emma1

My daughter is 16 and has a PANDAS-like disorder. Antibiotics dramatically help, as I have written. We have tried amoxicillan (75 percent better) and augmentin (99 percent better). Both of these were full dose, not low dose. We are now on Pen VK 250 mg twice a day, and I am seeing symptoms again. I am unsure whether she is on the wrong antibiotic OR whether the dose is too low OR whether I am expecting too much for all symptoms to be gone. She takes an adult dose for most meds. Our doctor does not have a clear recommendation at this time. When I see symptoms, I worry about the attack on her system/brain, and I seriously, seriously worry about permanent damage. Any advice would be so appreciated. I have been able to hold it together until now, but right now I feel just miserable. I am a little afraid to keep calling our doctor all the time because he has been supportive, and based on some stories here, I am afraid he is going to refer me to another doctor who decides antibiotics are not the way to go, which would be just devastating. (Sorry for the whining) I know zithromax seems the way to go, but that is the one drug my doctor seems opposed to giving us.

Mostly some ocd things (counting, repeating things) -- very quiet, and not obvious -- but definitely there. No tics -- yet. With the augmentin, there was nothing. It was wonderful. I wonder -- does anyone stay on augmentin or is it too strong long-term? I was researching Pen VK, Michelle, and it said that the tablet contained "lactose" -- do you think your son could be reacting to that? We are not milk free -- tried it, but it made no difference. Not sure the lactose refers to milk, but that is the only context I've seen it. I know the Culturelle we use has whey in it too.ing

Michele, I know that Dr. Murphy did not recommend zithromax -- why was that again? My doctor is set on this low dose Pen VK because of its use with prevention of rheumatic fever. I am finding that it is not working as well as the high dose augmentin. But we are on 250 twice a day -- that seems really low considering my child takes an adult dose of most meds. I was reading posts of those who only need to give zithromax every 5 days -- that sure sounds nice. Anyone with a PANDAS child -- has Pen V worked to get rid of all symptoms for anyone? We were symptom-free on augmentin -- glorious for almost three weeks. And you are encouraged to take with food, which works so much better. Is anyone on long-term augmentin?

Hi Michele! I checked and actually what it says is that the Pen VK "is better absorbed" when given on an empty stomach. I truly don't know what that means. Is Andrew getting 250 mg three times a day? We are on 250 mg twice a day! Is that too little?? How is your son doing? Did you switch to zithromax? The jury is still out here regarding Pen VK. I am not sure it is working. I know about all the "superbugs, etc" but I wish it were easier to just get what works right now.

I am giving my daughter Pen V in the morning and at night. I am giving probiotics at dinner, to keep them separated from the antibiotics. I have two questions. First, are those giving Pen V giving it on an empty stomach (one hour before or two hours after a meal) -- I am having trouble getting the Pen V in during the morning and still having time to give my daughter breakfast. Second, I want to add (slowly) a multivitamin, fish oil, and magnesium taurate -- but when would I give those? Can I give those at the same time I give the antibiotics, or will any of them impair the absorption of the antibiotic? Any suggestions would be most appreciated.

Michele, Just wanted to add my two cents. First, I love this board, and think it totally ridiculous someone would try to disrupt these discussions. Just awful! I read the article, however, and in my heart, I know that it is at least partially true. For my daughter right now, if I made a big deal out of this -- if I ran her from doctor to doctor -- if she had test after test -- it would make her feel so "different" from everyone else -- it would, in short, pretty much ruin her year. So, I am making a huge effort not to watch every single thing she does. Some days I am more successful at this than other days. And, I am working quietly behind the scenes. I research. I read. The last doctor's appointment for her -- I went by myself!! I will say this, though. When your child is having mild symptoms, or no symptoms, it is so much easier to sit back and take the advice in that article. But when the symptoms come full force -- as they did for us during our "break" from antibiotics -- it is next to impossible to just let things unfold. I become frantic -- literally on the internet night and day, calling our doctor, buying supplements left and right! This last "break from antibiotics" -- when my daughter had such a hard time -- happened over Homecoming Week-End. (My daughter is totally into all of this and loves it and is not stressed by it at all, when she is not ticcing!) If I hadn't been able to get antibiotics, and they hadn't worked pretty much immediately -- the event may well have been ruined for her. I have read enough here to know that just because this antibiotic works now, it may not work later, so I feel I have to keep working at it. However, right now, I am moving very slowly. I rushed in and had her taking a little cup of supplements -- I didn't know what was working and what wasn't. So I stopped everything but the antibiotic, and started over. Again, in my heart, I know balance is best. (Do you think it counts if sometimes you are totally calm and other times totally frantic? No? I didn't think so.)

Amy, I just realized that this is entitled "PANDAS Based Tourettes" and saw your post on another thread that Dr. Murphy had diagnosed your child with PANDAS and Tourettes. Does that mean that if your child has tics because of strep titres, but the tics go on for more than a year, then that child has Tourette's? I was thinking that there was TS, which had certain supplements that might help, and then there was PANDAS (tics/ocd), where antibiotics and other supplements might help. Both TS and PANDAS might look the same -- but the root causes are different -- so different approaches might be in order. I guess my question is: Did Dr. Murphy say your child had TS because your child has PANDAS and has had tics for more than a year, or did she say your child had TS based on additional criteria? Thanks!

Just wondering how the rest of your appointment went. Did she recommend any changes to what you are already doing, or are you just staying the course? Thanks for the book recommendation.

My daughter woke up this morning after 3 days of low dose Pen VK with a raging sore throat! I know you are supposed to be protected from strep while on this antibiotic, but does anyone know -- can you get strep while on Pen VK -- the dose is low -- and this sure looks/seems/feels like strep to me. Help!!

Just wanted to say that I was re-reading some posts sent to me in answer to my numerous questions, and Ronnas sent an article that stated that, indeed, PANDAS was more likely in families that had a history of tics or ocd. We have neither in our family -- though sometimes I think I am becoming obsessed trying to find answers to this PANDAS issue with my daughter! Michele, my daughter won't let me tell a sole, and doesn't usually want to talk with me about it at all. I've only spoken to the doctor (definitely not chatty about it) and my husband (who doesn't really talk about it at all -- but who will occasionally tell me, if I ask, how he thinks she is doing). I am so thankful for this board or I would be totally alone (well, as alone as one can be in a house full of children)!!

My daughter is suspected of a PANDAS-like disorder, and we have no TS or tics in the family history, but we do have a history of autoimmune issues on both sides of the family.

Hi Kim! Thank you for the thread. I honestly don't even know what manganese is except that it is a mineral. There is, as I understand it, no RDA -- the Everyday has 1.5 mg. The PicMins have 15 mg! Do you use a multi for your child -- does it have manganese (most seem to, but I have found some that do not - but they have other things in them that I don't want).

Michele, I am far from an expert, or even truly "knowledgable" about this, but here is how it is with us. My daughter has major, major improvements while on antibiotics. Off -- we go back to symptoms. Truly -- night and day changes. She has high strep titres. So, I guess the question is -- if it is simply tics, or Tourette's (though she hasn't had tics a year yet) -- would antibiotics stop/slow symptoms? I am thinking the answer is "No" but guess I don't know for sure. Has anyone with Tourette's -- but not PANDAS -- had symptoms improve with antibiotics (perhaps while on them for other reasons)? We have no familial history of Tourette's, and these tics started pretty quickly out of the blue. I remember Chemar (who seems to know everything!) saying that not all PANDAS children have Tourette's -- but you can have co-existing conditions. I've been reading a lot about this -- there certainly is some controversy. I did read (somewhere) that PITANDS had been abandoned as a diagnosis, but I am not sure that is universally accepted, or just one doctor's opinion. I have read too that, in some cases, after the antibiotics, the symptoms should go away. The article I read said something like 6 months. But, there are many here who seem to have different stories, where the symptoms last much longer.

That is what I meant to say! Thanks!

This is an interesting question. I have thought about this as well. I think that when one has strep, that person is contagious for up to three weeks, unless that person is treated with appropriate antibiotics. Once treated with antibiotics, the person is no longer contagious after 24 hours (some say 48 hours, but most say 24). If there is no antibiotic given, then the person remains contagious for a longer period. I read it would be about three weeks. Now, that same person will still most likely have high strep titres. With high strep titres alone (that is, not an "active" infection, as delineated above), the child is not contagious, and would not be able to pass strep onto other. PANDAS is the term for the autoimmune reaction that occurs to some in response to a strep infection. No one, as far as we know anyway, can catch PANDAS -- though there have been some instances where it seems that PANDAS runs in families. But doctors do not believe that it is because one child is "catching" PANDAS from another child. So, bottom line, my take is: Strep is contagious when active: until 24 hours after the start of antibiotics or around 3 weeks if the infection goes untreated. After that, titres may remain high for months, even in a "typical" child, but that child is not contagious. PANDAS is an autoimmune reaction to the strep, and while certainly a problem for the child, is not contagious to others. Does that sound right? I hope Kim looks at this -- she really digs into all the medical literature and is brilliant in explaining all of this!

I see that some posters say that manganese increases tics. Is this universally true? Most of the multivitamins that I have found have some level of manganese in them. I purchased Everyday from Kirkman and it has 1500 mcg. I also noticed that Dr. McCandless recommends PicMins (not for tics, though) and it has a relatively high amount of manganese (15 mg). I was trying to find a "safe" multivitamin that wouldn't be too high in any vitamin/mineral, but would give me a good basis from which to start. Any guidance would be so appreciated. I have yet to find a doctor with any experience with PANDAS and supplements. Thanks!

As I was searching this forum I found this post which I thought was extremely helpful. I know there is supposed to be a way to attach it, but I don't know how! This is a post from 2004 (I think) from Claire: Below is a one week trial plan I put together that may be doable for newcomers. Often, people have multiple issues. Many of us had longer term treatments that made a difference (Heather and yeast, mercury for others), but it may be hard for people who can't afford doctors to guide them to 'believe' and motivate themselves to do this on their own. My goal is to have something that shows right away that alternative methods DO make a difference, so newcomers may be more willing to go the distance and address all the issues. I compiled a list of the things that seemed to benefit multiple people on this board to get people started. Inherently this will be more than some people need. You can try one or two things at a time or go on a camping trip in the spring (e.g no electricity, limited food choices...) A parent wouldn't even have to tell a younger child what was going on -- they could just have run out of certain foods, that week, make a big deal out of practicing home cooking, and insist on family time over TV/computer time, but that is an individual thing. Finally, I listed the elements separately, so a parent can pick and choose a subset if they would like. Below is my recommendation --good to read posts from lots of people on their success stories. Any 'compilation' post inherently doesn't reflect individual success plans. ------------------------------ BEFORE STARTING THE WEEK TRIAL PLAN 1) Though both Tourettes Syndrome (TS) and other tic syndromes can improve with alternate treatments, with TS you are more likely to have some continuing tics (and even with tic syndromes). Tic syndromes affect 10-20x the number of children than TS. 2) The object of the long-term treatment is to improve your childs physical health and to find a balance of a manageable program and minimal tics, that keeps a close eye on your child's mental health from too much focus on this and too many restriction. Whether it is tic syndrome or Tourette's, the plan is the same. 3) A low stress environment is always beneficial for children with neurological issues. 4) I believe that the unanimous advice of the regulars on this board is to never ask your child to stop ticcing. The treatments help reduce their urge to tic, we never ask them to control tics--it doesn't work, perhaps temporariliy--and then can backfire, but in terms of emotions and tics. 5) Yeast is a common underlying condition for many of our kids. Try this free at-home spit test. First thing in the morning before they drink water, have your child spit into a glass of water. If the spit floats, they 'pass'. If it sinks or has stringers coming down, they may have yeast issues. There is a whole diet plan for yeast, such as avoiding sugars, refined carbs, molds, vinegars. Plus supplements such as capryllic acid, garlic, olive leaf extract, threelac.. do your research there. 6) ALTERNATIVE DOCTORS. If you can afford an alternative doctor to guide you, this is ideal--mainstream neurologists generally aren't aware of these methods. Sheila Rogers, the site editor posted a list on the thread at the top of the forum, to guide you through this process. Please don't be confused by the title "DAN" doctor-- (Defeat Autism Now), their testing protocols cover a spectrum of neurological disorders (yeast, metals, food sensitivities, vitamin deficiencies...) that seem to occur in many people on this board. Correcting these imbalances has helped many of us. The lists have MD's and naturopaths, so you can pick whom you are most comfortable with. http://www.latitudes.org/forums/index.php?...p?showtopic=565 ------------------------------------- *****THE 7 DAY TRIAL PLAN***** If you can't yet afford an alternative doctor (see above), or want to try some things while you decide on a doctor, this is something to try for 7-10 days that is a combination of methods that many of us started with. It is not a complete plan, does not address longer term issues such as metals, and yeast. Also, supplementation should be done with a doctor's supervision, especially for longer periods. You can ask your pediatrician if one week on these supplements is okay. I think it is easier to do supplements at a different time than everything else, since some supplements (e.g. certain EFAs) can actually make tics worse in some people. Yeast detox can also make tics worse. So I would separate the supplements plan and do it the following week, adding one supplement at a time. Or do it first, though usually it takes longer to see results. In the end, the body needs healing, so even if removing a trigger such as screens works, it is not the ultimate long term solution. It is more that for some it would give a quick and sustained improvement while you heal their system. In the end supplements to rebuild the system, and avoidance of problem foods and artificial ingredients are likely to be most important to healing. 1) NO SCREENS for a week (no TV/Gameboy/Big screen movies) [For 14 of 15 people that I know tried this, it made a big difference at the time--clearly, it was most effective at the beginning of the program--before healing occurred, but this is where the newcomers are. Over time, either try an LCD monitor or once their system is in balance, many can tolerate CRT screens again Summary of posters stories: http://www.latitudes.org/forums/index.php?...p?showtopic=852 2) SUPPLEMENTS TO GET STARTED (in lieu of testing for deficiencies. If you take away foods in the next step, you will want to make sure they have a solid base of vitamins. At this point I would do RDA's and later customize more based on doctor guidance -Magnesium Taurate -Calcium Citrate with Vitamin D -Omega 3's 1 pill fish oil often preferred over flax seed oil for boys, but some have issues with fish oil, do this one by itself -Borage or Evening primrose oil for GLA--1 cap each -Probiotics 1 cap (for yeast issues) -B6 or p5p on alt days (B's make some kids hyper) -B complex (B1, B2, folate, B3-Niacinamide...) -A multi-vite with A/C/E/Selenium --at doses in the multivites -no copper or artificial ingredients in the vitamins -Alt day: B-12 (with methylcobalomin) sublingual tablets or gum -Alt days: Iron (unless they get it in fortified cereals) by itself -Zinc Citrate/piconlinate at bedtime, by itself -low or no manganese--it can aggravate tics. Add vitamins one day at a time to test for reactions. Or investigate www.bonniegr.com for her supplement program, but then if your child reacts to some, you wouldn't know. With vitamins, more is not necessarily better! Capsules are easier to swallow, so is using a straw (Chemar's tip) 3) NO ARTIFICIAL INGREDIENTS. No artificial colors, flavors, or preservatives. Shopping at Whole Foods or Wild Oats is generally safe. www.feingold.com is a non-profit program that maintains lists of acceptable foods. In addition to the artificial additives listed on Feingold, most here avoid corn syrup (esp high fructose) and sucralose. summary of poster's experience http://www.latitudes.org/forums/index.php?...p?showtopic=795 4) ENVIRONMENTAL ALLERGEN CONTROL. If your child has respiratory allergies, wash all his/her bedding and put a HEPA filter in their bedroom. A anti-dustmite pillow and/or mattress cover would be ideal. Vacuum the room before bedtime (but not with the child in the room) 5) ELIMINATION DIET yes, normal foods can cause tics--if your child is sensitive. There are formal testing methods to determine this (e.g. IgG blood tests), but an elimination diet is doable if you don't have a doctor or the funds to test. The objective is to see which foods your child reacts to, if any. summary of poster's experience http://www.latitudes.org/forums/index.php?...p?showtopic=794 The most common one seems to be milk and wheat (actually casein and gluten) Many/most here had multiple allergies, but it is a good place to start. If I had to pick on, it would be dairy. Before you begin, I would strongly suggest that you plan out the diet before you get started. Make sure you have the safe foods list ready and the food stocked in house. Doris Rapp's "Is this your child's world" or "Our toxic world" may have a list--or call your my ENT/Allergist today and ask for a standard food elimination diet list. You will also need recipes and alternatives so that your child can still have delicious, nutritious meals. Amazon.com has a great book I got--it has really helped with wheat/milk substitutions --the standard American diet is 70% wheat and dairy. They have wheat/gluten-free, milk-free, egg-free and even lots of yeast, corn-free and soy recipes. If the food elimination plan works, and if you indentify the sensitive foods, you can investigate enzymes with meals (e.g. Houston Pharmaceuticals). But it affects the supplement program, e.g. you should take less B3 and B6. 4) AIR FILTER in the room at night ( for families with potential mold, dust, synthetic carpeting, and/or paints and chemicals for the children to react to. ) 5) Lots of prayer. If significant improvement is seen after 7 days continue with the program until no improvement was seen for 3 days in a row. I see this as their neurological baseline for this particular assessment. Then they can figure out whether to add in foods one at a time, add in CRT screens, in reduce amounts, or go back to life as normal and try each category one at a time later to see if just one element is enough for them The main point is to give confidence so that they will go through the effort to find the way to heal themselves or there child. Treatments vary considerably and are greatly influenced by your and the doctor's preferences. Virtually all can be done without prescriptions--just supplements. Claire

Michele, So very sorry -- it is so confusing, isn't it? Hives are a side effect of augmentin. Of course, it could be an allergic reaction to -- well, anything. My oldest once had a reaction and it turned out not to be to the antibiotic alone, but to the antibiotic combined with the cold medicine I gave. It turned out I could give each alone with no reaction, but not together. It hope Andrew gets better quickly.

Michele, Thanks for the information. Did you say that you are stopping the Coromega? Does the DAN think that Andrew is reacting to the fish oil, or is there another reason -- I thought that was one of the (few) things that Dr. Murphy recommended. Are you still on the multi, or did you stop that too? I am so glad you are seeing improvement!!! (I am wondering in part because when we were on the first antibiotic I saw a major improvement, but there were some symptoms. When I was giving that antibiotic, I was also giving a cupful of other pills at the same time, and I am wondering if they somehow interfered with the antibiotic working. With this second antibiotic, I have been giving it and the probiotic and that's it -- and we have had a much better response. It could be the amoxil is less effective than the augmentin -- or my child could have been reacting to one of the other pills -- or one of the other pills could have been diminishing the effect of the amoxil.) I don't know if I should stop since I am seeing improvement (I think Dedee did that) or keep trying to find answers because one day the antibiotics might not work.

Michele, Did Dr. Murphy know about pyroluria? My doctor had heard of it, but had never diagnosed anyone with it or even tested anyone for it, and he has been a pediatrician for 30 years! I was so surprised when he said that -- and mostly was centered on making sure I was getting some type of antibiotic -- that I forgot to go back and pursue it with him. I guess my question is -- is pyroluria new, or is it something (like NAET perhaps) that conventional medicine does not address? Is it something I would need to try and find a DAN if I wanted to pursue. Also, are you pursuing these other avenues because the antibiotic is not working the way you want for you son? I am trying to figure out if there is more I should be doing. I received the Everyday vitamins from Kirkman yesterday -- I chose them because all the vitamins seemed mainstream and at lower doses -- yet I am afraid to even give her those. I had found Carlsons fish oil, with only Omega 3, but it too is sitting unopened on the shelf. As she is OK right this second, I am so afraid to do anything to rock the boat. Of course, I am rocking the boat, as we are now off augmentin and onto Pen V and I am literally holding my breath.

My daughter has a PANDAS-like isssue, and has found amoxicillin worked well (some tics/ocd, but dramatically improved), and augmentin worked exceptionally well (no symptoms worth mentioning). We will be going off augmentin next week, so I made an appointment, and went in to speak with the doctor this morning. I took in a lot of the information on zithromax, etc., though ended up not giving it to my doctor. (I chickened out, but he did seem to know quite a bit.) His recommendation was to stop augmentin after a two week full dose. Then, he is recommending Pen V 250 mg twice a day, long term. He said he believes we should try the Pen V first. I had asked to stay on augmenin, or to try zithromax. He said he believed it was best to start with the most basic antibiotic, which he considers Pen V. He said if the Pen V does not work, he would consider switching to augmentin or Pen V -- but seemed very firm that starting with Pen V was the way to go. He also said something about Pen V being used after someone had rheumatic fever to ensure that they did not get it again. I feel fortunate that my doctor will give antibiotics (without us traveling to a specialist) but am not convinced that Pen V is a good choice. Is anyone having good results with Pen V? Any positive (or other) experiences would be so appreciated. Michele, if you are reading, I did ask about that other illness. He seemed to think that since she was having only a vocal tic (nothing physical), it was more than likely more PANDAS related. I also asked about pyroluria, and suprisingly, he didn't seem to know that much about it, but said he would check. I found that very strange that he didn't know about it (maybe I was mispronouncing it or something) -- but it is obviously not something he runs into every day.

Dedee, My daughter is like your child. On antibiotics, she is fine -- almost perfect. Off - well, night and day. I know you use the 2:1 fish oil (NSI) and the antibiotic (Pen V?) -- is there anything else you find helpful? I am sorry if I've gotten your supplements/antiviotics wrong -- I have been searching the forum so much everyone/everything is getting all mixed up in my head!

I would not be freaked out. I think her child's experience was very unusual. I am letting them go on their school camps (only one and only one night). But two weeks at camp -- I don't think so. Maybe I'll change my mind by summer. My doctor mentioned the mennningitis vaciine to my daughter, but he knows I am so -- well -- freaked out by all this -- he said we wouldn't think of giving it to her until she was ready to go off to college.

My best friend's son ended up with MRSA from camp this summer -- very serious, with pneumonia. So, I have already told my kids no camp this summer. (I have also gotten rid of all soda, chips, cookies, etc. in the house -- I am so popular these days!)

Just wondering what y'all are doing about yourselves. I am convinced that I do not want my kids getting the flu vaccine. However, I do catch a lot of what goes around. So, I am thinking for my children's sake, I should probably get the vaccine. I don't believe overall it is a good vaccine, but I would feel bad if I gave my kids the flu. What do you think?