Debbie1

Dear EA Mom and Buster, So sorry to hear your daughter is having a hard time right now. She is in our thoughts. Best wishes for a speedy and complete recovery... Debbie

He does complain of stomach ache as well. Although, for my son, the headaches are the more recurrent complaint. He does not want tylenol - he says it doesn't help.

So interesting that you mention this. Last I spoke to my neuro, I asked many questions. One was - why haven't his cultures been positive recently if he has had tic and OCD symptoms and his titers are so high? His answer was that strep could be hiding out elsewhere, perhaps in his adnoids rather than his tonsils. I know there are other reasons why his culture can be negative as well, but it was an interesting response.

So interesting that you mention this. Last I spoke to my neuro, I asked many questions. One was - why haven't his cultures been positive recently if he has had tic and OCD symptoms and his titers are so high? His answer was that strep could be hiding out elsewhere, perhaps in his adnoids rather than his tonsils. I know there are other reasons why his culture can be negative as well, but it was an interesting response.

My son very frequently complains of headaches. I was wondering if other PANDAS kids experience this. Is it OCD or does he really feel pain? Does anyone have any suggestions on how to alleviate it without offering Tylenol every day? Thanks.

Are there doctors at Yale that can help with PANDAS? I am headed to Columbia U. (Morgan Stanley Children's Hospital - NYC) at the end of the month. I hear the neurological team there diagnoses PANDAS frequently and they can offer all of the treatment options including IVIG and plasmapheresis. Has anyone else on the board gone to Columbia for diagnosis/treatment?

Thanks everyone for the input. We had six great days after the amox. but I fear we are now on a downward trend. Tics are a little more frequent now as well as certain OCD behaviors. Could be normal wax and wane, but it looks like the improvement was more likely related to the amox. During those six days, we saw a child we hadn't seen in a long time. Very pleasant, agreeable, happy and enjoyable to be around. I am holding out at least a few more days before I call the doctor to see how he does. I hope I am able to hold out three weeks until I see a new doctor who I was told is quite knowledgable about PANDAS and treatment options. We are hoping to get a clear diagnosis and a treatment plan. My existing doctor will most likely try a longer round of amox. as his next step.

Thank you everyone for your replies. Just to answer a few questions that came up - 1) The December 2007 throat culture was a rapid and the cultured overnight only. 2) He had two cultures in July 2008, both were negative. He was not cultured in August 2008 when he had abrupt onset on tics, OCD and bladder symptoms after his sister tested positive for strep. Probably sounds ignorant of me, but I first heard of PANDAS a few months ago when reading a book (possibly Sheila R.'s). No doctor ever mentioned it to us nor did they ask us whether he had a recent strep infection when we discussed his symptoms. So when we first heard of it, we never considered it a possibility. Thanks to the people here, I suggested the possibility to my doctor in the beginning of September 2008. He agreed it was worth looking into, given my daughter's recent strep and the immediate onset of my son's symptoms. I requested a 72 hour culture at that point (he usually does overnight only) and the culture was negative. We went for blood work and that was when we got the high titer results, suggesting this is a possible PANDAS case. Dedee - the spreadsheet suggestion is a great one. We have been working on putting it together. What we find the most time consuming is piecing together all of the historical information, but we believe it is well worth the effort. On a separate note, I have found your posts extremely encouraging. I too have been through a few years of possible incorrect diagnosis. It is so encouraging to me that you pursued, found the right doctor and above all, that you son is doing well now. It really gives us hope. Thank you.

Buster, The pediatrician did a rapid test and then cultured it overnight only. We got a call the next morning when it was positive. My son was five at the time. Antibiotics used were 1) amoxicillin 2) Cefzil 3) Augmentin 4) Duricef 5) Augmentin (for ear infection) then Duricef for strep three weeks later 6) Cefzil. During the first episode, some improvement in bladder was noted one week after starting antibiotics. 2nd cycle - next day. Although symptoms improved, they were not better. 3rd cycle was the Augmentin then the Duricef (May 2007). Two weeks later, the records show that there was bladder improvement. At that point, We had a MUCH BETTER period for several months through the summer and into the next school year. In late December 2007, records show sore throat and negative throat culture again. By early January, I had called to report significant increase in OCD and tics. This began another very difficult time. I went back to the neuro who adjusted medication and was considering some behavioral therapy. He was having side effects from the meds and I started looking for alternatives. That is when I found this website. We drastically altered his diet and within three weeks saw dramatic improvement. Just noticed last night though, that he was diagnosed with a sinus infection at the end of January 2008. Was put on amoxicillan. So now we are wondering whether it was really the diet changes or the amoxicillin that made him better (or maybe both). February through July 2008 was great for him. He seemed so much better. Then in August, dramatic sudden onset. Tics, OCD and frequent urination were back. Looking back, he had two negative throat cultures in July. Two to three days before onset, his sister was positive for strep. Symptoms continued all month through the beginning of this school year. Medication was adjusted with some but not total improvement. Then we suggested PANDAS to the doctor and had the titers done. Very high. Amox was started and 10 days later, he was much better. He is not running to the bathroom, his tics are gone and he falls asleep more easily at night. I have to go back and check the dental records. He probably had one check up and cleaning during the strep episodes. What is the connection?

Hi all. I hope that one day I am able to offer guidance to others here rather than constantly asking questions. Unfortunately, I am not there yet and I need your help. As posted previously, my 7 year old son was put on 10 days of amoxicillin following a negative throat culture but extremely elevated titers, tics and OCD. For the first several days on the amox, he seemed worse. After that, stable. By the end of the 10 days, he was noticably improved. We have now had about five consecutive good days. Yesterday I picked up a copy of my son's file from his pediatrician. The 2006-2007 school year was terrible for my son. He developed tics, OCD and frequent bathroom use. When I say frequent, I mean every 5 minutes. At times, he would walk out of the bathroom and turn around and walk right back in. Urine cultures were negative and he was treated with ditropan. He was eventually sent to a urologist who put him on detrol. His OCD and tics got bad enough that the neurologist put him first on Klonopin and then on Zoloft. After starting Zoloft, the bladder issues subsided and we stopped the Detrol. It seems in hindsight that he kept being treated for individual symptoms, but no one ever saw the whole picture. He had strep six times that year. I found the same pattern in his records three times: 1) Sore throat, culture was negative 2) Frequent urination begins including waking at night 3) Positive throat culture, treated with antibiotics 4) Some improvement in bladder (I still have to go back and think about how his tics were during these cycles) What is confusing to me is the timing of the symptoms. One time this pattern took 1 month from the time of the negative culture to the positive culture. The next time it was two weeks. The third time he had the negative throat culture, then the frequent urination. 1 month after the culture he was put on antibiotics for an ear infection. Three weeks after that, he was positive for strep. Bladder improvement was noted in the file after the strep was positive and treated. So is this a PANDAS pattern??? At the time, no one made a connection. Everytime we noticed bladder improvement, we attributed it to the ditropan, detrol or Zoloft. We (and the doctors) never made the strep connection. Could it have been the antibiotics that were causing the improvement? I have an appointment with a specialist at the end of October. I am trying to get this all sorted out in my mind before then. Sorry to ramble. Four weeks ago my son's vocal tics were so bad that he said to me "Can't you find a doctor that can make this go away?" I cried. Today he said "Guess what? I don't feel like I need to make those sounds anymore!" I cried again. This is one emotional rollercoaster. On to the 2007-2008 records.

It has now been two weeks since we got blood work results back showing VERY high ASO and AntiDNAse B titers. The pediatrician and neuro put him on 10 days of amoxicillin which he finished this past Monday. During the first several days on the antibiotics, his symptoms appeared slightly worse. It was not until he was at the end of the antibiotics that he seemed better. He has now had several days were his tics seem much better (although some of the OCD behaviors seem to linger). He is still on other meds and am not sure how much they are masking his symptoms. My question is - why would he seem to be worse for several days on the antibiotic?

Thanks Kelly. I just read through some PANDAS info on Dr. K.'s website, but have not yet contacted him. As of late Friday, my ped. spoke to the neuro and then called me. The neuro was "impressed" with his antibody levels. They called this a "possible PANDAS case" and decided to put my son on a round of amoxicillin. My neuro has a protocol to treat PANDAS and this is step one. I was told that if this doesn't work, step two is antibiotic treatment over an extended period. Not sure what steps are taken after that, but at some point down the line, IVIG is considered as an option. Does this sound reasonable? Can anyone help me understand a few things: I still do not understand why dietary changes appear to have helped him if this is PANDAS related?? He started the antibiotics yesterday evening. How long would it take to see a change in tics/behavior if the antibiotics are working? What is the likelihood that my daughter's tics are caused by the same thing? I am really confused as to why neither my ped or neuro brought PANDAS up as a possibility previously and why they have not recommended testing for it if only to rule it out. Thanks, Debbie

My doctor called today with results from the blood work my son had done. His antiDNAse (not sure how to spell correctly) was, as my doctor put it, "sky high". ASLO was elevated too. Here are the numbers: AntiDNAse was 2700 (normal is under 200) ASLO was 600 (normal is under 200) My pediatrician said he has never seen AntiDNAse so high. He put a call in to the neurologist and requested a call back today. Either he or my neurologist are supposed to call me back to discuss further. His recent throat cultures have all been negative, but another one of my children had strep last week. Where do we go from here??? If it is PANDAS why would dietary changes have helped at all? Debbie

Pat, My daughter's cough sounded like a dry, quick cough. During the weeks between seeing our pediatrician and waiting for our appointment with the neuro, other tics appeared and very quickly got dramatically worse. By the time she saw the neuro, she was really in need of a quick intervention. At the time, I did not know about this site (it was about four years ago) and natural ways to treat tics. She was put on medication and went through a few different ones before klonopin, which worked for her. Over the next few years, we noticed increased difficulty in focusing at school but never associated it with the med until May of this year. By then we had made dietary changes (removing all artificial colors, flavors and preservatives) and were able to reduce her medication. She came off the medication entirely this summer. Right now she is doing great and we hope and pray that her success off of medication will continue. If it were the cough alone at the time, I do not think we would have done anything. Hope this helps. Let me know if I can give you any other info. Debbie

Patty, What is your pediatrician recommending to treat the cough? A few years back my daughter had a tic cough that went misdiagnosed as asthma for a long time. The pulmonologist she was seeing kept increasing her asthma medication. At one point, she was sick and I took her in to my pediatrician. My wise pediatrician was not comfortable with the amount and type of medication that was prescribed. He had a suspician that it was a tic cough and told me that if it is asthma and you give asthma medication then the cough should go away. He sent me for a second opinion who agreed with my pediatrician. We then went to a neurologist. So I would guess that if it is allergies and you try allergy medication, then the cough should go away. If it doesn't, consider whether it may be a tic. Debbie

Hi everyone, Thank you so much for all of the responses preparing me for my son's appointment. My doctor agreed to running a 72 hour throat culture and told me (as several of you did) that even if it is negative, it doesn't rule out PANDAS. He asked how I would feel about going for bloodwork to test for elevated antibodies regardless of the strep results. My response was - I want to do anything I can to either rule this out or make a correct diagnosis so I'm there!! He gave me the paperwork to take to LabCorp (we have not yet gone). He then told me he has 4 or 5 PANDAS patients and sometimes you need two or more titers levels to see is there is any change. Even if they are normal, it is not always a clear call. I was impressed that his knowledge seemed to match what I was told here. We've passed the 24 hour mark and no call yet from the doctor's office so as of now, the culture is still negative. I'll keep you posted with any change. The neurologist is squeezing us in on Tuesday and by then we will have the 72 hour results. In the meantime, I just wanted to say thanks for all of the guidance and support. Debbie

Patty, I remember my son was doing so well that we decided to reintroduce a little bit of gluten to see what would happen. Within a few hours, he had a head bopping tic that we hadn't seen in ages. We did not give him gluten again. Not that long after (or before - I can't exactly remember), he ate a plum and seemed within minutes to have very frequent hand clapping. No more plums for him. Around the same time, my daughter came home from a month away at sleep away camp. She came down with strep one day later, but my son was never symptomatic. It has been down hill since then. Although we took away the seemingly "trigger foods", we haven't gotten him back to where he was. Seems only like a downward spiral since. I spoke to my pediatrician this morning and asked about a throat culture. To my surprise, he actually knows what PANDAS is and said there is sometimes a correlation between strep and tics although not usually in what seem to be chronic cases. He agreed to do a throat culture later today. If it is negative, he said he would do the overnight. I asked about a 48 hour test and he said - not necessary. If strep is growing, he will see it with the 24 hr. What else should I ask him? Am I supposed to ask him about blood work for elevated antibodies? I have read a little about that here, but never thought it applied to our case, so I am not on top of the info. If anyone can give me guidance, it would be much appreciated. Our appointment is at 2:30 Eastern time. Thank you everyone.

Patty, I remember my son was doing so well that we decided to reintroduce a little bit of gluten to see what would happen. Within a few hours, he had a head bopping tic that we hadn't seen in ages. We did not give him gluten again. Not that long after (or before - I can't exactly remember), he ate a plum and seemed within minutes to have very frequent hand clapping. No more plums for him. Around the same time, my daughter came home from a month away at sleep away camp. She came down with strep one day later, but my son was never symptomatic. It has been down hill since then. Although we took away the seemingly "trigger foods", we haven't gotten him back to where he was. Seems only like a downward spiral since. I spoke to my pediatrician this morning and asked about a throat culture. To my surprise, he actually knows what PANDAS is and said there is sometimes a correlation between strep and tics although not usually in what seem to be chronic cases. He agreed to do a throat culture later today. If it is negative, he said he would do the overnight. I asked about a 48 hour test and he said - not necessary. If strep is growing, he will see it with the 24 hr. What else should I ask him? Am I supposed to ask him about blood work for elevated antibodies? I have read a little about that here, but never thought it applied to our case, so I am not on top of the info. If anyone can give me guidance, it would be much appreciated. Our appointment is at 2:30 Eastern time. Thank you everyone.

Michele - I am not sure what you mean by "emotional liability" although I do not think of him as an overly emotional kid. I am not sure at what age they will give the shot going forward. My daughter's friends all got it very recently because it was a new requirement for this school year. My younger children have not been given it yet. I just got off the phone with a doctor nearby. He is a pediatrician with a strong interest in ADD/ADHD and sees kids with several neurological disorders including tics. Someone suggested we make an appointment for a consultation with him as he seems to have had some success with another child with tics. He is willing to see us, although there is a bit of a wait (isn't there always!) He recommended a book in the meantime - "Kids in the Mix"by Martin Kutscher. Have you read it?

P.Mom, Thanks for your reply. I hope it is so easy for me!!! I have been warned though that NJ is tough. I spoke to my pediatrician yesterday right after the school called me. He told me he thought I would need a religious exemption to get out of it since this is not one of the vaccines on the radar for causing neurological problems. I have not yet told the school that I would like an exemption. I would bet that no one in this school has ever requested an exemption before leaving me in unchartered territory. I never did look into the strep/virus connection to his tics. He never seemed to get worse when he was sick so I assumed it wasn't the issue. We have had many cases of strep over the years here. Do you think it is worth looking into? If so, where do I begin? Debbie

Thanks CP. I really appreciate the support. Does anyone know how to get exempt from a state mandated vaccine in NJ?

My daughter's school informed me yesterday that she is missing the menningococal vaccine (a new requirement for kids going into 6th grade). She has been doing great lately and is no longer on medication for her tics (which was making her spacey at school last year). I am so afraid to give her something that might make her worse. Has anyone had a negative experience with this vaccine? On another note, my 7 year old son, who tics had improved so dramatically had a terrible outburst in August. We still have not been able to get him under control. He has a frequent vocal tic that sounds like a chirp, he claps his hands often and looks up at the light is the room all of the time. Oh - and he has started going to the bathroom frequently again. Socially, things have become very difficult for him and he endured some teasing over the last few weeks. Yesterday was the first day of school. I had to warn his teachers before hand. Luckily they both said they once had another child in their class with tics. The teacher called yesterday after school to say his bathroom visits were so frequent she wanted to check in to see if he was ok. She said the tics were very frequent as well. I have not changed his diet - we still eliminate artificial ingredients, preservatives and are mostly gluten free, although the doctor I brought him to said he could have oats, which we never removed from his diet. He is still on medication for his tics (although clearly not helping so much). I have wondered over the last several weeks whether all my efforts have been worthless since he seems to be having such a hard time and I feel like I'm back at square 1. I am definately in need of some inspiration - if anyone has some for me! - and a good cry.

What tests check for metal toxicity?

Patty, Thank you for the reply. I never even considered that it may be an environmental allergy, although I will definitely look into the possibility. Is your son still in camp? If so, how have you kept his tics under control with his environmental allergies? We do know that he is highly sensitive to artificial ingredients in foods which is why the chlorine and sunscreen were our first thoughts. Although he needs to have the suncreen, we told him he may not go in the pool next week. How many times a day can you give epsom salt baths without any adverse effects? Thanks, Debbie

In an effort to calm down my son's tics, I gave him Epsom Salth baths two days in a row after camp. (We only did this once or twice in this past and did not see any improvement). For the entire time he was in the bath, the tics (primarily vocal) calmed down dramatically. As soon as he came out of the bath, he was ticcing again - I think just as bad as before he took the bath. Can anyone explain to me why this would happen?