we haven't tested in quite a while. One of our docs said there's no point in taking it orally, but the other gives it orally, so I have no clue who is right.

Smarty, Do you know if she tested as "sensitive" to both Lyme and mold? My understanding is that would be the worst case scenario with this test, though I definitely don't have my arms around it yet. My test shows I can't really detox mold, but can detox Lyme. I am sensitive to many things as well - antibiotics, sulfa drugs, gluten, dairy, sugar, alcohol, and skin is very sensitivite so I use soap/laundry detergent without perfumes/dyes. Here's a good video I watched recently which would help you/her understand a lot more about this: http://mendocoasttv.org/mcdhWellnesslecturemoldtoxicitydrnathan1.html Our doctor says we need to address the mold problem in our home - or move out - before I can recover from this. He is going to treat me with Cholestyramine, which Dr. Nathan talks about in detail in the video. It has to be done in a very particular way, so you really need to be under the care of someone who understands this - it doesn't sound like your sister's doctor is. He is also going to have me take a number of supplements, most of which I've already started, to help heal the damage caused by the mold toxicity. These include DHEA, phosphatydil choline, liver support, transdermal glutathione, B vitamins, multi-mineral (b/c Cholestyramine can deplete), fish oil and a few others. To diagnose me, my doctor did much more than this test. He tested things like C4A, VEGF, MSH, cortisol, ACTH, MMP-9 and did the VCS eye test (something else Dr. Nathan discusses in the video). You can read about these things on Dr. Ritchie Shoemaker's website: http://www.survivingmold.com/diagnosis/lab-tests I know there are a few moms on this forum who've dealt extensively with mold toxicity, so hopefully they will chime in and help us!

I just got Alex's HLA testing back. We did it through my doctor because he says I have mold illness and we wanted to see what was going on with Alex. Can anyone tell me what these mean? I'll talk to the doctor in a few days, but wanted to get input here first. Here are the results: DRB1 - 04:01, 08:01 HLA DQ - 03:JZME, 04:MJYR DRB4 - 01:FVUU I looked at Shoemaker's chart on his website, and am thinking this means Alex is susceptible to mold AND Lyme, but I'm not sure. My test showed I'm only susceptible to mold. Any thoughts would be much appreciated!

I saw Dr. C in PA speak about a year ago and was very impressed. You might call her office and see if they can recommend an LLMD in the area for adults. I'm sure they have plenty of parents who are also infected and need referral or mention good adult Lyme docs.

I am researching mold illness and just learned that low MSH (alpha melanocyte stimulating hormone) can cause low pain tolerance. Low MSH causes decreased melatonin and endorphin production. Melatonin is obviously needed for sleep regulation and endorphins help with pain tolerance. I think you can test for MSH levels, but I don't know what the test is called. Mold toxicity definitely causes low MSH, but I don't know what else could cause it.

I just finished watching an excellent video/talk on mold illness by Dr. Neil Nathan in N. California. If you are exploring mold as a possible culprit in your child's or your own illness, I would recommend watching this. It's almost 2 hours, but takes a very complex subject and simplifies it quite well. Click this link then go to the lectures under "2010" and click on the title (Mold Toxicity). He has lectures on this site about Lyme and autism as well. http://www.mcdh.org/wellness/wellness-lecture-video/

I just finished watching an excellent video/talk on mold illness by Dr. Neil Nathan in N. California. If you are exploring mold as a possible culprit in your child's or your own illness, I would recommend watching this. It's almost 2 hours, but takes a very complex subject and simplifies it quite well. Click this link then go to the lectures under "2010" and click on the title (Mold Toxicity). He a couple other lectures on this site about Lyme and autism as well. http://www.mcdh.org/wellness/wellness-lecture-video/

I'm sorry you had a less than fruitful appointment. I think you are better off seeing someone in private practice than going to a children's hospital. Since your son didn't have sudden onset and you have a family history of TS, I would go to one of the doctors who really specialize in this and let them help you sort it out. I think someone made a recommendation for a doctor in Chicago in another thread, and that could be a good place to start since its within driving distance. We saw this doctor and received IVIG, however I didn't find that he looked closely at infections or immune issues - just our experience. Also, a DAN or Lyme doctor may be able to help you, if you have one of these in your area. Both types of docs looks at all types of infections and immune dysregulation. If you're willing to travel farther, there are some very good doctors, many on the east and west coast. From what you said, I'm guessing your son has a lot of food allergies - has he had any testing for these? The fact that the tics got worse with the Halloween candy also makes me wonder about sugar. Our son has been "off sugar" for years, and when he cheats we always see an increase in symptoms. For us its more anxiety and moodiness, not tics, but its worth considering in your case since he had this reaction. He could have a yeast overgrowth in his gut - sugar feeds yeast. Gluten can also be a big offender with these kids, so a trial of gluten-free for a few weeks might be worth it too. As for the milk, we got a similar "scared straight" talk from our former pediatrician. These are doctors who've had little to no education in nutrition and haven't looked into it on their own. I wouldn't give it a second thought. Give him a good multi-vitamin with calcium, vitamin D and lots of green veggies. Also, many of the milk substitutes have calcium and vit. D, so that can help too. I have no idea what this "micro-nutrient" business is all about. Soy is another common allergan in these kids, so you might try almond or rice milk. We like Blue Diamond and Califia Farms almond milk. Good luck with your doctor search - there are some very good ones out there.

Yes, its just a fancy term for somewhat thick blood. What is the VEGF connection? Our pediatrician didn't mention this, and ds hasn't been tested for this, but my VEGF level was high. I think my doctor was looking at this in connection with mold, but can't remember.

The doctor said if he tests pos for this we will give him an enzyme called Lumbrokinase - sounds similar.

Our ds has had pneumonia 5 times, plus one relapse. The relapse occured when he was given a Z-Pak as treatment (he was not on other abx at the time like your son) and occured 5 days after he had finished the Z-Pak. You have the Augmentin on board already, so that should help him get on top of it, but one of our doctors commented that a Z-Pak alone is not enough to beat pneumonia. The last time ds had pnuemonia was when PANDAS hit him over 3 years ago. He hasn't had it since he's been on long-term, full-dose, rotating abx for Lyme/PANDAS. It concerns me that your son got pneumonia while on antibiotics - what do your doctors say about that? Have the doctors told you how to monitor his breathing? At some point, we just bought a stethescope and an oximeter, but you can watch his chest rise and fall and count the breaths per minute. Anything over 40 per minute and you should be on the phone with the doctor and monitoring frequently. 50-60 per minute and I would take him to ER - it indicates that he's not getting enough oxygen. Our ds has needed to be hospitalized twice for pneumonia because he needed to be on oxygen. The second time we knew to count breaths and when they hit 60 per minute we took him to the after-hours clinic and they had an ambulance take him straight to the hospital. Not trying to scare you - this was just our experience. Hang in there. I know how stressful it is. You are on top of it, so he will be fine.

Glad you are getting some answers and continue to dig for more. I am convinced that as long as we don't give up, or "accept," we can get them well. It's just very complicated and can take a long time.

You might consider having him swabbed for strep right now, since things seem to have changed recently. He should also be evaluated for Lyme and coinfections by a qualified Lyme doctor. Many on this forum are dealing with Lyme along with other infections. And of course the strep titers and mycoplasma should be checked. I don't think Dr. K looks at Lyme - at least he didn't when we went to him, so you'll have to set up a separate appointment to look into that, but a Lyme doctor can do all the testing for other infections, including viruses. My son was not diagnosed with Lyme until a year after the overnight onset of PANS/PANDAS (about 5 years after his initial, brief PANS/PANDAS episode), and he has improved greatly with anitbiotic treatment. After infections have gone on for that long, its more complicated and may be harder to treat, but that doesn't mean he (and you) can't get relief at this point. Don't worry, you will get through this. It's good you've found this forum.