JJMom39

I agree that while chiropractic treatment might help with relaxation, it won't be the thing that treats PANDAS. Since the neuropsychiatric symptoms are caused by an autoimmune reaction to strep infection, the infection and the autoimmune response need to be treated/addressed. My ds has had some osteopathic manipulation treatments as part of our approach to his various neurological problems, but those treatments are not what we are using to treat his PANDAS. We are using antibiotics (azithromycin has worked the best for him so far) and a natural anti-inflammatory supplement called Enhansa. We are only about 5 weeks into his diagnosis so we have not reached the point of IVIG. There are wonderful, helpful, knowledgeable people on this forum so you are in the right place!

I am so sorry you are dealing with this! Since I'm fairly new to the forum I don't know the details of your previous dealings with your school, but have you reached the point of formally requesting that your kids be referred for an IEP? Or is the school trying to say that they don't need to be evaluated? Our experience with getting my ds an IEP has probably been different from the typical experience because he goes to a private school, but it was the public school system that had to process our request to have him referred for an IEP and then they had to go through all the steps of evaluating him, etc. If you request that your kids be referred for an IEP, the school system has to respond to you. If they refuse to initiate an evaluation, you can take action with an advocate or attorney. If you aren't making enough progress by trying to work out accommodations with the school it might be better to initiate the formal process. Your state department of education should have some resources. My state has a coalition for the education of children with disabilities that provides assistance to parents with IEP's, 504's, etc. Your state might have something like that also. You can also have your kids privately evaluated and then give that information to the school system. They have the right to do their own evaluation, but in our case we had an extensive neuropsychological evaluation and an occupational therapy evaluation prior to requesting an IEP and both showed there were significant issues for my ds. The school system accepted these and then did some evaluating of their own. For us I think the private evals were key in helping the school system see the need for an IEP because they were so extensive, and the data could not be manipulated to the advantage of the school system. We did not have my ds's PANDAS dx at that time...that came late in the process of the school system evaluation, so they were working with symptoms and prior diagnoses (like dyspraxia and anxiety) and not a specific PANDAS dx. I agree with Buster that symptoms and how they are impacting access to the curriculum is important and that working with other diagnoses that go along with PANDAS like OCD or anxiety or TS or adhd might make things less of a hurdle. That said, if you need something else for that nasty school nurse there is a good article on PANDAS in a publication called School Nurse News (see link below.) I gave it to my ds's school because I thought the source might carry some weight. It's bad enough that we are all dealing with such a nasty disease but to have to deal with doubt and ignorance and contention is exhausting. We are considering putting my ds in public school next year because the demands of private school are too much for him, and I fear we will come up against a lot more struggle and misunderstanding in that setting. http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

Something that helped my son with his first MRI (he was 7 at the time) was showing him pictures of the MRI machine in advance of going for the test. We looked at images online and talked about how it would be taking pictures of his brain. For this first MRI we had the option of sedation if it would have been needed but he did not need it. He was able to wear special goggles that he could watch a movie on and that kept him relaxed and still. I'm not sure if he would have been able to be that still without the movie though. For the MRI he had about 10 days ago we did not have the option of sedation (different facility.) He did watch a movie again, but he was coming off an exacerbation and it was harder for him to be totally still. He did fine for the first half but then was a little fidgety during the second half. The tech had him shake his hands and feet in between images to get the wigglies out, but towards the end we did opt to put the restraints on his arms and legs, very lightly, just as a reminder to hold still. My husband and I also stood next to him and held his hands as another reminder to be still. For both of his MRI's we were able to be in the room with him. Ask if that is an option at the facility you will be using. That might help your dd be more calm/relaxed. At times the tech seemed a bit annoyed that my ds was fidgety, and she assumed it was a tic. Before we finished the test she sent the images to the radiologist to make sure he could read them, even with the little bit of movement going on, and he could.

I just want to thank all who responded in this thread. I cannot imagine negotiating PANDAS without all the information and support that is found on this forum. Hearing different stories, having access to important information, and knowing there are others who are going through a similar experience is invaluable.

Re: the MRI, sounds like the Dr. might be trying to rule out or rule in other causes for your dd's symptoms. And an MRI seems like a fairly standard test for a neurologist to order. My ds has had 2 MRI's. The first one was ordered by his first neurologist to look for possible causes of the tremor he has. He just had the second MRI a few days ago. That one was ordered by the neurologist who is treating him for PANDAS. She ordered it because she said sometimes inflammation can be seen after a recent PANDAS exacerbation. I don't think that the presence of inflammation is definitely diagnostic of PANDAS, but would be an indicator depending on where in the brain it is located. I could be wrong about that though. We are pretty new to all of this too. We don't have the results of his recent MRI but I will post them when we do.

KaraM--Ditto on loving your post and thank you for sharing. Your description of your dd's drawing really touched me. It made the inner anguish that all of our kids suffer so tangible.

My ds8 has responded to azith (he is on his third round) but is not back to where he was before his recent exacerbation. Our ped. does not want to move to prophylaxis yet after all because he is not consistently better enough. She would like to try Bicillin shots next. Has anyone used these, and if so did they work? If so, how well did they work? If you have used them and did not like them or they did not work, can you tell me about your experience with them please? Our ped. likes Bicillin shots for various reasons, but they are a total unknown to me. Thank you!

I totally agree. Low dose makes me nervous - not there yet. I also like the idea of short bursts of second antibiotic to get the hiding strep or anything else. Aug with a couple of days of azith monthly. The idea of mixing it up with different antibiotics - just the basic ones not the newer big gun - also sounds good to me. I would support a lyme method - to get rid of anything. I don't think doing this halfa** is an option. I haven't read anything to support these ideas - but it seems logical to me. Both higher doses and mixing it up with different antibiotics make sense to me. Has anyone studied abx use in PANDAS kids to look at what works, what doses, how long, etc., or are docs going with educated guesses, experience, and what works for an individual child?

My son is 8 and he weighs about 68 lbs. With what you said about your dd's dose, 250 mg 1x/week for him sounds very low. And, I had forgotten about the issue with regression when doses are dropped back. I do think we are going to keep him on azith, even with the resistance issue in this area. With all the benefits you mentioned, and how much it has helped him recently, I am nervous about switching meds at this point. With long-term full-strength abx, what do you do about the potential for the flora in the gut to get out of balance? Have you found that probiotics are enough to keep things in check? I worry about the impact on the immune system from imbalance or over-growth of bad bacteria, etc., and our dr's aren't much help in this area. One doesn't worry about it, and another is really hardcore about the potential for problems. Just one more thing they don't agree on! I agree that 250mg/week is too low. How old and big is your son? My dd has been on 250mg/day of Azith for almost 3 years. We started in June 2008 (about 43 pounds, end of 2nd grade). We have even had a couple of periods (about a mo. at a time) when we've increased her to 500mg/day. She is about 65 pounds now. The Stanford U. rheumatologist felt 250mg/day would be a safe dose for her for years. In general rheumatolgists, Lyme docs, and the popular PANDAS docs on this forum (eg. Dr. Latimer, Dr. B.) are not afraid of long term full-strength antibiotics. For whatever reason, PANDAS kids do better on full-strength antibiotics. When doses are dropped to lower prophylactic doses, they tend to regress (Saving Sammy is an example of that). Many pandas kids don't seem have a good immune system against strep (they get strep even while on antibiotics, they get strep more often), perhaps some of these kids have lingering strep hiding out (intracellular, or in sinuses) in their bodies, or perhaps the antibiotics offer some other benefits (immune modulation?). Things I like about Azith: 1) long 1/2 life 2) gets intracellular strep better than other antibiotics 3) may have some activity against mycoplasma

My ds8 just had an MRI this morning. The ped. neurologist who is treating his PANDAS wanted him to have one because, according to her, sometimes inflammation can be seen, especially right after an exacerbation, which is where we are at now. I can post results when we have them. Not sure how long it will take. He had an MRI 18 months ago for his tremor (we did not know he had PANDAS at that time)--this first MRI was 6 months after what we now know was his first PANDAS episode. Those results were normal, but they weren't looking for inflammation so I don't know if they would have seen that or what. Just not sure how that all works.

I meant to include where we live in my original post but forgot--sorry! We live in central Ohio. The study on strep and abx was conducted by Nationwide Children's hospital. I do not know if the public can have access to this study or not. I will have to ask our pediatrician when she returns from vacation. She did not specifically mention if the study looked at 5 or 10 day treatment courses, just that they studied to which abx strep in this community is resistant. (I will have to ask her about the 5 days or 10 days also.) The study would apply to strep in this community, not even other cities or communities in Ohio. She also said that strep is the only infection that has been studied in relation to how long the infection should be treated, and the conclusion was 10 days. (As far as I know this was not the same study as the one I mentioned above conducted by Nationwide Children's.) She did not say if this study was a general one or one based on strep around this area, or if this applied to treatment with any abx. I assumed she meant the 10 days applied to any abx, but that's another thing I will have to clarify with her. She treats strep for 10 days no matter what, and now uses clindamycin or Keflex because of the new strep study for this area. Re: Omnicef she said she used to like it but now doesn't love it because of the Nationwide Children's study showing 30% resistance. If it works for your dd I wouldn't worry too much about this study since it applies to this area only. My ds was initially treated with Omnicef for 5 days. And his dose was split into two times per day. We did not do another 5 days because there was no improvement whatsoever. That is when we switched to azith. Maybe Omnicef for 10 days would have made an impact, but he was falling apart and I wasn't willing to take that chance. The diagnosing ped. who gave him the Omnicef and then the azith likes to use Bicillin shots more than azith because she thinks there is risk of resistance down the line with azith use. I didn't want to start with the Bicillin because I just wanted him to get better and Bicillin was an unknown to me. I had read a lot about azith and wanted to try that first. This dr. did not mention the Nationwide Children's study so I'm assuming she had not seen it yet, or I don't think she would have given us the azith. It has worked well for my ds, but I do have concerns about using it longer term since it had such a high failure rate in the Nat. Ch's study. Our regular ped. does not like Bicillin shots for strep but she didn't elaborate too much on why. There is just no agreement on any of this!! Because it is such an individual thing maybe the best we can do is find what works for our child, continuing researching and asking questions, and stick with what works for us until it no longer works.

We are exactly one month into my son's PANDAS diagnosis and are now trying to figure out the best course of action for prophylactic abx for him. When he had his first episode 2 years ago we did not know we were dealing with PANDAS so he was only treated for strep infection (with amoxicillin). With his recent strep infection, the first abx he took was Omnicef and it did NOTHING for him. He actually got worse. He was put on azith and got much better, and a second round of azith seems to have helped even more. We have seen 3 doctors (the ped who diagnosed him; his regular ped; and a pediatric neurologist) and they have very different opinions/ideas about prophylactic abx. Needless to say this is making us crazy, but we are not surprised by the lack of consensus. The diagnosing ped does not believe in long-term abx use. She will only give 5 days of an abx, then wait a week or two to see if or how much symptoms improve. If another round of abx is needed she will give 5 more days. She continues like this until symptoms improve. She seems very tied to this way of doing things. We don't like this approach--it's too rigid and doesn't take into consideration that there might not be improvement at all in 5 days of treatment (as we experienced with the Omnicef) so in the meantime things deteriorate (as we experienced). I am really bugged by a dr. who won't consider another approach, especially when the original approach obviously didn't work. Our regular ped has never treated a child with PANDAS, but had very good new information about which abx's the strep in our community is resistant to. A new study here showed that 50% of strep cases are resistant to azith; 30% are resistant to Omincef; and 30% are resistant to amox. She does not like to use azith for this reason (or Omnicef) and prefers to use clindamycin or Keflex for strep. BUT, when she did some research on propylactic abx for PANDAS she said that she would recommend daily amox and try it for one year. This is based on the fact that amox has been used for a long time as a prophylaxis for rheumatoid fever. BUT, what about the fact that 30% of strep here is resistant to amox??? This doesn't make sense either. She also said she would not use Augmentin because it's a big, broad abx and it's good to save those for when they are needed. And she didn't want to use clinda or Keflex as prophylaxis because they have to be taken 3 times per day and that's a pain. (Okay...but what if they work?) The ped. neurologist (who does treat kids with PANDAS) recommended 250 mg of azith one time per week. That made some sense until we heard the tidbit about 50% of strep here being resistant to it. (This dr. is in another city though so maybe that is why she still uses azith.) The azith really has brought my ds to a much better place so for now at least it seems to have worked for him. I am tempted to stick with it, at least for now. But the 250 mg/week sounds low. I know there is no standard procedure for prophylaxis and it is an individual thing, but how do you figure out where to start with making a determination about what to try? (I think our regular ped could be convinced to let us try just about anything we want, except maybe azith [but we can get that from the ped. neurologist]). It's so frustrating to be dealing with what seems like a guessing game! Right now I think I want to stay with azith because it has worked well, but is that crazy when 50% of strep cases here are resistant to it? I really don't know how to figure this out.

I can't answer whether or not the defiant behavioral attitude is for sure PANDAS related, but I can tell you that my ds has the same issue. It mostly comes out when he has to stop playing a video or computer game. Not being allowed to continue or not having time to transition will set off a major battle or meltdown. I think of this as related to his PANDAS for sure, although he is this way all the time, not just during an exacerbation. There are symptoms that for him never clear, like this defiance and the cognitive inflexibility. My non-PANDAS ds might have some issue with being told to stop playing a game, but his reaction does not come close to the behavior of my PANDAS ds.

We don't have experience with this protocol yet, but I just took my ds to a pediatric neurologist who treats PANDAS and her recommended treatment plan includes one 250 mg tablet of azith per week as the prophylactic dose of abx. My ds weighs about 68 lbs. I am too new to this to know if that is not enough, enough, or what, but I thought I would let you know what she recommended to us. We are coming off of a strep infection so we are doing a 10-day course right now. (He was not on anything when he contracted strep because we did not have his PANDAS diagnosis yet.) She also recommended that with a known strep exposure (not infection) we do a 5-day course, and then go back to the prophylactic dose. When he tested positive for strep his pediatrician put him on 200 mg of azith, so she was using even less than the neurologist recommended.

S&S-My ds8 has been in OT since the fall and after realizing how much sensory processing problems are at the root of some of his issues, we were able to find things that have helped calm his meltdowns, and also his PANDAS-related rage, tantrum and meltdown issues. When he is in the throws of a meltdown or rage we do one or a combination of the following: wrap him tightly in a blanket; hold him tightly, like in a bear hug, with his limbs close to his body; lie on him; and/or heavily lean into him. The deep pressure from these things gives input to the proprioceptive system which is calming. The first time my husband lied on him his meltdown stopped cold. It has worked that well for me too. If he is in the throws of a rage it can be tricky to get him wrapped up or still enough for the deep pressure, but once the deep pressure input starts he calms right down. It has been our magic. And he doesn't seem to fight it as much now I think because he knows it will be calming. It doesn't prevent a rage from beginning but it has brought them to an end. To me it's like he has no control over himself, and then with the deep pressure input he is able to calm and come out of it. As some other moms have commented swinging can be very calming also.

I can't imagine trying to negotiate all of this without the wonderful advice and support found here, so thank you all again. Vickie, very thought-provoking comment about our having a dr. who is proactive in testing but who might lack in treatment. We have been with her for only a month, and only one week of that has been with the PANDAS diagnosis so I really can't speak to her success or knowledge at this point. I am thinking about contacting the only other PANDAS -friendly dr. I am aware of in my state and see what her treatment approach is, or possibly one of the PANDAS experts, who are all out-of-state. But in the meantime I think my ds needs to have longer treatment so that is what I have requested. I am hoping to hear back from our dr. today about trying Augm and having a longer course of use. The 5 days on Omnicef did nothing for him, as far as I can tell. He's worse now than he was before starting it. LLM, thank you for the reminder that finding out what infection(s) we are dealing with is key--I'm trying to wrap my head around the vast array of possibilities there, and I have your excellent list of tests to ask for so that is on my list for the dr. also. I did not know that only partially treating an infection is a greater risk for abx resistance than taking abx for longer so thank you for that info also.

Over the last week, since my son was diagnosed with PANDAS by his new pediatrician, I have been trying to read and research as much as possible. I now find myself in the weird position of knowing so much more than what I did when she diagnosed him, but feeling like I don't begin to know enough. I am troubled by one key aspect of her treatment plan, and I would greatly appreciate any feedback/thoughts. She treats for 5 days with Omnicef and that's it, unless more is needed. She also treats with Enhansa (curcumin) for the inflammation. The Enhansa is long-term. We are at the max dose of Enhansa--have been there for the last 3 days. My son finished the Omnicef on Monday. What is odd to me is that in all the things I have read, I have not seen anything about treating with abx for such a short time. I do know his ped. does not like the idea of long-term abx use--she thinks the inflammation needs to be addressed. I get that, but is 5 days long enough to kill anything off??? Some background: My son's first PANDAS episode was over 2 years ago after strep throat, but we did not know at the time it was PANDAS. He was diagnosed by the new ped. because she routinely checks strep titers and ANA levels in kids with a history of strep and certain symptoms. Just a few days before we got the diagnosis he started having anxiety at night and then for a few days he had some mini rage outbursts. It seems to me that something was kicking in and causing these symptoms. He had a mild cold at the time so maybe that was it, or maybe it was the staph infection in his finger the month prior, or maybe asymptomatic strep? Anyway, after he started the Omnicef he had a couple of days of tantrums and some very mild, short-lived tics. All those symptoms are gone, but now he is either hyper or in la-la land. And his inattention is soooo bad, worse than ever. Last month when he was on abx for the infection in his finger he was taking Augmentin. He had some days when his inattention was really improved. I did not know at that time that he has PANDAS and thought that improvement was due to some new supplements I started around that time also. Given that he is not himself and that 5 days doesn't seem like long enough to kill much, it seems to me that he should be on abx for longer than 5 days. And there's the fact that there is strep in his school. Does that make sense? And, I would like to ditch the Omnicef and try Augmentin since there was improvement in attention with that. For those who have used Augmentin and had good results, did you find any difference or benefit among regular Augmentin or Augmentin XR or Augmentin SR? I'm just trying to find the best approach, while walking the fine line between advocating for my child and not playing dr. at the same time! Thank you for any advice.

This doctor is in Twinsburg, OH. This is the only dr. in Ohio I am aware of other than the one who treats my son (in the Columbus area.) This information below comes from the Saving Sammy Facebook page. If you look under the Discussions tab, you will find a list of doctors who are referred to as "PANDAS-friendly." I do not have any personal experience with her, but she might be close enough to you, or at least worth a phone call. My son was diagnosed with PANDAS only one week ago so I don't have much experience with his new pediatrician yet, but she is at least familiar with PANDAS and has treated other PANDAS children. I could give you her info if you are interested. OHIO Dr. Nevada Reed, MD (neurologist) 8054 Darrow Road Building D, Suite 5 & 6 Twinsburg, OH 44087 phone: 330-963-8600 fax: 330-963-8680 http://www.kidslinkohio.com/family/reed.shtml

Thank you all for the input. I was panicking because my son's Dr. made a point of telling me that he could not have a probiotic with strep. therm. in it. It's interesting to me that some kids are okay with it and others not. I will probably scrap it and take something else. There are others I routinely take anyway, and I don't need the added stress or worry. Only one week into a PANDAS diagnosis and I am ready for a breakdown!

Thanks for your testimony on Enhansa. My fingers are crossed it will make an impact for my son. We are only 7 days on Enhansa and only 1 of those has been at the highest dose. I'm sure it's too soon to be seeing anything so I'm trying to be patient. We had a day without mini rage outbursts, but now he is hyper (so not him) and sometimes non-responsive. I know he hears me, he's just not responding. And he's in la-la land some of the time also. These things are scaring me.

Thank you for the info/input. I am going to look into LDN for my ds. We are using the Enhansa brand of curcumin. My ds has only been on it for 6 days so it's too soon to tell.

I just realized that Streptococcus thermophilus is in one of the Klaire Labs probiotics that I take myself. My PANDAS son has never taken this probiotic, but I am wondering if my taking it could be a problem for him?? I used to take it daily but now take it every few days. I feel like I should get it out of the house!

I had a conversation with my acupuncturist today about PANDAS. Although she had heard of PANDAS, she does not know more than the name. She does, however, know a lot about supplements, and she was wondering if any of the following are used in PANDAS for inflammation: boswellia (an Ayurvedic herb) anti-inflammatory GLA (found in Evening Primrose Oil, but you can buy GLA extract which she said is better) also anti-inflammatory and a powerful antioxidant She was also wondering about the use of hyperbaric oxygen for PANDAS. She is from the UK, and there MS, chronic fatigue syndrome, and other inflammatory conditions are standardly treated with hyperbaric chambers. Is anyone familiar with this? Also, I believe I read a post here from someone whose child (an older teen I think?) was taking low-dose Naltrexone for the immune system. I am very curious about this. I have been on LDN for the last few years for PMS (can't begin to explain why it helps but it does) and am wondering if it can be used for younger children, and how often it is used for PANDAS. I know there is a web site for LDN. Has anyone tried it for PANDAS?

Very interesting about staph infection causing issues for your son. I was wondering if that could have anything to do with what we are dealing with, but ruled it out because I had no idea staph could cause a problem. My son had a nasty little infection around his fingernail but it cleared quickly, or at least I thought it did. Again, so much to learn!

I read the fact sheet before we started the Enhansa and was wondering if die-off was at least part of the issue with symptoms flaring up. We did start the Omnicef and the Enhansa at the same time. Initially my son was on one Enhansa per day. We did that for four days; yesterday we went up to three and today up to four. His dr. wanted to make sure he could swallow the pills before she raised him to the full dose of four per day. I was concerned that going up that quickly might be an issue, but she wants to address the inflammation right away. You mentioned your daughter used to be on Enhansa and that you had good results. What types of things improved?