Kayanne

I just finished it....WOW!!! I went to Borders this afternoon around lunch, and they already sold their two copies...Luckily Barnes and Nobel had it....also picked up "Against Medical Advice"...can't wait to start that. Beth Maloney is a very talented storyteller. Of course the tears were flowing, but I would have cried even if it wasn't so personal. I am very struck at how extreme and chronic Sammy's case really was. What I really am so pleased about is how she didn't stop at PANDAS...she was willing to push the idea that many mental issues could have real infectious cause. Great Job, Beth!

Awesome ideas.....I was going to pick the book out today...I have a lot of errands today, so I probably won't be on the forum much. I was thinking of donating a copy to the library/school too. I have been thinking a lot about how I can help...many of you know that we are in a great place right now, because it was caught early so I feel like I should be doing more. I had mentioned starting a foundation to Diana once on the phone, and she said that it was not something she felt like she could deal with--perfectly understandable--she is really on the front lines of this. I've googled starting a foundation a few times...I really think it would be like starting a corporation...I've also been thinking about a writing a book...or somehow working with the people who have the rights to The Velveteen Rabbit, and publishing an edition that has information about strep related illnesses in the back...you know how a lot of kids books have an informative section more for educational purposes. DCMom...we think alike...I was thinking of putting together an informative brochure, having it done by a printer, and just distributing it to schools, and peds offfices. I imagine there will not be a lot of activity on the forum today because people will be reading the book. I've got to go...lots to do today. ~Karen

My husband really takes a lot of this on emotionally...he feels that the anxiety/ocd component was from him, and he has a hard time with that on some days. When Diana asked about autoimmune issues or RF on the phone with me...she told me RF was autoimmune a lot clicked in my brain, and I was upset with myself for not realizing to disclose this to the peds when they tested positive for strep--the way my mom did when I was a child. However, as I thought more about it...I really don't think anything would have been done different by my peds office. I just think this generation of doctors is very careful about antibiotics. My father often tells me that when he had a sore throat and went to the doctors...you got a shot of penicillian right away--I'm guessing this was because they had no way to know if it was strep without doing a culture. I truly am hoping that this is a lot like RF. My uncle's experience was difficult...six weeks in a regular hospital, and a very long time in a heart hospital. However, he recovered and took pen for 20 years without any more issues. I am hoping for all of our kids, that once we get them back to their baselines--prophylaxis are enough to prevent relapses--just like RF. I'm probably making this out to be far more simple than it is, though. MMC, Did you take antibiotics after this first happened to you? You said you ticced until you were 14, was there ever a waning of symptoms for you prior to that--like the episodic course experiences by PANDAS kids? Did you receive any treatment that you were aware of? Thanks, Karen

They can't just do that without you signing some release, right? I hope so. Karen

I'm glad it was nothing too serious....my girlfriend's daughter kind of had the opposite....the urine was backwashing because the flaps were not working properly...also causing frequent UTIs...one laproscopic surgery and an injection of bulking agent, and she is perfectly fine now. But it was a real worry! You guys are in my thoughts and prayers. Karen

Thanks for clarifying that...sorry about misinterpreting

I agree with Dr. K about keeping a kid on steroids...but steroids work for this in the short term; just as his one-time treatment of IVIG, and Dr. Latimer's one-time treatment with PEX. This is not like other autoimmune diseases....if the strep is kept at bay....the antibodies don't come back. I'm feeling somewhat confident that I may never have to deal with another full blown PANDAS episode--maybe some viral bumps along the way. She is at 100% and will be on antibiotic prophylaxis probably into adulthood. My Uncle took penicillian for 20+ years after his RF with no side effects and no reoccurance. He may have just been joking about "internet gossip"; but I have a lot of proof that my daughter was helped by prednisone....how is it gossip to tell the truth about my daughter's story? Would she have been better now without it....probably...because we cleared her strep...but she had more of an "overnight" recovery while on the prednisone than the initial onset of the symptoms. I do not believe she would be at 100% right now without the pred. She started first grade without any issues...her last quarter of kindergarden she couldn't even be "graded" because she could barely talk. Every day I thank God for Dr. Latimer and Diana Pohlman and all of the people who participate on this forum. I'm sure Dr. K is a wonderful doctor, and I am very happy that he is helping in the treatment and gathering of information about PANDAS.

I wasn't thinking that you were unhappy with Dr. Latimer...I was just making a general statement...because in my limited experience in trying to get help...I was so disgusted wth CHOP...that I wasn't going to even consider seeing Dr. Josphine Alia because she is also with CHOP. We were afraid it was more of an institutional policy for these kids to be put on psych meds....and Dr. Alia is a ped. psychatrist.

I'm so sorry that you are going through this...I know Dr. Latimer will speak to you child's pediatrician. The first time I spoke with her, she asked me to have my daughter's doctor call her. He did, but they played phone tag, and then he was going on vacation....My husband and I hightailed it down to Dr. Latimer's office, and it was the best we could have ever done. I also want to add that Andrea and Faith who work in Dr. Latimer's office are extremely nice. They are more than willing to answer questions...call them....see if they have payment plans or something...I thought I read on another thread that she takes Medicaid. What I'm saying is...call and ask...the worst that will happen is you'll be told no, but somehow I find that hard to believe. She is in Bethesda Maryland---right outside of DC...I think about a six hour drive for you. Her office number is (301) 530-9200 Good luck ~Karen

Well, he seems to be the most experienced doctor with PANDAS...and I do think that he confers with doctors all over the world for this, so he probably has some good reasons why he favors IVIG over PEX. It could be as simple as IVIG only being the local treatment choice at the time he bagan treating PANDAS, he saw good results, and is of the mindset, "If it is working, don't mess with it." P.Mom, I believe there is probably some truth to what you thinking when you consider all doctors...they are somewhat limited by the policies, procedures, equipment and drugs that are available to them at a hospital. If not happy with treatment, seek a different hospital affiliation and see where that takes you. It seems Georgetown has no qualms about PEX. A rhumatologist I saw at Hershey Medical made PEX out to be a very dangerous procedure, that only an irresponsible doctor would try...it was kind of laughable...I just shook my head...we were heading out the door anyway....

I have been thinking about this a lot lately too. I know that genetically she got the vulnerability to strep from my side....My Uncle and Grandmother on my mother's side both had Rhumatic Fever. But my husband's side of the family has a history of anxiety, mild ocd, panic disorder and depression. My husband has been diagnosed with Panic Disorder. But we have four children, and strep was rampant in my house this spring. Why didn't my other kids have PANDAS symptoms or at least the full blown shut down that my DD6 had? You see, I'm not fully convinced that the strep didn't effect my other kids...it's just very, very minor that everything looks normal...DS 4 1/2: just a difficult phase--he doesn't really like to draw--he would rather just scribble...DD 8 1/2: an emotional phase with a lot of crying, and everyday some complaint about pain (usually when we ask her to do something she doesn't want to do)....I am seeing PANDAS everywhere, and my DH thinks I am looking far to hard for it. He is fully supportive of me with regards to my PANDAS daughter, but he is reluctant to put her through any tests and such because she is doing so well. I know he would not agree to having my other three kids go through a blood withdrawl for the Cunningham test because I have a weak suspision that they have PANDAS... Sorry about that side note...so I've also asked myself how come it seemed to completely skip my generation? And the only conclusion that I can make is that it has to do with how aggressive the strep is treated. When I was a child, I was told numerous times that Uncle Bobby had to be in the hospital for six months because he had a sore throat that he didn't take medicine for. If my or my sibling's throat even looked a little red, my mother took us to the doctor immediately. I don't know when the rapid strep test became popular, but I was never swabbed as a child (I'm 36). If the doctor was reluctant to prescribe antibiotics, my mother told them about my uncle, and then I was given the antibiotics--doctors knew that untreated strep and family history contribute to RF. I can tell you of at least two times when I took advantage of that....sucked on my throat a little to miss school, but had to take medicine. So, my mom and her siblings were told to make sure strep gets treated right away to prevent RF--thus the generation skip. Three things are thought to have to happen in order for RF to rear it's ugly head: 1) the right strep strain, 2) genetic vulnerability, 3) and strep that is not properly treated. With the use of antibiotics, it has declined dramatically. Back to why did only one of my children get PANDAS. I believe it all has to do with how the antibiotics were prescribed in the first place. DS4 and DD8 were the first to test positive, and they were each put on a 10 day course. Next I brought in DD6 (my PANDAS child) and DS17mos. Neither were tested....doctor said he was going to assume it was strep because of my other two (and I had also tested positive), however; he only prescribed a 5 day course of OMNICF for them both. A five day course is the low end of the treatment range...It never occured to me to disclose the genetic link to RF because at the time, I didn't really understand it and hadn't thought about it for years (in fact, I kind of thought that my mother was a little fanatic about it). PANDAS D6 was back in the office 8 days later...(according to Swedo five days is all it takes). This time they prescribed 10 days of amoxicillian--a step back to a weaker antibiotic, and if it was intracellular then forget it. It was only a few more weeks that we started to see the PANDAS symptoms. I believe her initial symptoms were mild compared to some of the stories that I read about---particularly the ones whose children started with PANDAS symptoms, and then found out about the strep. But the ped's office did get it right after that. The third round of positive tests DD8, DD6 & DS4 were put on Rifampin simultaneouly with other antibiotics--PANDAS DD6'S rifampin was liquid, and I think some settled into the bottle so that she didn't get all of it. DS17mos never came up positive on rapids and cultures so he was only on OMNICEF for 5 days in the beginning. PANDAS daughter needed one extra course of anitbiotics: 10 days of clindamycin 300mg/3Xs day. I really believe that the ped's office being aggressive with her strep has made all the difference. The last time she tested positive, the doctor said her throat looked "beautiful", but they didn't put forth a "carrier" theory. But at this time we already suspected PANDAS, and the peds office had set us up at CHOP with an appointment. I realize that this is an extremely long post, but I really think that antibiotics are the key to either preventing it, making sure the autoimmune mechanism is slowed down and eventually stopped because if we don't clear the strep...where does that leave us...constant antibodies assulting the brain. I also would like to note that I think many more very, very mild issues could possibly be attributed to strep...that's why I put in the paragraph about my other children's issues. It could potentially revolutionize mental health treatments. ~Karen

I wanted to bump this up because it was so informative to me...don't forget to hit the compatability view button. Thanks, EAMom for posting it..... ~Karen

Her last course of full strength antibiotics was in May. Clyndamycin 300mg/3Xs a day for 10 days. Dr. Latimer put her on 100mg daily of azith for a prophylaxis in the beginning of June....we just switched to 200mg/2Xs a day of pen vk a little over a week ago. ~Karen

Our child had some unpleasant side effects from the prednisone--a nasty temper, weight gain (better pack a bigger lunch), sleep disturbances--and I personally wouldn't repeat the prednisone without careful thought. Our rhumatologist said he'd consider trying a different steroid in the future. asaxon, I'm curious as to the dosages that you used. How are your child's PANDAS symptoms now? I really hope all is well. Bronxmom2, My daughter's was just beginning to become very "ragey" about a week before we started the prednisone, and at first the rages did seem to get worse, but by the second or third week, she wasn't fighting us anymore...I was still having to pinch her cheeks to get her to take the first few spoonfuls of food still, but I wasn't having to pin her down to do it.

I think since it was only a 5 day course tapering off was not considered necessary. Of course, we should have known nothing is ever typical for this kid. She is sleeping...kind of-very restless and I'm so afraid she's going to get up for the whole night. I'll try calling the doctor tomorrow if she still seems to be having a lot of trouble in the morning. Do you ever feel like you are just a pain in the tookus when you're constantly calling/seeing the doctor? I pray she'll be okay in the morning...do you have any prednisone left? In case the dr. tells you to give another dose. I had read on a website when I was looking it up for my daughter that it is more effective if given before 9am because then it is in the system when you body's adrenal gland releases it's hormones. Yea, in the spring, I had my four kids in and out of the ped's office so many times because we couldn't kick the strep....I could hear the nurse rolling her eyes over the phone.

Is she okay now? that sounds really difficult...the effects of the pred should have still be happening at least for a lttle while after stopping the medication....for her to have such a hard time makes me think it was withdrawl symptoms. Did your dr. say this was okay for a tapering down?

Yes, there is a strain resistant to azith in Western PA....I think P.Mom didn't have good results with azith because of it. Good Luck ~Karen

Are you on the azith because he tested positive for strep 11 days ago? Or is this for a prophylactic? Or are you trying to see if azith's other properties (immune-modulating and anti-inflammmatory) will help bring your son out of his PANDAS exercerbation? 250 mg is the standard full strenth dose for treating infection (the 5 day zith packs are day 1: 500mg and days 2-5: 250mg) However, I think colleenrn recently posted that she has heard from a doctor that 500mg is required for infection. Can you ask around to see if he may have been exposed to strep from somewhere? Having an idea if he was exposed or not will probably be your best clue as to if this is strep or not. Is anyone else in the house complaining of a sore throat? If so, a rapid strep and/or culture on that person could help you to determine if this is strep or not. I'm saying to maybe look at the whole picture because I don't think you will get a positive culture being on the antibiotic; however you may get a positive result on the rapid strep test....I was told that by my daughter's ped practice that if there are any strep antigens present, the rapid could pick it up better...you see the rapid antigen test and a culture are two different processes.--but always remember those tests are only as accurate as the sample taken, so make sure the nurse/doctor is thorough....not helpful for our kids though. Personally, I think since you are on what is considered to be a full dose, then the chances of getting anything positive is not likely. This summer my daughter was only on 100mg of azith (she was 45 lbs) daily as a prophylactic, and I had to take her in a couple of times for a red/sore throat--rapids and cultures were both negative...but I believed the results of the rapid because others in the house had a normal cold with sore throat.

These are also questions that I have...I can't seem to understand the molecular mimicry paper...this has been a struggle because I have don't have a medical background. Perhaps we should start a new thread...the mechanisms of PANDAS

Thank you so much for that info...it was very informative. Maybe I need a lesson in using search engines....I couldn't find anything that definitive....LOL!! That is why I love this forum!!! ~Karen

I'm so happy you are seeing improvements....I hope it continues. As far as the azith, what does your son weigh? You can google azithromycin dosages and usually get an accurate idea. When Dr. Latimer put my daughter on Prednisone in June, she also prescribed 100mg of azith daily as a prophylactic. She was about 42 lbs at the time. ~Karen

Again, not way off base at all. In fact it is the best explanation that I have heard as to why IVIG works. My daughter may not be anywhere near PEX or IVIG right now, but I don’t have any guarantees about the future, and I am struggling to make sense of it all. So I greatly appreciate your taking the time to post your understanding of what is going on. As for the excerpt that you posted about PEX, it doesn’t really apply to PANDAS because in this particular autoimmune disorder, the offending antibodies are not being continuously made by your body….once the strep is cleared, the antibodies subside, thus resulting in the waxing and waning of symptoms. That is why PEX can stand alone, why a one/two time treatment of IVIG has a high success rate, and why an indefinite use of prednisone is not required. So IVIG could be working because it is helping to clear a stubborn infection, or it could be killing the auto antibodies or both? As far as the BBB, I’m still at a loss as to how that plays into it…If anyone who can fill me in it would be great! As far as prednisone not being long lasting…yes I think the typical “5 day burst” that many parents do is more for diagnostic purposes… to distinguish PANDAS from non-autoimmune tics/OCD, and it doesn’t last because it is not taken long enough to fully address the brain inflammation. But when used as a treatment, it is just as permanent as IVIG or PEX…until the next strep or viral issue hits. Best of Luck, Karen

I hope it turns out to be nothing of consequence...positve wishes and prayers are being sent your way! Karen

I really feel that prednisone is under utilized for PANDAS...it is used very frequently for all kinds of things short term...without serious side effects. My daughter took it for six weeks, as per Dr. Latimer. She is now 100%. Dr. Latimer feels that if she has PANDAS symptoms again, we should be able to control it with more steroids. Of course this was her first recognizable episode, and she is only 6 yrs old--so our cases are different. On Aug. 11, we wasted our time and went to a rhumatologist....two good things came out of that meeting: 1) he felt that occasional use of prednisone was safe if it was effective in her case, and 2) I was able to pick his brain about prophylactic antibiotics. One thing he did say was that teenagers do seem to show side effects of the pred sooner than younger children. They need to be watched more carefully. The long term uses of prednisone for PANDAS is not really called for because once the infection is cleared, the autobodies are thought to subside...paving the way for healing. What the prednisone will do, is suppress the immune response (no antibodies attacking the brain) and help with brain inflammation--thus letting your daughter heal quicker and maybe address inflammation that might not have healed. We saw baby steps of improvement so that by about 3 1/2 weeks in, I was sure we were going to need PEX or IVIG. But with only three doses left.....it was an over night miracle she went from about 70% improved to 96% improved...she began to talk to us again! So at that point we asked to extend it for another week---why stop when she was so close? Dr. Latimer told us to keep it up for two more weeks. It seems you are well on your way to clearing the strep...I would talk to your doctor about extending the pred...she what he/she has to say about it....I'll bet they've written longer prescriptions for prednisone for asthma or excema. Did you get my pm? Don't hesitate to call me! Good Luck, Karen

No, not off base at all...I think it is all becoming clearer to me....here we go...just my theory.... As far as autoimmune diseases go, PANDAS is one that needs an outside trigger to get the autoantibodies circulating...if you filter them out, they will only be produced again if exposed to strep, and or maybe a much less amount with a viral issue...so If you filter the antibodies and control future strep then it would be essentially a good way to manage it--could even be considered a "cure". Personally, I don't think there is a cure...just effective ways to manage it. Swdeo's experience with PEX has been that if strep returns the symptoms return. Remember, the medical model for PANDAS was RF and SC, both of which are believed to be casued by several factors combining: the right strep stain, strep that is not properly treated, and genetic vurnerability. So once a family is aware of PANDAS, strep is treated aggressively...thus lessening the chances of another severe exercabation. I know my daughter's strep wasn't treated properly...there are many whose story starts with the PANDAS symptoms, then led them to a strep infection. Now lets take it a step further, and factor in what we are now learning about PANDAS kids immune systems, and that explains why IVIG has been working. And also why it may take longer and stronger courses of antibiotics to clear the strep. Please correct me if I'm wrong on this but isn't the purpose of IVIG to bring the immune system to somewhat of a baseline? If a child's immune system seems to be working the way it should, then wouldn't the brain have time to heal also? What I don't understand about IVIG is how does it address the autoantibodies....does it neutralize them? Another question my husband and I have been asking, is why after these procedures an anti-inflammatory like prednisone isn't prescribed to address brain inflammation.....wouldn't the recovery be quicker?