chubbermommy

Thanks LLM. I have a LLND here who is doing the referring to Dr. J and Dr. M - I think we will try Dr. M in NY b/c she is closer. Our ND treats Lyme too so if we chose to go the all natural route, we could just stay with her. Currently, DS is taking Biocidin, now he is also on something called Bab-1 and methyl assist. Plus a couple of homeopathic remedies and a probiotic. And some clay mineral bath for detox. And we already do the lemon/lime water and epsom salt bath and Mg supplement.

Thanks sf_mom. I need to prepare now for treatment and I've been advised that he will get worse with the herxing before he gets better. Our ND is lyme literate but she cannot prescribe abx. May I ask what abx your child was/is taking?

I'm sure you can all relate to how RELIEVED I am to find out that DS is positive for Lyme. FINALLY we have SOMETHING to work on. Our ND recommended Dr. M in NY and Dr. Charles Ray Jones who I will be calling soon. We have all these natural remedies that I have to sort out. Calling my family dr to start on some stronger abx while we wait. My brain is on OVERLOAD!!!! Wheeeeeeeeeeeew!!!!!

Thanks for your insights, rowingmom. After reducing the Biocidin to one drop a day for the past 5 days, he seemed to start to get a bit better, but today (Saturday) was a lot worse. I find weekends, with lots of "nothing" to do, he is quite a bit worse. No focus, just a lazy day hanging around. During dinner, he also has this tic of banging his cutlery on a bowl or glass. If we take away the glass, he'll follow it and continue banging until it's out of his system. I know it's a tic and not an obsession/compulsion b/c his face is contorted when he does it, so it's motor thing. Absolutely bizarre, but I suppose nothing should surprise me anymore. Feeling very disheartened and wish our test results come back soon from Igenex.

Hi missmom. No, he is not on abx right now, just the Biocidin. I took him for a throat swab when he had the cough and it was negative. The cough/cold seemed to get better on its own over a few days. DS' only symptom really, is the tics. He has never had the other PANDAS/PANS symptoms, although he is certainly more anxious now that he can't stop this biting thing. But not beforehand, there wasn't any increased anxiety or other issues.

In the last week, DS has developed an alarming tic where he tries to bite something/someone. He hasn't bitten anyone yet, but he does bite himself (on the fingers, on the knee) and things like blanket, stuffed animals, toothbrush. I'm wondering if this could be a herx reaction from the Biocidin he is taking or a flare up b/c of a recent virus. He started on May 20 with one drop 2x a day...then increase by one drop a day up until 5 drops 2x a day, on the advice of our naturopath. Then May 29 he picked up a cough/cold from his sister that lasted about a week. Around the same time, this biting thing started. The cough is better now, the biting is getting worse. What I'm asking is, basically, what does a herx look like? Does everything just get really worse and more severe? We've cut back on the biocidin to one drop a day, starting today. Giving epsom salt baths and lime/lemon water.

Has anyone tried using flaxseed oil as an anti-inflammatory? All I've read about it says it's a good one. I can't remember where I read that something in it may not be good for PANDAS kids - wow, that was vague. I wonder if I should try it...

We are on day 4 of using the Biocidin - up to 4 drops, 2x a day. Would herxing start right away from using it? He seems worse today - more 'ticcing', although I can't really even call it that anymore. More like spazzing/seizure type arm jerking, slapping, kicking out, punching arms - and this is new - he seemed like he was trying to bite. I can't wait 4 weeks for our Lyme results!

So DS' tics had been fluctuating despite being on antibiotics (amox), so his neurologist and the immunologist were both wondering if it could be something else besides PANDAS. He has been tested for strep many times but always negative since that first test. I took him to naturopath who is sending him for a Lyme and babesia test with Igenex (sending him meaning we are going to a lab to have his blood drawn). Now I am worried - what if he is negative for Lyme? Then what?? And while I am fully on board with natural remedies, some of the homeopathic stuff I'm a little skeptical about. I know for many on this forum, it really works, and I'm not doubting that. Since this whole PANDAS started, I'm skeptical about everything now. At least there is someone now on the same page as I am. ETA: She also gave us Biocidin to take after we do the blood draw. Anyone have experience with this antimicrobial?

I am so happy for you T Anna and mayzoo, and anyone else who has found some success! (sorry I'm having to skim read quickly). We are seeing a naturopath this week since conventional medicine has us at a stand still and DS is flaring REALLY badly right now. I am keeping an eye on this thread.

My son also only exhibits tics. His vocal tics range from coughing to squealing to full on screaming when it's really bad. Thankfully, the screaming only occurs during flares and usually when he gets home from school, tired and hungry, and at night, just before bed, when he is really tired. He has "typical" motor tics such as repetitive frowning, scrunching his nose and crossing his eyes. When his symptoms first showed up, he would twitch his arms and/or legs close to his body. However, in mid Jan and mid Feb, we experienced two flares and his movements because very large, like windmilling his arms, punching, kicking, grabbing onto something and yanking, leaping/jumping. This would last anywhere from 2 to 20 seconds. This kind of movement, which resembles a bizarre interpretive dance, leads me to suspect he might have Sydenham's chorea as well. He has been on amoxicillin since the beginning, with the exception of a week long period where his tics came back full force and I fought to have the abx prescribed again. This was when our doctor didn't fully understand PANDAS. We see a neurologist also, but she doesn't seem to believe in the abx. She prescribed clonidine for the tics, which DS took for a two months with little effect. We will be seeing an immunologist in early April, so hopefully we can come up with a plan that will satisfy me.

*hugs* cara! You are not the only one who thinks that way...whenever my non-PANDAS DD does something suspiciously PANDAS like, I get all worried and anxious and start watching her like a hawk. I agree with the others that your DS is probably reacting to the stress around him and being 6, it's difficult to express himself but he knows something is not right. I think you did good comforting and reassuring him and making sure that the lines of communication are open. My DS is a bit older (he's 9) but I share with him my feelings of frustration and worry sometimes because I start to get snappy and easily irritated. I could not believe it when I once told him I was stressed because of his PANDAS and that I wanted him to be well, and HE comforted ME and said "awww, mommy, you're so caring". I just about cried.

That is great! So happy for you and your DS! :) :) Did he have a history of tonsillitis? I have not considered tonsillectomy at all since DS has never had a problem with his tonsils...

I didn't realize that fish oil could increase tics in some. I have been giving DS omega 3 capsules with fish oil....I wonder if I should try decreasing them. His tics have worsened in the past few weeks and I wondered if it was because the rest of the family came down with a cold/cough. But the fish oil thing is definitely something I should consider. I agree this is all so frustrating. There are way too many factors to keep track of and I have to admit that I don't really know what I'm doing!!

Rachel, are you giving just taurine or magnesium taurate? DS gets a magnesium supplement (glycinate) but if he can get the Mg and the taurine together, maybe that would be beneficial. Let us know how the True Calm works out.

Wow, lots to consider. I am hesitant to try out anything really, without doing lots of research and then consulting people here. Low and slow!

So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GABA. I'm interested to hear if anyone has tried these, with success or not. Thanks!

I have been thinking of this too. Mid January he started a flare - had him tested for strep and other co-infections. Nothing came up. But the flare coincided with a new tooth coming through. He got better after a few weeks, now is worse again. Why? Not sure, but DD has a cough/slight fever and DH had felt flu-like sick for a day and I have a cough, so obviously DS is reacting to us. Do I need more/stronger abx? Do I treat every flare with abx? Or maybe I should start some natural anti-virals. So hard to decide, so many things to consider. I have Dr. Buhner's book on hold at the library. I hope it's helpful!

Yeah...it's a tough decision. Right now we have a door to the upstairs area so the cat is not allowed in bedrooms. I wish we could wash her, but the last time we actually bathed her was over 10 years ago and it did NOT go well . DS is adamant that we keep her. I said, 'even if it makes your PANDAS better?', he still wanted to keep her. So I guess she is staying for now, and I have extra cleaning to do.

This may be a silly question but DS has a slight cat allergy (stuffy nose). I also do, but it's never been a big problem. Until now, with PANDAS, I'm wondering if having the cat around is causing some sort of inflammatory response that, however slight it may be, certainly doesn't help things. DS and DD would be heartbroken to see our cat go, but what can I do? I think it's time for the cat to find another home. Any thoughts? This allergy WOULD cause complications with PANDAS, would it not?

You can just email Dr. Swedo and she/they will respond!??! For reals!?!? How long is the response time?

Hi everyone. I was wondering if there was a list of supplements or naturopathic treatments that people have used, whether with success or without. I've seen many discussions and signature lines with all the stuff people use and it's hard to keep track of them all. A comprehensive listing would be helpful. For example, what is NAC and how it is helpful? (I'm going to Google that now). I just put my DS9 (at 60lbs) on magnesium glycinate supplements (120mg), omega 3's (672 mg EPA to 168 mg DHA) and he's on probiotics. That's about it. Also thinking about going gluten free. Thanks for reading!

Thank you for sharing this. We are only four months into our journey. Every time I read about recovery, it gives me hope. Every time I read about setbacks, it gives me more understanding and experience.

Just an update: The blood test from our family dr came back with ASOT at 267. I'm not exactly sure what it means, but the nurse said if it's under 280, it's good. We also saw the pediatric neurologist last Thursday. We had him on the clonidine for 2 weeks but it made him super tired and didn't do much for the tics, so we are cutting back to half the dose. I brought up the possibility of other infectious agents and requested more bloodwork. We also did a chest xray. And MRI is scheduled. However, I feel like she was humouring me really. She suggested stronger meds for his tics if he got worse/stayed this bad. We are still in this flare - can I call it that if it's been like 3 weeks? I definitely do not want to do more meds, in fact, I want to take him off the clonidine. After we saw her, his tics were SO BAD, I had to literally drag him through the halls of the hospital, kicking, flailing, banging into walls. Strangely enough, DS got a stuffy nose on Friday, and his tics were a lot better! How can that be? So now I'm looking into some alternative methods. I'm going to schedule some body chemistry testing that this naturopathic pharmacy/clinic does. I've also started giving him a magnesium supplement and am trying to find a high EPA fish oil for him. I'm hesitant to try too much too fast, so as long as I can hold on to my sanity, we'll go slow.

Thank you Nancy. That is a great explanation. Now I'm off to find a good EPA supplement.