mama2alex

Our ds 13 is 90 lbs and takes 250mg twice a day. They're tablets, so you could easily cut them in half. Also, just thought I'd mention our doc said not to take it with minerals, so we moved his zinc and multi to mid-day.

Very telling article. Thank you for posting! I've been wondering for a long time why so many "diagnoses" these days are just symptoms that point to a deeper underlying problem that most doctors won't even look at. I had some idea, of course, but this article really lays it out in detail. Medicine is simply a business now for too many.

I'm so sorry you're going through this, but you've found a great place for information, guidance and support. Given that you live in CT, I would highly recommend you have her tested for Lyme ASAP. Contrary to what you'll read in the media, Lyme can and does cause these sorts of psychiatric problems. Many on this forum have discovered their PANS kids have Lyme. If she hasn't had antibiotics in the last 3 months, you can do a blood test from Advanced Labs which cultures the bacteria that causes Lyme. This is a much more definitive test than antibody testing. It's expensive at $595, but well worth it to get a definitive answer right away. You'll need a Lyme or integrative doctor to order the test most likely, but if you do the research, and get the info to your ped, maybe he/she will order it for you (it's worth a try). And I would get in to see a Lyme doctor who also treats PANDAS/PANS as soos as you can - they can treat whatever infections are triggering this. Get on any waiting list you can - you can always cancel later. Hang in there. Hundreds (probably thousands now) of parents have recovered their PANDAS/PANS children, and you will too.

How much cholestyramine is she taking now? Alex was prescribed one scoop 4x/day for a month after we moved. He herxed so badly we reduced it to 3x/day. Our doc says you have to get out of the environment before you start treating, but did say that one family he treated couldn't move, so they used Thieves Blend on their house and were able to treat while still there. We tried this before we moved and the ERMI numbers did come down significantly with the Thieves Blend. We diffused it in our house for 2 days straight (stayed at a hotel during that time because of the strong smell), then I think you need to do it again every month or two. We ordered the oil and the diffuser from YoungLiving.com. To answer your question, yes absolutely the headache could be from inflammation that doesn't show up on a scan. Before moving and being treated I had pain all over my body. It got much worse during treatment (a bad herx), then got much better once the toxins were removed and things had time to settle down. A few months ago my pain started to get worse again and we finally figured out what the mold exposure was and eliminated it. I went back on cholestyramine 3x/day and the pain resolved within a week. As for the corn, I'd talk to her about doing a trial of no-corn to see if it resolves the headache. That's something you can do right now, and if it doesn't work, at least you've ruled it out. If it works, she'll probably agree its worth doing without some foods she likes longer term.

About 8 years ago, I had a "never-ending" headache. No doctor could figure it out. We did allergy testing, MRI, the whole 9 yards. Turned out to be a gluten sensitivity. I know she's GF/CF, but any chance she's developed a sensitivity to something else such as soy or corn? Another thought was the mold. Have you moved? Has she been treated with cholestyramine since? You'd posted in the past that you thought her ongoing headache might be from mold exposure - any chance that's happened again? Is she well hydrated? Dehydration to any extent gives me a headache. If none of those, did you change anything (meds, supps, school, anywhere she's going) around the time the headaches started? I'm sure you've thought through this, but just wanted to mention - might be worth running through it one more time. Final idea - as you know, things can pop back up as you go through treatment, so it may be worth having your LLMD run some tests. Epstein Barr gave Alex an ongoing headache, but of course other bugs could do it too. Hope you find the answer soon!

Dr. Patel is in the same office space as Pacific Frontier Med, but has a separate practice. You would call the same number to make an appointment with him and they can easily pass the medical records to him with your permission. Again, I would highly recommend you see him for a comprehensive look at your son's medical issues.

Beth Maloney might have some insight on this. In my experience, she's good about answering emails. Since it's the holidays, you might want to state that it's urgent/crisis in your subject line.

I'm so sorry Peg. You deserve better, but I'm glad there's a silver lining.

I know this isn't what you want to hear, but these antibody tests are not reliable enough to be the sole basis of a diagnosis. You need to have him evaluated by someone experienced in dealing with Lyme and other chronic infections. I agree with SF Mom - Dr. Patel would be able to help you. My son and I both see him and he's given me my life back over the past year. Feel free to PM me if you have questions.

I agree that you should see a good LLMD (preferably integrative). Your Igenex test is lit up like a Christmas tree compared to the ones I've had over the years. And all the symptoms are highly suspicious. I went for many years not really believing my doctor that I had Lyme, and just limped along basically ignoring my own health issues to focus on getting our ds well. But this past winter, I ended up in so much pain, so fatigued, and with so much brain fog I could barely function. This is the risk of ignoring it. I did turn out to have a mold issue on top of Lyme that was finally verified by the Advanced Labs culture. What is your C4A level? My doctor has said that all his Lyme-only patients are below 10,000 and all his mold patients are over 10,000. My C4A was around 25,000 last winter. Also, wanted to mention that a lot can be done with herbs, supplements and diet. The only prescription med I've taken for all this is Cholestyramine for mold and I'm feeling MUCH better. I've taken all naturals/herbs for the Lyme/Bartonella, etc. I'm not sure a negative on the food allergy test means you wouldn't benefit from cutting out gluten and dairy, but that's always a very personal choice. A good book on diet for Lyme and/or autoimmune issues is The Lyme Diet by Dr. McFadzen - it covers a lot more than just cutting out certain foods and has good tips on what not to eat with certain antibiotics. Best of luck!

I'm so sorry. You're in my thoughts and prayers. You'll get him back - hang in there!

Would it be possible to try cutting certain foods from her diet to see if that helps? I had round the clock headaches years ago, and after a number of tests (MRI, allergy, etc) no doctor could tell me what was going on. I finally did a trial gluten-free diet and the headaches disappeared. To my surprise, it also cleared up constipation. For me it only took 3 days off gluten to see the difference, but for some it can take longer. Food sensitivities can definitely cause constipation. If this is the case for her, then she may have "leaky gut" which can impede her healing. The 3 biggest offenders are usually gluten, casein/dairy and soy.

My son's C4A came down to just under 1,200 after a month of Cholestyramine. Mine came down too, but not as far. I don't remember the number, and I can't find the lab report at the moment.

We've been through the mold nightmare, but I'm not familiar with that panel. I will tell you that our LLMD/DAN doc told me that all of his mold patients test over 10,000 on the C4A. His Lyme-only patients may be high, but are always under 10,000. My son and I were about 18,000 and 25,000 respectively, and we have both benefited from mold treatment, so it held true in our case. That said, I think it's worth one more look, because mold is 1) practically everywhere, 2) so insidious, and 3) will hold you back on recovery.

I agree with retaining a lawyer now, before anything happens. It sounds like there is more than a 50% chance they will call CPS, so better to be ready for the worst. I also wonder if you should consider sending him to Rogers, NOT for the long-term benefits, but to diffuse this situation and protect him. I have heard from others that the doctors at Rogers "get" PANDAS and will provide any medication/supplements your doctor recommends. Then once he's home, you could tell the school that Rogers recommended he be home-schooled for a time and get the school out of the picture. Just an idea. Honestly, this sounds like a dangerous situation, so I would not hesitate to take any measure possible to protect him from CPS. For the first year my son was ill, this was our worst fear. Things got contentious with our public school and I think we are just lucky they didn't call CPS on us. After that year, we enrolled him in a small private school that I knew would be on our side. The private school "got it" and that has been a huge blessing, taking stress off of me, and off our ds.

I've been thinking about our water lately and worrying that it's a huge source of toxins. What do you all do about drinking water? Any good filtration systems you'd recommend? We're in an apartment, so I think we may be limited on what we can use. We used to have an AquaSana countertop filter hooked into our kitchen sink at our house, but I don't think it filters out fluoride. Any suggestions?

Hi, Welcome to the forum. I'm so sorry your family is going through this. So you have two people/groups you need to educate. It's not ideal to have to educate your pediatrician, but if you can't get your son to go anywhere else, you need to try. There are some good articles you can print out to show your doctor. You can also give him/her the book Saving Sammy and ask them to read it. You can take video of your son and show the doctor what's going on. If you can possibly get him to a specialist - either a PANDAS doc or LLMD (Lyme-literate MD) - at some point, that would be ideal. I'm sure if you post the question, others who've dealt with this specific problem can throw out good suggestions for getting him there. The video might also be helpful for the school personnel to see, if you feel comfortable with that. They would then understand that what they see at school isn't the whole picture. There are also articles you can print out that are more appropriate for the school to educate them about PANDAS. Some families opt to not really talk about PANDAS, the medical condition, and just talk to the school about the symptoms (OCD, ADHD, learning difficulties, etc) that require support from the school. One good resource to start with is www.ocfoundation.org/PANDAS. Start a new thread asking for articles to show both your pediatrician and your school, and someone will post good links.

There is going to be a protest this Thursday, 12/5 for anyone in the Boston area. I wish I could be there - think it's so important that our patient communities join together to stop this madness at BCH. Please, if you are in the area and can attend, please go! The more bodies they have standing out there, the more attention this will attract, and the safer all of our children will be. If BCH is put under the microscope, other hospitals around the country who have violated parents' rights will think twice next time. Latest story with protest details: http://westhartford.patch.com/news/around-town Beth Maloney is also asking parents to call the Mass Attorney General at 617-963-2073 and voice your outrage. There is also a petition on change.org.

My son developed PANS 4 1/2 years ago during his 5th bout with pneumonia. He never showed strep titers, except a very slightly elevated Anti D-Nase B. He too had had an earlier exacerbation at age 5 1/2, during a hospitalization for pneumonia, but at the time we didn't recognize what it was (we'd never heard of such a thing!). We thought it was a reaction to all the meds he was on in the hospital, and it went away in 6 weeks. This is a very common occurrence with PANS/PANDAS. Once it hit right before his 9th birthday, we tried treating with a single antibiotic for months, and we really didn't see any improvement. We tried IVIG twice - one from Stanford and one from Dr. K, 7 months apart - but the improvements we saw didn't last. After 14 months, we went to a Lyme doctor who put him on multiple antibiotics for various infections (Lyme, Bartonella, Babesia, viruses), and rotated them every few months or so. This is when we started to get our son back. We saw something like 13 doctors/psychologists/psychiatrists before we got to our Lyme doctor. The doctors who helped us the least were our pediatrician and the doctors affiliated with large hospitals. They are too constrained by the "evidence-based medicine" paradigm to deal with something this complicated, controversial and new. So don't be discouraged if the single antibiotic isn't helping him. Its much more complicated than that, but you will figure it out. Hopefully, the immunologist had some information for you, but if he did not have definitive answers, don't be discouraged by that either. As nicklemama said, this is not a sprint, it's a marathon. You will get there.

Thirteen, You are definitely not alone! There are many parents talking about this over on the PANDAS/PANS (including Lyme) forum. I would post a request for names of good docs in your area on that forum and people in your area will help you find someone. Your doctor is misinformed. Parents are now finding help all over the country. Some here see one of the well-known PANDAS docs, some see Lyme doctors, and some see integrative doctors who understand PANS - there are a number of options. The important thing is to get a recommendation (or several), so you know you're not wasting your time and money. PANDAS/PANS is a complex illness, and involves more than just a simple strep infection, but read and ask questions over on the PANDAS/PANS (including Lyme) board, and you will find help and answers. Hang in there - you will get her better!

I agree with going forward with Lyme and coinfection treatment. If you've looked for and treated for other infections, with no positive results, it makes sense to move forward on the Lyme, especially since you have a known tick bite 5-6 months before onset, the rash, and the positive band on the original test. I'm curious what the LLMD had to say about the steroid taper. Usually steroids are not recommended for Lyme patients, as it suppresses the immune system and can allow the bugs to flourish. Also, please do your own research before starting treatment. I'm a little alarmed looking at the protocol she's recommending, but others who've gone through similar treatment could give you feedback on their experience. When my ds started Lyme treatment, we started with Rifampin because he had a positive Bartonella test. Then they added another abx 6 weeks later, and a third 4-6 weeks after that. It was done in a stepwise fashion, and we rotated antibiotics every 2-3 months over 2.5 years. When he went back on abx after a 6 month break, it was the same approach, but with a different doctor.The pulsing plan looks like a bit of a shock and awe strategy, and I worry about herxing. Is the doctor giving you anything for detox? Also, I've seen a few posts about kids reacting very poorly to Tindamax at the beginning of treatment. We are 3 years in, and still haven't done Tindamax. So just do your homework on that and make sure you think its the best path. Is the doctor planning just 9 weeks of pulsing or is that the point at which she wants to re-evaluate? As I mentioned, we are 3 years into treating Lyme & Co (with 6 months off last winter/spring), and we just got a positive Lyme culture back. It's very tough to beat. Last thing - re the testing, you sounded hesitant about not retesting. I think the doctors who deal with this every day don't always need the test results to know what they're dealing with. However, testing can have a psychological impact that shouldn't be underestimated. I went for years getting negative Lyme results and wouldn't treat because of it. Even once my doctor convinced me to treat, I still had doubts. Once I got the positive culture last spring, it changed my whole mindset and I became MUCH more proactive about my overall health and my Lyme treatment. I no longer had nagging doubts and insecurities about what I was doing for myself and my son. And getting his positive results back has helped even further, both for me and my husband. So bottom line, your doctor may not need test results, but if you feel they would help you, don't hesitate to ask for further testing. I wouldn't wait for them to start treating, but do ask for what you want.

Oh, the moving issue....ugh. I am afraid that we could move into the very same situation. We have four rent houses, and I have seen moldy vents in at least two of those....particularly during a hot, hot summer where I assume mold is so easily made due to ductwork in the hot attic and condensation forming. We have talked about moving to our favorite place...Colorado, but then there are basements.....Guess we'll think about all that again. What kind of doctor to we see to get cholestyramine.....assuming our LLMD does not write a script? It's very important to move out of the moldy environment before you start treating. You can use an ERMI kit to test any place you might move into. I would post and ask for a referral in your area to a doctor experienced with mold toxicity. I only know of N. California doctors.

Just wondering why you think it causes depression? I've never heard of that, though both by son and I had serious herxes when we took it 4 times a day. His anxiety went through the roof for that month - it was very clear that it went way up the first day and went way down a couple of days after he dropped down to once a day. For me it was pain - terrible pain for the month I was taking it 4 times a day, but then once I decreased to once a day, my pain level dropped to far below what it had been pre-treatment.

How did you test your house? Air tests always came back clean for us, but ERMI testing showed high level of mold toxins. Also, even if your house is clean on the ERMI, schools and churches - especially old buildings- are common sources of mold toxins, so it's good to test the person, not just the house. Is the Total Mycotoxin panel an immune-based test? We did immune-based mold testing at the beginning of Lyme treatment, which showed nothing. Years later, with a different doctor who understands mold, we found my son is genetically susceptible and had the blood markers for toxicity. Shoemaker discusses good blood tests for mold toxicity on his website. C4A, VEGF, MSH, etc are good indicators, taken together. Also the HLA genetic test tells you if you're genetically susceptible to mold, Lyme or both. If you suspect mold at all, I would highly recommend finding a doctor who understands this whole area. It's extremely tricky.

A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched. On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know. On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.