Jump to content
ACN Latitudes Forums

PANDAS 8 years later UPDATE

Recommended Posts

Hi to All,


I have thought often of everyone on this forum and have let the years slip away and my visits here have been infrequent.


As I was browsing through the posts this evening, my heart beat a bit faster as I remember the struggles we had years ago with our son.


In the last few years the business of our life just completely took over and it was easy to drift away, especially as Kurt has done so well over the last few years and the birth of our 4th child in 2005 took away any "time" I had previously.


I am sure buried in posts long forgotten are my posts about PANDAS. It is a long story and my memory of it all has faded over the past few years.


My son was diagnosed with PANDAS in 2002. His tics were severe with a neck tic being probably the worst one which at times were so severe Kurt would cry and cry to make it stop. His tics were unrelenting. Oh see, now I am getting tears in my eyes as I remember the little guy he was.


I think as my youngest boy turns 5 in June, I look at him and I literally can't believe how "little" Kurt was when all of this started for him!


Kurt is turning 14 in a few weeks and has been on azithromycin once a week for about the last 6 years (it is hard to remember exact numbers!)


It has been at least 3 years since I have noticed really any tics at all that I can remember. We have tried stopping the azithromycin but have restarted it again because he just seems more "settled" on it. Without the azithromycin he is just a bit more tempermental and I suspect if I left him off long enough he would have some tics. Either way our plan is to keep him on the azithromycin until he is 18 years old.


And "yes" if you are wondering we do have a wonderful doctor but believe me it was a long process to get him on the azithromycin.


He is doing amazingly well. He does have learning disabilities which are our biggest challenge now but he is in an amazing school called "Arrowsmith" and if you google it, it is a school that believes in "fixing" the ld's by doing repetitive cognitive brain exercises and creating new pathways in the brain based on neuroplascitiy of the brain. He is just about done his second year and has one more to go after this year.

He had made more progress in one year last year than he has in the previous six years combined and believe me in those six years we tried everything possible!


I am quite "out of the loop" in terms of "where" the PANDAS research is at. When we started on this journey PANDAS was hardly a blip on anyone's radar, at least now I suspect most doctor's have at least heard of it which was NOT the case in 2001/02!


My best to all of the parents struggling. I have found over the years that all of the things I worried about so much never actually happened and it was maybe the things I never thought about that actually posed the challenge!


My best advice would be to take it one day at a time! My son is a happy, healthy, delightfull young man that I am enormously proud of! He has a lot of friends, girls are always sending him messages on facebook, he is determined and hard working. He loves sports and is very healthy and fit. Life is still a challenge at times but it is manageable and time was the best healer of all and I do think he has "outgrown" most of the difficulties that arose with PANDAS.


Take Care,


Link to comment
Share on other sites

Ronna, thank you so much for coming and updating us on your son and how well he is doing. It literally brought tears to my eyes. You have done a great job and I am so very happy to hear some good news about the future of our kids!!


Unfortunately so many doc's today still don't know about pandas but I imagine more do than when you were dealing with it! I just wish it were more!


The best part of your post for me was hearing that the memories are fading for you. That is such a positive statement!!



Link to comment
Share on other sites

Ronna - I remember you and your son from 2002 - the year my son (also 14 now) was diagnosed and there were like 5 of us on this forum it seemed. Wish I could say the older years have gone as well for my son but were getting there slowly but surely. So glad to hear Kurt is doing well - that made my morning!

Link to comment
Share on other sites

((((((((((((((((((((Ronna)))))))))))))))))))) :wub:


how wonderful to hear from you and especially the encouraging news!


I have thought of you often and how you truly were one of the original pioneers for PANDAS here


love and blessings to you and your family :)

Link to comment
Share on other sites

I remember you and your son from the forum in 2002 when there were only like five of us on here! So glad to hear things are going well for you. Wish I could say it has been smooth sailing for us, bur we never got the prophylactic abx and all ###### broke loose after vaccines were given in 2007. The PANDAs research is like a goldmine now compared to back then, and I remain hopeful we're on the right track. Hope we can be back years from now giving a good update in a few years as well. Thanks for checking in here!

Link to comment
Share on other sites

Thanks for a terrific story with a long-term outlook! It's good to hear another realistic but hopeful and successful outcome, especially for relative "newbies" like my family.


All the best to you and your family. May the string of successes continue on and on and on and on and on . . . . . :angry:

Link to comment
Share on other sites

Thank you to all of the "oldies" that remember me and to the "newer" posters who were so nice to post!


To answer a question about the Arrowsmith School, all of the schools locations in Canada and the USA are listed on the website. I linked the page with a lot of info: and articles about Arrowsmith. We are in Saskatchewan.




I will try and pop in more often, I simply cannot believe how busy this forum is...oh my gosh, no kidding, PANDAS mom's were very few and far between 10 years ago, not to mention the information...


I have taken my "online" self and become very active in the community and I sit on the board of the Learning Disabilities Association of Saskatchewan, and I am involved with the United Way and I am an impact speaker for the United Ways WorkPlace Campaign.


I thought I would post my speech below for those that may be interested.





On behalf of the United Way and The Learning Disabilities Association of Saskatchewan, thank you for giving me the chance to talk to you today.

My name is Ronna S. and I am on the board of director’s of the Learning Disabilities Association of Saskatchewan (who I will refer to as LDAS as I only have 10 minutes to speak to you!), but most importantly I am the mom of a wonderful, 13 year old boy, Kurt, who has severe learning disabilities.

Today I would like to speak to you about why I think it is important to support the United Way of Saskatoon, who provides funding to LDAS and many other wonderful organizations in Saskatoon and area.

I would like to read to you a letter I wrote to the United Way last spring and another letter I wrote to LDAS in June.

Dear United Way of Saskatoon & Area Board of Directors,

I am writing on behalf of my 13 year old son, Kurt, and our family to express our sincerest appreciation for the United Way’s contribution to the Learning Disabilities Association of Saskatchewan (LDAS).

Our son was diagnosed eight years ago at the age of five years old with severe learning disabilities, some of which include an auditory and visual processing disability, difficulties with short term memory, difficulties with expressive and receptive language and dyslexia (which is difficulties with reading) and dyscalculia (which is difficulties with math). We became involved with LDAS four years ago when my son began the ABSee Reading program and private one-to-one intensive tutoring, progressing to FastForWord in 2007, and in 2008/2009/2010 the Arrowsmith School which he attends for half days in the morning.

It is through the support of the United Way that LDAS is able to continue to strengthen existing programs such as the ABSee Reading program, Summer Sunshine Day Camp, Adult Upgrading/ and G.E.D. preparation and testing and develop new and innovative programs such as the Arrowsmith School, A.D.D. Coaching, FastForWord and Screening for Success.

My son has had an exceptionally good year in the Arrowsmith School thanks to all of the dedicated and professional staff at LDAS. I believe the United Way and LDAS are positive partners in helping to improve lives and build strong communities for the learning disabled children, adolescents, adults and families of Saskatoon and area. Thank you for your combined efforts in assuring quality programs for those with learning disabilities in Saskatchewan



One year ago LDAS brought to Saskatoon the Arrowsmith School. It is one of the most promising programs in the world for children with Learning Disabilities.

The goal of the Arrowsmith Program is to help students strengthen the weak cognitive capacities underlying their learning dysfunctions and to enable them to become effective, confident and self-directed learners for life.

The Arrowsmith School has schools in Toronto, Vancouver and throughout the United States and now Saskatoon. Two recent documentaries on CBC include “The Brain That Changes Itself” with David Suzuki on CBC’s the Nature of Things and CBC, “The Lens” has also done a documentary on the Arrowsmith School’s in the last year.

We are very fortunate to have an Arrowsmith School in Saskatoon and it has enabled our family to remain together in Saskatoon rather than travel to Toronto so that my son can benefit from this program.

My letter in June of this year to LDAS and Arrowsmith is as follows...

Dear Arrowsmith School, June 20th, 2009


Thank you so much for your hard work this year with Kurt!


We are so pleased that Kurt is improving academically, but it is the

increased confidence, self esteem and having a better understanding of

himself and the world around him that we have really noticed as a result of

Kurt's first year in the Arrowsmith School.


At the start of this year Kurt was still basically a non-reader and math was nearly impossible for him.

Kurt is a thoughtful boy but often made bad decisions

because he simply couldn't think through the consequences. He hated getting

into trouble and every time he was extremely remorseful. He hated his brain and himself at times. But his

difficulties continued, despite years of tutoring, and positive support both

at home and in the school system.


Our school system has been incredibly supportive, and we did not come to the

Arrowsmith School because we were unhappy with our school but because we knew that Kurt needed more intensive help which could be provided by the Arrowsmtith School.


Kurt started Arrowsmith in September a year ago and we have

noticed a marked difference in his behaviour. Academically things had

improved. Kurt was easier to talk to, kinder, not nearly as frustrated.

Now we see changes in Kurt almost weekly. Kurt has become a

more thoughtful big brother and leader in our family. He is responsible and

confident in his abilities and is able to responsibly baby sit his siblings if needed.


I recently had a meeting with his grade seven teacher

and the learning assistance teacher who both know Kurt well and they stated

he is working much more independently, and is consistently showing an

improvement in attention. Kurt independently

transitions between subjects and activities by replacing and readying

materials as needed. He has shown significant improvement in reading,

written assignments and math.


If you asked Kurt how Arrowsmith has impacted his life he would tell you

about all the things that are important to him: being able to type and

communicate effectively on MSN and Facebook (although on these sites being a good speller does not seem to be a priority!); he has improved at team sports like football; he is a show lots of improvement at guitar and is more comfortable reading "chapter books" and comics!

The change in Kurt has been a blessing and has given us all hope for Kurt's

future! We look forward to continuing to work together with the Arrowsmith

School next year!


Finally, I would like to tell you about the first book Kurt read independently this past spring.

Kurt is a good looking, nice boy who likes girls and they like him, but I had noticed that when girl’s talked to him he looked like a deer caught in the headlights.

…maybe some of you remember being a 13 years old and can relate!

Well, I was walking through Wal-mart and I saw a book called, “How To Talk to Girls”. My first reaction was to wonder how I would ever be able to read this book to him because it is one thing to read Goosebumps books, but I was pretty sure the last thing a 13 year old boy would want is his mom or dad reading him a book on talking to girls.

His reading had improved tremendously in the last year so I gave him the book and told him to ask me if he needed any help reading it.

Well, about a week or so went by and I asked Kurt if he had read the book.

He looked at me and said, “Mom I read it 3 times!”

Great, I thought, but did he understand what he had read? So I asked him to tell me 2 things he had learned from the book…

And he said…

1. Don’t act all hyper when you are talking to a girl, like you just ate 3 chocolate bars.

2. Just keep asking a girl questions, like “what movie do you like” and she will do ALL the talking.

Well that is good advice that should last him at least through high school if not his whole life! We are tremendously happy to call Kurt a READER now!

If you would like more information about LDAS or Arrowsmith you can check out their websites.

In closing,

I would like to encourage you to join our family in supporting the United Way who provide direct funding to many wonderful, deserving organizations like the Learning Disabilities Association of Saskatchewan.

Thank you to the United Way and to all of you for taking the time to listen to me today!


Finally I will leave you with a short story that gave me comfort many years ago...






Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Edited by Ronnas
Link to comment
Share on other sites

Hello My Canadian friend,

so glad your son is doing so well, Anthony is doing much better since we talked over a year and half ago--We did see Dr. Singer but have Dr. Latimer as ANthony's doctor -they were two completely doctors just like I thought but it was good to see both, I do appreciate you talking to me when things were so bad.



Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Create New...