LisaM

Irelandsmom, There is a pediatric rheumatologist at the University of Chicago who had dealt with PANDAS, Dr. Karen Onel. With the pains she has been having, a rheumatologist might be a good idea for a consult. Also, check the ASO titer and the antiDNASE AGAIN in about 3 weeks to see if it is rising. Some children's titers don't rise though, even with strep. Also, test for strep again, at least a few days after finishing the antibiotic, make sure they get a good sample, and have them send it to the lab for at least 48 hours. Ask them to run the full strep panel, both group A and non group A. Amoxicillan may not have covered it. See the pinned threads above to read about Azithromycin (zithromax) for eradicating the intracellular strep. A rheumatologist or Infectious disease doc might be more willing to at least try it to see if it helps. Good luck.

http://www.generationrescue.org/pdf/yasko.pdf Found on www.generationrescue.org under treatment reading materials

Thanks for your reply EAMom, We live in Illinois. I did start the Zithro and the blinking has stopped. I'm not sure any of our doctors would give us more, and honestly, I'm not sure she needs more. With no protocol and so many children needing such different doses and types of antibiotics, we may watch and see how she is after the 10 days. It all went away for her two years ago after 5 days of Zithro then (for a proven strep) Our ENT told us once that if we wanted to do a double dose of Zithro to make sure the strep was eradicated, that we should do 5 days on 5 days off and then 5 days on again. We are not even sure we missed a strep this time. It could have been the pink eye (viral or bacterial) that triggered it. Her separation anxiety in the past was severe and did go untreated because we were not considering PANDAS at the time and the strep was negative. The separation anxiety finally went away about four months later. Her birthday is right by the cutoff so we waited a year to start kindergarten and let her be older. I did see Dr. K a long time ago for a consult and he seemed to want to treat her only when she had more serious symptoms. He struck me as wanting to go right to steroid and IVIG if she got worse some day. He did not seem to want to be our regular pediatrician for meds, testing etc. Is there any medical literature on long term antibiotics for PANDAS yet? Is there anyone else out there who has not needed long term antibiotics yet? Anyone who only treats strep aggressively at the time of outbreak? Anyone with a great Chicagoland doctor?

Well hello everyone, I see now there is a dedicated PANDAS section here. And much more information being shared than ever before! I am returning to seek advice and opinions. My not so brief history is two years ago my dd at age 4 began eye blinking and shoulder shrugging during a time her brother had strep. We didn't have her tested at his onset of strep as she did not have classic symptoms. When her tics began we had her cultured and the ped ran an ASO and told us everything was negative and thought I was nuts when presenting PANDAS NIMH info. One month later she tested positive for strep w/o classic symptoms, was put on Augmentin. Was still blinking and shrugging. Next month she tested positive again with only a tickle in throat and screaming at night. Was put on Zithromax for 5 days and about a week later all the tics went away. I also had started the Bontech vitamins about the same time. At the time I attributed it to the vitamins as the idea of PANDAS was negated by doctors I trusted at the time. Fast forward to the fall and she started kindergarten and had a sore throat, was tested (for strep group A only as that group doesn't believe in treating any others) was negative and 10 days later she was hit with major separation anxiety to the point that we withdrew her from school. We weren't really thinking PANDAS at the time again because of the negative strep. It lasted about 5 months and in the meantime we put all the pieces of the puzzle together realizing the strep we must have missed in the past, episodes of frequent urination, anger, defiance, restless nights, very difficult days. She stayed home until the next year (this current school year) and has done very well. She had strep twice in the fall, one time doc talked me into Amox, and it failed so we did Omnicef which seemed to work. While on the Amox though she was confessing a bunch of innocent child things she had done through the years. It didn't dawn on us at first that this was OCD. not until she was on the Omnicef and it stopped. We realized then that PANDAS was rearing its ugly head again. Second strep was treated with Zithro strep dose given by our ENT and there were no PANDAS symptoms. To the present, the past 7 weeks or so she had what seemed like two bad viruses back to back. We tested her for strep a couple of times but there was one week where we think we could have missed it. She did have pink eye in the middle of it and began blinking again. We thought it was a viral pink eye as it was in the middle of what seemed like a virus. We did start her on an antibiotic drop a week or two later. After 3 weeks of coughing, she had a fever and was treated with Zithromax for the cough. Was negative for mycoplasma pneu. Her ASO was 200 and DNASE was less than 70. Took both of those again 4 weeks later (after the Zithro) and they were exactly the same. Her ASO was also 200 back at her onset two years ago. She has had an ASO of 100 during a well/no symptom/long time since strep period. Anyway, she is still blinking and it is definitely a tic again. She also has a bit of hand shaking at times when excited. I have tried children's motrin and that does seem to help some at times and it has lessened overall. I do happen to have a prescription for Zithromax that I am thinking about giving her to see if it helps. It is only a 5 day prescription. I did take her to see a pediatric rheumatologist for the first time this week and she seemed to see the history as PANDAS but feels she is a child who reacts to viruses as well. Like once the tic is triggered, she is predisposed to it, even if the original onset was triggered by strep. As long as it is not interfering with school she thinks I should not worry about it. She did say that if she has continued strep triggered PANDAS symptoms that we could consider prof. abs. We find ourselves at a crossroads, we want to protect our daughter in whatever way we can, but the thought of long term antibiotics is not appealing either. We realize that our dd's symptoms, although very serious to us, are not as extreme as many others we have read about. We want to protect her from any progression of this disease and the damage it causes. Just wondering what your thoughts are about me giving her the Zithro. It would be enough for almost a full strep dose for 5 days. I'm not so sure this is a strep thing. I know that one of the bacteria that causes pink eye is strep but that should have been covered by the drops and the zithro for the respiratory infection. AND, what if it does work? Is 5 days enough? I'm not sure how I would get more. Thanks so much.

Kelly, I am so very happy to hear the good news about your son's reaction to the flu. I will pray for his continued good health. Hang in there. I do understand all you are going through as well. I believe we all find our own paths that are right for each of us - in time and with understanding and faith. Here's to a very healthy new year!

Hi Kim and all who understand this, Kim, a while ago i read one of your posts talking about this stuff and found it very interesting especially since I believe you reported a cause to be the use of tylenol and motrin during strep?? Is that or something like that right? Your link above really helped me to understand what you are talking about but what are the signs to even suspect an issue? I just started my son on a multivitamin high in B's and I give him extra magnesium once in a while just to see if it helps him get to sleep better (no issues with tics etc. with him but do have with older sister) just trying to be comprehensive with the younger sibling. I have to say that he has not been himself lately, waking up earlier, not napping as long, very irritable. He is 2 and certainly could be normal. What else do you look for? How did you and sunshine end up getting genetic testing?

Hi Peggy and welcome to latitudes! My best advice is to just keep reading, reading, reading. There is so much information here and other places on the web that it can be overwhelming. You will find that when you read the same thing a month or two later you will connect with the information. We do the Bonnie's vits for my 5 year old and I think they are working well. My daughter's situation is almost definitely PANDAS (strep triggered) and there has been some debate about the grape seed extract in Bonnie's for people with autoimmune (PANDAS) issues so it is in the back of my mind to look for another alternative. But, I must say, that I have shown the Bonnie's vits to several doctors, both conventional and not, and all think they look like a really good multivitamin and have had no problem with them. There are many natural aids that you will find here, many specific to specific kinds of tics and Cheri (Chemar) the facilitator can probably help you greatly with these if you tell the specific things you are seeing. There are other energy treatments to consider as well like accupuncture, chiropractic and NAET (go to naet.com for more info). We are doing the NAET treatments in our family. The concept of it is really very interesting and I highly suggest you read about it and order the books for yourself. I come from a very conventional background but this whole situation with my daughter has really opened our eyes to alternative/energy/diet/lifestyle issues. 9 is the beginning of puberty for many kids and I have read here and been told that there really can be an increase in symptoms at this time. It is early though for your child - probably pre-puberty so anything you do now I can only imagine will help. Good luck and keep asking questions. Your husband may even benefit from something you learn! also, I am interested why you took vinegar out of his diet. Did you have specific testing done on him?

I've also heard from a D.O. about using Propolis as a natural antibiotic but don't know much about how to use it, doses, long term etc. Has anyone else heard of it? Rachel, let us know what the M.D./homeopath says. http://altmedicine.about.com/cs/herbsvitam...ee_propolis.htm

Faith, I forgot to reply to you. The oppositional behavior for us was very obvious and strong. Like a very strong willed defiant child. The screaming was as Tracie described, unstopable and not able to be comforted or controlled. We thought it was night terrors or something. I believe now it was strep and I am so painfully sorry we didn't take her to the doc. Your son sounds like our daughter now which I would consider pretty normal for any kid, especially a smart 8 year old. Yours doesn't sound necessarily like ocd. We let our daughter sleep with us most of the time. It is just easier than her coming in in the middle of the night and disrupting everyone and besides I really like snuggling with her and listening to her breathe.

Tracey, The tests will no longer tell you what was going on at the time of onset because it was so long ago but some kids' titers remain high for some reason and it could still be beneficial to see where your child is now. I believe the strep you have is strep B and many women (people) carry it and antibiotics during delivery help to not pass it on during labor (can turn into meningitis I believe). http://www.medicinenet.com/group_b_strep/article.htm From the link above it seems that if there weren't problems at birth you probably didn't pass it on. There are kids who have continually high strep titers despite antibiotic treatment and I believe someone here stated once that the doc who is featured in one of the articles on the home page believes those kids could have strep in their intestines - I would imagine that could be strep B per the article above - but I really have no other knowledge of it.

Tracey, Your story is so similar to ours! Our daughter had some screaming nights and day spells and some of what we now know are ocd tendencies similar to what you describe. For two years now we have been dealing with an on and off angry, oppositional child who we thought was just going through a very difficult phase. We have recently caught strep in her with virtually no symptoms (during one of which she was screaming in the night!) and feel positive now that the past screaming episodes she had strep with no classic symptoms so we missed it. Go to your doctors and get an ASO AND Anti-DNAse titer drawn. It wouldn't hurt to get a throat culture first. Make sure they culture it and I would suggest getting it for any strep, B etc., because other streps can be treated with antibiotics as well. If the numbers are high most doctors will still give you an antibiotic. Even if the numbers are not high but the symptoms are very strongly present you may want to find a doctor who is willing to give you a trial run of antibiotics to see if the symptoms resolve. Search through the threads here and look up more info on doctors, tests, treatments etc. Keep asking questions, even if they don't get answered right away. From now on you will need to test your child and other family members for strep often - especially if there are classic or non classic symptoms. Believe it or not, you can buy rapid strep tests to use at home - just google it. A culture is always best though. I know this is very scary - we are still terrified about what is going on - we have only recently put the pieces together to even consider PANDAS - most docs don't know anything about it and will deny it in the face of lots of articles etc. This site will help you find one who does and help you talk to your current docs. It is very hard to know what to do so just take it one step at a time. After the titers are drawn, your next steps can include diet and nutrition and supplementation and many natural treatments if you are interested in trying that. Good luck. Oh also, there are some other things they can test for that can cause neurological symptoms like Lyme disease.

Yes Michelle, thanks for that reminder. I did not know anything about anything when my daughter presented with tics when her brother had strep and the doc we went to did run an ASO titer at the time. It came back less than 200 and they dismissed strep as a possibility entirely. Interestingly, I just had both ASO and DNase run on both my kids and hers came back less than 100 this time. So why was it higher the first time? Perhaps it was just starting to rise??? Had I known then what I know now I would have had them run the ASO and DNAse again 2 or 3 weeks later. And I would have put her on antibiotics no matter what the result said because her brother had strep! I am trying to learn more about these titers and when they rise and when they fall. From what I understand the ASO rises about 2 weeks after the initial infection, and the DNAse rises 4 to 6 weeks after. Also, I believe the key is to have multiple titers run to follow it accurately. While on the subject of strep, I thought I would mention the fact that my daughter has had strep B in the past (with a very sore throat) and the doctor we had at that time did put her on an antibiotic. Some doctors do not treat anything other than strep A. Some doctors don't send their cultures to a lab, they culture it themselves and they do not test for anything other than strep A because strep A is the one known to cause rheumatic fever. I believe PANDAS and PITANDS kids would benefit from being diagnosed with ALL streps and treatment for them should be seriously considered. My daughter had a very bad sore throat once and it was cultured only for strep A and was not treated and 10 days later she came down with very severe separation anxiety to the point that she would not go to school at all. This was all before I was considering PANDAS or PITANDS for her.

Kelly, I agree that trying to figure the whole tic disorder spectrum can be very overwhelming at times because of the seemingly endless triggers and causes. Cheri, I was wondering if you happen to remember if your son had an illness at 10 around the time of the explosive increase in symptoms?

I thought I was just missing the connection to your first link but yes it a good read as well. That is an interesting abstract and I would like to go get the whole journal article. I also want to know were the subjects all suspect PANDAS children or categorized as TS children? If all TS children, are they suspecting autoimmune for them as well? To further complicate our discussion, I found this article - http://ajp.psychiatryonline.org/cgi/content/full/159/4/657 Adding to the discussion of IVIG treatments for PANDAS ???? And this abstract http://www.springerlink.com/content/p0670q4371q57171/

Rachel, You may want to post again under the new topics stating you are new here, need advice etc. so that even more people can read your post and respond. Lisa

Kim, that is a test I have not heard of. I have not heard of that being done on PANDAS or possible PANDAS kids. Perhaps those who have seen Dr. Murphy or a DAN doctor can look to see if they've had the test done. I have heard of a third titer that measures the strep antibodies, Streptozyme. It would be interesting to see the results of the ANA in PANDAS kids. http://www.healthatoz.com/healthatoz/Atoz/...ibody_tests.jsp http://www.healthatoz.com/healthatoz/Atoz/...tibody_test.jsp

Cheri, I have been researching for a while for an appropriate dose of inositol for a 5 year old and have not found nothing consistent. Would you have any idea? Something in the low range but more than the 50mg she is getting in the Bontech vitamins??? I suppose I could just try minimal dose increases and take it from there as well. From what I have read even the 500 mg for your son, given his age, is actually pretty low. I have seen as high as 18 grams for children in trials. thanks, Lisa

Hi Kelly, I read that same post recently and it has been resonating with me. I am pretty sure it was Dedee. I am debating the whole tonsil issue as well. Our case is not as clear cut PANDAS as yours I don't think but we didn't have her tested regularly for strep the first couple of years because we didn't even know about the connection nor did we know of her almost asymptomatic presentation of strep. I'm torn both ways about the tonsils. I do believe they can act as a germ barrier and that natural side of me thinks we should leave them in, God put them there for a reason, but I also fear another strep infection and don't want things to get cumulatively worse as I have seen others report here. We are not on long term antibiotics as I am only recently considering PANDAS seriously for our case. Our titers are normal right now (I had both my kids tested).

Hi Flower, That is interesting that it got worse in your 30's. Did only the ocd get worse or tics as well? So I assume you are on the bontech vitamins for yourself then right? Do you have children? Have you read those posts about the grape seed extract and autoimmune issues? What do you think about it?

Dedee, Have you done any research on Inositol for OCD ?? - I've recently happened upon several articles about it in my search for help with separation anxiety and kept running into Inositol for anxiety / OCD. - fairly high doses in trials with children from what I remember.

Thanks flower and itsme for replying. I think they are working well. I was reducing the dose a bit because I had read about the possible problem with the grape seed extract for autoimmune issues (we are possibly PANDAS) but I think I did notice a behavior and mood difference so I upped it again a little. We are still at the minimal dose. Are either of you possible PANDAS? Please forgive me for not remembering. Lisa

Also, bmom, I don't think the ALCAT will tell you if there is celiac disease, just a sensitivity to wheat. Your regular ped can test for celiac. We are actually going to have the ALCAT done next week for my daughter. We have been very reluctant to do it because every doctor we have talked to, conventional and natural has said that it is not reliable at all but some here have found it helpful so I think we are going to see what it has to say. Lisa

Faith, I was wondering about the time last year with the big exacerbation- was a throat culture and/or titers run then? I wonder because I have read that titers can go down fairly quickly in some kids. Also what was the antibiotic used at that time? Was it the same one (augmentin) that was used again later with no improvements? At 3 when it all started was there strep involved that you know of? bmom, I think it is usually a good idea to get a culture as the rapid has like a 90 to 95% accuracy rate and if the person getting the swab didn't do a thorough job the rapid may not pick up enough of the bacteria to test positive. Also bmom, did you say it takes a week for your doctor's office to get results? That sounds like a really long time. But they didn't culture it this time right? You may want to consider getting your own at home rapid strep tests. Lisa

Hi Cheri, I haven't been able to figure out what IMO and IMHO mean?? Also, I searched for a Developmental Pediatric Specialist in my hospital group but nothing came up. Do you have any suggestions on how to find one? And one last thing with regard to the topic of this thread, do all tics or movements necessarily mean something? Like an exposure to illness, food etc. My daughter has started a lip puckering movement which has been gone for many months. Coincidentally she has had a particularly stuffy (allergy?) nose and chapped lips recently. Can these kind of things sort of trigger a movement that sticks around for a while? Thanks so much Lisa

Cas did get back to me and assured me that it was normal - the lab uses different sources for the lecithin and that can apparently vary in color. I'm still curious if any other users have noticed the variance as well. Lisa