TiredMom

Quick question: my daughter just finished HDIVIG on Wednesday night. Seemed to do very well side effects wise, mostly general aches and pains. Then last night she started to get stomach pain. We knew nausea was possible. I'm giving her Zofran every 6 hours, it helps some, but not 100%. She's miserable. Seems the nausea subsides, but there is residual abdominal pain. I have calls in to our doctors, but I'm wondering if anyone had a similar reaction/advice. Thank you.

Wisdom_seeker - is there anything noteworthy you can share on IVIG Protocols? This is super timely for us, too. Dr is trying to set up HDIVIG, but spread over 4 days instead of 2. I'm a little worried, since I don't know what the precedent is for this, and I'm also worried the body might see it as a low dose IVIG, which I understand can cause problems. I'd be grateful for anything you can share. Thank you!

Here is a bit more about akinetopsia. http://psychology.wikia.com/wiki/Akinetopsia

I'm not sure if this article describes what he's experiencing. It briefly mentions strokes and epilepsy: http://brainblogger.com/2014/10/09/brain-trickery-seeing-in-slow-motion/

Two things that have helped us when in this same situation is Motrin, given at full dose for several days, and also restricting electronic screen time (computers, cell phones, tablets). The blue light that is emitted can really disturb your sleep patterns. I hope she (and you) gets some relief soon.

"I contact NIMH about PANDAS doctors in the bay area and I received a call back from someone who works with Dr. Swedo. She gave me the name Dr. Charlotte Hamilton MD @ 900 Welch Rd. in Palo Alto (tel# 650-321-5321). I was told she is a PANDAS expert who worked with Dr. Swedo at NIMH. Has anyone heard of her? Andrea" Hi Andrea, I just got off the phone with Diana. She strongly recommends Margo Thienemann, as do I, for our PANDAS children. She shares office space with Charlotte, but has more current experience with PANDAS. Her number is 1 650 324 3241. Abby answers her messages. Tell Abby your child has PANDAS, and you will get an appointment right away. Best wishes - Peggy

FYI Parents, A while back I had posted that PANDAS information had been taken off of the revised OCD Foundation Website. Laura had a contact person that worked closely with this organization, and confirmed fo us that they were upgrading the website in stages and that PANDAS information would be forthcoming in the next phase. We were all encouraged at the time to contact the website with our input/concerns. I am posting below the response I received today - it looks good. I'm thinking they should get a look at the great FAQ and NIMH proposal Buster has put together... -Peggy --------------- Peggy, I agree with everything you said below. We believe it is important to get information about PANDAS out there! As you know there is a lot of contradictory information out there about PANDAS. I am currently in a discussion amongst members of our Scientific Advisory Board and parents of PANDAS diagnosed children about what information is going to be the best to get out there. Evelyn Stewart - a pediatric OCD researcher and therapist - is currently spear heading the writing of this information. She holds appointments Massachusetts General Hospital, McLean Hospital and Harvard Medical School. She works closely with Dan Gheller and Michael Jenike. She is the chair of the Pediatric OCD Committee on our Scientific Advisory Board which also includes individuals like Aureen Wagner and Fred Penzel who are very senior in the field. I am confident that when information about PANDAS goes up on the website that it will be clearly thought out and based on the most recent research. Thank you for your feedback. Please let us know your thoughts as we continue to add information about PANDAS to the website. Jeff Szymanski, Ph.D. Executive Director International OCD Foundation Phone: 617-973-5801 Fax: 617-973-5803 email: jszymanski@ocfoundation.org www.ocfoundation.org

God bless you, Dr. Trifiletti! Thanks for getting the word out, and thanks for keeping us informed. Break a leg ;-) Peggy

"A revised version, see what you think... " Way to go, Buster, this is beautiful.

Hi Buster, I know one of us posted that she "felt like a wiseguy" calling you Buster. I prefer to think of you as a MYTH BUSTER :-) You're suggestions for the website look fantastic! Just a thought, I'd be tempted to add anorexia in the symptoms part. What say you? Peggy

Laura, That's great that you know someone connected with the organization who may know if eliminating references to PANDAS was a deliberate decision, or an oversight of some kind. Seems like odd timing to drop references to PANDAS when there's been so much activity in the media recently, like the sneezing girl, and Saving Sammy, the Boy Who Caught OCD, not to mention things like Columbia reproducing PANDAS in mice. Seems even more odd since they have a section specifically for related diseases that can appear like OCD, covering everything from Aspergers to TS. Peggy

"I am very angered right now." I completely understand the anger. I'd love to know their story for removing PANDAS from their website. This brings to mind a comment Dr. Latimer made to me on a phone consult last month... She said in all her years in medicine, treating a wide variety of conditions, she's never seen a group of parents like the PANDAS parents. Never. She said they are extremely well informed, are determined to cure their children, and DO NOT TAKE "NO" FOR AN ANSWER. What a great compliment you all received from a great lady... Let's see if we can change some minds. Peggy

"Is the OCD website you are refering to the OCFoundation? " Hi Vicki, I did a fast search, and I think it is the same organization. I couldn't find anything on PANDAS, please let me know if I missed something (it wouldn't be the first time I did sent a detailed email to them covering a lot of ground, hopefully they will become more open to getting the word out on PANDAS.

There's a new international OCD website that I just learned about through the OCDparenting yahoo group. I searched, and although they had section on related diseases, I couldn't find any info on PANDAS. I also noticed they give a certain number of grants each year for OCD research. I am going to contact the group, and see if they will add something on PANDAS, and tell them about Cunningham's work (my understanding is that she doesn't have official funding for the new year). Since there is power in numbers, I thought I'd list the website here in case anyone else would like to contact them for the same purpose. Best wishes, Peggy http://www.ocfoundation.org/ index.aspx

"MomMD- It is in the eyes. " Absolutely. All I need to know how my dd is doing PANDAS-wise is to look in her eyes. Her therapist has noticed this, too, and calls it "the look". When they are clear and sparkling, I am at peace. When they get that dark, lost, far away look - well, you all know. Peggy