TiredMom

'If I'm going to inject an neurologically sensitive person with antigen, metals, and other chemicals, I want to know there is a darn good reason for it. I will never forgive myself for allowing the Hep B birth dose and blindly injecting my babies/kids with every stupid thing that was put before me. Sorry, I start out calm and try to be so objective, but I end up angry most times, so I'm going to shut up now!' Hi Kim, I understand completely, I share your views and concerns on this subject. It causes me deep pain that I followed the Pedi's advice, and came to learn that 2 of my daughters vaccines were later recalled... We can't be too careful. I appreciate all the info you posted, and was actually surprised the number of people contracting tetnus each year was so low. Best wishes, Peggy

My 10yr old dd has had the really important vaccines, however I believe she had a bad reaction to the chicken pox vaccine 2 years ago, and I've decided - no more vaccines. However, the only one I'd like to consider is her next tetnus shot. Has anyone come across reactions to that one? Best wishes, Peggy

Great idea. I just gave Oprah my 2 cents. I'd love to see this story get national coverage!

Hi there, Yes, she's still on the Azith, and doing well. She just has this baseline social anxiety that I think is post PANDAS. I'd love to find something to take the edge off, but I wasn't happy with the Zoloft/SSRI. I had high hopes for the inositol, but it really did a number on her GI system (even though we started at a low dose, and increased very slowly). I was hoping someone may have a 5htp success story to share... Or some other non SSRI supplement. Best wishes, Peggy

Hi All, I weaned my daughter off of Zoloft at Christmas after she had been on it for one year. I am now searching for an over the counter remedy for anxiety. I tried a month of inositol, but it caused a tremendous gas problem for my dd, with no signs of slowing down. Needless to say, this was not good for my dd's anxiety level. Wondering if anyone has had luck with 5htp? If so, what doses? I looked in Whole Foods for it yesterday, and only found tablets. My dd can't swallow them yet, so I am wondering if anyone is using another form: chewables, powder, etc. Thanks in advance for any info you may have. -Best wishes, Peggy

My dd was fully recovered from her previous PANDAS episode, when she had a big "ramp" in her PANDAS symptoms this time last year after she contracted Fifth's Disease. I'd say she ramped up to 75% compared to her worst episode, and the symptoms slowly tapered down over a 6-8 week period. I remember emailing Dr. K at that point, and him emailing me back that he had seen this happen before. Hope your dd is feeling better. -Peggy

"My two PANDAS kids (age 10 and 80 pounds; age 8 and 65 pounds) have been doing great on Zithromax. However, the doctor is concerned with using it longterm due to liver damage concerns (and my children will NOT submit to bloodwork to have it checked, they would actually rather die!). " -------- My daughter has been taking Zithro 250mg everyday for 3 months. On one hand, I have seen studies that say it is safe for long term use. On the other hand, I have had Drs. warn me ominously that it is dangerous to take longterm, but I can't seem to get any specifics from them. Is Zithro hard on the liver? Has anyone seen any good studies on this? Dawn, like your kids, I think my DD would rather die than have another blood test, and frankly - I've had enough of the blood test thing myself! So, I understand. Best wishes to you and all of us in navigating the confusion and finding the right meds. for our children. -Peggy

FYI: for anyone who feels media savvy... This was just posted on an OCD support group that I subscribe to... I'm posting it here in case they would explore a PANDAS OCD case? -Peggy --------------------------------------------------------------------------------------------------------------------------------------------------- From: Casting <casting@pinksneaker s.net> Subject: Casting for TLC documentary series on OCD To: ocdandparenting- owner@yahoogroup s.com Date: Sunday, February 22, 2009, 1:05 PM Admin: We are currently looking for participants for TLC's new documentary series tentatively titled, "Life Chronicles." Each topic aims to use the personal stories of people facing exceptional or life-altering circumstances to inspire others. Each episode will cover a different topic. One of those topics will be obsessive-compulsiv e disorder. I was hoping I'd be able to post the following announcement on your group site: ************ ********* ********* ********* ********* ********* ********* ****** Pink Sneakers Productions is currently casting for TLC’s new documentary series tentatively titled, "Life Chronicles". Each episode documents the day-to-day lives of people affected by different life experiences. One of our episodes will focus on obsessive-compulsiv e disorder. We are currently looking for people who have been directly or indirectly (family member of, etc) affected by obsessive-compulsiv e disorder. These are unique and sensitive topics to be covered through a true, documentary style format to inform and educate our viewers while preserving respect for all parties involved. If you, or someone you know may be interested in participating in this project with us and sharing his or her story please contact us at casting@pinksneaker s.net and feel free to check out our website at www.pinksneakers. net. We thank you in advance for sharing your story. ************ ********* ********* ********* ********* ********* ********* ****** Thank you for your help! -Patricia PATRICIA FLOTO PRODUCTION ASSISTANT PINK SNEAKERS PRODUCTIONS 1000 COLOUR PLACE, APOPKA, FLORIDA 32703 P: 407.464.2080 F: 407.464.2081 WWW.PINKSNEAKERS. NET

Hi Amy, I'm with you - I've thought about these questions a great deal over the past months. I like to think I'm smart ;-), but I've often wondered if the reason Dr. K sees these smart moms and dads is because it's not easy finding out about PANDAS. I'd certainly never heard of it before my daughter got sick, my doctors had barely heard of it and never discussed it with us, so if I hadn't been spending hours, days, weeks sifting through research I can barely understand on the internet I still wouldn't know what was wrong with my daughter. I think a parent without internet access and time to research and network would be extremely lucky to find out about PANDAS. There is a lot of anxiety, perfectionism and neat freaks in my family tree. But I have to say, never in my known family history has a child exploded with the symptoms like my daughter did when sick - not even close. Our family is has an extremely high occurance of autoimmune diseases. -Peggy

"Apparently at the DAN! Q and A session (conference a couple of months ago...PeggySue posted a video), Sue Swedo said the PANDAS kids that are treated do well as adults. Those that are not treated, tend to have ongoing problems. (I didn't watch the actual clip yet so I'm not sure if this statement is in it, this info. is from an e-mail I got.) I don't know specifics eg. was "treatment" prophylactic abs, IVIG, or what? " Hi EAMom, I watched the Q&A session, and did not see the reference above where she says how the kids are doing now. From the email I got, I think she must have said this off line when not being filmed. What a shame - it would be so helpful for us to see that information. I had the same questions as you - exactly what "treatment" was she talking about? One thing you will see on the Q&A, which is in direct contrast to her warning in the presentation about IVIG - in the Q&A session she talks about how much safer IVIG is now... I think it would be would be worth it for an army of us parents to attend her next presentation ;-) The DAN! conference schedule can be accessed on the following website, but I don't know which ones she is scheduled to appear. http://www.defeatautismnow.com/ -Peggy

No, I have never heard of it. I googled it quick and saw it's natural antiviral derived from coconut oil? I will try to find more research on this. What source do you use, is this something you can get at whole foods? Thank in advance for any info you have. Thank you for posting this - I appreciate it! Peggy

Hi Pat, Thanks for posting this - this is VERY interesting to me and makes a lot of sense. The last 2 major "PANDAS" episodes for my daughter were caused by viruses. She's on 250 azith everyday, but this doesn't cover her for viruses. An immunologist I saw said the antivirals only protect against a slim margin of the viruses she's likely to get, so I do worry that she's wide open to viruses. We've put a halt on all further immunizations until who knows when.... Peggy

Dr Swedo's Q&A session is now available at: http://www.autism.com/danwebcast/videoflv....=640&VID=95 She shared the stage with another doctor, and really didn't get that much time to speak. Still worth watching. EAMom - "I think Swedo said used only a 1x weekly dose of Azith. (500mg?)." Yes, Swedo said her patients were given Azith 500mg 1x per week. My dd is currently at 250mg daily. She is tolerating it well, and it seemed to eliminate a good deal of anger/tantrum behavior, but we still had big emotional/mood issues. Everything disappeared on a steriod burst - my lovely, happy, funny, laughing joking daugther back.

Hi EAMom, I agree! I also thought it was interesting that Swedo seemed to think IVIG was more risky than plasmapheresis. My DD got a steriod burst over the Christmas break, and responded beautifully. I saw a sunny side of her personality that I thought was gone forever. I'm really agonizing over IVIG - Swedo said two of her patients contracted Hepatitis C. Does anyone have info on how the manufacturers ensure a safe product, and what their track record is? Product recalls? People sickened by the procedure? So, I googled plasmapheresis, which doesn't seem like a stroll in the park either! No easy choices here. I'm keeping the pressure up for the tech people at this website to post Swedo's Q&A. I'll keep everyone posted.

You're welcome! I have several calls in to the people who run the website asking them to please post the Q&A session that followed. I'll let you know if I have any luck. -Peggy

Dr. Swedo's talk from the DAN conference a few months ago is now posted at: http://www.autism.com/danwebcast/videoflv....=720&VID=93 VERY interesting. Unfortunately, they didn't post the question and answer session that followed. -Peggy

My PANDAS dd is on 250mg azith everyday. I understand that probiotics and yogurt are helpful in maintaining a healthy digestive system. However, on a parent support group (I can't find the reference now), some parents have posted that many commercial yogurts contain a strain of strep that is supposedly harmless, but that they believe their PANDAS children react badly to. I just today bought my daughter "Yoplait Thick and Creamy" yogurt. When I read the label it said "With active yogurt cultures, including L. acidopholis". So I called the 1-800 number and asked what else it "includes". They said it also includes Streptococcus thermophilus. Does anyone avoid yogurt for this reason, or know a good brand without it? I can't believe they didn't list it on the ingredients list - that you would have to call and specifically ask to find out... I'd like to know if anyone has an opinion on this. Thanks.

Hi Erica, My 10yr DD has PANDAS. After over a year of searching for a Dr willing to prescribe antibiotics, I suddenly found 2. One prescription is a dosage I see commonly posted here - 250mg per day. The second Dr prescribed 400mg every 3 days - I haven't seen this before. I saw in your post that your DR" He is willing to prescribe 3 months of zithromax (2 times a week for the 3 months)". May I ask what the dosage is? It seems there are options in azith dosage, and I'm wondering what the DRs base this on? Thanks! Peggy

Hi Pat, This is what happens with my dd. Her 3 main epsides of PANDAS/PITAND have ALL been with viruses. I don't know how the antibiotic she's on is supposed to help with this... But, it doesn't seem like all viruses, just ones that cause a fever and swollen glands in her neck. For example, she had a very bad reaction when she got Fifth's disease last March. Which has had me wondering about antivirals, and but my limited understanding is that some longterm antiviral medications can be hard on the body. Peggy

I guess that would depend on whether the strain of strep she gets responds well to augmentin. Dr. K always prescribes it. We've been on it for 2 months. Her ASO titer remains slightly elevated - but not huge (311), but have heard a lot of stories about azithromycin being able to go intracellular and kill the strep that hides in biofilms. Have started zithro for 6 days this morning - but oddly enough she got a little agitated during the day. Not sure if this is what other forum members have been talking about - Many have said that the zith seems to make kids have a "nasty" attitude. Anyway, too early to tell - too late to stop now - don't want to stop the abx before the end of the 6 days now because it could cause more problems if some resistant bacteria remains. After we finish out the course, we'll go back to the augmentin long-term. I have a feeling that her problems are less related to strep right now than viral issues. I will be posting a new thread on PITAND Vs PANDAS. Pat Hi Pat, My 10yr old DD started a 30 day trial of Azith on Nov. 15. The first 2 weeks were an improvment, but I must say she has had some significantly nasty moods recently. This is the first time I have heard that Azith is associated with bad moods. My searches of this website (I'm not that skilled) aren't able to turn anything up. Can you point me to a thread? Has anyone else had this experience with Azith? Thanks! Peggy

Thanks so much for your input. You have certainly have a unique perspective that we are all interested in. I am very much looking forward to hearing from you soon. Thanks again.

I was looking online for a chewable vitamin D supplement for my daughter (she can't swallow pills yet), but with no luck. What brand does your daughter take? Thanks very much!

When my daughter is having a PANDAS episode, she complains frequently of both headaches and stomach aches.

I don't think this is a dumb question. I've had the same train of thought as you. I change my daughter's toothbrush once a month if she's not sick, and also I run it through the santi cycle of my dishwasher as often as I can remember. I change toothbrushes more frequently if she is sick. It can't hurt, just another way of trying to prevent illness.

I believe my dd has signs of dysgraphia. She just completed a comprensive, 3 day neuropsychological/educational battery of tests at CHC. I am very interested to see if if shows up in their results. Peggy