KaraM

I breastfed by PANDAS daughter exclusively for first 3 months, then gradually supplemented with formula. I weaned her at 18 months because I had walking pneumonia and was simply exhausted. I've wondered about whether this exposure might have contibuted to her issues, but her mycoplama pneumonia test results were negative.

I have goosebumps on my arms and legs and tears in my eyes. This is just awesome. Thank you so much for initiating and leading this effort, Kelly. I can't wait to see you on t.v.! Kara

Our dd8 weighs about 65lbs. Our pediatrician put her at 350mg of Zithromax for 5 days, then 175mg until we could see a specialist (which wasn't for 2 more months). When we finally saw Dr. Bouboulis at the beginning of June, he increased her to 350 mg for a month. Then, after that, decreased her dose to about 200 mg. He wants her to stay on this through the winter (unless she has an exacerbation and we have to do something else). So that will all at up to about a year (at a minimum). She's about 90% back to her old self. Kara

HI, I'm sorry to hear what you are going through, but glad you found this group. I'm not well versed on the tic side of PANDAS, my daughter has OCD symptoms. Did you notice at all whether things improved when your son was treated with antibiotics? As for the recent negative strep test, I wouldn't put much stock in it. Your son has clearly had it in the past and sometimes throat cultures come back false negative (or the swab that was done was did not get a good enough sample). And PANDAS children often react to any immune challenge - not just strep - after the initial infection. Have you looked at the "helpful threads" at the top of this forum? There is a great Question and Answers Document that might help answer a lot of questions. Although there is not yet a formal, official way to diagnose and treat PANDAS, generally the parents on this forum proceed with some form of antibiotics, possibly steroids (to help diagnose and calm things down in the short term - although this may not be the best for all kids - see the Q&A), IVIG and/or plasmapherisis are also treatments that many people are trying. Every child is different and treatment can vary. There is hope. Many children have had PANDAS for several years and are recovering or have recovered. If you can afford it ($400), you may want to consider participating in Dr. Cunningham's study as well. Having the results can make a huge difference in helping determine whether your child has PANDAS. That is also discussed on the Q&A. Best wishes, Kara

I can't comment on the IVIG, since we've only been doing abx. But you may be surprised at how much she has actually taken in, but just can't show in any way right now. My then 7 now 8 year old daughter, who has always done well at math, started struggling (not a lot, but clearly was not grasping things as easily as pre-PANDAS). But as she's been recovering, she is better able to show what she knows. She had plateaud in reading as well and jumped a couple of levels after starting abx. I've heard similar comments from other parents, too. For example, children who were struggling to learn to read in K/1 during exacerbation make huge leaps once PANDAS starts to come under control. Hang in there... Kara

Couple of things - Love the poem - forgot to mention that, earlier. Stuff like that could go directly in personal stories - or we could have a section for poetry, inspirational quotes, etc... I know on many sleepless nights I would often recite the Serenity Prayer to myself (over and over) - even though, as I said in another post, I don't qualify as "the biggest believer." (For those who don't know that one, it's "(God), grant me the Serenity to accept the things I can not change; the Courage to change the things I can and the Wisdom to know the difference.") As for the book format, cost, etc. My personal goals for creating this are to provide education/support for other parents (as well as docs, therapists) who think their child may have PANDAS and to create funds for the Cunningham test for people who can't afford it. Someone else mentioned it above, but I would not want someone to be unable to get the book because they couldn't afford it either. I know I sometimes waver about buying books that I'm unsure of, haven't seen. ( I took Saving Sammy out of the library several months ago to read before buying and just bought a copy the other day to re-read and to have on hand to lend out to others...). What about the idea of having it in a downloadable format and a "suggested donation amount," but really make it available to anyone who needs it. There is some talk above, too about a website. I wonder whether it makes sense to have another PANDAS website or to try to collaborate with one that already exists. I have to say I really like the way PANDAS REsource Network website is coming along. Dr. C. is on the medical board of advisors there (so not sure if that's a conflict or not..). Maybe we could talk to them about it. (They also have a "share your story" section, but I don't see any stories, yet). If we made a book with a collection, perhaps it could be part of this website, downloadable with a suggestion contribution, with all contributions going to help fund Dr. C tests for those who can't afford. Gotta go, kids waking up... Kara

...forget the online book idea...let's raise money for Dr C by selling "Buster Rocks" bumper stickers... Ha! I love it!

Only two groups get that grant!

I'm Extactic!

I've been sitting back watching the replies and taking all the wonderful suggestions and ideas. I agree, that the stories are all here, but to be honest with you, digging through all the posts, pulling it all together and writing a book is just something I could never accomplish. Here is what I'm thinking: Each person writes their child's/personal story. They could follow a template such as the following, or, if it's easier, write in a way they feel best fits their situation: 1. Beforehand/Background 2. Onset 3. Diagnosis/Misdiagnosis 4. Treatement Path 5. Recovery/Remission/Cure 6. Flare Up/Exacerbation (repeat of any of above as needed) 7. Where we are today 8. Other thoughts 9. Doctors who helped 10. appendices with picutures, handwriting samples, etc (if not included write in story) We could also have at the top of each page information about the child, such as: Age of onset Age of diagnosis Age or recovery/remission And a list of major/minor symptoms experienced/exhibited Somewhere in the book, there could also be an index or chart with the symptoms experienced and the page of the story for children experiencing those symptoms. In addition to the stories, we could also have other sections as well, including resources, etc. Again, these are just thoughts. Like I said, I could never write a book, but I think I could pull a collection together with the caveat that my daughter does not go into exacerbation. Kara

I never saw that one either. When did it go up? I just checked out her links. Could you suggest she add a link to this forum and to the OCD and Parenting group? (I guess I could, but since you have a dialog going already it may work better.)

Any way to have a teleconference? I don't know anything about Skype. Can it handle groups?

While it's not a study, the FAQ that is under the helpful threads at the top of the forum was what I brought to our pediatrician, who was also skeptical. You can also find it at www.pandasresourcenetwork.org Our doc found the document very "well written and reasonable." Have you considered participating in Dr. Cunningham's study? That's a two to three week process and cost $400. But if you can swing it, the results are very valuable. Those results along with the FAQ are what allowed our doctor to take the next step in prescribing abx prophylacticallly. Kara

OK Emerson,I did it: Thanks for motiviating me...this is what I sent. In December 2009, at seven years old, my daughter was diagnosed with Obsessive Compulsive Disorder. One symptom of OCD I am now realizing she had (and sometimes still has) was a need to collect papers, newspaper flyers and coupons. For her (albeit not for all), this symptom was minor in comparison to many of the other symptoms she experienced, primarily due to her fear of germs and contamination. Those fears eventually interfered with her ability to function normally: at her worst she was unable to put clothing on; unable to go to school, unable to eat food from the refrigerator; unable to enter or exit the house from any door but the basement; unable to walk or drive down the streets leading to our home; unable to sleep in her bed (or any bed in the house) and unable to be touched, helped or hugged by either me or her father. My daughter's OCD and fears developed over the course of a few months. Prior to the fall of 2009, she was a normal, healthy child. By December 2009, in addition to germ contamination fears, she was also experiencing extreme mood changes, irritability, rages, depression, as well as ADHD like behaviors at home and school. Through the help and encouragement of people on the OCD and Parenting and on the Latitudes online support groups we decided to have our daughter blood tested for Strep. We also sent her blood to be included in a study being conducted by Dr. Madeleine Cunningham at the University of Oklahoma. The results from both of these tests indicated that our daughter in all likelihood has PANDAS (Pediatric Autoimmune Disorder Associated with Strep). Since we got those results, our daughter has been on prophylactic antibiotics. I am happy to report that her symptoms have dramatically improved. She fluctuates between 80 and 90% better. She gets dressed, goes to school, eats food from the fridge, uses all the doors in the house, drives and walks up and down all the streets in our neighborhood, sleeps in her bed, sits in her parent's laps and hugs us many times a day. Unfortunately, most doctors do not have a solid understanding of what PANDAS is. They have either never heard of it, don't believe it exists or use outdated and/or incomplete information in determining whether their patients have PANDAS. Instead, they very willingly write prescriptions for psychotropic drugs such as Celexa, Zoloft or Prozac; drugs that may actually make things for a PANDAS child worse. There needs to be more research, education and communication about PANDAS. I hope TIME considers publishing an article on such a worthy topic. Sincerely,Kara McLaughlinSalem, MA

The wait is killing me...I keep checking - no news...

My heart is soaring along with the vision of her up there in the sky (even though I haven't ever actually seen her). Beautiful. Kara

Emerson, You are an inspriation. I'll send my letter. Kara

You know, I'd be happy to collect the stories and put them into one file, maybe even organize them somehow by major symptoms with a table of contents so similar stories are together and easy to find. However, I think it might to have some sort of template/formula for telling our stories (then again, maybe they are all too different to do that). What do people think? Any writers out there that could provide a little guidance about the best way to write a story? Should I even care about that. I'm not sure publishing a hard cover or paper back book would be the best way to go - only due to cost considerations. But perhaps we could put a pdf file on a site to download for a certain price... any other thoughts/ideas?

[1...do you have to treat this stress esasperaton the same as others..abx..ivig?? can a steriod taper bring it down?? Dr. Leckman did not say and I did not think to ask. It seems like an obvious question, now. 2..we just started to have a little bed wetting, but waking up...but add vanco...we are have a weird coincidne..more later...does anyone know what the other thing was with tics.. I'm sorry I don't remember. I emailed the OCF and they are emailing presenters that have not yet given their slides. I will keep checking to see if he sends his in. 3 VERY CURIOS...again maybe my path is being laid out for my......for ticcers....PEX (solely)may be the only thing needed...is that was doc k was suggesting!!!.. I'm sorry again. But I believe I heard Dr. B. say something similar when we met with him. If I remember correctly, he also believes IVIG is preferable to PEX except for rare, extreme tic cases (can't be positive - probably shouldn't even write it down - but I think it is worth following up with either him or Dr. K if you can). 4...ds is almost 10 1/2..so does that mean he is over 10 or is that like a teeter point? Dr. K definitely said that there is still success with children over 10 - just not as much as with children under 10. So please don't be discouraged. Also, in our appointment with Dr. B, he said he even treats adults that are now discovering they contracted PANDAS as children....so clearly there is hope... Thank you for the info and thank you to anyone who can help fill in these blanks!!!

OK, Vicki (and everyone else), here's a fundraising idea... We could each write our story and create a collection of PANDAS/PITAND stories. We could designate the funds from the proceed to go toward Dr. C. to use to pay for people who can't afford the test. Call me crazy...just a thought.... Kara

Debbie, Have you seen the FAQ on the Helpful Threads at the top of the forum? That has some very helpful info. Another thought is to try a steroid burst (although I'm not sure how that works with Tics...someone else chime in). From what I understand, Dr. K. routinely uses steroid burst as a diganostic tool. Kara

It may help to bring a copy of the FAQ on the helpful threads to your doctor as well as some articles. I also think directing the pediatrician to www.pandasresourcenetwork.org if they don't know about it already. Kara

ACtually, this was something that was mentioned in a few sessions, but I haven't seen anyone write about. Unfortunately, it's a bit discouraging. I heard a few times that ERP is really not that effective for children with PANDAS OCD. If anything, it can help with with coping and re-training the brain as your child begins to recover. That is one way that it differs from typical OCD. For some with nonPANDAS OCD, CBT/ERP can work alone. With PANDAS, won't touch it alone. Did anyone else who attended take that away? [ Also with that being said how does the cbt work if it is based differently, I think this is where we find difficulty.

First of all - congratulations to you and your daughter. How wonderful for you both. Exiting, heartwarmwing, encouraging. On a spiritual note, I can't say I am the biggest "believer" in the world. But we all need to find hope where we can. For me, your words do not offend at all. Thank you for sharing your story. Kara