matis_mom

Great article! I find it specially interesting because my son presents the joint pains/swelling and the pediatricians totally missed it, grrrrr, I'm still having trouble letting go of that one... breath in, breath out.... Thank God the heart checks out OK, but my heart sank when the Dr. explained the whole picture and told us to go see the cardiologist, we were so worried... By God's grace we called and they had a cancellation the very next day (otherwise we would have had to wait a month!), what a relief!!! But still, it's always in the back of my mind, as he does actually have a murmur.

Hi there, My son has strep in the gut. It was found through a stool sample (a complete GI panel, I think that's what the test is called). They were treating him with Amoxicillin, then switched to Cefuroxime plus Vancomicin (it's supposed to clear the intestinal track, if I understand correctly) He is also on a ton of probiotics. This protocol plus removing tonsils and adenoids made a huge difference in his overall health (before he was tired all the time, had tummy aches, bowel problems, etc), but I did not see that it was helping much with the neurological symptoms (he is more the quiet, OCD type). Then we saw Dr. Latimer and she switched him to Augmentin 875 2xday, plus a 4-week steroid burst w/taper, which put him back to his old happy self. He relapsed due to exposure to strep, and now is on Augmentin XR 2xday. He is doing better overall, still reacts to strep, but not nearly as bad as before. So, I don't know for sure if the strep is gone from his gut, but he is better. We still have a long way to go but things are manageable. If you have any other questions, let me know. If you want to call me PM me and I'll send you my number. Isabel

Sheila, I also wanted to thank you for providing this forum! It's been a life-saver for us. And regarding people "being told it MUST be PANDAS", I understand sometimes us PANDAS parents might see things a little different (and yes, we can be a little paranoid about strep ), but we are just sharing our experiences, that's all. Like WorriedDad said, we don't want to cause anyone any pain or grief, but many of us have suffered a long time because no one recognized PANDAS in our child until years after onset, and when a new parent reports symptoms that strongly coincide with our experiences, we encourage them to get it checked out so that if it is PANDAS, they can get the right treatment. Thanks again for this forum, Isabel

Thanks! I'll keep that as a reference and let you know if we go through with it. Looking at the list of illnesses they DO cover it for, I don't see how my son could fit the criteria, but we'll see...

Hi there, You did the right thing. You managed to keep it together and make a good decision to keep everyone safe. How's she doing now? Thank God for your mom I was trying to get your story straight and looking at your posts... you started the Omega 3-6-9 last night, is that right? Do you think that might have triggered this? My son is on a ton of supplements, but after reading a post (I think by Dr. T?) on how some kids' immune system is on overdrive (and that seems to be my son's case), I discontinued anything that is meant to "boost" the immune system. I don't know, I'm no scientist, but it seems to me if his immune system is already rev'd up, why add more fuel to it? Just a thought. I hope you never have to go through something like this again, but try to keep a journal and it might help find the trigger. Let us know how things progress, and do try to get everyone tested for strep. Isabel

Thanks so much for sharing your story. Hats off to you for all the hard work and standing by your son through it all. We are homeschooling too and I know the tough days can be challenging, but you will reap the benefits, believe me Enjoy the journey, all the best, Isabel

I only know of this thread from Canada which specifically approves IVIG for PANDAS http://www.ncbi.nlm.nih.gov/pubmed/1739776...mp;ordinalpos=2 My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it. LLM, I have Cigna too and it looks like we are heading for IVIG... Would you mind sharing if you've already done it and if and how you managed to get it covered? I have to say so far I am very please with the coverage as far as meds and out-of-network doctors go. You can PM me if you prefer. Thanks! Isabel

Melanie, With this weatherit's normal to have dry skin, but keeping a vaporizer or humidifier on helps a ton all around (skin, sinuses, etc.) But if he already has a rash, make sure it's not impetigo, that will certainly throw him off. My son was a mess when his sister had it in January. Even if it's not impetigo, it's really important to keep their skin healthy. If their skin is dry/cracked, they are a sitting-duck for picking up an infection through the skin. My son has the hand-washing thing going (actually, it's pretty good right now), so we really need to make sure he keeps putting on lotion and sometimes we do cotton gloves at night, or else he'll get these really nasty cracks. Sometimes we use castor oil instead of lotion, it works well for the face too. Isabel

Faith, Yes, it is a bit of a complicated topic to get into. EMF's as a general term, relate to what comes from any electrical device. If your house is wired with A/C (which basically everyone's is, unless they've had it very specially built), you can turn off all the lights and even unplug every device from the wall, and there will still be EMF's spewing out from the wiring leading to all the outlets. This A/C (alternating current) works very hard, going back and forth, trying to be always ready for you. But, it does increase when you turn stuff on. And, more electricity flows, and more EMF's generated, just by having things plugged in, even if turned off. That's all EMF's generally. But, in the wireless category, EMF's of a specific range of frequencies, are called microwaves and are used to cook food or communicate using cellphones or wireless computers. For some magic reason known only to the people who make laws and buy goods, it is important that microwaves not leak because they can seriously harm you. But, magically, when used for communication, they are perfectly safe, absolutely no problem at all. Anyhow, from my measuring device, some cellphones, when on, are constantly emitting microwaves, like they are constantly sending communication. Others seem not to. I can see needing to receive communication (to know if call is coming), but that doesn't require sending microwaves. Computers set for wireless will have a switch or button to turn it off or on, and when it's on, it is always sending microwaves when the computer is on. I learned this the hard way before I was sure microwaves were a problem for me, and my company gave me a new laptop to replace the older one. It took a while of discussing with others to figure out what was causing all the headaches, but the solution was easy to turn the switch off and keep it there. Cellphones and wireless computers are the most commonly discussed items. But there are lots of other devices, like security systems, bug-killing devices, a few others mentioned in this thread I believe, people continue to be creative in using these things. You really have to kind of think about what technology you have and how it could do its job without SENDING communication through the air. Satellite dishes are no problem, because they are just RECEIVING wireless, and then normally hooked into the home/TV via cables. Of course, the other reality is, you get them here and there when you drive by the street. There are some cities like this, no matter where you are, you've got it. And if you have a neighbor, particularly if you live in an apartment, using wireless, particularly a computer network which even for individuals is getting more popular, then you can get it just because you're close. That's the beauty and problem of these things--they don't have boundaries, they just travel. There is always shielding in these cases. To really know what you're getting, what you have, you can buy a measuring device, I got mine at lessemf.com, they are great to speak to over the phone, to help through so many choices and confusion. A first step might be just to try shutting down the obvious items in your own home and seeing what happens. Michael Thanks Michael for that post, I just turned the computer thingy "off" Also, I orderer an EMF meter from Amazon, I'll let you all know how it works...

Very interesting... my son has been doing worse since last Monday, and it just so happens to be the day we got our wireless computer connection (it's like a little cell phone plugged in to the laptop) I am going to try tomorrow not keeping it on all day, just when in use and see what happens. For those using cell phones... don't! Keep them for emergencies only... beside the EMF thing, they are also thought to cause cancer/brain tumors. Interesting too about keeping other things off, I had never though of that. Seems like an easy thing to rule out.

Poster name: mati's mom Location: Northern VA Last update: Mar-1-2010 Childs gender/year of birth/present age: male/1997/12 Brief history of symptoms/when they started: Started showing OCD Feb/09 after bad case of flu (or so we think?) and possibly strep Any previous diagnosis, i.e. autism, asbergers, pdd: NONE PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) OCD/anxiety Results of any testing done: Jul09 Oct09 Feb10 ASO: 415 371 261 Dnase: 680 480 404 Streptozyme: 200 100 Strep: (Stool Test) Alpha Hemolytic Streptococcus - Moderate / Corynebacterium species - Rare SIgA: 17 (normal between 400-800!) CamKinase: 168 Other: Antibiotic use history: (include weight as a guideline - 80 lbs) Amoxicillin (took for 2 months - no longer taking this) Cefuroxime 250mg 2xd Plaquenil 200mg 2xd Vancomicin 125mg 1/2 capsule every other day Cipro for 10 days after tonsillectomy Augmentin 875 2xday (Dec 2009) Augmentin XR 1000 2xday (Jan 2010) Tonsils Out: YES (Aug09) Doctor and what protocol they suggested: Dr. Zachrison/Dr. Mian - Antibiotics and lost of supplements to boost immune system/help detox Tons of testing to see what other things may be contributing. Dr. Latimer: Changed abx to Augmentin, tried steroid burst with great results but we keep having set backs with re-exposure. But overall, much better with just the change in abx. Other doctors that were helpful and why: We will consult Dr. Barbey-Morrel (infectious disease specialist) to figure out if we have a carrier Steroid trials and detailed experience: 1 month burst w/taper down (40mg/30mg/20mg/10mg). 99% back to normal by the end of it. Quick relapse due to sister getting impetigo (his syptoms started a couple of days before she showed any signs!) Special section on those persuing IVIG or PEX and what the details were: Additional therapies sought: Supplements used: Colloidal silver Multigreens Bio-Inflammatory+ B-complex Extra b-12 Fish Oils Digestin TG-100 Night-Rest GastroThera Klaire Labs Complete Powder (probiotics) Other meds used: Plaquenil for joint pain/swelling Nystatin for thrush Any 'other' pertinent info: Isabel

Thanks so much Lynn for all the details you included, your story sheds a lot of light into our particular situation. My ds12 is doing better on Augmentin XR, and was 100% back to normal after the month-long steroids, but he keeps sliding back every 30 days (almost exactly). I believe my dd7 is a carrier, but she is testing negative right now, and I am having a hard time convincing the pediatrician to test further. Did Dr. Boubolis order the bloodwork for you, or did you have to go through your pediatrician/GP? Also, do you know why they used Zith. for the rest of the family when they were treating the PANDAS child with Augmentin? I just wonder... We are seeing an infectious disease specialist soon and are hoping she will tackle the "search for the culprit" in our family of 10!!! Isabel

DUT, Just read the thread and you are absolutely right! Lyme cycles every four weeks, it makes your legs or knees hurt and can cause swollen joints. Igenex is the preferred lab for the test but you must see an ilads trained specialist, NOT an infectious disease doctor, if you really want to be SURE it isn't lyme. I would not see an infectious disease doc for lyme ever. Lyme Mom So, what's an "ilads trained specialist", and how do you find one? The doctor we saw first was convinced he had an underlying Lyme infection, but the bloodwork never supported that notion... But maybe it's something to revisit. Isabel

I live in Phoenix. My daughter gets flares and exacerbations in the fall and winter as well. I think schools are germ factories! That kills my idea of sending him out to Phoenix to live with Grandpa! Isabel

Thanks for sharing this! I also order a lot of the supplements online and it makes a difference when you can get them at 30 to 50% off. I just wanted to add, for anyone using the Prothera line: if you have a friend or family member who is an MD and is willing to set up their own account, you could be getting a huge discount on your probiotics! My sister-in-law has done this for us, and it's been a huge blessing! Isabel

Thanks all for the congrats! I'm happy to report baby is doing great and I'm feeling energetic enough to hit the ground running with this PANDAS thing. Just to recap and answer some of the questions, DS12 is on Augmentin XR 1000mg twice daily. So, he should be covered as far as strep goes (unless we are on the wrong abx!!!) The doctor does believe he has either Reactive Arthritis or Juvenile Rheumathoid Arthritis, and they had him on a pretty high dose of Plaquenil. We tapered it down this last month, and so we have the joint pains/swelling again. I believe ds12 is not getting re-infected, just re-exposed and this revs up his immune system enough for some of the symptoms to come back (although he is nowhere near as bad as he was in the beginning). My dd7 was the culprit on Nov, Dec, and Jan, but now she seems fine (maybe I should take her in again...) and he's going bonkers. This is a total "medical mystery" to me, we have an appointment now for Feb. 9th at Georgetown University were we will see an infectious disease specialist Dr. Latimer referred us to. I am bringing both of them in. I am hoping to get both their titers done before then (hoping the pediatrician will oblige), but we are getting two feet of snow today, and it will snow again next Tuesday, so I don't even know when I'll make it out of the house! I am so hoping the Drs. come up with a real answer this time! But if not, we'll keep going. I am so sick of doctor's visits, bloodwork, etc, I was almost ready to give up, but a good friend help me put it into perspective... it's just a season. I'll give it all I've got now and maybe a year from now we'll be able to relax a bit... Isabel

Hi all, Haven't posted in a while... Baby was born two weeks ago, baby girl, everything went great, thanks all for the good wishes. So now we are back to reality, and I'm feeling so disappointed ds12 is sliding back again This is the fourth month in a row he has a set back roughly at the beginning of the month. Nov and Dec were clearly linked to strep, January was impetigo (staph or strep?), but right now no one seems to be sick. His sister's tummy aches turned out to be constipation (or so the doctor thinks), and it turns out even though I had almost sold the strep connection to him, the bloodwork got sent to the wrong lab so we never did get those titers, grrrrr! Matias is going through scrupulosity attacks, worrying about having touched this or that, his eyes look swollen, his knee is hurting again, and his wrist looks swollen. So, has anyone else experienced this monthly cycle thing? Am I going crazy? Or shall I say "lunatic" I was just thinking, what in nature follows a monthly cycle... the moon I just don't know what else to do. The pediatrician doesn't totally agree with the strep connection. He said he would not run a stool test on my daughter unless she had diahrrea. They have swabbed her but she has been negative in Jan and so now unless she shows symptoms I'm not going to get anywhere trying to prove we have a carrier. And then again, he could be getting exposed somewhere else, who knows. I just feel this is such a losing battle, you can't even see the enemy! I called today to make an appointment with the infectious disease specialist but got the answering machine all day. I shall insist tomorrow and see if they are any help. I might have to go back to our initial doctor... even though she seemed to be going in a million different directions, she did test for everything that might be affecting him. Well, that's it. I am sorry to be so negative tonight, I wish there was some definite test for carriers... Isabel

That's something I'd look into. But for now, each kid has a cup where they keep their toothbrush and a travel-size toothpaste of their own. It's 50 cents each at Walmart so I keep a stash and replace them whenever they are sick.

Gayle, Just make sure you do not give the charcoal too close to the abxs as it may bind them up and render them useless. I think you need to keep it four hours away on either end. I do give it from time to time to my son, but it's hard to find a time to give it when it's away from everything else the poor child has to take! Usually I give it to him at noon (since he takes the abxs with breakfast and dinner) and just move the lunch supps to late afternoon. Between that and trying to give the probiotics away from the antibiotics, it's hard to find enough time in the day... There was an article of biofilm that covered what the best way to time this would be... Also, a simple thing to try is to keep the vaporizer on It really helps around here when the weather is cold and the heat is running non-stop.

Just in case, I would check to make sure that no one else in the house has strep. We had it the first week of steroids and I could not figure out why ds seemed worse instead of better, until two of his sisters tested + for strep! So check that out first. There was a threat a while back about yeast, and how it brings on rages, giddiness, clinginess, inappropriate behaviors, etc... that's another possibility. http://www.latitudes.org/forums/index.php?...pic=4748&hl Also, check this topic on Zithromax toxicity... http://www.latitudes.org/forums/index.php?...pic=6367&hl

The way they say to deal with reasurance questions is not to answer them. My son does this a lot in the evenings before bed (did I close that right? Are you going to turn off the lights? Is it OK if I...) I might answer once and then say "I already answered that", or "That's an OCD question", or "You know the answer to that" It sounds like your daughter needs emotional reasurance right now that you are not upset at her, so trying to keep your cool is very important. Maybe just change the routine a bit, you could just take her hand and walk over together to get the shoes and put them on. Or just give her the "happy" before she asks, like "I'm so happy we are on time today, let's get those shoes on now." I know how it is when you are running out the door and trying to get other last minute things done, but you might have to adapt a little bit, make sure you make eye-contact and follow through to make sure she does it the first time you ask. I don't know where you are in the learning curve with OCD, and how much your daughter understands it and can recognize it, but slowly you will both learn to deal with these things, and it will get easier, but sometimes during exacerbations there is little that can be done...

So absolutely a carrier in the house can infect others, but it is not the same as having someone with full on strep (which tends to spread easily). Buster Well, at least that last sentence makes me feel a little better... I think figuring this out is going to be the key to my PANDAS ds holding his ground. My dd7 had full blown strep in November, was treated. Tested + again in Dec, no symptoms, treated again. Early January, joint pains, stomach aches, and impetigo, but swab/culture were negative... it seems there is something mutating inside of her, scary... Still waiting for titers results...

Hi Brooke, I think it is really hard to completely rule out strep for each family member... We did the swabs and found a couple of asymptomatic carriers. Our pediatrician, after hearing our story, agreed to put everyone on antibiotics, even the ones that had no symptoms and negative cultures. My husband and I also talked to our respective doctors and got on antibiotics. About the dog, Dr. Latimer said don't even bother testing, it's too expensive, just get the antibiotics. The vet did give us the same line you are getting, and we explained that the situation was serious enough we did not really care, we were putting our CHILDREN on antibiotics without proof of strep, the dog getting them too was the least of our concerns... I did do a search, though, and I found an article documenting transmission of strep from dogs to the family (I can't remember now, but it was something where they had documented treating the whole family and not clearing, and then doing the whole family AND THE DOG, and clearing it.) So it seems to me we are going to such lenghts to erradicate this thing, even if there is "little" chance the dog might be the culprit, it's worth ruling it out. Unfortunately, after all of that, my daughter (the one who had had strep in Nov and Dec) got impetigo on her face, and my PANDAS ds reacted to it (but he seems to be coming out of it now). She also had tummy aches and joint pains, throat cultures negative but we are waiting for the titer results... Dr. Latimer referred us to an infectious disease specialist to see if she can help us figure out how to erradicate this thing. We probably won't get to it right now, since I'm due next week, but I'll share with you all any good tips I get there. (You are in the DC area, right? The doctor's name is Dr. Barbey-Morel at Georgetown University if you want to chek it out). I know no one likes to prescribe antibiotics unnecesarily, but if you explain the situation and what is at stake, hopefully you will find a sympathetic doctor who will treat everyone. Believe me, I thought I didn't stand a chance of anyone prescribing for six children (I have seven, minus the PANDAS one who was already on abxs), but thank God the pediatrician got the picture and put them all on Omnicef. I was 8-months pregnant at that time, and after talking to my OB, he agreed to put me on it too. My husband just called his doctor and said there was strep in the house and he was not feeling well (a little bit of a fib), and they called it in for him. So if you plead your case, I think you stand a good chance of treating everyone simultaneously. Isabel

Gat's mom, Stomach pain can be a symptom of strep. My son had stomach aches, lose of apetite, fatigue, just feeling awful altogether. Once we got him on antibiotics, things improved, but it wasn't in a couple of days, it took a while. His strep was in his gut. Is your son on probiotics at the moment? If not, that's definitely something you will need to add. Also, some kids develop food sensitivities as a result of strep. My son never had issues before but now is testing allergic to dairy. So you might want to look into that. Or, is there any chance he has an ulcer? Not our case but I've heard of that. So basically, it could be related or not, but I would definitely look or a physical reason for the aches rather than just attribute it to the anxiety. Isabel

Unfortunately, today I can see his tics returning so she didn't get to see the improvement that we saw while on the abx. He starts his next pack tomorrow so hopefully we will see the tics subside again. I put a call in to the Ped. this morning back have not heard back yet. I'm trying not to get excited just in case it was a coincidence? I don't know.... so confusing!! Tatoomom, I would recommend you take a short little video clip of him every day, and that way there will be no question about it. Or you can just keep a very detailed journal. I think if you bring your pediatrician "hard proof", she won't be able to dismiss it.