matis_mom

So, if a child has PANDAS and RF, is the treatment any different? Or will the strong antibiotics prescribed for PANDAS take care of the RF as well? Or is RF something that just goes away on it's own, and you only have to worry about a possible re-ocurrence if you are exposed to strep again? I've been looking this up and can't seem to come up with a clear answer.

Thanks for the encouragement! It's just a tough decision.... Dr. Zackrison's approach makes sense to a certain extent, but it seems they are not addressing the antibodies directly, which are the real culprit at the end of the day. Dr. Latimer is going straight for what she knows by experience works for a vast majority of kids. I wish I could do both!

Thanks Ellie, that's encouraging news! I am just wondering about the dosage as it seems my son's prescription is a lot stronger (Amox/K Clav 875-125 twice daily for a 77-lb 12-yo) But maybe it's due to the fact that he has been on other abxs for the last 4/5 months an they don't seem to be making a dent? I have to look up the thread where people posted different dosages... Isabel

Angela, He weighs 77 lbs. and she put him on Amox/K Clav 875-125 twice daily, along with Prednisone 10mg 4/day for the first week, 3/day the second week, 2/day third week, 1/day fourth week. We have an appointment in a month to see how it works out. She also wants him to stay on probiotics. Isabel

We saw Dr. Latimer this afternoon. She was very nice, took all our symptoms, did the neuro evaluation and looked at all our labs. She is pretty confident high dose Augmentin and a month of steroids will bring great relief. I though my son was not so bad compared to other PANDAS kids, but she noticed a lot of tics and movements I guess we had just kind of gotten used to, and talked to him and could tell he is just the kind of kid that holds it all in. Up to know ds12 was being treated by an MD group which also does alternative medicine. They run tons of tests, have him on abxs and supplements, and even though he is better overall, we have seen no great improvement in OCD symptoms, after spending hundres and hundreds of dollars on non-conventional tests and supplements/homeopathic meds. So we are leaning toward going with Dr. Latimer's recommendations. I am just afraid of any possible adverse effects of steroids, or that they might not work. She put him on Augmentin 875mg twice daily plus Prednisone. She was a bit sceptical of all the tests our other doctor run, and basically said it's all part of the same thing and this course of treatment should take care of it all. I am not sure how long my son has had this, we think since Feb, but maybe longer, and I feel I owe to him to do all we can to get him back to normal asap. Well, I have to go, I think I just need some words of encouragement/reassurance that this is the right path... Isabel

Great article, I am sold on the Epsom Salt baths as my son also has joint/arthritis issues. We'll definitely have to include those at least 3 times/week!

My ds12 has the joint pains/swelling. I am not sure if it's rheumatic fever/rheumathoid arthritis/reactive arthritis, but his doc thinks it's definitely strep related (although they are still considering Lymes). Joint pains and swelling seem to coincide with higher anxiety/OCD. Have you noticed any connection? I just started keeping a log of symptoms to help me make connect the dots. They quadrupled one of the abxs at the last visit to deal with the joint pain/swelling, and it seems to be working. His doc is also concerned about possible heart involvement, have you had your son checked? I am assuming he is already on antibiotics right? Isabel

Falling Apart: I am quoting here an e-mail from my friend whose dd had severe psychiatric symptoms (turned out to be Lymes/Babesia/maybe PANDAS). After trying conventional docs and having horrible experiences with drugs, she is seeing a holistic doc (the same one we see) and they have seen great improvement, although her daughter still needs some psychiatric drugs. They did this test to find out what would/would not work and they have finally found the right meds. Maybe you can check this out. ""I wanted to suggest something to you. If you are considering psych meds- XXXXX has been using them. I was DEAD set against it- until this happened. I have a very LONG story about our experiences- but I would recommend the Genova test that is about detoxification. maybe you have this done already? Basically, this test showed what we had already found out in a very ugly way. XXXXXX is unable to process properly several medicines, including prozac and luvox which she actually took and suffered violently from for months while the psychiatrist told us that sometimes it takes time and not everything works for everybody. We have found one that does help, I believe. I used to be a die-hard no psychiatry med-type person,.One thing this whole experience has taught me is not to judge! DetoxiGenomic Profile - Diagnostic Laboratory Testing for Wellness & Preventive Medicine - Genova Diagnostics It is one of those new "personalized medicine" things that is talked about in the news. It cost us $330."" We have not tried anything other than abx yet, but are considering trying something to decrease the anxiety. Even though our doctor is convinced the abxs will work in time, she suggested we consult a psychiatrist to see about putting him on a low dose of Lamictal (sp?) to help him with the symtoms. But we decided to postpone and go see Dr. Latimer instead. Meg's Mom, I have no clue what ERP is, but it seems like something I should look into to deal with some behaviors. Could you please educated me? Thanks! Isabel

I am so grateful that we decided to check out the physical aspect before we took any other steps. The friend who recommended our doctor was taking her severely ill daughter to a psychologist who after a few sessions said, "I really don't think I can help you any further, I recommend you get a thorough medical check up" Wow! God bless him for his honesty! It turned out her child had Lymes and Babesia, and as of last week it seems there may be some strep involved as well. She is not all the way recovered, but she is a lot better To think before that hey spent months going to psychiatrists, trying different drugs, etc, and no one bothered to check for physical causes!

Our ENT said he has seen kids who are eating cheeseburgers the day after the surgery, maybe he'll be one of those lucky ones!

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best? Where do you live? Are you in DC or anywhere close to NY or NJ? Linda Nope, I'm all the way over in Arizona. We'll have to travel by car...no way to get this kiddo on an airplane. I'm sure my pediatrician will work with her- he could preorder all the labs she wants done, so we could come with labs completed.. You guys have no idea how relieved I feel already! Gee, 1/2 hour ago I was sobbing in a fetal position!!! Thank you so much! Peglem, Wow, driving all the way from Arizona! My husband did it with his dad when his dad moved down there from this area, it's a long trip! Is there any way you could do a phone consult with Dr. Latimer, and then get the procedure done closer to home? Maybe some of the people in this forum can recommend someone closer? Anyone? About the insurance, try talking to them and see what you can get, and like someone else mentioned, this is the time of year to switch plans, maybe you can opt for a plan that covers more out-of-network. We have Cigna Open Access and they have been covering 70% of out-of-network doctors, and most of the labs. Hang in there, when there's a will, there's a way. Isabel

Hi Suzan, I feel for you! It's so frustrating when they want help but they don't want help and no matter what you do, you can't help!!! For my son what works in those situations it's to either not engage at all (using your example, just take the cards and walk away), or just say "you may keep doing them as long as you are nice/cooperative/whatever" The big problem is in the evening when they are tired everything is harder. Would just giving her a good dinner and sending her to bed be an option? I know some of these options might seems cruel and cold, but I don't think perpetuating the cycle is any kinder It is so hard not to loose it! Just remember she is sick and there is only so much she can do, and there is only so much you can help her. Also, with the eating, that to me is a red flag. Do you know if she has parasites, candida, or any other gut issues? I would check into that. Hope the evening finishes on a smoother note!

We did not have to pay for our lab work. It was filed under our insurance, Anthem Blue Cross. Thanks Michele! That's gives me some peace of mind. We have Cigna and so far we are very thankful they have covered a ton of stuff!

it was the best word to explain the different child we found ourselves with It sounds weird but this whole metaphor makes it easier for us to accept the reality that "this is not our child" It kind of makes it easier for him also to understand that "this is not him", there is something in there (the "beasties" as we sometimes called them) making him do things that don't make sense, and making him fearful of things that are not real. So sad But reading all these posts I am more and more convinced this is an immune issue and for some kids it might go away at puberty, for some the antibiotics will do the trick, and still others will need IVIG/PEX to "reset" the immune system, or like it seems to be my son's case, there might be other underlying issues why his immune system is not up to par. It's just a matter of figuring out where you are, and that seems like such a crooked muddy road, no straight path to follow. We all seems to be going from doctor to doctor trying to find the answers for our particular child, and many times this is done through trial an error (try this antibiotic, now try that one, oh, let's try IVIG, let's change the diet) But we all just want this to be over with, so we keep trying. Hang in there everyone, and keep sharing your stories, you never know who it might help I know eventually we'll get our son back 100%. We are not there yet, but we've seen glimpses of the happy clown we used to know interspersed with this other fearful child who keeps asking us the same thing over and over again and spends hours in the bathroom It really makes you feel like asking, "who are you, and what did you do with my son!"

My son had them out too back in August upon recommendation from his PANDAS doctor. He was already on abx because of systemic strep. His recovery was difficult, lots of swelling and pain. The ENT gave him some pain-killer with codeine (sp?) in it, which did nothing for the pain, just made him sort of hyper and unable to sleep well. Pandas doctor changed abx to Cipro for 10 days after tonsillectomy, and added Nystatin along with it. She also recommended we ditch the pain killer the ENT prescribed and just stick with Motrim/Tylenol for pain management. So I would say if your doc is recommending it, go ahead. Just make sure you have the right prescriptions to help with the recovery. The procedure itself was very quick, less than 20 minutes, and we had no complications from the anesthesia. Good luck! Isabel

We are going to Dr. Latimer's tomorrow for our first appointment. I am bringing all the labs we have so far from our other doc. I am a little worried about cost (beyond the consult fee) for labs. Do they usually run these through insurance, or are they out-of-pocket. I basically don't care at this point, but just want to prepare my husband (he's the one who pays the bills!) We were hoping to get our Cunnigham results by now, but nothing yet, maybe we'll get an email tomorrow morning before heading out!

Hello..and thanks for replying back to my post. It helps to talk to others going through the same situation. I know what you mean about your heart and mommy instinct. Jacob is in a gifted classroom and the workload is horrendous. He just cant keep up and I think this is stressing him out even more. I just want him happy and healthy again. Children should not have to live with so much stress, anxiety and fear. It truly breaks my heart. My problem right now is convincing my husband that it is the best thing for our son. He is also an overachiever and I feel this puts a lot of pressure on Jacob. I do have him seriously considering it after last nights episode. My son doesnt necessarily love school so much..I think he want to succeed at everything. He has trouble socially. He has also been pulling out hair in the top of his head..leaving bald spots. He told me yesterday that children were laughing at him because of the bald spots. I am not sure if they really were or he was just imaging things again. He has good days and bad days. So we send him back to school and then it just happens all over again. Where are you located? Hi Michelle, My son is 12 and even though his PANDAS symptoms are not too bad, I can definitely tie the dilated pupils to an increase in OCD/Anxiety. We have been homeschooling all the way along (not because of his issues) and it works for us. Some days I have to give up on school, and other days are better and we are able to catch up, so we have been able to stay on top of things, thank God. There are two things that are very important and are hard to deal with if your son is in school. 1) Sleep. It's hard when they can't settle down and night and then they have to get up at a set time in the morning to go to school, no matter what. My son has adrenal fatigue and for the longest time I tried to "make him" into a morning person. Now I've given up that battle and just let him sleep, following doctor's orders. 2) Stress. Stress doesn't not help anything, so at this point with so much going on, if you can cut down on the stress, please do. I might mean moving him to a different class that is not so demanding, working a different schedule with the school, hiring a tutor, or homeschooling. You'll have to find the right answer for yourself, but from your posts it seems right now school is not being a fun learning experience for him. Sometimes you have to concentrate on one thing and let go of others that seemed so important before this health crisis. Even if he looses a whole year of school, what's the big deal? In the whole scheme of things health is something you cannot do without or "catch up" on. Hopefully you will be able to find some creative solution so that he will keep learning through this tough time! Hang in there! Isabel

We just went to the dentist last week because our PANDAS dr. wanted to make sure there wasn't anything funky going on there. The dentist said in the mouth it's usually strep B, but went ahead and checked, no problems, thank God! Besides the antibiotics, ds is on tons of probiotics, some of which are in powder form, and I think that helps keep the mouth healthy. He also takes silver every day, which he swishes around the mouth at night AFTER brushing his teeth. Both of these things are easy to implement and certainly safe, so those of you with teeth issues might want to check them out. Also, I would recommend BIOTENE mouth wash, which is designed to dissolve biofilm. I saw it recommended in an autism/pandas presentation. Hope this helps! I know the last thing anyone wants is to have to deal with the dentist ON TOP of all the other doctors appointments, meds, supplements, learning issues, etc. Isabel

Hard to elaborate on scientific terms, but I will try to paint a basic picture in layman's terms... Your gut process the food, breaks it down, and it gets absorbed through the intestinal walls and into your bloodstream, to be taken to the rest of the body so that each cell can do it's proper job. If your gut is unhealthy, the rest of your body will either not get the proper building blocks for whatever they need to do (lack of the right raw material), or they will get the wrong thing altogether (namely, toxins). If you are giving your brain the "wrong" food, it will work "wrong". There are so many aspects of why and how this happens, it is a bit mind-boggling. But these are some of the things that play a role: leaky gut, diet, allergies, intestinal flora, heavy metals, etc, etc. This all gets compounded by the fact that the gut also houses 80% of your immune system, so if it's not working properly, you are open to a host of other problems, and are simply not able to deal with things the way a healthy person would. I need to borrow that book back from my friend and maybe I can post something a bit more helpful! The doctor that wrote the book has an autistic son who pretty much was cured by addressing the gut issues. She also mentions other "diseases" like ADD, ADHD, and schizophrenia. I don't remember if she mentiones PANDAS at all, as I read this book a while back and we did not have any issues back then (or at least I did not know we did!) Anyway, I would recomend both "Gut and Psychology" and "The Ultramind Solution" as both deal with brain problems as a symptom of something else being out of balance. They both see mental issues as something that can be healed, rather than the old-school thought of saying "You just HAVE such-and-such, you'll always have it, and here are some pills that might help you deal with it, but they may or may not work, and here is the list of side effects." I myself am caught between a) following our current doctor, who is taking a holistic approach and looking at EVERYTHING, OR just treating the neuro-psychiatric symptoms NOW and dealing with the rest later I can see improvement so far in my son as far as energy and overall health go, but his anxiety is still high, we've had a few flare-ups later, and it seems with each flare up another obsession is added to the list! So, we are seeing Dr. Latimer tomorrow and we'll take it from there. This is so hard! Isabel

I guess there is no simple answers for any of our kids, we all seem to have more than one "front" in this war. But, I would recommend you read the book "Gut and Psychology" (or is it "Gut and Psychology Syndrome"?) I can't remember the name of the author, but if you google it or look for it on Amazon you'll find it. It has a yellow cover with a road sign pointing in all directions, what a metaphor! The reason I recommend it is because it mentions schizophrenia, and how gut problems play into it. I think reading it will give you great hope, as the premise of the book is that if you fix the gut so it can send the right "food" to the brain, the brain will start working just fine. If we look at all these symptoms as signs of chemical imbalances, the answer is to fix the "chemical factory" i.e, the gut, so that instead of sending toxins it starts sending the right stuff to the brain. It is a lot more encouraging than having someone put your child in a little box and trying different psychotropic drugs. Don't give up! What we are finding with our son is that is not just a matter of treating the strep, there is so much more that needs to be "fixed"! It is daunting and discouraging to see there is a long road ahead, but we'll have to be patient. There is a history of mental illness in my family (my aunt is schizophrenic, mom is bi-polar/manic-depressive and is doing great on lithium), so I am determined to see that my son does not get to that point. I know there are some hereditary factors you can't do anything about, but I'll do all I can to make sure he is as healthy as he can be to face whatever genes he's been dealt Praying that things settle down for you, and that you find the right docs for your child. Isabel

That is very discouraging for us as we are about to schedule t&a surgery and were hopeful that would help in getting rid of the infection. Don't be discouraged! It's just another piece of the puzzle. The way our Dr. explained it is that if there is an absess in the body, the abx can go no further. So by taking the tonsils out, you stand a better chance of clearing the strep. Our son's strep is in his gut, but the tonsils came out anyway. I can't say that it has made a difference, but I don't regret having it done. Isabel

Hi Lismom, for 65 weeks, we did only antibiotics and this was very effective. Her symptoms declined dramatically after the first 10 days on azithromcyin and by 1 month we were 90% better. We had 7 subsequent exacerbations and 5 of of them were correlated with her sister (or mom) having culture positive GABHS. The 6th exacerbation was tied to H1N1 and the 7th to getting Fifth's disease (symptom showed at the fever and the slapped cheeks showed 3 weeks later). We would probably not have gone for IVIG if we had had fewer exacerbations -- it just seemed with the frequency we couldn't get her back to the baseline.... It was sort of like trying to stay ahead of snow storms -- we kept having a new storm before the results of the previous storm dissipated. Finally we called in for the snowplow :-) Terrible analogy but best I could think of before my coffee this morning. Looking at the frequency, it looked to us that it takes our dd9 about 8 weeks to get back to "normal". If we get another cumulative exposure within that time, the baseline just goes up and the exacerbation is worse. Our daughter may be an extreme case, her CaM Kinase II was really high (253) and the severity of her symptoms was super scary (not eating, body morphology issues, severe contamination fears, ...). In our case we're glad for the reset but are now back to just keeping her on antibiotic. Treat it as we got help to get back to a baseline but EAMom and I think if it weren't for the severity of the exacerbations and the frequency we probably would have just stayed with antibiotics. Regards, Buster Funny that you mentioned Fifth's disease. At our last appointment the Dr. ordered a whole bunch of tests, and the antibodies for Fifth's disease were way high... he has been on a second exacerbation (after his sister had strep a couple of weeks ago), and now his cheeks look funny (although it was very sunny over here yesterday, thank God for nice weather !) Today he was complaining of an ear ache, joint pain, just overall tired. He is on abx right now. So, I don't know what to do. It seems a waste of time to take him to the pediatrician. We are seeing Dr. Latimer this Wednesday, and then his PANDAS doctor on Monday. We are anxiously waiting for his CaM Kinase results, hopefully they'll be in before Wednesday! Isabel

Very interesting reading this thread. I can see so many similarities! My son does not get giddy or happy at night, but his anxiety goes way up. When he's really bad, I can definitely notice the dilated pupils (it's like a panic attack), and even his eyelids seem swollen. It takes him a long time to settle down to sleep too, and then he also has bladder control issues, which wake him during the night. On top of that, if he does go to the bathroom, that starts the whole OCD thing about handwashing, changing underwear, changing clothes, etc., so that really interrupts his nights. His doctor is looking into some possible kidney/bladder/prostate infection, we'll find out at our next appointment. They put him on Nystatin and that has helped some. But, the one thing I see in common on most of your posts is the morning crankiness, which he also has, and I do think that is low blood sugar. I can see it in my son. I am thinking of putting him on a sugar-free, protein at every meal diet and see if that helps. I have serotonin issues and I was doing the "Potatoes, not Prozac" diet and it really helped. Very interesting book to read, I highly recommend it to anyone struggling with depression and/or sugar control issues. One of the things it recommends is having a potato before bedtime. I can't explain the whole thing right now, but it basically gives you a good "sugar low" in the night to help sleep well, and increase serotonin levels. If anything, it can't hurt! And I think it will help my son tremendously with his yeast issues to be off sugar. But it won't be easy! Isabel

I have to agree with you all about not seeing a direct relation with the symptoms, but I do have to say he is better physically overall. So, I will take these results as "we are making progress" on the body, still have to do something about the brain! We are seeing Dr. Latimer next week, and are hoping to get our CamKinase by then. His OCD focuses on germs and handwashing, and lately he started being concerned about whether or not he is brushing his teeth right, and on to scrupulous thoughts... I feel we are loosing ground! Isabel

I just got results back for my son (age 12). I am excited that the numbers are going down, however, I have to say his anxiety has not improved much. Or rather, it was better and then his sister got strep and we saw him regress. The October numbers are from BEFORE the flare up... I was just wondering how this compares to other kids. After five months of abxs, is this considered good progress? _____________July 09______October 09 ASO:________ 415___________371 Dnase:_______ 680___________480 Streptozyme:__200___________100 Isabel