matis_mom

Thanks all for the replies! I put in a call to Dr. Latimer to ask if she still OK to do steroids if there is a suspicion of Lymes. I had brought this up at the appointment, but the test results are not that easy to read, all we could see was negative for this and that. However, looking at the results closer, there are minute amounts of IgG for Bartonella and Lymes, not enough to call it a positive. The thing judging by his symptoms, the "clinical" diagnosis is Lymes. And in any case those labs results are not 100% accurate... and there is also the fact his strep is so high, the body is only dealing with that at this point (strep titers are high, although they are coming down from the nos. we saw in July). So no one can say for sure he does not have it. We are surrounded by woods and see deer often, and we have pulled a tick or two. My husband had Lymes last summer. Just to clarify, he has been on antibiotics since July. So we are definitely continuing with that, maybe changing the Cefuroxime to Augmentin. He is also on Vancomycin (another abx, kind of clears out the gut), and Plaquenil (for the joint swelling). I will wait for Dr. Latimer's call and see. At this point, I think I will give the antibiotics more time. Like a friend of mine put it, "what would be the risk of NOT doing steroids right now?" It seems at this point waiting is the safer option. What would I give to be able to look into the future and see how the options would play out!

Thanks Vickie, your opinion is very helpful. That's what I was thinking of doing, particularly because our naturopath suspects underlying Lymes, and steroids could have very adverse effects if he does have Lymes. The few tics/tourettes he has, Dr. Latimer noticed, but did not seem concerned about. I am leaning towards doing just the Augmentin for now and see. Maybe I will add daily ibuprofen to bring down the swelling and see if that helps the bedtime anxiety. Did anyone here see improvement on antibiotics ONLY? Wasn't that Sammy's case (I still have not read the book!), it just took a long time? I am asking these questions not only for myself, but to try to paint a clear picture to my dh, who just wants his son to get well soon! I now one way or the other, from reading other people's experiences in this forum, it will take a long time, and we will see some bumps along the road. Isabel

Very few tics, only when tired/on exacerbation. Have not tried Ibuprofen. Have been treating for strep since July.

I forgot to mention, Dr. Latimer said that the steroids where not only to get him back, but also to see if he'd be a candidate for IVIG, and she was also looking at his IgA numbers to see if we could use that to help with insurance coverage... So I got the impression she's definitely considering doing it sooner rather than later...

Hi all, By now you are all probably sick of hearing my story... But here we go again, I just cannot decide what to do. We were working with an MD/Naturopath since July. We have seen improvement, but neurological/behavioral symptoms are still there, especially after a flare-up when my non-pandas daugther had strep. We saw Dr. Latimer last week, she recommended high-dose Augmentin + 1-month of steroids. I filled the prescriptions but could not bring myself to start the steroids until after our follow up at our other doc. We went for a follow up with our naturopath today, to get the result of all the latest tests (some of which I had already gotten a copy of and brought to Dr. Latimer). Strep antibodies are still high, and it turns out there is a bit of a heavy metal issue. Lymes and Bartonella came back NEGATIVE, although there is a minute amount of antibodies present (no enough for a positive or equivocal result). Dr. still thinks this is simply because his strep is so off the chart. At the end of the appointment I brought up our visit with Dr. Latimer. They clearly said DO NOT GO WITH THE STEROIDS. They are just a patch and you'll be back to square one in a few months. He has had strep for probably 1 to 2 years, and it will take another year to clear it, but they are confident all of the other issues will resolve when we take care of the strep. So, my husband and I do not know what to do. I just put in a call to Dr. Latimer, to ask specifically if it's safe to do steroids if there is even a small chance he might also have Lymes. My husband is trying to understand this and help me make the decision, but it's hard to relate all the in-and-outs, all the individual variations, what works and what doesn't for certain kids and not others, etc. He is under a lot of stress at work and studying for an exam too, so I really cannot ask him to drop everything and spend hours researching this (like I have, and I still don't know what to do!). But neither one of us is a doctor, and the two doctors we have consulted are proposing different courses of action (although at least they agree on the diagnosis!!!). So, I don't want this to turn into a big conventional vs. alternative debate on this forum, but I would like to hear from those of you who have been dealing with this for a while, as far as what long-term results you have had one way or the other. We could go with Dr. Latimer and see good results in a month (or not), and then have it come back worse (or not), or we could stick with Dr. Zackrison and go the slow and steady route, but really one way or the other we don't know which will be best for him. There is just no telling how he will react. We are trying to do right by our son, but just cannot seem to decide one way or the other. Since the last flare up things have settled a bit and he is getting through the day just fine, needing a little help to shorten his rituals, so it's not like there is an impeding crisis. I some much appreciate you all lending an ear and sharing your experiences! Isabel

I know, it's a pain to spend money on the pets, but think of all the money we are spending on medical anyway because we cannot seem to erradicate strep from the house! I don't know how picky your cats are, but maybe you could try opening an abx capsule into something they really like instead of doing the shot? My husband forced the abxs into the dog this evening, I don't now why he's doing it the hard way. That dog's so desperate for food, I plan to just break an egg and open the capsules on top, I'm sure he'll leak the bowl clean! He's a sweety, but a 100-lb sweety, and I am not going to wrestle him!

Susan, My son also has elevated HHV6 titers... I can't find the number right now. Do you mind sharing what your daughter's numbers are? Isabel

Chap, I would do the following a) get both of them tested for strep ask for either high-dose Augmentin or Zithromax c) look in this forum for a thread that has link to PANDAS articles and print some of them out to bring to your doc. I think it's at the top under "helpful threads" To give you and idea of dosage, my 33kg son on Amox/K Clav 875-125 twice daily (so for your daughter you would do about 2/3 of that) Hope the antibiotics work and you find an intelligent doctor who is willing to educate himself! Isabel

Well, look at what I've found... I'm only posting the highlights, click on the link for the full article. http://www.vetmed.wisc.edu/pbs/zoonoses/St...streptdogs.html Group A Streptococcus: are dogs an epidemiologically important source of infection for humans? ....This tutorial's author has personally been involved in two clinical situations in which a GAS was cultured from both the household dog and from children suffering from recurrent pharyngitis. In both of these cases, all of the people in the house had been treated simultaneously with antibiotics without clearing up the problem, but when all the people in the household and the dog were simultaneously put on antibiotics, the problem resolved. How about cats?: To this author's knowledge, there is only one case report of zoonotic GAS involving cats. (Roos et al., 1988) Treatment: The antibiotic of choice for S. pyogenes is penicillin. At least I know it was $80 well spent!!!

I know what you mean! I hate spending money on the dog when we have so many other medical expenses. Maybe for now you can just make sure your son is not the one feeding/caring for the animals, and do what you can to bleach/disinfect any areas they may have contaminated? Our vet said it's very rare for dogs to have Group A strep, but they do have Group B in their mouths, I don't know exactly what this means for us in practical terms. We are just going to treat him and minimize contact (just when my son was able to play with the dog again ) But hey, priorities are priorities, if the dog has to go, so be it!

Went back and did the math according to Buster's post..."I'm pretty sure the maximum amount of clavulanic acid is 10mg/kg/day." So that would be 10mg x 33kg = 330mg We will be doing 2x125mg = 250 mg.... we're safe! Thanks all for the replies anyway.

dcmom, We are homeschooling, and keeping a schedule certainly helps. But I think if she's only in 1st. grade, you don't have too much to worry about. You can do tons of read-alouds, interesting science videos, nature walks, and some math every day. Homeschooling allows you to be creative and if let's say a particular day she is not interested on this or that, you can just go for a walk, get some fresh air, and try later. Don't worry too much about academics this year, just focus on getting her well and keeping YOUR sanity. Try to find a homeschool group and you'll find tons of opportunities for socialization (for her) and support (for you). If you need more specific advice, let me know. Isabel

It is a 100-lb dog, so maybe that's something to do with the cost. I had no idea what the other abx option was, but if we have to do another round, I'll try to get a prescription for Zithromax and bring it to Costco. I had no idea you could get dog prescriptions there, good to know. We have a friend who is a vet, so he could even write it for us. Thanks ladies for the tips!

Isabel - what have you decided to do? after your post the other day, i was remembering when i was trying to walk the line between our ped and our naturopath. we'd just switched ped b/c the initial was so unhelpful. he'd been on 5 days of azith which was horrible. both the previous ped and naturopath were ready to write him off as a "carrier" - ped saying all was over and naturopath saying we had to work on his gut and more abx would make it worse. new ped wanted 30 days of keflex and sinus CT (which ended up showing all 6 cavities infected). i remember all day back and forth on the phone with the ped, the naturopath, my husband and my mom. i don't smoke but i was chain-drinking coffe mochas - only serving to make me more high strung. i really felt we hadn't addressed the strep enough - we went with the new ped and keflex and in 3 days he was back to pre-pandas self. it is so hard but if there's something leading you in one direction, i say go with that. We've decided to bring out the big guns! My husband is a lot more comfortable with conventional meds, and like a friend of mine put it, if you had all the time in the world, go natural, but when it counts, go conventional and fall back on the natural stuff if needed. I feel each day that passes is a day waisted, and even though I thought he was "not so bad" going through the evaluation with Dr. Latimer was painful. He does have a lot of anxiety, he's just keeping it all in. At home, it usually comes up at night. It really is wearing him down. But I know what you mean about the gut issues. I will keep on the probiotics, the good diet, and some of the supplements. I feel the brain is the main problem now, and even if the gut suffers for a month, if this works we can re-evaluate in a month and maybe cut down on the abx. The gut will recover in time. I figure we need to hit the strep with all we got right now and once it's under control, we can look into kinder ways to keep it from coming back. Now if the augmentin does not work, I don't know what I'll do... we'll cross that bridge when we get to it. I am scared to do the steroids, but I feel we need to give it a try. Every kid is different, so there really is no way to tell who is going to do better with what. As much as I hate to accept it, we'll just have to go through the trial and error. I will keep you posted on how it goes! Isabel

Are you saying that 125mg (twice a day) of clavulonic acid is too much for a child? Or that 250mg clavulonic acid (twice a day) is too much (if they decided to give a Saving Sammy 1000mg 2x daily)? I suppose if you wanted to give something that was closer to Augmentin XR 1000mg you could give 500/125mg Augmentin plus a regular 500mg Amoxcillin pill twice daily. ??? so then you'd have 1000mg/125mg What do you think? Is Augmentin XR hard to get? I am bring this topic back up... My son is starting AMOX/K CLAV 875-125 twice a day. He is 12 and weighs only 77 lbs (about 33 kgs.) . Is this too much clavuconic acid? It is only a 1-month prescription, so I'll go ahead with it, but I would like to know for when we go back in a month. Thanks!

At our appointment with Dr. Latimer she recommended we treat the dog too... she said not to spend money on testing, just tell the vet you want him treated and if they won't do it, go somewhere else. Our vet was saying Group A strep is very uncommon on dogs, and usually you'd see symptoms, but we basically told her what our son has is also very uncommon, and he is going through some pretty heavy treatment here, so we don't really mind putting the dog on abxs, even if he doesn't need them. So now the dog (Frodo) will be on Amoxicillin too! Another thing she recommended was to bleach down everything. I was only using bleach on toilets to cut down on the chemical load, as our other dr., who does more of the natural/homeopathic thing, suspects some chemical sensitivities. But, I'm back to mainstream approach here, so that's my project for the weekend... open all the windows and bring on the bleach.... FUN! We are also going to dissinfect the well/pipes, which we had been thinking of doing anyway. I am kind of trying to put all my ducks in a row before I start the steroids. It's quiet an undertaking with seven kids! Washing sheets, changing toothbrushes, and anything else I can think of. The vet also said dogs have strep B in their mouths, so it's probably best for my PANDAS ds to stay away from him (his germ-phobia had kept him from even playing with the dog for a long time, now he's back to petting him and running around with him, we'll just make sure he is not the one feeding him and avoids direct contact with the mouth). I appreciate any thoughts/tips you ladies may have, and if anyone else has treated their dogs, I'd like to here what kind of abxs they used. We got amox, which was $80 for a three-week treatment. The vet said she could give him something stronger, but it's about $600! I need a prescription plan for the dog!!! Isabel

dcmom, I suspected it because he always had GI issues, nothing major, but he was always gassy, and either constipated or had diahrrea. He would complain of stomach aches off and on (although in general, he never complains about anything). He also had a couple of projectile vomiting episodes after our bad flu in Feb/09. They found it through a stool test (Complete GI Panel), run through Diagnos-Techs (aparently there are not a lot of labs that do this). I am not sure what would be your best bet to get this done. I have a friend who highly suspects this and has been to the pediatrician and the gastroenterologist and they are both reluctant to run stool tests, I don't get why. You might have to resort to calling the lab directly to have them send you a collection kit and do it out-of-pocket. He also had high streptozyme, ASO, and Dnase titers, which have gone down after 4 months of antibiotics and getting his tonsils out, but they are still way above normal, so I am not sure we are all clear yet. He does seem a lot better though, at least physically (before he was always tired). We are starting high-dose Augmentin and steroids next week, I am hoping that will do the trick! Isabel

ilovedogs, I have to agree with the others that 10 days on antibiotics with no change, and few or no confirmed strep infections are no reason to rule out PANDAS. My son has strep in the gut, so the symptoms are not that noticeable, and definitely not what people tipically consider strep. Have they run any blood work to check his antibodies? Does he have any GI issues? Your son sounds a lot like mine. While some kids "let it all out" and have the rages/out of control behavior, for others the battle is all in their mind. It is so hard to help them out! My son has a lot of anxiety, accompanied by OCD and some tics. He is very reserved, and usually opens up only with me, ocassionally with his dad. I don't think he's doing it to get attention. I just think it's easier for him to talk to you. And if it is PANDAS, there is not a whole lot you can do to decrease the anxiety until he gets proper treatment. Before we knew what it was, we tried talking to him, reasuring him, trying to ignore him, whatever. The point is the anxiety is there simply because his brain is swollen and sending him the wrong signals. So I would first rule out PANDAS, or any other physical component. Another thing you can do is to start a journal and see if you can tie the increase in anxiety to any other factors (food, rest, exposure to illness, stress, etc). It might take some time to find the trigger. As for managing the logistics of trying to get through the day, we found deep breaths helped him to relax a bit. It also helps to talk about those irrational toughts at a calmer time and try to get him to admit that these are indeed IRRATIONAL thoughts, and therefore if they come again, he should do his best to dismiss them. We used a book called "Stop Obsessing", it has a lot of good ideas. Like someone else mentioned, some obsessions are just in the mind, there is no behavior or external trigger attached to it, but they are still obsessions, and they are very disruptive. Anyway, you have worked with a therapist before and I'm sure you are aware of many of these things, but don't give up on trying to find the root cause of his anxiety. Hopefully it's not PANDAS (I wouldn't wish it to anyone!) BTW, we homeschool too and have had to get creative about our schedule in order to get things done, but we are managing. Isabel

Debbie, Please keep me updated on what the rheumathologist says. We are starting new abxs and steroids so I am hoping that will help the joints too, but I might have to go see one too!

Karen, I did not ask. I have not been given it to him for a while. Right now the plan of action is to just keep things simple. I will do the prescriptions, the probiotics, some vitamins, and maybe keep up the silver to ward off viruses. I am really counting on the Amox/K Clav to do the trick! Isabel

Prednisone tastes terrible and crushed up is even worse. Pred can cause some really weird behavior itself. Left me feeling jumpy and irritable like my skin had nettles. dd9 didn't seem to have a problem with it. Buster We are starting a 4-week course, Dr. Latimer said to give it ALL IN THE MORNING, yes, even the first week it's 4x10mg tabs, all at once, in the AM. She did warn it might make him jumpy/irritable... I'm bracing myself, but hoping he won't have and issue with it. She said if this doesn't work, we would move on to considering IVIG, so it seems one does not exclude the other. HTH, Isabel

Hi all, A bit nervous about starting steroids in the middle of flu-season... Luckily it's already been through the house, so I guess we are "vaccinated", at least for that strain. What precautions (if any) did you all take while on steroids? We are homeschooling, but we have some coop classes and sports, plus a busy social life. How paranoid do I get? Isabel

Thanks Memom, I was looking at a thread where others posted their dosages and it seems the dose is strong, but I am happy to try it. We've waisted about 4 months already on other abxs! Isabel

Jack, Wow, all the way in Beijing and with no doctor to guide you! I feel for you. About probiotics, she did not recommend any specific one, she just said to change them every now and then (instead of doing the same one every month). I don't know what you have available, but over here the good quality probiotics are kept refrigerated, so something you get off a shelf would not be your best choice. Also try eating yogurt and kefir, and other lacto-fermented products, you might have more of that available. BTW, Dr. Latimer does phone consults if you ever need it. All the best! Isabel

Thanks so much for taking the time to type it all down! We have done some CBT following a book for grown ups, but we'll definitely get the books you recommend, and start working on it again. Dr. Latimer said it doesn't really work, but I think she meant it doesn't really work BY ITSELF. I know a lot of what I see are very hard set habits by now. We are starting new abxs and steroids tomorrow. I will give it a week and then slowing start picking apart the monster! I am so hoping this will work!