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I would say yes because both of our sons first showed PANDAS symptoms after EBV. I agree - anything that provokes an immune response will cause an increase in symptoms.

Yes, our son experienced night sweats. We would check on him during the night when he was sleeping and his hair would be soaking wet. He would also complain of leg pain, but he was not getting any taller so I know the pain was not from growing. The night sweats and leg pain are gone now - I hope this will pass for your child, too.

Yes, our son has tested in the 99th percentile. He is now in 6th grade and learns everything in class - he gets mad when I suggest that he needs to study for a test. If a teacher says it, he remembers it. We did have something very strange happen just over a month ago during the worst flair up we have had in tics over the last 7 years. The flair up was awful and sudden - constant head and neck jerks that were very severe and he had nervous energy like he had consumed tons of caffeine. We kept him home from school because the tics were violent head movements and he could not sit in one place. While he was home, he worked on the math assignment he was missing at school. It was like sitting with rainman. He was doing extended division problems - he would read the problem and then write the answer without even thinking, pausing or doing any work. I was 3 or 4 problems behind him trying to check his work. I figured they were wrong since he did not even appear to be thinking, but they were all right. It was like he could see the answer in his head as soon as his eyes read the problem. He has always been good at math, but I have never seen him work like that. This behavior lasted for just a day. We made a change in antibiotics and moved to a very high dose - the tics were almost gone the next day - we have never had a flair up calm down so quickly. Anyway, it sounds crazy, but I have to say it was like the mathematical part of his brain was working differently during this flair up.

I voted based on our oldest son - diagnosed about 7 years after symptoms started. With our younger son, we did antibiotics about 3 days after symptoms started. Symptoms were gone after 1 day on antibiotics, but we kept him on antibiotics for about 1 month. After going off antibiotics, he has been symptom free since about March.

Don't rule PANDAS out just because strep test was neg. Looking back, our oldest son started PANDAS symptoms after mono and got worse after strep throat. Our other son showed PANDAS symptoms when he also tested positive for mono, but that was about 5 years after his brother had mono. So, when it happened to our second son, we had a better idea of what to do. We put him on antibiotics right away and the tics stopped after about 3 days. Now, we are about 9 months from mono in second son and we are symptom free with no antibiotics. For our family, I guess we are on the PITAND side and mono seems to be our trigger. If you have the symptoms and antibiotics bring relief, I would follow the PANDAS/PITAND protocal - just my opinion. Also, seems any event that "turns on" the immune system results in increased symptoms - so don't think strep is the only trigger.

Sorry I can't help with the supplement, but I have another observation to share. We have tried over and over again to find a supplement for our son (almost 12 yrs old, dealing with PANDAS symptoms for 7 years). Everytime we try a supplement to get him calcium, mag, B vitamins, etc, his symptoms seem to increase. Thought it might just be coincidence, but it has happened too many times now. Feel crazy, but I think we are reaching the conclusion that additional vitamins actually increase his symptoms. Wonder if anyone else sees a similar patter ... I know every situation is a bit different.

I'm looking for opinions on dosage levels for amoxicillin. We've been battling PANDAS for 7 years and had the most severe tic episode yet two weeks ago. Came on in a matter of hours - head and neck were moving so violently that neck muscles were sore and could not handle it. Went to ped and switched from keflex to amoxicillin. After 2 doses of amox, tics were all but gone. Amazing! Our ped now has us on 1,000 mg of amox twice a day for the next 3 months. We touch base in 3 months unless we have issues before then. I am wondering what dose any of you have used when using amoxicillin. What is a treatment dose vs a maintenance dose? Our son is almost 12 years old and weighs just 65 pounds. Thanks!

Our son had expanders on top and bottom of his mouth for about a year when he was in 3rd grade and we did not see any increased symptoms related to the orthodontia work. After the expanders came out, we did permanent retainers to hold things until he is ready for braces. We also do not see increased symptoms when he goes to the dentist. Good luck!

Our ped takes the same stance as your neurologist and doesn't rely on the blood work to diagnose. If the antibiotics are working then she feels that is what we need to do. We did see an increase in symptoms at one point when he had some sort of infection in his sinuses. So, we feel PANDAS is not only affected by THROAT strep. Our son also stresses between periods of increased symptoms, but it is not bad. I wonder if it is just that his body is not completely healed and that is lingering symptom for now. I would say feel lucky that you found someone willing to treat based off of symptoms vs just off of blood work.

Our son had symptoms for about 7 years before we started treating for PANDAS with antibiotics (keflex). Don't give up! Not every antibiotic works the same for every child and it takes time. My opinion is that it is never too late to start treatment.

Neither son showed any signs of mono when they had the virus. I have been told and read numerous places that there are usually no physical symptoms of mono when young children have the virus. The only reason we found out about our first son's infection was because our ped seems to test for mono whenever she does the blood test for strep. We were testing for strep (which came out positive) and that is when she said he had mono probably a few months prior -he was about 4 years old. When our second son showed PANDAS symptoms at age 8, our ped tested for strep and mono. Strep was negative, but mono was positive. Again, neither showed any signs of mono when they had the virus.

Did your doctor test for mono? Our oldest son (almost 12) has dealt with PANDAS symptoms for about 7 years. When we look back at his health history just prior to PANDAS symptoms, we see that he had mono and then a few months later he had strep. It is difficult for us to know if mono made him vulnerable to PANDAS or if strep was the only cause for him. Then, this past January, our youngest son (8 at the time) suddenly started having tics. We went to the doc right away and rapid strep was negative. Our doc then did blood tests for strep and mono. Turned out he had mono. So, for our kids, it seems mono plays some part in their PANDAS story. Our ped put him on keflex and the tics stopped in 4 days. (Note that antibiotics eliminated his symptoms that were occurring while infected with a virus). He was on antibiotics for about 2 months and has only had to go back on them for about 2 weeks since then when I noticed some tic activity this summer. Long story short, you may a test for mono. Even if it is resolved, they can tell you if there was a recent infection of if there has ever been an infection. Just a suggestion if you are still looking for possibilities.

We've tried fish oil several different times with our son and I have concluded it always makes symptoms worse. Makes me feel better to hear other parents have experienced the same result as I thought I was crazy to think that something that is supposed to be good for a person is making things worse.

Yes, our son also reacts to red dye. Other than an illness, I would say it is one of his worst triggers. He is aware of it now and stays away from the non-natural red foods.

Only based on our experience with our son and no medical support, I often wonder if some chldren are being diagnosed with Autism because of their PANDAS symptoms. I will say I thought our son was showing signs of Autism when the signs were actually his first PANDAS symptoms.

I don't have any insight on the lab results, but your situation sounds just like our situation. Our 11 year old son had his tonsils out on April 1 (fitting day) becaues an MRI had found a cyst on his adenoid. When they went to do the T&A, the cyst was gone because it had ruptured, but the doctor said his tonsiles were extremely inflammed and in much worse condition than he anticipated. He said they were so enlarged that we needed to consider this a major surgery instead of a minor surgery as he recovered. I found it strange that in his 11 years of life, no one ever said his tonsils looked bad after all the checks in his throat. The surgery was scheduled because of the cyst and not the tonsils - we got luck with the ENT. I can also say our son had Epstein-Barr when he was 4 1/2, which was followed by a strep infection and PANDAS symptoms about 2 weeks later. I often wonder if there is some connection with Epstein-Barr and strep making their immune systems vulnerable to PANDAS.

Our son went through a period when he suddenly started getting one bloody nose a day. They would come on suddenly and they would be gushers. After about a week or 10 days of this, we went to the doctor. She took one look in his nose and said there was some sort of infection - did not know if it was strep related, but there was something. He did not have any symptoms of being sick. Maybe there is some sort of infection in the sinuses.

My son had increased tics after swimming when he was having an episode and I asked about it on this forum last summer. Someone recommended epson salt baths after swimming (about 1 cup salt in the bath). This helped. I think someone also said they bring a spray bottle to the pool and spray their child with an epson salt solution after they swim. We even do the epson salt baths when it just seems like symptoms are increased a bit.

Our son had his tonsils and adenoids out April 1 (fitting day). After the surgery, the surgeon said his tonsils were severely inflamed and much larger than he had expected. He said they were so big, we needed to consider that he was recovering from a major surgery vs just a minor surgery. Prior to the procedure, no exam by anyone had ever resulted in the comment that our son had enlarged and infected tonsils. I am still trying to figure out why no one noticed. Anyway, things have been fantastic since the surgery. I would do it all over again in a heartbeat. Prior to surgery, he was on 1,500 mg of keflex a day. 7 days before the surgery, we switched to a different antibiotic (can't remember the name, but recommended by others on this site prior to T&A). For our son, T&A was a good choice.

Our son had never had a history of bloody noses, but during an increase of symptoms he started having gushing bloody noses every day. Or doc looked in his nose and said there was some sort of infection. She did not do any tests because she could see something was going on. This was before we were on preventative antibiotics. After starting antibiotics, the bloody noses stopped. I would wonder if strep or something could be hanging out in the nasal passages. Of course, dry weather is also a very realistic explanation.

I'm not much of an expert on the titer question, so I will leave that to someone else. We were also diagnosed with transient childhood tics in the beginning, but that was not right. We also had emotional issues and sleep problems. PANDAS symptoms get worse over time and with every infection if left untreated. Recovery time also gets longer. I would suggest trying 30 days of antibiotics and see how tics/attitude react. Don't just do 14 days - that will not be long enough. We do 500 mg of keflex twice a day for 11 year old son that is about 62 pounds. When we tried to reduce him to 250 mg twice a day, symptoms came back. He was not ready. We have also had him up to 500 mg keflex 3 times a day to get symptoms under control following exposure. Your situation certainly sounds like PANDAS should be given serious consideration.

I'm not much of an expert on the titer question, so I will leave that to someone else. We were also diagnosed with transient childhood tics in the beginning, but that was not right. We also had emotional issues and sleep problems. PANDAS symptoms get worse over time and with every infection if left untreated. Recovery time also gets longer. I would suggest trying 30 days of antibiotics and see how tics/attitude react. Don't just do 14 days - that will not be long enough. We do 500 mg of keflex twice a day for 11 year old son that is about 62 pounds. When we tried to reduce him to 250 mg twice a day, symptoms came back. He was not ready. We have also had him up to 500 mg keflex 3 times a day to get symptoms under control following exposure. Your situation certainly sounds like PANDAS should be given serious consideration.

Not trying to distract from the topic of this thread - it breaks my heart to hear the sadness and frustration as I think we can all relate. It is hard to take a break since it something you have to face and deal with everyday, but sometimes we come back fighting even harder after a rest. Here is our experience wtih EBV - EBV was the most recent known virus before both of our sons had sudden onset of PANDAS/PITAND symptoms. Our oldest had sudden onset of symptoms (OCD, severe separation anxiety, sleep problems, frequent urination, memory loss, emotional imbalance, etc) in April 2003 (4 years old) when he had EBV. He then got strep about 4 months later and that is when the tics were added to the other symptoms. For our younger son, he suddenly started having tics in January 2010 with no sick symptoms. (No PANDAS/PITAND symptoms prior to this - he was 8 in Jan) We took him to doc suspecting strep, but he tested positive for EBV. Even though EBV is a virus, we put him on antibiotics and tics stopped in about 4 days. He was on abx for 30 days and then off for about 3 weeks. Tics are back and we now have him on abx again. It would appear that EBV is the trigger for our kids, but both had had strep earlier in their lives. So, did the strep set them up for PANDAS/PITAND when EBV came along or was EBV the trigger? Not sure if we will every know the answer!

I agree - IgG means intolerante while IgE means allergic. An IgG reaction can happen up to a few days after ingesting the substance, so it is very hard to identify through the elimination diet. Our son tested with no issues on an IgE level, but he did test with issues on an IgG level to wheat, dairy and gluten. We saw improvements after going wheat, gluten and dairy free. We were 100% strict on this for about 8 months and then began to allow something like regular pizza once a week. Seems to be going ok so far. Here is something interesting on IgG vs IgE. Our other son tested no issues on dairy for IgE, but he did test sensitive for dairy on IgG. I was not surprised because he would break out in tiny bumps along his jaw line whenever he had milk. Once we removed all dairy in his diet, no more instances of bumps and mild case of eczema on back of his arms is totally gone. The eczema was present as long as he ingested dairy. It has been gone for over a year now and the only change we made was removing dairy. That indicates to me that IgG results are valid in some way. Some doctors do not give any attention to IgG results, but I would say pay attention. I am not sure if your test results show dairy or just cow's milk. If it does not report on dairy and is only listing cow's milk, I would suggest removing all dairy and dairy related products. I would also suggest removing all gluten if only wheat is mentioned. It can be hard to make these changes at first, but once you get in a groove it just becomes a new way of eating. We even went on a trip and managed to stay wheat, dairy and gluten free - just takes some planning ahead!

We have T&A surgery scheduled for April 1st (seems like a fitting day!) and I was wondering why I see so many recommendations to switch to clindamycin 7 to 10 days before surgery. Why don't people stay on their regular antibiotics prior to surgery? When they remove the adenoids, they will also be removing a 1 centimeter cyst that is on one of the adenoids. I got the ENT to agree to do a biopsy and culture following the surgery, so curious about what we might find.