Kayanne

Elizabeth, I am wondering if your doctor has given you a general idea on how many IVIG treatments it wil take to be considered healed? How often will he need to re-run the immunological tests? Will you revaccinate with pneumovax or prevnar to test the immune response? Do you know if he has successfully treated any PANDAS kids with this protocol? Were their symptom exercerbations with viral issues also resolved with this treatment? Thanks a lot, Karen

I'm sorry your having such a hard time with the steroid...did Dr. L indicate that this could mean IVIG or PEX instead? ~Karen

No diarrhea here either...with 3 out of 4 of my kids on antibiotics several times this spring. I've been a little lax about the pro-biotics too...LOL...especially since she started on the pen v k. My third round of antibiotics for strep was 2 zith packs, and on the 500mg days, I had stomach pain and diarrhea.

Dr. L also has my dd on prophylactic antibiotics, and she has not mentioned anything about a limit to how long she will prescribe them. This is like Rhuematic Fever...it just effects the brain instead of the heart and joints....stress this to the neuorologist...the PROVEN PROTOCOL for RF is prophylactic antibiotics. This is also considered to be a lower spectrum of Sydenham's Chorea....which by the way also calls for prophylactic antibiotics. I also know that Dr. L will take your neurologist's call...ask him to call her. I wholeheartely agree with all the other posts.

I'm sorry your having such a hard time, your family has been in my prayers. ~Karen

Do you think a DAN doctor would be practical to use instead of a normal pediatric practice?--ya know for all those quick, "I gotta run dd to the doctors because..." Or are they more like specialists who have waiting lists, and do a lot of consulting? I am considering switching ped. practices, and I would just like an MD or DO who seems to think a little more critically. I'm really getting sick of being fed the "taking points" from all the offical organizations. I was at the peds office two weeks ago for my oldest girl, and I had all four of my kids with me...the doctor was appalled that I didn't want to do the flu shots on all of my kids right then--I was not about to blindside them like that. In the past, I always felt so confident refusing the flu shot because my kids were always so healthy...now I'm not so sure. I've never been anti-vaccine, but I think there is mounting evidence that there are definately some children who should not recieve them, and it seems that the established medical community are really digging in their heels on this one. I came across a website that claimed to have the "leaked" H1N1 vaccine package insert, and in it it said that it has not been safety tested on children under 4. my son is almost 2...and this doctor was saying that I was risking my children's lives if I didn't give my kids the H1N1 shot. I've just gotten angrier and angrier about this! If I had had my wits about me, I would have told her that maybe there wouldn't be so many deaths from secondary infections, if doctors weren't so reluctant to prescribe antbiotics!!! sorry guys...did an edit to tone it down

Dr. Latimer is a pediatric neurologist who was the head of pediatric neurology at Georgetown Univ. Hospital. She is currently in private practice. If you are accessible to the DC area, I would highly recommend that you see her. I do know that she will also consult with other doctors. Her office number is (301) 530-9200

I don't know a lot about sensory issues, but there was no doubt that during her PANDAS episode, my dd was very sensitive to sound. It was extremely unsettling for me to talk to her in a normal voice, and have her just jump right out of her skin because she was so startled. Her teacher was very concerned that she was startling even with a soft tone.

Dr. K is a pediatrician Dr. Latimer is a pediatric neurologist

Bronxmom2, We did the 30 day steriod treatment as per Dr. Latimer, and we only saw "babysteps" of improvements like the ones you are describing for almost the entire month. We felt that she was only about 70% improved by about 3 1/2 weeks into it. With only 3 doses left, she began to have dramatic improvements--in two days she went from about 70-75% improved to 97-98% improved. We felt that the dose she was on at the end (5mg once a day) was low, and we didn't want to stop until we were sure she was 100%, so Dr. Latimer allowed us to continue for an additional two more weeks. At the end, she was essentially back to 100%--with only some really minor issues that have resolved themselves, she was completely free of PANDAS behaviors for almost all of Sept. She is dealing with a cold right now, and we have noticed that she cries a little too easily, but it is not near the level of emotional lability that we saw at the beginning of this in the spring. I personally think it was because we switched from pedia-pred (prednisolone) to prednisone intensol (prednisone). We were using the pedia-pred because the pharmacy substituted it because they had to order the prednisone intensol---and we were into the refill by the last few days. However, every doctor that I have asked (including Dr. Latimer) about the difference between the two says that they are just as effective, and that we were probably just seeing the cumulative effects of the steroid at that point. I think the thing to keep in mind right now is that you are seeing improvements. In our case, it was also gratifiying to know that others were noticing the improvements. It helped me to realize that we were on the right track. Go back and read my posts, there is a lot more detail in them. Good Luck, Karen

I want to add a question to this: has anyone's child ever had hives/urticaria with an acute strep infection? In July 2006, my then 14mo old son broke out in hives. Ped said his throat didn't look like strep, but swabbed it anyway, and it was....this was the first time we ever had strep in our house. Since then he has had impetigo twice, and his was the first to get a strep throat this past march, and he also had a rash with it--he definately shows sign of strep in his skin.

We live in spring township...it's a small world, we used to be neighbors ~Karen

I checked off dd's pediatrician because we went to see him regarding her complete behavior shift in school, and at home...emotional lability, ADD, mostly obsessive thoughts that were causing her to not talk, tell on herself, and make decisions impossible. My husband and his family have a history of anxiety/panic disorder and a little bit of OCD, so we were fully expecting him to steer us toward setting her up with therapy, after the typical tests. The pediatrician said, "I don't want to open a can of worms, but there has been a suggested link to repeated strep infections and OCD and ticcing." He said he would run the titers and other blood work, if the titers were high, and everything else was normal, then he would refer us to CHOP. He gave us the general idea of PANDAS, but he never used the word. He had even said that he had seen a case where a boy had began to have a severe arm tic after strep. When I asked him what/if any treatments there were, he said PEX. In the meantime, we were to set her up with counseling. Titers came back high...we went to CHOP...not very helpful...wouldn't give a PANDAS diagnosis because she had yet to show a waxing and waning pattern. I found this forum that weekend; posted and got awesome advice about Dr. Latimer. We went to a pediatric psychatrist who said it was PANDAS, and that same week we saw Dr. Latimer, and she treated with prednisone an prophylactic antibiotics. DD is now showing no signs of PANDAS, and is currently on pen vk. ~Karen

We took our dd6 to her on June 5th. Also with us, she went through the history, did a physical exam, spent time looking at my dd's kindergarden journals of before and what was current at the time. She felt that steroids were our current option because our case was not severe enough. She did say, however, that if she was not recovered by the month's end then we would need to consider PEX or IVIG. I asked her about the cunningham blood test, and she said that it wasn't necessary (our dd's case was very uncomplicated), but if we wanted to do it, then we would have to postpone treatment with the prednisone. That was not an option for us. She told us then that if there is another episode, then it is something we should do. I think there are some guidlines regarding prescribing medications only for your patients, so I'm not sure if a phone consult qualifies... I can't really say if she has a specific antibiotic protocol. From reading this forum, I've gotten the impression that she does consider each case individually, so I think if you make a good case for full strength antibiotics, she will consider what you have to say. Good Luck, Karen

Hi Everyone, I'm so overwhelmed at having found this message board . . .not sure where to jump in. I'm happy to meet you. I've been able to find VERY little info on cognitive deficits, other than the deterioration in handwriting, which is fairly common. For older kids, the deficits are tough, because they're aware of the differences in themselves. He was Here's my story: In 2003 my bright, happy Checkers prodigy ("I've never met a grown-up I couldn't beat!") was in kindergarten, and having a great year. He developed scarlet fever (which I had always imagined as some turn-of-the-century, languishing disease - actually, it's "just" strep and a rash - who knew?). He was treated with antibiotics and good to go. About 3 months before kindergarten ended, I noticed that the teacher's attitude toward my child had changed. When I asked her about it, she said that he had recently become "quarrelsome," and hypothesized that he had "multiple learning disabilities." As a former teacher, I couldn't believe we were talking about the same kid. I was puzzled. About a week later, while opening presents on his 6th birthday, my son's head and neck body to jerk. He also developed a vocal tic - a sort of brief, high screech that was almost constant. The symptoms made no sense to me, and they were growing worse. We had no family history to help explain it. I checked into EVERYTHING, and then late one night I stumbled on some paragraph about children who've recently had strep, and subsequent behavioral changes. I printed it out and took it to my pediatrician the next morning. She said, "I've never heard of this," gave him a mega-injection of antibiotics, and called the Neurology Department of Children's Hospital. His ASO was very high. His neurologist diagnosed him with PANDAS, and said it was the clearest case of PANDAS they had, because the previous strep infection had been documented by the pediatrician. One doctor seemed quite excited about this. At that time, many people did not believe in PANDAS as a discrete entity. One physician (an immunologist we went to) had never heard of PANDAS, and pronounced it "ridiculous." At that time the treatment was pills (a major tranquilizer, and a neuroleptic (Thorazine) and IVIG. We tried 3 courses of different medicines; his symptoms worsened. He also had some visual distortions - has anyone else experienced this? He would see blue lines, or the bark on a tree would be a frightening face, etc. He had terrible side effects from the medication. Truly, he was more miserable with them than without. After 4 trials of different medications, we decided to wait it out with no more pills. He entered first grade still ticcing and screeching (although it was growing quieter), with separation anxiety and a bee phobia. About half way through the school year the symptoms slowly eased up, and ended. We had 4 lovely PANDAS-free years. We hoped we were in the category of kids who only experienced one episode. We weren't. Strep swept through his classroom, and he got sick. He missed 4 1/2 months of 4th grade. His motor ticcing was so severe that his muscles ached. He was frequently frightened - even of things like the second floor of our house. He couldn't sleep alone. He had headaches and dizzy spells. He was angry. He began to have "misery tantrums" - I'm not sure how else to explain them. He would twist o the floor and sob, "I want to die." This could go on for hours. His was admitted to the neurology department at Children's. He had IVIG. Nothing changed. We spent a total of 4 days there. I discovered that now, EVERYBODY believed in PANDAS, and nobody (at least here in Boston) believed in IVIG anymore. We fought hard to get it, even meeting with a panel of neurologists to argue our case.Now they believed in Orap, which is an anti-psychotic, and can cause tardive dyskinesia (the hallmark of which is ticcing - now there's irony.) Why does Orap help tics? Dunno. After about a year, the symptoms began to subside. Then he caught Fifth Disease at school. To our horror, all the symptoms returned. We had thought it was only strep we had to worry about. Where we're at now: It'll be two years in January. We haven't actually had a period that was completely symptom-free. Each time my son begins to get a cold or flu, the symptoms return full-force. We can actually TELL he's about to get sick by the tics and tears and fears. We've noticed major cognitive changes - our 11 year old forgot the multiplication tables, couldn't name the months of the year, frequently seemed foggy about events that were routine. His teachers noticed the change immediately. Always good at Math, even addition took him a bit of time. He couldn't read with fluency, where formerly he'd devoured the Harry Potter books. The thing that troubles me the most is how he feels about himself. PANDAS has been going on so long that it has changed who he is. He uses anti-anxiety medication and anti-depressants. He has become pessimistic and self-conscious. To say his "self-esteem" is low is a major understatement. I miss him; HE misses him. So, a day at a time. I'm really sorry your going through this again...this board has helped us tremedously...It was my dd6's kindergarden teacher who first showed the most concern reguarding her behavior shift. We we seeing some chages at home, but not enough to be really concerned. It was very touching when we met her, and she began to cry...she was very worried, and in her 25 years, said that she hed never seen anything like it. I'm in a bit of a rush...so I can't really add more right now...hang in there...there is a help out there....you may just have to travel. Go to www.pandasnetowrk.org and leave you contact info. read this new thread, I think DCMom and Shaesmom covered almost all of the bases. http://www.latitudes.org/forums/index.php?showtopic=5407 ~Hugs Good luck, Karen

Great explaination...I think I understand it now!

I'm so happy for you...I truly hope this pans out....maybe the tide is really finally turning!

Just a quick poll to see how everyone feels...I'm just curious. Thanks a lot!

We must think so much alike....that is what I have been thinking for weeks now...I'm trying to compose my thoughts a little better to start a new tread about it...

Addi, Again I want to say that I am sorry for your troubles...but you have found the right place. I found this forum two days after meeting with an Infectious Disease specialist at Children's Hospital of Philadelphia. I was beyond frustrated because I had only just heard of PANDAS twenty days before...wasted three weeks to see him, continued to see my dd6 just completely withdrawl. He had the arrogance to tell me that because there was no ticcing, and no real evidence of ocd, and this was her first episode he couldn't really say a yes or no to a PANDAS diagnosis...but if she gets better, and then has another episode, well then he would change his mind...so very generous don't you think? He believed she didn't meet Susan Swedo's critera...that was set up as a guideline for performing a research study...not a definitive diagnostic. Of course, we heard the lecture about how antibiotics can't treat the disease becasue it is believed to by caused by antibodies, IVIG and PEX are so dangerous and not approved for PANDAS and not proven to work at all. He left us no treatment options. He suggested we find a pediatric psychatrist. We saw Dr. Latimer two weeks later and she suggested prednisone. A commonly prescribed medication. After six weeks on the medication (the last three weeks were a very low dose of 5mg/once a day), our daughter was so very, very close to her original baseline that we felt she was recovered. Now two months past that last dose there isn't any trace of PANDAS behaviors, and she started school without any issues. Her teacher, principal and the school counseler were just amazed at her recovery (of course they were just as perplexed by her behavior shift in to begin with) Dr. Latimer's office is just outside of DC in Bethesda, MD. Her office phone number is (301) 530-9200. We live right outside of Reading, PA, and it took about three hours to drive there. She has also put my daughter on 100mg of azith for about three months, and just two weeks ago we switched to pen vk at my request. She had suggested we could do the azith twice a week as a preventative measure for strep. But I wanted to switch to pen vk, and she was perfectly okay with that. I agree with all of the previous posts that IVIG or PEX are probably needed in your case, and the wonderful thing about Dr. Latimer is that she will offer those treatments if she deems them necessary, and she will follow up with the needed antibiotics for prevention of future strep. P.Mom on this forum is from the Pittsburg area, she also takes her children to see Dr. Latimer. One thing to consider with antibiotic choices is that there is a strain (I'm not sure if it is one or more) of strep that has built a resistance to azithromycin (Zithromax) and it is prevelant in your area. Also, I know another post mentioned that you should go to www.pandasnetwork.org -- do that, get on the mailing list. The information and support from Diana P. is invaluable. She is also compiling data and histories, so introduce yourself to her. Good luck...lots of hugs...you have found the the right place. ~Karen

I felt that my daughter's case was also too mild to be news worthy...but in the end when she came back to us, we realized that she was further gone than we thought becasue her symptoms didn't start with a sudden dramatic change....it was a progression. But the important thing to remember about the mild cases is that they prove just how wide a spectrum we are looking at. Could it really be as mild as emotional lability (depression) all the way to the extreme of anorexia/severe ocd? We know about the extreme end...and as parents we are in crisis mode when an episode hits....I thiink the research into weather this can be very mild may have to wait until we can at least get this disorder in the books first. I think this is going to make a real difference in the treatment of mental health overall.

I can't tell how blest I feel that I found this forum and you all pointed me to Dr. Latimer, and she is only 3 hours away....I will be eternally grateful for the legwork that you have all done! Thank you!! I just don't get the antibiotic reluctance either.....anymore...I used to be so anti-antibiotic, and so quick to jump on the "established" medical profession for over prescribing drugs, but so far I've spoken to two other relatives whose lives were saved with steroids. I am currently composing an antibiotic rant to start a new thread, but we've had some real serious issues come up in our house (not PANDAS related) and I have to step up into "crisis mode" for a bit...I probably won't be on the forum as much as I have been.

40 mg/day for three weeks, then 20 mg/day for 10 days, then 5 mg/day for 10 days. My daughter is doing great, thank you, starting at around the second week of the prednisone. Still some minor OCD and anxiety, but a 95% improvement from before. We cannot be entirely sure it was the prednisone that did the trick, though, since the improvement also coincided with the 10th week of SSRI treatment (they say that SSRI's can take up to 12 weeks to have an effect on OCD). But the improvement was quite dramatic, so I tend to credit the prednisone. When our dd finished with the prednisone, she did still have some minor ocd/anxiety and a potty issue....she still continued to improve. My Husband and I believe that not being capable of doing her school work or making her own decisions really made her self esteem take a dive...it just took some weeks for her to feel comfortable again.

I shouted at the tv and called that Dr. a *itch (in front of my boys!)....she was so equivocating!! It's not that complicated to explain, and she wouldn't even give a basic description of the disease... (sigh) It was heartbreaking to actually see footage of Sammy's rituals after reading the book..... But at the same time SO HOPEFUL....what a beautiful boy...Beth must be so proud!

Add to that list Dr. Geller and Dr. Nicolaides!