matis_mom

So, how do you all go about this kind of thing? Do you see the specialist once in a while and then go to the pediatrician for the monthly prescriptions? We are about 45 mins. away from our doctor, and about 90 mins away from Dr. Latimer... It would be great to get the pediatrician to work with us (they are only 5 mins away!) But I wondering if I will have any luck "educating" them... It's always worth a try. They have several docs at the practice, I wonder should I go for the older or younger ones?

Hi Stephanie, Very interesting to read your reply... I can definitely see both sides in my son... I will talk to the Dr. about trying out your yeast protocol. I had been searching online and was about to try the Pau d'arco, I am not familiar with Oregon Grape or Biocidin, but it makes sense to rotate things around. How much of each do you use? Do you use essential oils or capsules? I would like to have more details as to when/how/how much to take. We have been doing oil of oregano (I put it into a capsule), and we are also doing a lot of probiotics. I am also trying to keep him of sugar as much as possible. It would be a huge step if we could get the wetting under control! The more replies I get, the more it seems I need to get everyone tested. I know my 5-yo had strep this last winter, I can't remember exactly when, but I think it was after we all had that bad flu that started the whole thing... I need to start journaling who is sick when, my brain just can't keep it all in! I think I will just have to go talk to my pediatrician and lay all my cards on the table. Maybe once she sees the facts she will be willing to work with me. We live in a small town about 1 hr. from DC, and even though I'll do whatever needs to be done to get the specialized help Matias needs, it would be so helpful to have the pediatrician on my side so I can comfortable go get the other kids checked out as needed. Do you do any other herbs/supplements to deal with the strep? Or is your child on regular ABX? Thanks! Isabel

EAMom, Yes, I was thinking of that last week when the toddler was all out-of-sorts and ds started to go downhill... I just don't want to face the pediatrician... I guess I can just go to the Minute-Clinic at our local drug-store and have them run a strep test. Fortunately, we are homeschooling, so that cuts down a bit on the exposure, and I have to let everyone in our homeschooling group to please watch out and let me know asap if there is strep (or anything else) going around. Very interesting concept about them reacting to colonization... it will not be easy to keep everyone checked and clear. Thanks for the tip about Dr. Cunningham's lab... I'll get on that ASAP, I don't want to wait three months!!! Also, it seems some of you have more than one PANDAS child, is that common? Thank God our second oldest is the only one with issues at the moment, but I wonder if we will run into this again in the future. All your responses give me great hope but also a realistic approach... it seems even on the right ab it takes time, and then again some kids need IVIG or PEX. I just want to know exactly what will it take for him to get well, and go straight for that. But I guess things are not so simple, and I am grateful we are already ahead of the game by having found the right docs. Thanks so much for all the help! Isabel

Meg's Mom, Thanks for your post, it seems we have a lot in common... About the GI issues, have then run a complete stool panel. Mati's tests where sent to a place called Diagnos-Techs, Inc. They did a "Expanded GI panel". They checked for Fungi, Parasites, Bacteria (that's where the strep shows), Toxins, Giardia, Roundworm, Tapeworm, well... you get the idea, nearly anything that could be wrong... So at least we know there are no other issues besides the strep That's one thing I appreciate about Dr. Zachrison's practice, they look at the overall picture, not just one thing. As for the BT, yes please I'd love to see what you have been doing. How do you PM someone in this list? And, what is ERP? My brother-in-law is a psychiatrist AND a neurologist, he recommended the book "Stop Obsessing" which is pretty hands on, but is really written for adults, so even though it has helped a lot (it really helped us identify how much the OCD was limiting his activities), I think we all would greatly benefit from your book recommendations. Your dd's symptoms are very familiar to my son's, except his are not so severe, my heart goes out to you. My oldest went through a scrupulous stage, but that has resolved on it's own. I will definitely insist on a higher dose of abs. and ask for either Augmentin or Azith. What he is on right now is not working, and I am really concerned about his joints, as they keep swelling and hurting off and on.

Oh, I forgot to add... about the Nystatin, I don't think it helps with the strep, I just think it helped with the bed-wetting, which is listed as a common secondary sympton of PANDAS, but it might very well be more of a side-effect of the intestinal flora being totally out of control. I guess I'll stay up late tonight again checking all those links you ladies have sent. Thanks again!

Thanks all for your replies! It is so good to have all this extra info before heading to the docs at the end of the week. I really feel we need to try a stronger/different antibiotic before trying psychiatric drugs. I also feel reassured in my decision to go see Dr. Latimer. I know as bad as it seems for us as a family, we can still manage him and lead a pretty normal life, so we have time. Part of me wants to save him the pain of going through all the anxiety, but I know even if we did find a med that works well, they are always tricky to get off of. I will definitely try that Cunningham test... is that something Dr. Latimer would run, or do I just contact Dr. Cunningham directly? What exactly does this test determine? Thanks for all the answers and support. I will post back this weekend to let you know how the appointments went. Isabel

Thanks for the welcome! It's so good to have others out there who understand... not that I'm happy other are going through this, though. About strep in the gut, the doctor suspected it because of some gastro-intestinal issues he was showing, but they really were not anything serious, just one more piece of the puzzle, and it turned out to be a key piece! They found it through a stool sample, collected over a couple of days. I would recommend to anyone who has had GI issues off and on to ask for it. Especially for those whose swabs keep coming back negative. The treatment is pretty much the same as for strep throat, I've been googling it and nothing specific comes up as to how to get to the gut. It's harder to erradicate, it seems. Lots of probiotics and a good diet help tons. I am really hopeful this week's appointments will get us back on track. He seems in a very happy mood today, although still wanting to wash (or rather scrub like a surgeon) very often, but we have been limiting it and he is so cooperative, he's just a sweet kid. I am so thankful for that! He takes all his meds, vitamins, anything I ask him he will do. We are trying to do some Cognitive Behavioral Therapy at home, and we have talked a lot about why he feels the way he does. At his age he can understand things very well, and it has helped him accept where we are at now, and that we need to work together to heal him physically, but also work on other things that are just not cured with a pill.... I'd like to hear if anyone has any experiences to share that way. At some point we thought it would be useless to do BT if the problem is physical, but now we are attacking this from all sides. Got to go now, thanks for this group! Isabel

Hi all, I just wanted to introduce myself. My 12-yo son has been diagnosed with PANDAS. It took a while to realize what was going on. It has probably been building for some time, but things got markedly worse last february after we all had a very nasty flu. He was never the same after that. We all recovered, but he seemed to lapse back a week after we were all well: high fever, ear ache, vomiting. I took him in and they said it was nothing, they totally dismissed it. After that he was always tired, had a hard time concentrating, and then we started noticing the compulsive handwashing. Along with that came other behavioral changes, like not wanting to go outside, and absolute fear of shoes (which in my house are all over the place -- seven kids!), not touching doorhandles or faucets with his hands (he uses his elbows), not wanting to use the hand towel or kitchen towel to dry his hands (that of course makes his skin a lot worse), not wanting to pet the dog. We went back to the pediatrician several times saying, "there is something wrong with him, he's just not himself" (although at that point we did not mention the OCD, because we did not think it was related to any of the other physical symptons). We were back several times because of fatigue, swollen wrist (she totally dismissed that one!), pain in the knee (she did do a Lymes test). When the OCD got really bad, through God's grace, I heard a friend of mine talking about a friend of hers whose daughter had had similar issues and had seen great improvement after seeing a certain doctor. So I called this lady, feeling a little awkward about invading her privacy, and she was so willing to share and help. So we went to the offices of Dr. Zachrison in Fairfax, VA. We saw Dr. Mian, who is the one who usually sees children. I gave her ds's life story, the swollen wrist, the lack of attention, the OCD, the fatigue, the upset stomach off and on. She look him over and said, "I think it's strep." She ordered a bunch of lab tests (17 viles of blood!!! the staff was so good --she tought we would have to do it two separate days but they were great and got it all done in one sitting, which was amazing because he always melted down anytime anyone mentioned needles), including x-rays of his wrists, a cardio consult, a gall-bladder scan, and stool and saliva tests. It felt so good to have someone take him seriously! The tests showed strep in the gut, elevated titers, adrenal fatigue, and some other issues. He has been on amoxicillin, cypro (after the tonsillectomy), amoxicillin again, and now his on cefuroxime and hydroxycloroquine. The last week he has not been doing well, he almost seems back to where we were three months ago. The doctor has been very proactive and always listening to our concerns. I sent an email saying I was worried the antiB was not working and they called from the office saying Dr. Zachrison (who is the big cheese there) would like to see him. So we are going there on Thursday. Additionally, at the last visit they suggested we see a psychiatrist for some anti-anxiety meds to help him through this rough time. We are open to it but thought before we go that way we should get a second opinion. We got Dr. Latimer's name from PANDASNETWORK, so we will be seeing her on Friday. Also, ds has been having bed-wetting and day wetting issues. This of course does not help someone who is concerned about germs... he has been changing clothes a lot every single day, it is becoming exhausting to deal with the laundry! But what can I do, he really cannot controll it. Does anyone have any tips on that? It seemed to get better after the tonsillectomy while was on Cypro + Nyastatin. I though it was the Cypro, but now I'm thinking it really is a yeast/candida issue and it was better because of the Nyastatin. I will mention this to the Dr. on Thursday. Anyway, this is where we are. I am thankful we have a diagnosis and hopeful that this week we'll get some answers. I am just concerned that the antibiotics do not seem to be working (or maybe they are working and all the flare-up is just the beasties dying off and giving out more toxins?), so I will see if I can get them to test the antibiotics in vitro instead of on the child. He had yeast/candida issues even before we started with the antiB and I am worried about the side effects of being on them for so long. He is taking tons of probiotics and other good supplements, but they are costing us a fortune, and it almost seems to be money down the drain with all the antibiotics he is taking... Has anyone here tried any alternative/natural remedies? Thanks! Isabel

Hi there, My son never complains of a sore throat. I only remember him having it once, and they only swabbed him because I went in with a sibbling who tested positive, so they were kind enought to test everybody. But, besides that instance, I have no clue how many times he's had it, because he has a very high threshhold for pain... He is one of seven and I don't take them in every time they feel off, otherwise, I would be there twice a week! Of course now I am a little more aware, sigh! He has been diagnosed with PANDAS, but the strep was found in his gut. So if anything, check for other symptoms: upset stomach, just not feeling well, vomiting. Dont' just think THROAT, it can be in other places... Ask that they do a stool test. Isabel

Because we get strep monthly, and the swine flu is so scary and rampant, have any of you all considered homeschooling your children? Between the asthma, and constant strep we are exposed to, I'm thinking it may give my daughters time to heal from the constant assault of germs. Hi there, We are homeschooling (always have), but kids are kids and you will still be exposed to stuff. Even if you keep your PANDAS child home, other family members come and go and bring stuff home. So don't go into it thinking it will cut grealy on the exposure. But the good thing is, if you know there is something going around, it is a lot easier to keep the child home, you don't have to worry about falling behind, you just stay home and get done whatever you can. It has been a blessing for us on the "bad days" to be able to switch gears and do something else, or just leave school for the afternoon, or just for another day. My son's PANDAS manifests as anxiety and lack of concentration, and some mornings I can tell he is just not there, and there is no sense in trying to get everything done. I can get him to do certain things that will take his mind away from his worries (about washing hands), I can have him do his breathing counts (to help him relax), I can send him to read a good book, etc. On the good days we can catch up and so far, thank God, we have been able to stay on track. I can't imagine how he would have handle this is a school setting. So do consider it for the flexibility it offers (especially if the OCD is affecting their schooling) As far as contagion goes, it is so hard! We are trying to keep things "normal" for our ds, so he is still doing soccer and scouts, and we are in a homeschooling coop. I'm in a bind because his anxiety focuses mainly on germs, so he got to a point where he would not go play outside or pet the dog, he would walk around the house with his hands clutched to his chest, he will not touch doorknobs, he does a lot with his elbows and with his feet instead! So if I get too strict about not being exposed to stuff, I am reenforcing his fears... anyone else have the same problem? Wrestling season starts soon, but I'll definitely keep him out of that one, although he loves it. It's just too much physical contact, and then when they have meets you are stuck in a stinky gym with about 500 other people... I don't think so! Isabel

Hi there, My son never complains of a sore throat. I only remember him having it once, and they only swabbed him because I went in with a sibbling who tested positive, so they were kind enought to test everybody. But, besides that instance, I have no clue how many times he's had it, because he has a very high threshhold for pain... He is one of seven and I don't take them in every time they feel off, otherwise, I would be there twice a week! Of course now I am a little more aware, sigh! He has been diagnosed with PANDAS, but the strep was found in his gut. So if anything, check for other symptoms: upset stomach, just not feeling well, vomiting. Dont' just think THROAT, it can be in other places... Ask that they do a stool test. Isabel

Crap! We are on zyrtec.......!! Also, I totally agree, everyone (doctors, friends, co-workers, parents) all told me (some even still do) that all this is NORMAL KID STUFF. We have low titers and the not as obvious OCD behavior (at least to someone who is not well versed with OCD like me). We're not an easily cured by antibiotic PANDAS family either but luckily the antibiotics help in the mean time. Susan I does just make you mad, to think a lot of the symptons (tics, swollen joints, fatigue, decline in attention, etc.) that our current Dr. put together in 30 minutes of just talking to us had been brought up to the pediatricians in numerous occasions and no one connected the dots... My heart sunk when she said "it's strep, we need to check his heart too" He just happens to have a murmur, which turned out to be nothing, but to think he could have had some permanent damage, it made me so mad that no one even bothered to check it out. His wrist would swell up and hurt every now and then, and all the pediatrician could say was "it happens". IT HAPPENS??? that's rheumathoid arthritis, it doesn't JUST HAPPEN! We don't all just have our joints swell and hurt out to the blue at the young age of 11!!! Sorry, I'm just venting... So glad we found a good doctor, so glad other moms out there are sharing their experiences... Isabel

Hi, This is my first time posting. My 12-yo has been on antibiotics for three months... His problems started (or we started noticing more) last feb. after we all had a pretty bad flu. He started having stomach issues, OCD, fatigue, swollen joints. We kept going back to the pediatrician saying, "he's just not right." Thank God, through some friends of friends we found a Dr. who diagnosed him right on the first visit (extensive labs proved he has strep in his gut) We started of with Amoxicillin, then he had his tonsils out and they put him on Cipro for 10 days, then back on Amoxicillin, now they have switched to Cefuroxime plus Hydroxychloroquine... We are going back to the dr. this thursday, I am going to ask if they can do another stool test, and then run a panel to see in vitro which antibiotic works. I know this can be done, they do it routinely in other countries, I don't know why here they keep trying them right on the child, especially with all the damage long term use causes... My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far. So, my question is, or rather my questions are: 1) How long does it take before one can say "THIS IS NOT WORKING" 2) Can anyone who has seen this through tell me how long it took on antibiotics? 3) Has anyone had their doctor test in vitro to find the right antibiotic? Another question I have is about Ibuprofen. I read in PANDASNETWORK it seems to help. I guess it just brings the swelling down? I can tell when my ds is having a bad day, even his eyelids look puffy, I don't even want to know what's going on in his brain... We are seeing our regular Dr. on Thursday, and then we are seeing a neurologist, Dr. Latimer, on Friday. Dr. had recommended we see a psychiatrist for some anti-anxiety meds to help him through this rough patch, so we figured we should better get a second opinion before we go that route... Thanks for all the info and please reply with any answers, tips, suggestions, encouragement?