Kayanne

I'm glad to hear the procedure went well...keep us posted. Thank you for all that you do post on this forum...I've learned so much from your info... Here's hoping that this is the end of the stress of PANDAS for your family! ~Karen

Nancy, I have a very difficult time being brief...but here goes... DD6 had several strep infections...first one on March 11. Prior to that she was a healthy child. Sometime around the end of May/beginning of April, we noticed an inablitiy to make decisions, telling on herself, crying a lot...basically anxiety. We were getting frustrated with her. We did not see an overnight onset. The red flags were raised when her Kindergarden teacher approached me on April 21 and said that since she returned from Easter Break (April 14), she has been different. Her descriptions were the same of what we were experiencing at home, and in addition she said that she wasn't talking or playing, and she couldn't seem to do her work without being told it was okay. Prior to this she was thriving in school. On May 1, we met with her pediatrician, and he believed it was anxiety/possible OCD...told us to set her up with counseling. However, he also said that sometimes strep infections are linked to OCD and tics. He ordered blood work including ASO and Anti-Dnase titers. When the titers came back high, his office set us up to see a specialist at Children's Hospital of Philadelphia. We saw that specialist on May 22....complete waste of our time! He said that he couldn't say yes or no to PANDAS because she hasn't yet had a waxing and waning pattern that is linked to strep, and it didn't matter anyway because there really wasn't anything that he could do...IVIG and plasmaphersis were risky and expensive, and antibiotics don't work, and it isn't clear if SSRI's work either because by the time they kick in....symptoms should be waning anyway; However he said that our next step should be to see a pediatric psych. That weekend I found this forum...posted...got awesome advice...took my daughter to Dr. Latimer on June 5th. At that time she seemed worse. Dr. Latimer prescribed prednisone for one month, and about 3 months of azith. She ended up taking the prednisone for six weeks...she is still on the azith. She is probably at 99.5% recovered. We just have a very low level of anxiety... Our case is not really dramatic...in fact I think it is a mild case that could just illustrate the wide spectrum of this disease...the two things that I find scary about our case is if my daughter's doctor hadn't heard of PANDAS, we would be treating this as a case of anxiety/OCD because we have a family history of it. SSRI's for a 6 yr old scare me, but with how bad she was, I would have put her on meds if the doctor's felt it would help. Secondly, she withdrew so much and her verbal skills and writing just plummetted that in the end it felt like autism...everybody kept telling me that she is too old to develop it. But now I keep thinking that if she were 3 or 4 years younger, and having her first strep infection would I have been told that it is Autism? Not really sure about actually putiting my daughter on TV, but I'm willing to help in other ways too....maybe helping put together a press packet if you think we need one. One suggestion that I had made in a regular email to a groug of PANDAS parents is maybe do a group of organized emails. First a more lengthy general email with a case history, and then maybe a few brief emails sent from other parents each day for a few days...all with the same subject line...I think it would be hard for a producer to miss that. Thanks a lot! ~Karen

Dear Michele, I'm so sorry that you are having a rough time right now...Rebecca didn't have the type of rages that you are describing.... I sent an email to Dr. Latimer on Wednesday afternoon, and I haven't heard back yet...however it was lengthy and not very pressing so I figured I could wait.... I know it is late, but I would still try to call her office...maybe an answering service can forward your message....when we wanted to extend Rebecca's prednisone, we called and Andrea spoke to her for us....I really do believe that she is accessible...try calling her office if you haven't yet. I know that Rebecca's fighting me and screaming seemed to be the worst during the second week on the prednisone, and then it sort of tapered off and by the third week, was only fighting me about going to the bathroom... Lots of hugs and prayers I tried to send you a pm, but your box is full ~Karen

I'm glad that you had a good visit...I think what is becoming very apparent is that Dr. Latimer is a thoughtful person who considers every case individually.

I'm not sure what you consider "extended" use of steroids....but yes she is willing to use them for about a month...in our case she extended the use up to six weeks. I also looked up the side effects on the internet...boy was I scared! When I brought up the side effects of prednisone with Dr. Latimer, she said those side effects usually occur if you are going to use them for several months. Steroids are currently handed out for short term use for all kinds of things...asthma, allergies, rashes, etc... As with all medications and treatments, the risk vs. benefits must be weighed. In our case, our daughter has been returned to us, and because this is her first episode, we may not even need to go down the IVIG or Plasma exchange road. My husband and I felt that we would try a longer course of prednisone, and see where that leads us. For our situation, it seemed more prudent to try medication before we pursued the other treatments. I think what it really boils down to is this: Dr. K uses the steroids to diaganose PANDAS, and to see if IVIG will work. He believes after that IVIG should be the next step. Dr. Latimer uses the prednisone as a treatment to bring a PANDAS episode under control because it addresses the brain inflammation, and supresses the immune system. She did tell us that if our daughter didn't return to 99%-100% by the end of her treatment, then we should be considering IVIG or Plasma Exchange. I have not consulted with Dr. K at all...I have read his website, and many posts on this forum about what he suggests...please will someone correct me if I am wrong about his approach.

Pandas Symptoms for our DD6 started mid/end March or beginning of April—it was not a “sudden onset” in our case: Anxiety, obsessive thoughts, inability to make a decision, frequent crying that evolved into belligerence, ADD type of behavior that seemed to evolve into more autistic type of withdrawal at home and school, the quality and quantity of her school work, writing and drawing declined, she refused to do the basic things—I had to force her to eat, sit on the toilet, take a bath…she was no longer an independent 6 yr in her thoughts and actions, She startled easily even with a soft voice, we think she had a coughing tic, she would keep her hands clenched and sometimes pull them up to her chest. We took her to Dr. Latimer on June 5th she prescribed liquid prednisone (5mg/ml) and azithromycin. She also noticed very mild chorea. Started the medication on June 6th: 100mg azith daily—still giving it to her DH went to 3 pharmacies…the third gave us pedia-pred (5mg/5ml)--we just had to adjust the mls: Day 1—20mg; Week 1—20mg 2x/day: Week 2—10mg 2x/day: Week 3 –5mg 2x/day; Week 4—5mg 1x/day We started to see baby steps of improvement within two days. That Monday she actually ran up to a classmate and smiled at him in the morning before school started. Slowly, the autistic type behavior seemed to devolve back into ADD type of behavior. We had a really bad episode of screaming and fighting halfway through week two of the pedia-pred, but after that the belligerence really seemed to decrease back into crying fits. Sometime around week two she started to interact with our family some more, but it was still very difficult for her to actually get her words out. She was also occasionally able to say “no” to a yes or no question. She also started to interact a little with some friends who were over for a play date. By week three she no longer had eating issues…she finished her meals in the same amount of time as her siblings. She was beginning to get more independent…getting dressed and brushing her teeth in a good amount of time. Her focus was returning. As we were nearing the end of week 4, we began to be concerned because Dr. Latimer said she should be 99-100% by the end of the month. We still felt that she had a long way to go…socially she was trying a little bit, but she couldn’t verbalize quickly or loudly enough to be included with her friends at the playground. She still had some difficulty making decisions, and even saying “yes” or “no”, she was still not as independent as before, she still didn’t want to write or draw at all. On Thursday, July 2 we ran out of pedia-pred, and began to use our refill of regular prednisone (5mg/ml) that the pharmacy had ordered for us. We began to see a major improvement…she was talking, singing, asking questions, and smiling—within hours of taking it. We spent the weekend at the Pocono Mountains with my parents, and my mom was just amazed at her improvement. On Monday, her counselors at her tot lot camp were absolutely amazed…they said she had become again the little girl that they knew for the previous two summers. She was waving and yelling goodbye to her friends and their parents that day. When she saw my husband she said, “Daddy, I can talk now!” We were supposed to stop the prednisone on Saturday, July 4th, however, on our own we continued to give it to her…we were able to get a message to Dr. Latimer and by Tuesday we were told to extend the prednisone at her current dose (5mg 1x/day) for two more weeks. By July 18th she was 98%...we stopped the prednisone, and are continuing on the azith—for now…I am hoping to take her off of it soon and give her body a break…maybe start a different antibiotic by the time school starts. She has been off the prednisone for 2 ½ weeks, and we have not seen any slip back…in fact we think that she is now at 99%. In the last week, she seems more interested in the creative things that she used to love…she reads more now, she has written a little bit, and she has been coloring in a hidden pictures book. For some reason going to the bathroom upsets her still, but she hasn’t had any accidents, and eventually she goes to the bathroom independently. She still seems to have a very low level of anxiety about germs and the possibilities that she is “being mean” by thinking some things about people. On June 5th in her office, Dr. Latimer told us that her improvement should last unless she gets sick again…we are still not sure if she reacts to viral issues or not... Just one more thing that I want to add…after we began to see such tremendous results on the regular prednisone, I googled pedia-pred and found out that it is really prednisolone and not prednisone—they are both supposed to be equally effective, but my gut is telling me that in our case, the prednisone was more effective…. If for some reason, your pharmacy doesn’t carry liquid prednisone…wait a couple of days for them to order it….I feel that we would have seen better results sooner if we had. Also, it is really nasty…we had good success mixing it with soda. The pharmacy couldn’t add flavoring to it because it was so concentrated. Sorry for the long post….I can never seem to tell a short story!! ~Karen

I'm interesed in helping....I have corresponded by email with "suzan" and she is also interested.

I kept thinking while my daughter was going through this that we were lucky she was not 3 or 4 years younger....I really believe that would have pushed her into an autism diagnosis....Dr. Latimer did say that she feels some kids are getting puhed into ADD or Autism when it is PANDAS.

She did put my daughter on 100mg daily of azith...I asked her to.

Could you suggest that your Dr. diagnose something else...like "autoimmune encephalitis"...because technically that is what this is...

Michele, When my daughter was on the pred for about a week....I have never seen her act so enraged...she was beginning to get belligerant prior to seeing Dr. Latimer, but I do think the steroid made her rage even more....I remember just trying not to cry because I kept thinking in my head..."she belongs in a hospital..." and I was thinking of the psych ward! The only way I managed through it was to try to shut down my emotions...and just over and over I kept telling myself that "she is sick...that's why she is acting this way..." Also...I was really only dealing with this behavior for maybe three weeks? (she started to calm down the third week of the pred.) Most people can handle that much....I cannot even imagine how difficult it has been for you...your family are in our prayers...lots of hugs! Remember.....it is not wrong for you to try to take a break, and do something on your own...if it is possible. In fact...it would probably be best for your kids if you try to find a way to recharge. I want to say also, that if a situation is going to cause stress...such as going out in public...is it just possible to avoid it for a while. We didn't let our kids go to the first week of the summer playground program because she was just starting the pred, and we didn't want to stress her out too much...social situations were hard for her, and rushing to get out the door was also hard on her...so we just lounged around for a week...

I will find out if my uncle had any issues w/the long term use...I do know that he was also treated with steroids while he was in the heart hospital...saved his life. Right now I am feeling that prednisone is a miracle drug! I'm so glad your son has improved on it!

I posted this almost exactly on another thread--Just thought it would be easier than re-writing: For my dd, Dr. Latimer did perscribe the azith and prednisone together...which makes sense because when you are on the steroid your immune system is suppressed. Other than a few minor issues as a baby, Becca is very healthy so I do believe that played into her decision to prescribe the azith at half the dose...she was somewhat reluctant to do it...but I asked her to. She was going to perscribe amoxicillian, but my dd had a "side effects rash" from that in April (which Dr. Latimer didn't believe--she thinks it may have been strep related)...I asked her for the azith because I was aware that a lot of the parents on the forum had seen good results with it. In our situation, all six of my family were on an antibiotic at one point, four of us were on antibiotics three times, and my PANDAS daughter was on antibiotics 4 times, and she was reluctant to go with the antibiotics in case she might be creating a resistant strain in our house...all understandable. That morning we had called for the results of her 72 hour throat culture that we had her ped. do, and it was negative; Dr. Latimer felt the infection was cleared, but I had expressed concern that I think my son may be a "carrier" since he has also had impetego twice....She gave me enough refills to get me to the beginning of Sept. She didn't say this directly, but the general feel that I got from her is that a longer course is needed to be sure the infection is cleared...I have yet to address the long-term use of antibiotics with her. Diana and I have briefly discussed this...I do believe that I will lobby Dr. Latimer to keep Becca on a prophlactic dose of some type of antibiotic...maybe something not so broad spectrum. My Uncle had RF as a child, and he took penicillian for 20 years. I can also understand why she would be reluctant to prescribe antibiotics to your son if his bowel issues may be a result of long term use of them...It sounds like Dr. Latimer is thoughtfully considering your son's situation because it is complicated. I have a hard time accepting that antibiotics are also a treatment for PANDAS, but if you google azithromycin and anti-inflammatory and/or immune-modulating properties (or something similar) you will get a lot of results...concerning other disorders/diseases.

I think one thing to remember is that PANDAS seems to be unique with each child--how could it not be when the brain is involved? Other than a few minor issues as a baby, Becca is very healthy so I do believe that played into her decision to prescribe the azith at half the dose...she was somewhat reluctant to do it...but I asked her to. She was going to perscribe amoxicillian, but my dd had a "side effects rash" from that in April (which Dr. Latimer didn't believe--she thinks it may have been strep related)...I asked her for the azith because I was aware that a lot of the parents on the forum had seen good results with it. In our situation, all six of my family were on an antibiotic at one point, four of us were on antibiotics three times, and my PANDAS daughter was on antibiotics 4 times, and she was reluctant to go with the antibiotics in case she might be creating a resistant strain in our house...all understandable. That morning we had called for the results of her 72 hour throat culture that we had her ped. do, and it was negative; Dr. Latimer felt the infection was cleared, but I had expressed concern that I think my son may be a "carrier" since he has also had impetego twilce....She gave me enough refills to get me to the beginning of Sept. She didn't say this directly, but the general feel that I got from her is that a longer course is needed to be sure the infection is cleared...I have yet to address the long-term use of antibiotics with her. Diana and I have briefly discussed this...I do believe that I will lobby Dr. Latimer to keep Becca on a prophlactic dose of some type of antibiotic...maybe something not so broad spectrum. My Uncle had RF as a child, and he took penicillian for 20 years. I can also understand why she would be reluctant to prescribe antibiotics to your son if his bowel issues may be a result of long term use of them...It sounds like Dr. Latimer is thoughtfully considering your son's situation because it is complicated.

I'm new to this PANDAS thing, so I am trying to sort it all out...just like the rest of us I think. I have no doubt that IVIG or PEX is probably the best way to fight this for many families, and that it has cured some children. But it is also possible to still have a PANDAS episode after receiving these treatments. I do believe that many parents when faced with a choice of having a safe procedure that just may cure their children will opt for the procedure...it makes perfect sense. But I also think that if you gave a parent the choice of medications vs. a medical procedure....many parents would choose the medication. I think that my dd's episode was cut short by the use of the steroids, and I am so thankful that I didn't have to wait months to see her fully returned to us. Forgive the poor analogy (I'm not trying to make light of anyone's situation), but I think of the prednisone as treating brain inflammation, as benedryl would be used to treat an allergic reaction. You need to use something that is powerful and quick...and you usually continue the benedryl until the rash disappears. As for future PANDAS episodes...that is currently my nightmare. I do think prophlactic antibiotics are key... Not all children with PANDAS (but I think most) respond to other immune challenges, and what if you have already had IVIG or PEX...again it goes back to treating the inflammation. I don't think a lot of harm can come from using a steroid to decrease inflammation and block an immune response...occasionally. What if, as in our case, we think we caught this early? Is IVIG or PEX really necessary? Who really knows...I do think if she has another episode we will be looking more seriously at those procedures...

On June 5, when we took our dd to see Dr. Latimer, we asked about the Cunningham blood test, and she said that we would have to postpone treating her (with prednisone and azithromycin) until her blood was drawn. Of course that was not an option for us---but based on that I think the medications do effect the results.

Michele, I'm really glad that you had a good visit...Dr. Latimer is a wonderful woman! Diddo to everything that you posted about her. Her family has been in our prayers...I'm glad you said that she seemed okay. She put my daugher on a month of prednisone, and at the end when my husband and I saw major improvements, she allowed us to continue for two more weeks! Now my daughter is about 99.9% better, and she seems to be getting better each day! Dee, The only thing at our visit that came up about the length of prednisone treament was when I had expressed concerns for the side effects of it. Dr. Latimer had said that the side effects usually occur in people who take them for a few months or longer...she said it can make some kids "cranky" and may cause insomnina. I'm actually puzzled by a "5 day burst". It seems to me if a medication is causing improvement...why stop after only 5 days? Prednisone is a very effective anti-inflammatory. Doesn't it make sense to continue the medication until the inflammation is down? I believe that is how it is used when treating asthma, rashes, and a whole host of other issues. I think the difference between the ideas behind a 5 day burst, and a longer course is the intent in it's use. Someone correct me if I am wrong here because I have never consulted with Dr. K; But Dr. K's purpose for the steroid is to see if there will be a positive response to IVIG, and Dr. Latimer's purpose for using the steroid is to actually treat the inflammation. Also, keep in mind that steroids supress the immune system, so they are helpful in treating auto-immune issues. Dr. Latimer did tell us that if our daughter didn't fully recover after the prednisone treatment, we should be considering IVIG or PEX...so I do think that both Dr. K and Dr. Latimer are in agreement about the treatments for PANDAS, but I think Dr. K kinda skips right to IVIG.--please someone correct me if I am wrong because I have never communicated with Dr. K--this is just my understanding from what I have read on this forum.

I want to say that as a parent, sometimes it is so hard to decide what the right course of action is, and nobody knows your situation except you.... (Not much help I know)! My dd6 started having a PANDAS episode mid/end of April, and when we met with her pediatrician on May 1 it is the first time that I have ever heard of it. Looking back on the past, I strongly believe that she was affected by her brother's previous strep infections and/or her vaccines, but I have no real recollections of exactly when her OCD type of behavior started, so I really can't prove it--we were aware of it. Her symptoms are mostly anxiety, and obsessive thoughts. Because a lot of these behaviors were not really new to us, we were assuming her "shut down" in the spring was because she was having too much of it. You see, we have a family history of anxiety issues--Thank God her pediatrician was willing to make the link between her recent step infections and her behavior! Knowing what I know now....I believe that this is truly her first "disruptive" episode. Her last quarter in kindergarten was not good for her... (You could go back and read my previous posts if you want the details). I wish I had a treatment protocol in place already. It would have saved her weeks of crying and "withdrawing" into herself...It would have saved her from (well-meaning) comments from her classmates about why she wouldn't talk to them any more...It would have saved her from the weeks of not being able to decide anything for herself... We have just finished up six weeks of prednisone, and she is on 100mg azithromycin every day for now....and she is 99% improved, and she seems to be getting better everyday. The prednisone was to help with brain inflammation.... Many of the parents on this forum are struggling to find doctors who are willing to help their children. If your son has another episode that is severe enough, it may be difficult for you to get proper treatment quickly. But if you establish a relationship with a trusted specialist now, then in the future you will be able to your son help sooner. Of course this is all speculation on my part, but it is a point to consider

I also hope the visit goes well....

My Daughter was also helped tremendously by Dr. Latimer. I have heard second hand about the following doctor, he does do IVIG. He is in Philadelphia. Agustin Legido St. Christopher's Pediatric Associates Chief, Section of Child Neurology Professor of Pediatrics and Neurology Dept of Pediatrics Erie Avenue at Front Street 3rd Floor ACP, Suite 3314 Philadelphia, PA 19134 Tel: 215-427-5470 He also spends time in Reading: Only 1 day a month, they are booking into October now Reading Hospital Medical Center Deptartment 132 PO Box 16052 Reading, PA 19612-6052 610-988-9447 I'm also seeing a ped. rhematologist on August 11 at Hershey Medical (South Central PA)...I will post if he is also a good doctor

I'm sorry that you have to go through this too...My DD started having symptoms in April, so I am new to the whole PANDAS disorder, but From what I understand, yes you can have a low titer count, and a negative culture, and still have PANDAS. Many of the parents on this forum have said that their children's titer counts were normal...as for the negative culture...strep can be in the throat, sinuses, skin, gut, and some other...not really sure. Check out Diana Polhman's website, www.pandasnetwork.org I think it addresses these issues.

Vicki makes an excellent point! Prednisone is an immuno-suppressant. Your child should be examined before being given the steroid...prednisone can casuse serious complications with many other common health issues. I wish you the best of luck...if the DC area is accessible to you...seek out Dr. Latimer...she will help you.

But what confuses me...isn't IVIG and Plasma Exchange just as temporary as a steroid...if your defination of temporary is that a relapse will occur with another strep infection? Or is the "steroid burst" only temporary? My daughter has been on a steroid since June 5th, and is about 99% recovered...I was told that she will be fine unless she gets sick again. Aren't all of these treatments just to get out children back to their "baseline." Doesn't a proph antibiotic seem to be the best long term course, after our kids have recovered. My unlce had RF, and he was on peniciillian for 20 years. I'm confused because it seems that IVIG is thought of as a "cure", and I just thought it was a treatment.

It must make you crazy, Diana, following people by their user names on this forum and their real names though regular email...you deserve a year long vacation LOL!--thanks, for calling me this morning! Just wanted to update on my daughter....she was supposed to finish the prednisone on July 4th, but when we refilled her perscription, we received prednisone 5mg/ml, and she had been taking that since Thursday, July 2nd, and we started to see some excellent results. Prior to that, the pharmacy didn't have the prednisone in, so they filled it with pedia-pred (5mg/5ml); we just adjusted the dosage accordingly. My husband and I were concerned that she seemed to be improving so quickly, and that she was so close to being back to 100%, that we didn't want to stop the treatment just yet. Andrea, one of Dr. Latimer's office staff, got a message to Dr. Latimer for us, and we were told to continue on our present dosage until July 18th, and to contact the office shortly before then to let them know how she is doing. So my daughter has been on prednisone since June 6th...and we can honestly say that she is about 95% better...just a few more lingering issues, and hopefully they will be done by the 18th. I had read somewhere on this forum that the effects of the steroid are only supposed to be temporary.....I pray that is not the case! Has anyone noticed a different in effectiveness from pedia-pred vs. regular prednisone? I ask this because I refilled the prednisone on June 25, and that day I gave it to my daughter...it was disgusting even though I mixed it with juice...I told her she didn't need to take it again until we completely finished up the pedia-pred (it was mint flavored). However, I noticed that she seemed to have more improvement than the baby steps that we had seen. After the pedia-pred was fully used up, we gave her the prednisone (mixing it with soda makes it tolerable for her), and immediately we began to see a major improvement. The following day, I googled pedia-pred vs. prednisone. The only conclusive thing that I found out was that pedia-pred is prednisolone not prednisone. Apparently, a person's liver converts prednisone into prednisolone. For cases where there are liver issues, prednisolone is perscribed to bypass the conversion process. The websites all said that they were equally effective...so I'm probably barking up the wrong tree, and my daughter's improvement is not from the switch from prednisolone to prednisone, but from the cumulative effects of the month long steriod... I was wondering if any one has had any experiance with both prednisone and prednisolone, and if they noticed a difference.

iI hope all goes well, and I will keep you and your family in my prayers! ~Karen