The last three and a half months have been a journey! And with anything, we owe much to those who walked this path before us. In the spirit of sharing, here are some of the resources our family has found useful! Feel free to add in the comments section and I’ll do an updated post to get all the info in one place.
Ali & family
Books for adults:
- Saving Sammy: Curing the Boy Who Caught OCD by Beth Alison Maloney-this is the story of one boy and his family. The author has done so much for raising awareness and continuing research into this awful disorder. I gave this book to family members to give them some information and context.
- Brain on Fire by Susannah Cahalan-This book is hard to read, but it helped me understand some of my son’s behaviors and to try an understand what he may be going through. It also gave clear explanations of the treatments she took which are the same as PANDAS: antibiotics, steroids, IVIG, and Plasmapheresis.
- Childhood Interrupted: The Complete Guide to PANDAS and PANS by Beth Alison Maloney-so helpful for the practical things you’ll need to get a handle on.
- The Kazdin Method for Parenting the Defiant Child by Alan E. Kazdin-you don’t even want to know how much I paid for this book. Let’s just say, Psychologists aren’t cheap. We started seeing some, who did tell me this is the book that covers the method they would use with our family. I didn’t like the way they treated us or our child so we only saw them a couple of times. I am reading the book and using the method and so far it’s been really helpful. It helps me put a positive spin on our days and notice each improvement, while working on the behavior issues that go along with PANDAS and it gives our son a feeling of control over himself. OCD is all about controlling your fears, so I think that has been really empowering for him.
Books for Children:
I’ve only read the first book. I found the rest from friends on a PANDAS/PANS facebook group and just ordered a bunch. I’ll update the list when we read them. I’m most looking forward to What to do When Your Temper Flares, we still have angry explosions and I think having some tools to handle the emotions will help. I’m hoping, anyway!
- A Child’s Introduction to Understanding PANDAS by Elizabeth Gibbs-This was a good conversation starter with our son who is 7 and for his sister who is almost 5. I think it would be even more helpful with older kids. My son still asks to read this and talks about his PANDAS as we read.
- Mr. Worry: A Story about OCD by Holly L. Niner
- What to Do When Your Temper Flares: A Kid’s Guide to Overcoming Problems With Anger by Dawn Huebner
- Up and Down the Worry Hill: A Children’s Book about Obsessive-Compulsive Disorder and its Treatment by Aureen Pinto
- What to Do When Your Brain Gets Stuck: A Kid’s Guide to Overcoming OCD (What-to-Do Guides for Kids) by Dawn Huebner
- What to Do When You Worry Too Much: A Kid’s Guide to Overcoming Anxiety (What to Do Guides for Kids) by Dawn Huebner
There are many other groups that I haven’t listed, feel free to add them in the comments or email me and I’ll check them out. These are the groups I joined. Most are by invitation, so you message and ask to join. I’m sure there are many families that don’t want to share their struggles publicly and this also creates a safe place to ask for help and share your story.
- “Parents” of Kids with PANDAS/PITAND/PANS–this is a great group that is very supportive and active. HOWEVER, sometimes I get upset reading it, because people’s stories are sad and difficult. So there are times I just stay away because I don’t want to feel others’ pain or worry about something that isn’t even happening to us now.
- Maryland PANDAS Support–This group isn’t very active, but it’s awesome to connect with others that are using the same doctors or aren’t too far away if you need a friend.
- PANDAS/PANS INSTITUTE (run by Dr. Trifiletti)–Dr T posts a lot of information about the latest research. This site is sometimes a bit too technical for me and sometimes it’s too much information as we’re really in the trenches and I can’t always focus on what the big picture of brain function and research is even though I think it could be helpful for some.
- NIMH: PANDAS: Frequently Asked Questions about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
- PANDAS Network
You Tube Videos:
- New England PANS/PANDAS Association–Excellent presentations from the country’s leading PANDAS/PANS doctors.
- Mystery Illness is Called PANDAS–One brave child, mother, and family share their story.
*Disclosure: There are lots of links in this post and many to Amazon, I have no relationship with Amazon or the authors/publishers of any of the books included in this post.