swim

Results as follows: Diff (Abs) Monos .31; Eosinophils .05; Basophils .05 Dif (%) Lymphs high at 50; Monos 6; Eosinophils 1; Basophils 1

Sounds like we have a variation of your eye movement. For both of our sons, their eyes have gone through what I call tic phases where their eyes move up and to the side in one motion. It is over and over again and always worse when watching TV or at a movie theater. For us, the eye movement is a tic and is part of their PANDAS stuff not triggered by any meds.

Thank you for adding PITAND!

I was searching for another topic and found this post that I missed earlier. I am also very interested in EBV virus because I think that might have been a trigger for us. Our younger son suddenly showed PANDAS symptoms at the end of Jan. We took him to the doc that is treating our older son for PANDAS and she ran tests for strep and EBV. EBV came back positive and strep was negative. We did 30 days of keflex at 1,000 mg/day. After a few days on antibiotics, PANDAS symptoms reduced greatly. Since EBV is a virus and antibiotics are not used to treat a virus, interesting that symptoms reduced. He has been off antibiotics for just over a week now and no PANDAS symptoms. I didn't want to post anything about this until we had gone at least a week with no antibiotics. It would appear EBV was the trigger for him. We have an appointment next week to decide if we only treat with antibiotics when exposed to something or if we do long term low dose for prevention. I recently got a copy of the full medical file for our older PANDAS son and it appears EBV was also the trigger for him. Our pediatrician says EBV seems to be the trigger for our kids.

DCMOM: My sons gut issues also started after he started TICCING at 4 yeats of age. It first started slowly as stomach pain, diarrhia now and then, slowly it developed now as frequent bowel movements every day. He goes the bathroon as soon as he eats. the stools are also not formed. The doctors dismissed these isuues as IBS. But I want to rule out IBD hence I am seeing a new gastro who is willing to rule that out or find what is going on. By the way he is underweight. He is 10 1/2 and is only 56 pounds. He is the smallest in his class. Also my younger son started TICCING last year 3 weeks after a strep infection which directed me to PANDAS diagnosis. He is also complaing of stomach pain now. thanks, Madhu. We had a similar experience. When our son was 4 1/2 (now 11 years old), he started having frequent bowel movements that turned into bowel accidents. This was about the same time we saw OCD symptoms, but did not know anything about PANDAS. Stools were not formed and the accidents would come right after he ate. He also complained of stomach aches. Pediatrician thought lactose intolerance, but after removing all dairy he started having accidents after other foods like apples or turkey. It didn't make sense. After numerous doctors, we ended up at a naturopath who diagnosed him with leaky guy and candida. Candida was diagnosed after test of stool sample. We treated him for candida using natural supplements, cave man diet and rotation diet. Bowels improved and accidents stopped very soon after starting rotation diet, but it can take a long time to heal from candida and leaky gut - took us 2 years, but I think that is on the long side. Since so much of the immune system is part of the digestive system, I feel it has to somehow be related to PANDAS. Also, it was suggested that the food sensitivities were the result of leaky guy/blood brain barrier/etc. So, somewhere I feel there must be a connection, but I can't find anyone that an connect the dots for yet. I guess I am just tossing out the possibility of candida and leaky gut for the cause of bowl issues.

Doctor is going to have us try 1,500 mg keflex (500 mg 3 times a day) to see if we can get improvement before trying to switch to another antibiotic. I looked up dosage info and it looks like he could be on 1,360 to 2,721 for a strong infection based on his weight (60 pounds). So, maybe we have just not been on a strong enough dose when he has exposure to illnesses. We'll see ...

The highest dose he has ever been on is 1,000 mg/day (two doses of 500 mg). He has been on that dose since mid-Jan due to a flare up of symptoms. His long term dose has been 500mg/day. The 1,000 helped at first with this latest worsening of symptoms, but now we are seeing a backslide. I left a message for our doc this morning to see about increasing keflex or trying augmentin. We have never tried augmentin for PANDAS. Waiting to hear back.

Thanks for posting this link!

I saw a comment on another post about a dosage of keflex being too low. I checked out dosage guidelines and was surpised to see the dosage levels for keflex seem much higher than what we are using. With recent increase in symptoms, we are pulling our hair out! Wonder if anyone has any experience or comments about dosage for keflex. Our son is 11 yrs and 60 pounds. He is on 1,000 mg a day (2 doses of 500 mg) as we try to improve symptoms again. Does this seem too low?

Thank you for posting this. I am in tears. It is an indescribable feeling to hear this kind of an upate when we are 7 years into our fight with PANDAS. I sent a message to Swedo about our story about a year and a half ago. While she did respond the very next day, I was told to consider following standard OCD treatment for our son unless we could show a positive strep test at time of first symptoms. My gut told me that was not the answer. We all know it is difficult to show positive strep test at sign of first symptoms, especially when doctors or parents were not considering strep with these symptoms 7 years ago. This message makes me believe that someday I will be able to forget the strange looks I have gotten from family, friends and doctors over the past 7 years as we have tried to heal our son. Someday ... hopefully!

Shannon, Go with your intuition! After thinking about this PANDAS stuff for almost 7 years and trying different things with our son, I was to the point where it just seemed that food was somehow having an effect on symptoms. Almost a year ago, we did food sensitivity testing on our PANDAS son (11 yr old). The test gave us IgE and IgG results. There were no food items causing IgE reactions, but he did test positive for high IgG reactions to wheat, gluten, dairy,pineapple and garlic. We went on a strick wheat, gluten, dairy, garlic free diet and saw immediate (within 4 or 5 days) improvements in concentration, focus, sleep, patience and eye tics. We were at a point where we were not really seeing any PANDAS symptoms and then he got strep, which brought back the tics. We did have improvement again so a few months ago we started trying wheat, gluten or dairy once a week to see what would happen. Things remained good and we even had some wheat/dairy 2 or 3 days a week. Then, at the beginning of 2010, we saw increased tics again due to a virus. We are again trying to reduce PANDAS symptoms ... My guess is that maybe it has something to do with the blood brain barrier issue. Maybe our kids have these IgG reactions and the IgG antibodies cross the blood brain barrier and cause further inflamation. Does anyone have any thoughts on this? With the IgG reactions it can take anywhere from a few hours to a few days to see the reactions from the allergen, so it can be difficult to pinpoint the agent without the blood tests. I was told most food sensitivities would be seen as IgG reactions and not IgE reactions. Most allergy tests just test IgE, so it is important to get the IgG test. Our test did not test red dye, but my intuition tells me we get big negative reactions from this so we always stay away from red dye. Thanks for your post because it reminded me we need to be get back to our eating plan as we try to get symptoms under control again. I know the tests are controversial to some people, but we really did see changes when we removed the sensitive items from his diet. I hope it helps your son!

Does swimming in a pool with chlorine have relation to tics? We saw increases in tics after our son was in a swimming pool. I got advice from this forum last summer to give him an epson salt bath after swimming and it made a BIG difference.

Thank you so much for sharing this! We are planning to have T&A on our PANDAS son (11), but have to meet with ENT again on March 10 first before getting a surgery date. The reason for the surgery is that they found a cyst on his adenoids. Our ped is wondering if the cyst is harboring strep that antibiotics can't get to. Glad to hear things are going well and very anxious for our turn. Faith, I think I already mentioned this in a previous post, but our son is very light in weight, too - just reached 60 pounds and is 11 1/2 yrs. He is on the short side for his age and just skin and bones. I hope things go well!

THANK YOU!

Elizabeth - Thank you for your reply. Like your husband, I am rarely ever sick and the last time I was on antibiotics was over 22 years ago. I will let you know what we decide to do with me and how it goes. Please let me know if you get lucky and find a good Infectious Disease doc. It will be interesting to see how this plays out.

Our doctor did a throat culture, a nose culture and blood tests. Throat, nose and ASO turned out negative, but DNAseB turned out positive. My husband turned out negative on all tests.

Our oldest son has been dealing with PANDAS symptoms for about 6 years. After our youngest son started showing signs of PANDAS for the first time about 2 weeks ago, our ped suggested my husband and I get tested to see if we were strep carriers. The results are in and I tested positive as a strep carrier. My doctor is willing to treat, but has never treated a strep carrier before. I have seen threds about carriers needing the right antibiotics for the right length of time, but I am not sure what the "right" antibiotic is or how long treatment should start with. Does anyone have any advice or experiences to share so I can get started with a treatment?

I am sorry to hear about the ups and downs - just know we are all there with you. It hurts and it isn't fair, but we can help each other figure this out! Our son weighs 60 pounds and when he is having an increase in symptoms we increase him to 1,000 mg of keflex a day (500 mg twice a day) for 30 days. The 1,000 mg dosage helps. Not sure how that compares to the dosage you have been giving when symptoms are the worst. Good luck - keep searching - you will find something that helps!

With our younger son suddenly showing PANDAS symptoms over the last week (our 11 year old has been dealing with PANDAS for about 6 years), my husband and I are getting tested today with throat culture, nose culture, AOS and Anti DNAse B. The younger son was tested yesterday, so hoping for some results soon. Thank you for sharing your results as it reconfirmed that we needed to be tested, too, and we are not crazy to do the blood work. Never know what we night find!

dcmom - Thank you for your reply and I am sorry to hear you are in the same boat. I know the "punched in the stomach" feeling - have been feeling it all weekend. Our pedicatrician has 3 or 4 other PANDAS patients and is willing to work with us, so we are very lucky there. We are hoping to get the younger one on a high dose of antibiotics tomorrow after a visit to the doc. Our doc didn't want to do steroid bursts with our older son, but we are able to get him pretty stable after symptom increases with just antibiotics. I know we are very lucky there. I don't think she will want to do steroids with the younger one, but maybe the high dose antibiotics will work. Good luck to you - reading this site, I know we will all get through this, but I just need to be reminded sometimes. I look forward to the day when we have more answers on what triggers this, but it seems to be an unlucky combination of factors.

Did they do a throat culture or just bloodwork? They did a throat culture and the blood work. The rapid and the 72 hour strep tests were negative. This is the first time we have seen an increase in symptoms without positive strep tests, but I am VERY grateful the increase in keflex brought symptoms under control in about 2 days. Definitely do a throat culture. Many kids get strep with no symptoms other than behavioral issues (or tics or urinary frequency). In other words, these kids have no sore throat, no fever. Do the 72 hour cutlure if the rapid is negative. I would also culture other family members (esp. siblings, but grown-ups can get strep too). You could consider strep titers if the cultures are negative. The problem is that some kids with strep don't get titer elevations and some kids get elevations but you won't see it if you draw blood too soon or too late after the infection. What symptoms does your younger son have? Our younger son is showing the same tics that our older son showed when he first started with PANDAS symptoms. We have not seen any ODC so far and are hoping to get it under control before we see any. We will do the throat culture and I think we will also ask for the strep titers. I am wondering if our younger could be a carrier.

I've been reading posts on this site for over a year and am thankful to everyone for the info and helping us to feel that we are not alone in all of this. A few days ago, it felt like the wind was knocked out of us and I am trying to understand. We've been dealing with PANDAS in our older son(11 yrs old now) for about 6 years. Two weeks ago, we saw an increase in PANDAS symptoms and headed to the doc. Blood work showed no recent step or other infections, but increasing keflex dosage improved his symptoms in about 2 days. There must have been some sort of infection, but have no idea what is was as he was not sick. About a week ago, our younger son (8 yrs old) started showing PANDAS signs for the first time ever. Our hearts sank and sorry to say we could not admit this was happening. Today, we admit it and will be headed to the doctor tomorrow. Problem is, he has not been sick and I can't imagine what blood work will show. I feel crazy, but he is starting just like our older son started 6 years ago. I find it odd that older son had increase in symptoms 2 weeks ago without being sick and now younger son is showing symptoms for first time and did not have any sick symptoms. What is going on? I see that many people on this site have multiple children with PANDAS and I am trying to understand. What is the theory on this? Is there some genetic cause, are there particular strains that cause this, or is it some combination of variables? How can something that seems rare happen to more than one child in a family? Any help would be appreciated. Thanks!

When episodes were the worst, we found that certain foods would trigger panic or anxiety in our son. Seems dairy and gluten were big triggers for him. We had to check ingredients carefully!

Can they tell if there is strep in the adnoids after they take them out? Not sure if they can, but I think our pediatrician is very curious about the possibility of strep being in the cyst. I will talk to her about testing and I am sure she will do whatever she can to find out. I am anxious to move forward with this, but I am being told we have to resolve another issue we are working on - our son was diagnosed with Horner's Syndrome (unequal pupils and a drooping eyelid). The cuase is some interruption in the nerves going from the brain to his eye. They are trying to figure out what is causing that. My gut tells me it is all related to PANDAS, but there is no medical tie to Horner's and PANDAS so I am trying to be patient.

My son gets the dark circles when PANDAS symptoms are elevated. I know what ernestfamily7 means when you say you can just look at their eyes and know they are a mess. Funny you made this post now as we just found a 1 centimeter cyst on our son's adenoids two days ago when he was in for an MRI for an unrelated issue. Our pediatrician suggested that maybe strep could be "hiding" in the cyst. Of course, I am anxious to have the adenoids removed and have the cyst looked at. Unfortunately, we have another medical issue to get closure on before we can address the adnoids, but I am hoping we can address the adenoids SOON!