beeskneesmommy

I had heard that it is a good idea to keep your kiddo isolated from school and other "germy" places for several weeks post IVig. Could he had been infected or exposed to Strep at school, causing this exacerbation? Personally, I would keep him at home and give him a few weeks to slow down, destress and adjust...

Beth will be on The Doctors tomorrow morning helping to make the world aware of PANDAS. Here are the local listings: http://www.thedoctorstv.com/main/local_listings http://www.thedoctorstv.com/main/show_page/D4028

Burnell - is it that they are not prevalent or that they go undiagnosed and untreated. This is an interesting statement and I would like to know more. Can you please site some articles for me? Thanks!

Does you insurance allow you to see specialists out of state? We travel long distances from NC to Philly and CT to see our PANDAS specialists. It sounds like your options are narrow d/t the allergies/reactions to abx. Have you spoken with the neurologist about the joint pain that your son experienced while on steroids? There are further opstions of IVig or plasmapheresis. We never got the help that we needed from the numerous pediatricians that we saw and even a neuropsychiatrist at Duke here in NC was a bust. It is SO important to get to a PANDAS specialist! Your son would benefit greatly from someone who makes it his/her personal and professional business to combat this disorder! Warm wishes and know that you are not alone!! -Kath

I think it is a genetic predisposition to autoimmune disorder. Then, I think that if the Strep is untreated, or treated with ineffective abx, or short runs of abx that are unable to knock out the Strep, the immune system starts to disassociate from the antibodies, causing the antibodies that behave inappropriately to move forward and increase in momentum on their own. I find it is easier to explain to people as in the same "mechanism" as Reumatic Fever, but instead of the antibodies attacking the heart, they go after the basal ganglia.

Ibuprofen for anti-inflammatory qualities. Cease all dyes and preservatives. Start Vite's and Omega's (we give our 5 year old Gummy Bears/Fish). Omega's can decrease tics over time. Push Omega enhanced foods (milk, eggs, etc. and fatty salmon). Can you get your Ped to start Augmentin or even better, a run of Azithromycin? I believe that the abx your kiddo is a Cephelosporin. I think (not sure) that it is a lower level abx, targeting ENT symptoms. It may not be the ticket for PANDAS - I am just speculating - I don't know this - it is certainly better than nothing! My son was on Augmentin when he was really PANDAS affected last year and we gave him a run of Azith right along with it. We go to Dr. B. He is great but unfortunately ovwewhelmed with so many of us with PANDAS kiddos. Keep trying - they do get cancellations occasionally. Call them every day and stress your urgency but try not to lose it with the front desk ladies. They are good eggs but tough, out of necessity!

God help our children! When I read this thread I have such a visceral fear response that I am going to attempt to not visit it anymore. Warm wishes and goodness to you all! -Kath

First signs of Autism start to show up beween 18 months and 3 years. Diagnostic criteria (DSM IV) is as follows: http://www.autreat.com/dsm4-autism.html http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml I truly believe that there are likely many kids with PANDAS out there who are being incorrectly diagnosed with Autism. I believe that there is a strong possibility that at least one of them may have even crossed my desk in the 1990's while I worked as a clinician in an inpatient unit at a children's psychiatric hospital. When my son, who is not Autistic, experienced his acute onset of PANDAS, he went from healthy, typical, age appropriate behavior and highly verbal to being deeply withdrawn, rocking, finger ticcing and a plethora of other symptoms that looked for all the world to me to be severe Autism. Then he came back. That is not Autism. I have a hard time believing that a 5 year old with no previous symptoms on the ASD could "become" Autistic. I do, however, think it is highly possible that a practitioner would diagnose a child this age with Autism if he/she had not known the child prior to the PANDAS onset. I also believe that there is a tendency for many medical and MH practitioners to disbelieve the parents' reports and dismiss them as "wishful thinking" or not being realistic. Basically, there is a trend of over riding parents and insisting upon long term diagnostic history based upon what is currently observed, discounting parents opinions and historical reporting.

T. Mom, good point and please allow to me clarify further. We, too, have had our resources decreased significantly and feel "gyped" out of our kiddo's toddler years. I am extremely grateful that PEX and IVig are available if needed and I feel they are very valuable treatments. Dr. K also told me that he would not do IVig with my son because he was only 4 at the time and he wanted to wait to at least 5. During that period of time in the former part of this year, Dr. K was not skipping over abx quite so quickly and he made the statement "Let's give the abx a chance". In addition, his cross section of stats do not begin until age 5 and for research purposes, this is very understandable. He did tell me, however, that waiting even a few years would NOT change the severity of the condition and that there is no evidence of permanent damage from PANDAS once the IVig has provided a "cure". However, he did say that beyond ages 8-9 seems to make IVig begin to lose its effectiveness. I am able to recall this information quite well due to the careful notes that I took during our phone consult. He also said that there is a very small percentage of kids who get better on abx alone, if caught very early, however very rarely. It may be that his opinion has changed since February of 2011. So, as I mentioned above, we have the luxury of time because my son just turned 5 in September. If he takes a down turn when he is titrated off of these abx in the Spring, we will surely consider PEX 1st & IVig as a second choice. We are chosing to give the long run of abx a chance, as they have been extremely effective. In addition, we have had further testing, which I cannot stress the importance of, and the current abx protocol may be effective for these co-infections that popped up, making it an effective treatment overall. Dr. K is a great guy with his heart in the right place, but the stats he quotes are extremely, unusually optimistic compared to many, many other PANDAS specialists of note. there is no reason not to get a second opinion. We have had 3 PANDAS speciaists are comfortable where we are currently positioned, with Dr. Bouboulis in CT. and Dr. Elia at CHOP on our team as well. I wish you all good things and success in defeating our mutual enemy, PANDAS. Kath

I am going to go out on a limb here and report practically verbatim, some statements made by Dr. K when we had a phone consult last year. Dr. K stated that "statistically", he has an 89% success rate after just ONE round of IVig treatment. When I questioned him further, he stated that these patients did NOT have to return for further treaments. I specifically asked him if this was a CURE, rather than a temporary remission. He stated that it was a CURE. He stated that 12% of his patients needed to return for a 2nd round of IVig. He stated that the section of population that he drew his stats from was 350 of his own patients. I have a background that allows me to understand research methods. I chose to seek treatment elsewhere. We have been very successful with antibiotics alone and, if medical best practices are observed, we choose the lowest level of intervention that is effective, until further evaluation warrants a change in treatment. This is not to say that we would not consider IVig or PEX in the future should the antibiotics lose their effectiveness. But at this time, my son is healthy and practically symptom free. We have this luxury because he is only 5. The choice would weigh more heavily upon us if he were older, as IVig apparently MAY be become less effective for PANDAS as kids get older. In addition, I would not consider IVig or PEX prior to having a full run of tests for co-infections. There are certain antibiotics that treat certain infections and if the infections are present and this is unknown, then the current antibiotic may not be the best for treatment. This happened to us. Now he is on the "correct" antibiotics. He is being treated by Dr. Bouboulis in CT who immediatey ran further tests and is VERY effectively treating my son. I believe that Dr. K is a caring physician who is working very hard to treat his patients. I just feel that attempting lower levels of intervention are warranted prior to going to IVig, and that full testing for co-infections is absolutely necessary. In addition, self reports from patients and their families appear to contradict the optimistic stats that were reported to me.

My DS 5 started Augmentin BID upon his 4th birthday Sept., 2010. He D/C'd that and immediately started Cefdinir Jan., 2011. He D/C'd that and immediatelt started Augmentin XR BID and Azithromax 1 x D July, 2011 and continues on this at present. he has recently had a full chem screen and his liver and everything else is fine. We will continue to test every 3 months. I give him chewable probiotics: "Yum Yum Dophulous" from Whole Foods daily, at least 2 hours apart from antibiotics. My son got Strep right thru the Augmentin, as evidenced by elevated titers after several months of taking it. He also got walking pneumonia w/Mycoplasma while on Augmentin. He did very well on Cefdinir but still caught his share of bugs, although not Strep and his titers went way down by late May 2011. He started the most recent protocol in July, and we are heading straight into flu/Strep season, so time will tell. So far so good. -Kath

NO! You are not crazy for considering this!!! Your "otherwise normal" child sound like she has PANDAS. My opinion is not difinitive and I am not a Dr. However, we have been in this place of utter normalcy, and extreme changes over night. Below are some links that will give you some reference to consider. We see Dr. Bouboulis, and we are apparently rare and lucky to have recovered to this extent. But if anything, give him a try because he is a no-nonsense, deep digging, excellent doc. Best wishes, Kath http://pandasnetwork.org/ http://www.advanced-allergy.com/

Yay! You are doing a great job of acting quickly and choosing good, solid docs for your kiddo. Keep fighting the good fight and know that we are in your corner! -Kath:)

How about calling the office and booking a phone consult? Is there no receptionist or nurse that takes care of appts.?

that's it! Sometimes you just need a little push up that hill! warm wishes and best to you and your family! -Kath

It seems as if you want/need to move fast. As you know, it can take up to 2 months to get in w/ a PANDAS specialist. Afain, I highly recommend Dr. Bouboulis because he is thorough, digs deep with additional testing, and he treats aggressively with reason. He immediately put our son on a combo of abx that are working for him. I would advise making an appt. right away and if you find someone you like closer, cancel it. That way you at least are not pushing it further down the road and have a speiciats visit plan in place. Kath

How about running over to CT (Darien and Stamford) for Dr. Denis Bouboulis. We are seeing the longest and most effective recovery in 2.5 years with abx alone. I cannot sing his praises more - he is no nonsense, gets down to business, digs deep for any possible co-infections and our interactions afford me some respect. In addition, he has been instrumental in restoring my beautiful little boy back into my arms, healthy, happy and practically symptom free for 3 months.

My son is doing extremely well on a combo of Azith and Augmentin. However, he has co-infections. What strikes me strongly is your deperssion. This is SO hard and I have been in places of anxiety and fear that made me feel like I was toppling over the edge at times. You may want to take the time to visit your doc and see if you can get some help with an SSRI (for you) to help boost you up out of the depression symptoms. You are going to be much better for your kiddos if you are feeling in control, yourself. I know it's hard, and I certainly don't do the best job of taking my own advice, but try to make some time for yourself to recharge...take care and warm wishes, Kath

I think it is age appropriate to have some set backs re: separation at that age. School just started, she has been ill (and perhaps at home and pampered by her mom during that illness). Lots of new things are happening in her independent life at school and age 6 is when social interactions start to rev up. It's diligent to remind other parents of PANDAS, but until further symptoms arrive other than separation anxiety, I wouldn't jump to the PANDAS conclusion. It's diligent to inform other parents of PANDAS, but I think we need to be careful to stay credible as well. Now that thay have been made aware, they can continue to be watchful in case further symptoms appear.

I cannot really answer you for your situation, but I can tell you what we have done. When I say "chem panel", I am referring specifically to the check on organs that may be affected by long term abx use (liver enzymes, etc.). A precaution and they were all negative. In terms of co-infections, sounds like you have already found Lyme and I do not know if further investigation is necessary, especially if you are seeing positive results from the abx treaments. I can tell you that our specialist ran labs for Babesia, Bartonella, Lyme, Mycoplasma and, of course, Strep titers. Warm wishes toward the recovery of your son! -Kath

Thank you for your responses! It seems like it may have something to do with either the abx treatment of, or the Bart, or both. I really appreciate all of your feedback! Well wishes toward recovery to all.

He had a full chem panel a couple of weeks ago - everything normal. Otherwise a very healthy boy except for a constant congestion which everyone calls allergies (has been going on for years, waxing and waning). He is not + for Babesia but + for Myco (igg) and on a lower level for Bart and Lyme (both igg)...

Those of you that have recently read my posts know that my DS5 has been recovering well on a big gun cocktail of daily abx. Recently, over the past 3-4 weeks, he has been sweating profusely at night. I just moved him to my bed because I checked on him and his pajamas and sheets were soaked. This usually does not repeat again during the night but it is concerning as it is not hot here an he sleeps in minimal cotton pajamas. He just had a chem screen and liver and everything else is doing fine. Could this be toxins exiting, like a kind of herxing? Could this just be typical 5 year old boy stuff? He is my only one - I have no point of reference. I am kind of worried bacsues it is some serious sweat! Any ideas?

These are the referrals that i have for PANDAS docs in CA. This was sent ot me 1 year ago by Beth maloney. Hopefully there are more and this will be a good place to start. Perhaps they can refer you to further assistance as well: Thomas Lin, MD Irvine Kids` MD 4634 Barranca Parkway Irvine, CA 92604 Telephone: 949-681-0777 Fax: 949-654-7668 Email: autismmd@cox.net Website: www.irvinekidsmd.com Gerald Maguire UC Irvine Medical Center Bldg 3 - Rt88 Irvine, CA 92697 Phone: (714) 456-5770 Fax: (714) 456-8499 Email: gamaguir@uci.edu Jonathan Auth, MD Valencia Pediatric Associates 27867 Smyth Drive #100 Valencia, CA 91355 (661) 294-2229 Office (661) 294-8399 Fax info@valpeds.com Center for Cognitive Behavioral Therapy Barbara Zebb, Ph.D. 27401 Los Altos, Suite 275 Mission Viejo, CA 92691 Phone: 949-226-9626 Toll free phone and fax: 877-230-5429 Website: www.drzebb.com Dr. Harry Pellman Edinger Medical Group Fountain Valley/Huntington Beach, CA 714-965-2500 The following three doctors all worked together and saved a child. Dr. Christina Friar, child psychiatrist 4851 Enfield Ave. Encino, CA 91316 (818) 708-2575 Dr. Kenneth Keer, pediatrician 5525 Etiwanda #212 Tarzana, CA 91356 (818) 91356 Dr. Joan Browner, clinical psychologist 17547 Ventura Blvd. Suite 310 Encino, CA 91316 (818) 995-0368

Thank you JJ and Philamom! I wish great things for all of the parents and kiddos on this forum! I believe that we have unlocked something, despite what some naysayers feel compelled to write to me. I have to trust in Dr. B when he is telling me that he has had other patients who have recovered on abx alone. He is very optimistic and I am inclined to follow his lead. Life is very short and I missed much joy in losing most of my only child's happy toddler years. I intend to go for it and try to make up for lost time. It does not help me, my son or my family to live life waiting for the other shoe to drop. I hope with all of my heart that this truly is the end of it. If it is not, I will manage that incredible pain and loss when the time comes, but not now. Wishing you all good stuff! -Kath