matis_mom

My son gets knee pain with every exacerbation. He also sometimes gets it just by itself. I don't know if it's Lyme, strep, or reactive arthritis. But my son has confirmed Lyme, so I would watch and journal when he gets those pains. Sometimes a mother's log is worth more than any test My son would get worse about every 30 days, very telling of Lyme.

Man! That stinks. Yeap, you definitely need to move on... I agree maybe if you go to Urgent Care or even just to a Minute Clinic they might be more helpful. Like Vickie said, make your point and politely threaten them with negligence if they don't do something. Our pediatrician is no PANDAS expert, but she has been very helpful and proactive on getting on top of things, bless her soul! She has, on more than one occasion, put ALL my kids (yes, 8 of them) on antibiotics. She is an Omnicef fan (broader spectrum if I understand correctly), and it seems to do the trick (until we get strep again!). Also, did they check their ears? Once I had some kids just feeling off, no fevers, PANDAS ds acting up... I took them all in and we had 4 with positive rapids, and 2 with ear infections (incidentally, my PANDAS son and his sister who now turns out to have PANDAS too --and they both have Lyme, but that's another post altogether). Now keep in mind NO ONE HAD ANY OF THE TYPICAL SYMPTOMS, NOT EVEN EAR PAIN. They all got treated, even the one child who did not have anything at all, just because everyone else had it, it was safer to treat him too. So I really don't get that doctor that will not treat or do anything when your kids are having symptoms. How did the throats look? Anyhow, my point is, make sure they check the ears too. That's why I never just make a nurse appointment. If I'm going to take everyone in and pay 8 copays, I want to see an MD and have them check everything. They ALWAYS do a culture, no matter what, so also insist on that. Welcome to the PANDAS mommas club. You'll have to develop some very specific skills to deal with some of these docs. With our dear pediatrician, putting a sad, desperate face and looking like I'm about to cry works! I just play the "oh, poor me, help!" role and it works with her, but with some other docs I've had to be pushy. You do whatever it takes to get your children treated! It stinks, though, that on top of dealing with sick kids, we have to deal with stupid doctors sometimes.

Hi Stephanie, I would definitely consider it. DS13 had his out at age 12, because of PANDAS and suspected Lyme. As you know we have a large family and have had strep A LOT, especially last fall/winter. I've all been to the doctor countless times to check, checked titers, etc. I had been having different health problems (don't want to get sidetracked here), and elevated ASO. After trying different abxs, I finally got my tonsils out and, after recovering from surgery, I've been feeling MUCH BETTER OVERALL, THANK GOD!!! Of course, with kids, you always will have the worry about anesthesia. At least that was a big concern for me. But anyhow, the other point I wanted to make is that you keep pursuing the Lyme diagonosis. After two years on this PANDAS journey (which originally started with and LLMD, but I dismissed it because I was too focused on getting a positive lab), we are back to Lyme. Thinking back, I remember so clearly my kids getting sick every 28 to 30 days, like clockwork. Someone in this forum mentioned "the Lyme bacteria has a life-cycle of 28 days" or something like that... well this is my theory now... Lyme is what turns off your immune system, and that's how you catch strep, or are not really ever able to erradicate it. Now since starting Lyme treatment, I've noticed "flares" on my kids, and think "shoot, they have strep again". Thankfully, these flares pass, and what looked like strep I think now it's just a Lyme/Bartonella flare. So my suggestion would be to yes, think tonsillectomy, as both Lyme AND Strep can hide there, and get them tested for Lyme and Bartonella, or just go see a good LLMD. Also, look at your own health and your husband's health, and see if either one of you could be the source.

It's amazing that it just depends on which doctor you see, sometimes even in the same practice! The ID doctor I saw showed great concern over my mildly elevated ASO, gave me a bicillin shot right there and then, agreed that my tonsils should come out, run a whole lot of bloodwork, sent me for an echo, and wants me to re-check titers after the tonsillectomy, just to be sure. It was so refreshing to be taken seriously for once! But then again it just feels horrible to know that you go to one doctor they tell you one thing, and then you go to another and they tell you something completely different. My PCP did not agree that the tonsils needed to come out, the ENT and the ID where all for it. Who are you supposed to believe? The ones that say don't worry, you are fine, or the ones that go over-board??? I've been through enough the last year to go ahead and get the those things out!

Goodness! Now I remember about a year ago the trashcan in PANDAS ds's bedroom smelling like that and my poor 6yo took the blame for it! Yikes! Anyhow, I don't have any brilliant advice here except that you may want to cut back on the Vitamin C as it can cause loose stools. My 13yo PANDAS son has had bathroom issues off and on (it only completely went away after the first steroid taper). He was changing constantly and he would wet the bed at night. With CBT (just done at home) we got him to cut back on the number of times he changed, and we settled on pads for the night. I thought he would be totally embarrased when I offered but he readily accepted it as a better alternative than wetting the bed every night. A few weeks ago I guess it was worse and he even asked for "something bigger, more like a diaper" Thankfully it did not last so we are just back to the regular pads older people use for incontinence. At least he gets a good night sleep not having to worry about that. I've heard the case of a child who could not use the bathroom his own parents had used (they were "contaminated"), so maybe for now if he can have a bathroom to himself that would help? Just an idea. Maybe talking to him he will be able to identify what it is that keeps him from using the toilet. Also, I have my boys clean their own bathroom. Hard as it was at times, I never let PANDAS ds off the hook on that. Maybe if your son disinfects the bathroom himself he will be comfortable using it? I am sorry you are going through this. I remember the frustration having to changing sheets every day, doing loads and loads of laundry, etc. It is exhausting to have to deal with this on top of the "mental" stuff.

Ok, I found this too... http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=392:what-is-lymeaid-4-kids&catid=105:lyme-aid-4-kids&Itemid=483 It's called LymeAid4 kids, and it provides up to $1000 towards dianosis and treatment. I know it's not PANDAS specific, but it may help some here. I also found this website, which may be helpful for those who do not have prescription drug coverage. I have not used this website myself, but it looks like they offer discount plans as well as links to other public and private institutions who offer help. http://www.needymeds.org/ And I second the motion for Vitacost. They are usually the best price and their shipping is very reasonable. I always search for coupon codes before I check out and there is always some kind of promotion going on to save a few more dollars

Awesome post! Thanks Vickie for bringing this up. I know some many of us are in this situation, and it gets even more stressful when you have more than one child affected... We are now pursuing Lyme treatment for both PANDAS ds13 and "almost-positive-it's-PANDAS-and-Lyme" dd10. I was very blunt with the LLMD in that our resources were very limited, and he is totally understanding. He said the same thing you are saying: good multivitamin, Omega-3s, and probiotics. He is also treating them based on symptoms without going through the expense of Igenex testing. For those of you out there who are wondering if Lyme or co-infections are implicated, this resource may be of help. I have not pursued this yet, but might in the future... LymeTAP offers financial assistance for Lyme disease testing A nationwide program to help financially strapped patients pay for Lyme disease diagnostic tests will start accepting applications November 1. The Lyme Testing Access Program (LymeTAP) will be administered through the Rotary Club of Ferndale Foundation, in coordination with the Humboldt Lyme Awareness Group (HLAG). It is made possible by a generous grant from IGeneX Reference Laboratory of Palo Alto. While all three organizations are based in California, people throughout the United States may apply. “Many patients can’t afford the cost of basic testing,” said LymeTAP coordinator Sylviane Schwartz, of HLAG. “This poses a huge financial burden to patients, who must pay out-of-pocket to get properly diagnosed.” LymeTAP permits testing at any lab of the patient’s choice provided it is certified by Medicare and CLIA (a government designation that sets standards for laboratory testing). Applicants for assistance must provide evidence of financial need. Their treating physician must also sign the application. Initial funding for LymeTAP comes from a $100,000 grant from IGeneX Labs. The program gives priority to children, but adults may also apply. Lyme disease, a bacterial infection spread by ticks, is the fastest growing vector-borne disease in the United States. It has been reported in all 50 states and many foreign countries. Schwartz said it can be a complex illness to diagnose clinically because it can mimic other conditions such as fibromyalgia, chronic fatigue, and multiple sclerosis. “Delays in testing often lead to delays in treatment, which can make the disease harder to treat. LymeTAP will address one cause of testing delay, inability to pay,” Schwartz said. “We hope the program will allow more people to be tested and treated early.” IGeneX, based in Palo Alto, is a reference lab certified by Medicare and CLIA that specializes in clinical and research testing for Lyme disease and other tickborne infections. Humboldt Lyme Awareness Group is an educational organization promoting Lyme and tickborne disease awareness programs in northern California. HLAG volunteers will coordinate the LymeTAP program in conjunction with the Rotary Club of Ferndale Foundation. The Rotary Club of Ferndale Foundation is a 501 c 3 charitable organization set up to support a variety of community needs. Rotary’s motto is “service above self.” According to a spokesman, “The LymeTAP program is a perfect example of this motto in action.” To find out more about LymeTAP and to download an application form, visit www.lymetap.org.

I think your worries are very valid. You want him to keep the friends he so much needs, and yet you want to keep him safe from bad influences. One thing would be to get to know the parents of your son's friends, that will be helpful in getting a feel for what they may be in to. Of course, keep the communication going, especially the dad-son line, as some things are better shared between men. Also, it's important to stay one step ahead of the game. Not that you need to let him know all the crap out there, but you don't want him to be caught of-guard, or get into tricky situations simply because he didn't know what might be coming... I don't know if I'm making myself clear. But I think PANDAS or no PANDAS, when kids grow up there will always be tough choices between being popular/keeping friends, and doing the right thing. It's just going to be tougher for you guys because he missed so much already. I am glad to see, though, that he is doing better!!! That is very encouraging And of course, the secret weapon is to pray, pray, pray for him and his friends.

Oh, I SO get that!!! I have eight kids, and yes, they don't even ask me my name, they just say, "so who (how many) are you bringing in today?" The upside of it is that the nurses are happy to swab even if we are there for something totally unrelated You know you are a PANDAS mom when even your 2-yo "knows the drill" about getting swabbed for strep and says "me first" when the nurse asks who wants to go first!

Wow Nojo! Good for you! It's amazing how trying to get our kids better so many parents here are figuring out our own health issues. Glad you got such a definite answer to your ailments!

So sorry to hear you are going through this. This is one of the symptoms that is most annoying and time-consuming... ds can spend half the day in the bathroom when he is doing poorly. He also has had problems at night, and that was cutting into his sleep. At some point I suggested wearing pads, thinking he would totally be offended, but he actually embraced the idea. Now he just wears a pad every night and does not have to worry about soaking the bed. A few weeks ago it was worse, and he even asked if we could get something bigger, more like a diaper! So maybe if you give your daughter a pad, maybe she will feel "safe" and at least she can get something done (like eating dinner maybe?) I remember too ds changing constantly, not just underwear, but everything! He was running out of clothes, there were piles and piles of laundry, we had to change his sheets almost every night... The first steroid burst took it all away, he was in-and-out of the bathroom in a minute, no more issues whatsoever. So to me, it is a PANDAS issues, but probably more related to inflammation? Maybe if you tried a few days of ibuprofen and see if that helps?

So glad to hear it's working! Your posting gives me great hope We are waiting for dd's bicillin to arrive in the mail... (we had to go through the mail-order service because for some reason they are not covered at the pharmacy, but they would be covered at the hospital, but dd does not want to do it that way so we'll do them at home...)

Hi Linda, I know how you feel... and then some! Multiply your situation by 2.5... I have 8 kids, and I worry about them all too! I go through periods when I'm a freak, but I can't keep that level of anxiety too long, so then I relax, and someone gets sick again, and then I go into overdrive again. I think we all need to take a step back and come up with "a plan". A long term plan. Something that is sustainable in terms of time, energy, and financial resources. Otherwise we will drive ourselves crazy and into bankrupcy! So, in your situation, I would do the following 1) keep the other two boys on Olive Leaf Extract at least for a while. 2) maybe have their titers re-tested every couple of months or so. 3) invest in a box of rapid strep tests so you can test at home. 4) make sure everyone is eating healthy foods, drinking plenty of water, and getting enough rest. Right now just focus on helping your kids through the T&A recovery (I'm a week post-op, and the pain came back with a vengeance! ) And of course, come here for help/support/whatever you may need My ID doctor just gave me an order to re-test ASO in a couple of weeks (that would be about 3 weeks post surgery), so when you take them to the post-op appointment, maybe your ENT can order that (at least you'll save another doc's visit!)

I just came back from my f.u. with the ID doctor... ASO (taken before tonsillectomy) was back up in the 200s, so I'm glad I got those things out! DS13 seems to be making slight progress on his Lyme/Bartonella treatment. Right now he is taking Augmentin XR and Doxycycline every day, and on top of that Rifampin (M-F) and Zithromax on weekends! We have upped the probiotics and he seems to be handling it ok.

Hi all, I am wondering if those children who are being treated for Lyme and/or co-infections are still showing "PANDAS" like reactions to strep. I have not seen it in my son the last couple of months. Either everyone has been staying healthy (well, I doubt it... I just got my tonsils out because I kept getting strep!), or he is not reacting the same any more. Maybe it's all those antibiotics... or is it that the immune system is finally healing? Don't get me wrong, he still has the anxiety/ocd, but I have not seen the "deer-in-the-headlight" look in a while (oh, I should have kept my mouth shut! Please Lord, I don't want to see it again!) The other symptom that persists is the urinary frequency/lack of control at night/feeling like he can not get it all out. So he is still spending way too much time in the bathroom. How long will it take for this to resolve? Are you doing anything different to address this?

Glad to hear the good news! It's so interesting to see the same things come up for so many of us! Our LLMD said when you see all the mental stuff (OCD/anxiety) he suspects Bartonella and so he is treating DS accordingly. No Alina for us yet, just Rifampin on weekdays and Zithromax on weekends, plus Augmentin and Doxycicline (that's a lot of drugs!) I have not seen any major improvement yet, but at least he seems stable, except for getting a bit quick-tempered at times, and he made the connection with starting to snack on banana chips (which have sugar!), so that may be yeast creeping up over here as well. I too think I have Lyme (seeing ID doctor again on Monday, hopefully some indicative results from bloodwork). It's funny too that I had so many little symptoms I did not think much about until I started reading about Lyme... I'm going to go try walking heel to toe and hope I don't fall!!! Again, if it wasn't for hearing other people's experience, I never would have found out!

I just find it amazing that he makes so many assumptions about people thousands of years ago having celiac disease, where does he get that??? People in Ancient Times prepared their grains carefully by soaking them, they were always fresh ground, etc. The bread one gets today from the store is well, nothing similar to what ancient poeple ate! So don't get me wrong, I do believe going GF can greatly help those with autoimmune disease, but I do not think wheat and other grains are in and of themselves "the culprit." Until we all get better, I am keeping ds on a strict GFCF diet, and trying to move the whole family toward the same, but I do try to every now and then prepare stuff with properly soaked grains. A good read on the subject is "Gut and Psycology Syndrome", fascinating...

I would be concerned about those levels in the younger boys. And your ASO is also above normal, Mrs! I think a biopsy is standard when they take the tonsils out. Our ENT did not see the point in doing a culture, he said you WILL find lots of stuff there but it doesn't really mean anything. But at this point, I don't care. I pushed and he agreed to do it, and he also agreed to send half my tonsils to check for Lyme (apparently that is done somewhere else). Who knows in the future what role that information will play. So I would insist. Heck, it's your kids health! So your other boys have not been sick yet their ASO's are that high? Did you have them thoroughly checked for ear infections, sinus, GI issues, etc? What was the main reason for doing a T&A? I understand your stress. At least you are already on the right path trying to cut down on the bacterial load. I'd be interesting to see what the numbers are after surgery. Make sure they take antibiotics (hopefully they have started something?), and even though they will be eating soft foods and it will be hard, try to stay away from sugar. Also, whatever they usually give for pain did not work well for my ds (I think there was codeine in it or something that jsut made him jittery), so keep an eye out for that and maybe ask the doctor for an alternative. Ibuprofen works a lot better for us. Keep us posted!

Bless his heart! He is dealing with a lot. It seems your LLMD is on to of everything. We'll keep him in our prayers. Funny thing is my 13-yo PANDAS ds's confessor thinks he might be a good candidate, and the parish priest just invited him to a vocations dinner that was only supposed to be for 16 and up! Hmmmm. God definitely works in mysterious ways, and He has it all under control. I know He was wonderful plans for our kids, and maybe going through all this will prepare them to help others in the future.

Tough call on who to pick first. I've had those "electrical impulses" or tingling sensations. I do believe they are Lyme related. I don't know if Lyme causes PANDAS, but I do know people with Lyme catch strep more often and have a hard time kicking it (hey, I just had my tonsils out because of this!). So while not all Lyme's patients will develop PANDAS, I think they will be at greater risk because their immune system can't handle much, that's what Lyme does to you. In the end, it doesn't matter what you call it, as long as you find a treatment that works! I am putting all my money on erradicating Lyme and co-infections first before I go any further down the PANDAS path. Our LLMD is familiar with PANDAS so he tries to give them abxs that will address both. I think even neurologists are having a second take on this whole thing... I heard our neurologist is now testing kids through Igenex if there is suspicion of Lyme. A year ago when we started seeing her she totally dismissed the whole theory, and unfortunately I did not know any better then.

And they are OUT... Home now and feeling not too badly. Just taking ibuprofen (I have a prescription for Percocet but I'm trying to avoid it). They sent half the tonsils for culture and the other half somewhere else to look for Lyme. He said not to panic if the culture reveals an array of pathogens, it is to be expected. I have a follow up with ID doctor next Monday so we'll see what he says. But I'm really happy I feel pretty good. I will try to take it easy. My dear friends from the homeschooling group are bringing dinner for a couple of weeks and dh is home, so it should be an easy recovery. I just remember being so thankful when I woke up (roughly 1 hr after "going under") that I had made it through the anestesia part

So we got a hold of our insurance co. Apparently, it's not covered under prescription plan, but it IS covered under medical. So we would have to either have it done at the hospital's infusion center, or order the shots throught their mail-in plan. Something to keep in mind if anyone else runs into this.

Very interesting article. I hope it works well for dd! I'll post soon on their progress (or herxing!)

Very interesting thread! Anyway, my own two cents... Lomatium Dissectum. I have not tried it yet but it was recommended to me by a mom whose son recovered from autism (it turned out it he had Lyme + viruses). She said to start slow (1 drop/day). You can get it for about $6 from Vitacost.

Do you mind sharing how much/for how long they took the Artemisinin? I read "Healing Lyme" and it almost all sounds too good to be true, but I am thinking with my dd10 we will have to "go herbal" since she does not tolerate abxs well. They tried doxycicline and she kept throwing up! So our LLMD is giving her Augmentin, Bicillin shots, and Samento. Please God let something work!