Kayanne

I still check this forum several times a day, but I echo what other posters have said. I don't post as much because 1) most of the time, the information is already posted and 2) we are in a great spot, and I don't have any experience with IVIG or Lyme -- just steroids and some antibiotics. So, I try to share what our experiences have been. However, I'm sure for some of the regulars, it's a broken record. I also want to add my thanks to EAMom, Buster and Diana. Their time on (and off) this forum have been invaluable. We are currently just past the 1 year mark of our PANDAS daughter starting steroids a 2nd time. This time last year were were relieved to be seeing her improvement on only 2 weeks of prednisone. Since then, she has had her tonsils removed, and we dropped to a prophylaxis dose (150mg omnicef daily) of antibioitcs. We saw some minor, minor upticks in her OCD here and there...but we can usually associate it with strep exposure. She does still once in a while say that she feels like she needs to use the bathroom too much or right away after just going. She has had a very successful 1st grade experience, and she is at the end of the same results for 2nd grade. She also had a stomach virus in the winter, and after that her minor OCD was better...*shrugs shoulders* We've also seen no side effects of the flu shot she received in October. I still continue to pray for all of our children. This disorder breaks my heart because I feel that there is a good number of children who would be in my daughter's situation, if only their pediatrician heard of it, believed in it, and every neurologist would treat it.

I'm wondering if regular EEG's won't show anything, but that EEG with the new software from that Harvard Dr. would? http://www.latitudes.org/forums/index.php?showtopic=12796&st=0&p=106371&fromsearch=1entry106371

My daughter was approx 42 lbs and 6 yrs old when one of the peds at the practice we go to put her on 10 days of clindamycin -- 300mg 3x/day. 900mg daily is the high end of an adult dose. I just wanted to put this out there in case someone is considering clindamycin...it can be given at higher doses. At the time, it was definitely warranted. She had 3 rounds of antibiotics prior, and had just finished up a course of augmentin combined with rifampin. She had a very light positive on the rapid strep test, and was already into her PANDAS exacerbation -- we were just waiting to see the "specialist" at CHOP. The ped even left the room to consult with the other doctors about giving that dose.

Was he treated for 5 days initially with Omnicef? Just curious because Omnicef is approved for 5 days for some infections, but I have seen websites recommend for strep that it should be prescribed for 10 days. In 2009 when my DD had her first PANDAS episode, originally she was put on only 5 days of Omnicef. She was back in the office for a sore throat very shortly after finishing that course. She then had subsequent treatments of 10 days of amox, 10 days of augmentin combined with rifampin on days 7-10, and finally 10 days of clindamycin. It is my belief that the original treatment she was given was insufficient to treat strep, and then the second course of treatment (amox) was not effective enough either...that set her PANDAS in motion. In 2010 when strep hit my house again, she was on 250mg of pen vk twice a day as a prophylaxis. My other 3 children tested positive and were given Ceftin and Duricef. She kept testing negative on the rapids, but her PANDAS symptoms were escalating. Despite the negative rapids, one of the peds in our practice prescribed a little larger than treatment dose of 10 days of Omnicef (45lbs -- 150mg 2x/day). We saw a lot of improvement. The ped said for strep, she thinks breaking the omnicef up into 2 doses a day is better even though omnicef if a 24hr antibiotic. Sadly, most of the time, we parents are taking the lead on what we believe is the best treatment for PANDAS. I think your instincts are correct here. Why should your son suffer because a particular doctor is too rigid? Do you mind sharing whereabouts you are from? Do you have access to this study? My daughter takes 150mg of Omnicef daily as a prophylaxis. We live in PA, and my pediatrician has told me repeatably that the Cephalosporin class of antibiotics are all good against strep (Keflex and Omnicef are in this class) I'm really curious to know if this study is basing the treatment failure of Omnicef on a 5 day course or a 10 day course.

Was your son on long-term antibiotics prior to the surgery? If so, which one? Thanks!

Like this forum? LOL!! I'm guilty!

Sheila, thank you for letting us know! Trudy, thank you for helping to spread the word!!!

I once found an article on pub med about this, and it only mentioned erythromycin as being resistant, but said because of that, all macrolides should be considered to have some strains of strep resistant to them. I can't seem to find it now. This is all I know about it -- sorry.

Jill, Here is an article about it in Pittsburgh. I live only 4 hours East of Pittsburgh, so once a rheumatologist at Hershey told me about macrolide resistance, I have avoided azith. My daughter had a PANDAS exacerbation while taking Pen vk, so I don't trust that either. She now takes 150mg of Omnicef. My pediatrician believes the cephalosporin class of antibiotics is better for strep than penicillins and macrolides. However, he is not the prescribing doctor. Our PANDAS neurologist is. http://query.nytimes.com/gst/fullpage.html?res=9E00E2DA173FF93BA25757C0A9649C8B63 Although, I should add that my strep was finally kicked (after trying amoxicillin twice) by 2 z-packs. So, I don't think originally it was a macrolide resistant strain that hit our house in 2009.

Thank you so much for sharing this! I think it is very important to share this. I'm going to on my facebook page.

Jag, I couldn't agree more about this being bigger that we really think! I also think a lot of the "mild" anxiety issues and other subclinical things that people suffer from are going to be related to infection/inflammation too! However, I believe that "mental illness" is going to probably end up being multi-pronged approach. There is validity in the idea that the brain's neurotransmitters are low or out of balance. Otherwise, I don't think we would see a large percentage of "normal" mental illness responding to psych drugs. I personally think eventually mental illness is going to fall under something like these categories: 1. The majority of people are going to have chemical imbalances in the brain, but medicine will know enough to find the cause -- poor lifestyle, malabsorption/quick absorption of proper nutrients, hormonal imbalances, -- you get the picture. 2. A smaller group is going to be recognized as having an infectious trigger or immune mediated trigger--autoimmunity and inflammation. Not just from infection triggers, but also allergies, and things like cysts (don't forget about the girl who got schizophrenia from a teratoma cyst on her ovary) 3. Physical trauma to the brain 4. There is still probably a lot of unknown information yet--what about direct infection in the brain?, or an over abundance of midi-chlorians?--LOL! 5. I think, finally, the "traumatic event/bad parenting" angle of mental health is going to be thought of like strep is now. -- "Everyone, has a traumatic things happen to them, how can we prove that this caused their problems?" I think medicine will be asking, what does this person have in categories 1-4 that have made it much more difficult for them to recover from the traumatic event? These are my hopes. That Sigmund Freud's ideas, will take up as much space in a psych text book that PANDAS/PITAND does now. Of course I am being facetious--but I'm sure you all know where I am coming from.

I'm 100% sure my daughter has PANDAS. I also believe that there are many families who have experienced healing. We just don't hear from them a whole lot on these boards.

I pulled a deer tick off my husband on Saturday. I was wondering if anyone has any experience with any of the labs listed here: http://www.tickencounter.org/education/tick_testing Or if you could recommend a lab. I went to the Igenex site, and I didn't see anything for tick testing. Thank you.

Which vaccine did your son already have? Pneumovax23 or Prevnar7? I'm just curious. Thanks.

I know this sounds really obvious, but does she take a good multi-vitamin and mineral supplement? Also, what about b vitamins? I read in a book that some antibioitcs can deplete b vitamins...they are so essential to keeping things on track, and in converting amino acids to neurotransmitters--particularrly B6 in the form of P-5-P. Most vitimins only have it in the form of Pyridoxine HCI. http://ods.od.nih.gov/factsheets/vitaminb6/ My husband gets panic attacks, and he has said that he read that read somewhere that too many Omega 3's can cause a manic feeling... I'm also going to pm you. I tried to pm you, it wouldn't go through.

My Daughter (8yrs) has Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? CamKII was 112, Anti-neurals were all within the normal range. She was tested about 1 1/2 months after she FULLY recovered and was asymptomatic Results of Immune testing was all normal except elevate IgE -- she does have seasonal allergies. She was tested June 2010. With her first exacerbation, strep titers were ASO-800 and AntiDnase-480. Her blood was drawn just before she tested positive a 4th time on the rapid strep test. What symptom group would you put your child in: tics only ocd only...we were never able to really distinguish if her coughing into the crook of her arm was OCD or a tic. However, for the most part it was OCD. tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one - rigid about following rules, but it is so minor that it is not even noticeable except by us and her teacher. 2-5 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dilated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, sensory defensiviness, piano fingers, witholding urine and stool, refusal to eat or talk because of a "feeling in her throat", catatonic stares, sticking her tongue out and to the side of her mouth, excessive guilt (telling on herself) and not able to make simple decisions. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. Since August, she has been taking 150mg of omnicef daily to prevent strep. We have had 3 strep notices from school, and have noticed a slight increase in OCD that calms down after about a week. I think it is working great. She sees a CBT therapist monthly. Supplements: multi vitamin/mineral, fish oil, probiotics, sometimes L-tryptophan. Past treatments: For positive rapid strep tests: 5 days of omnicef, 10 days of amoxicillin, 10 days of augmentin (rifampin added on days 7-10), and 10 days of clindamycin For PANDAS symptoms: Monthly prednisone tapers and 150mg Omnicef 2x/day from Feb/March '09 to August '09 (we tried a week of amoxicillin in March '09, but went right back to the omnicef because she had a mild rash, and was backsliding. For prophylaxis: June-Sept '09: 100mg azith daily -- Sept '09-February '10: 250mg pen vk 2x/daily. She also had her tonsils and adnoids removed in June 2010.

I know this sounds really obvious, but does she take a good multi-vitamin and mineral supplement? Also, what about b vitamins? I read in a book that some antibioitcs can deplete b vitamins...they are so essential to keeping things on track, and in converting amino acids to neurotransmitters--particularrly B6 in the form of P-5-P. Most vitimins only have it in the form of Pyridoxine HCI. http://ods.od.nih.gov/factsheets/vitaminb6/ My husband gets panic attacks, and he has said that he read that read somewhere that too many Omega 3's can cause a manic feeling... I'm also going to pm you.

Yes, we have the whole family tested if one is positive. I see it as getting control of the situation ASAP. We usually do the rapids. My ped's office has a really sensitive test, and the doctors themselves do the swab. We have done cultures. In 2009, after 3 rounds of antibiotics, I insisted that my children get retested after finishing. When the rapids were negative, I asked that they do a 72 hour culture. My PANDAS daughter had tested positive on the rapid for a 4th time, so she was being treated with clindamycin and didn't get a follow-up culture until later. When she did, it was negative. All through the rest of 2009, I insisted on a back-up 72 hour culture even if the rapid was negative. They were always negative. When I was done my 3 rounds of antibiotcs in 2009, I insisted on a culture to confirm that the infection was gone. My husband had several rapids and 2 cultures during that time--all negative. He felt he had a constant sore throat. However, he was weaning off of a psych med, so that may have been a consideration. Last year, he asked his doctor to add in the step titer test to the list of his regular bloodwork. We did this because he has panic attacks, not because my PANDAS daughter had any symptoms. His results were normal. If my daughter wasn't improving with her treatment, then I would have pursued getting the whole family's titers checked.

Is Doctor T collecting data in general, or are these only the records of his patients?

The first time that my DD did a pred taper, she had a rough first and second week. I definitely saw more raging and crying. Her improvement was also not continual. We saw a "sawtooth" pattern -- but if we evaluated from week to week, then we could see that she was getting better. For the second pred taper, she was not nearly as severe as the year before. Again, week one was difficult -- a lot of crying, banging walls, and just angry frustration. By the end of week 2 she was fully back with no setbacks. However, we still finished the pred until the end.

Don't beat yourself up, you're a great mom who is just trying your best. I think I read on the TS board, that it is common for symptoms to be better while having a fever or something...or I may be confusing that with autism. I guess it wouldn't hurt for you to ask on the TS board. Good Luck

I just wanted to let you know that there are some strains of strep that are resistant to macrolides (zithro falls into this class) Did your daughter's symptoms increase last month?

I just want to point out that many parents have observed a "saw-tooth" healing with PANDAS. Improvements, then setbacks, over and over--with the net result being improvement. Of course, I'm not a doctor, so I don't know if this is what is going on, but I thought I should at least mention that it has been observed.

These symptoms can definitely be found in PANDAS kids. But I am hesitant to say that commonly they are the first symptoms only because there are different presentations of this disorder. I believe that ODD can be an indicator of PANDAS. You might be interested in this video clip in which Dr. Schulman describes her take on "Mild, Moderate and Severe" PANDAS: http://www.thedoctorsvideos.com/video/14802/PANDAS--Possible-Treatments The whole collection of these clips can be found here: http://www.drmdk.com/html/pandas.html

I think that boils it down right there. While we all hope that our children will recover and "outgrow" this someday, as we have reason to believe - I think the question of whether or not to use IVIG and PEX, and when, ultimately comes down to quality of life. If the child is non-functional, of course it may be a no-brainer - but for other cases, there's no easy answer. My son is one of the worst cases our pediatrician has seen (he's treated several cases, but is by no means an expert) and the youngest case Dr. Murphy has seen confirmed. The question of IVIG/PEX comes down to his quality of life. Is it ###### on us - sure, but even at his worst, we had to weigh the risks/benefits. Off abx for almost 2 months now, we've backslid a bit, but he's still functioning - even managed to go to a birthday party yesterday afternoon without issue (of course there was a slight meltdown on the way home - but what 3 year old DOESN'T do that after leaving a birthday party ) Right now - he seems to be happy, and he's not missing out on any thing that "normal" kids do. Is OUR quality of life impaired? Absolutely! We deal with the majority of his OCD - which revolves almost entirely around food, so there's at least one meltdown a day, usually at dinner time. But is that enough for us to consider what we call "the big guns"? Just so we can have a pleasant dinner? It's a very personal choice that's unique to each family and the quality of life they are looking for for themselves and their kids. There's no right or wrong answer. That being said - about 2 weeks after we got dx and we learned more about PANDAS and the treatment options, my husband started a savings account for IVIG/PEX if and when we may need it. We're hoping we'll be able to use the fund for a romatic getaway in a few years instead! airial95, I agree 100% Do you have any idea, generally, if your pediatrician and Dr. Murphy think that antibiotic prophylaxis is not necessary with PANDAS? ----------------------------------------- nomoz, If I was 100% sure IVIG was a cure, then regardless of my daughter's symptoms, I would do it. However, I believe like most of the posters in this thread, it is an intervention to help the children who can't get back to a baseline. For my family, based on that belief, it isn't worth us pursing right now. I define a cure as being, a child who contracts strep (or other sickness), responds to a regular 10 day course of antibiotics, and has no increase in PANDAS symptoms at all. Also, I define it as not needing an antibiotic prophylaxis. I will continue to use prednisone and antibiotics as long as they are effective. But many days and nights, I questioned if I was denying my daughter the best chance at recovery by putting IVIG on the shelf. I believe that it all comes down to how severe your child is, and not everyone needs to rush into IVIG or PEX -- it's a determination only your family and doctors can make.