mwmmom

Surfmom -- Thank you for posting this great advice. My daughter is know on her 5 year anniversary too. She was a very, very severe case and is now a fully functioning teenager making great grades, attending camps, worried about friends, and dancing. Please see the post titled "A message of Hope" from August 2012. To all parents in the PANDAS crisis, please remain hopeful!!!! All of our kids deserve to be 100% healthy again.

My daughter just came home with a score of 100 on her math test. She is in 4th grade and doing great! She was totally overtaken by PANS 2 years ago and missed a large part of 2nd grade. Our journey is chronicled in a post titled a Message of Hope on August 28, 2012. Hang in there. You too will have a return of normalcy, but it takes time for our children. I am thankful for normal days and months each year. Please always remember to have HOPE and faith in their recovery!

We went to the Rothman Center last year around holidays. It was an amazing amount of healing and beating back of OCD in a few weeks and I will be forever grateful for their expertise and how they helped my daughter and entire family. I know it is a huge commitment for your entire family but it will be worth it. The homework does pick up after a few days (and over the weeks), but you and your child will have more confidence as the days/weeks progress. It takes a few days/week to see the momentum. We did work with a therapsit when we returned (1x per week for a few weeks and then 2x per month). It was good to have a 3rd party hold DD accountable for homework and provide structure for continued OCD healing. They do have a "tough love approach" at Rothman Center to beating back the OCD that was very, very successful for my daughter. Our local therapist coordinated with Rothman Center once we got home. We worked with the same therpist you have been assigned at the Rothman Center! Good luck!

Yes, my daughter had similar IGGs levels as your son. My daughter did 2 HD IVIGs 8 weeks apart and then we did then more frequently last winter (4 to 6 weeks) to avoid any setbacks and maintain improvements we saw. We also did extensive ERP therapy along with IVIGs (at Rothman center and then locally) as well. She has had 10 IVIGs in the last 18 months.

My DD9 had repeated IVIG (every 8 weeks and then more frequently last winter) to get her back to 100%. It was at the 2 grams/kg dose. We saw steady improvement in her condition after each IVIG. She is under the care of Dr. L. She also has low IGG. The reasoning behind the repeated IVIG was to keep her "extra healthy" (so no back-sliding) during the fall/winter. There was a time last winter and early spring where I wondered if we needed another IVIG, but I am so glad we did. She got better and better with each one all of our children deserve to be 100% back to their old selves! Good luck in your decision!

I have no medical training, but I would answer the question on immune deficiency/PEX like this - Our DD8 had a weakened or deficient immune system. Since PEX "cleanses" the blood, it takes out "good and bad" during the process. If you have a weakened immune system, you may not have enough "good" to tolerate the PEX process. I do not know if there is a specific number which serves as a cut off to rule out PEX. A slow and steady recovery via IVIG treatment was the best option for our DD8. Hope this layman explanation helps.

Thank you for the replies. Yes, my daughter does have some immune deficiency (low Igg). The strategy of multiple IVIGs was to keep her healthy and ensure her immune system was strong last Fall and Winter. Additionally, we saw incremental but very positive improvements following each IVIG. PEX was not recommended for our DD8 due to her weak immune system. Hope this helps and clarifies.

I have visited this forum hundreds of times in the last 18 months and want to THANK YOU ALL. I have gotten so much valuable information that truly changed the outcome for our daughter. I wanted to post all I had learned in our family’s war on PANDAS / PANS. Our DD8 was “officially diagnosed with PANS/PANDAS” in the summer of 2011 and is under the care of Dr. L. Her primary symptom was OCD and by the time of her diagnosis/treatment, she was 100% dysfunctional. She did have other symptoms (age regression, urinary frequency, constant skin infections, among others). Since starting treatment, our happy, functioning, 8 year old has returned. We are so blessed and thankful each day! Top 10 lessons we have learned from this journey: 1. The USF Rothman Center and its physicians are AMAZING! The therapy team’s “tough love approach” was critical to her recovery. We took our DD8 to the Rothman Center a few weeks after her second HD IVIG. She was starting her recovery and receptive to the ERP therapy. I encourage everyone to have a dual approach with medical treatment and behavioral therapy. 2. Dr. L diagnosed and treated our child. DD8 remains under her care coordinating with local physicians. DD8 has received over eight IVIGs since last summer at the 2 grams / 1 kg dose (over 2 days). Each time, we have seen “turning back the pages” for a 6-8 days post IVIG and then steady and noticeable progress after. After each IVIG, the physical side effects and the “turning back the pages” were less severe. DD8 is also on antibiotics daily. Additionally, she had her tonsils and adenoids removed this summer. 3. My daughter never had “positive blood tests”. I have confirmed with multiple national PANDAS/PANS specialists that positive blood tests (Rise in ASO Titers, etc.) are not required for diagnosis (confirmed in white paper released). The PANS diagnosis for our DD8 was a clinical based diagnosis reviewing multiple years of medical and behavioral notes. OCD was rapid onset with each “attack on the immune system” (not just strep) and improved slowly after long term antibiotics. Initially, steroid burst improved her functioning significantly (but usually only well into the 2nd week post initiating the steroids.) The first week of a steroid burst were horrible (i.e. severe OCD on steroids) 4. Keep all your notes and try to assist in creating a detailed summary of medical issues/behavior/pharmaceuticals. I got a print out from pharmacy with all of her prescriptions for two years and put this information on a timeline with medical and sick visit notes as well as therapy notes. 5. We have sought out the national experts (Dr. L, phone consults with Dr K, University of South Florida doctors, etc.) I shed any physicians that do not believe or care to learn about PANDAS from our daughter’s army. 6. Trying to explain OCD and its impact to others is close to impossible. Most people will not really “get it.” Remember everyone on this forum can relate. 7. We have spent time circling back with doctors, educators, and others in our community to explain what we have learned about OCD / PANS in an attempt to “spread the word”. Please do the same for all our children and the ones to come. 8. I truly believe perseverance, research, good note-taking, proactively following up with physicians to get appointments / results / treatments made a huge difference for our daughter. You are the only true advocate your child. (Many times, this was beyond frustrating, but hang in there until you have an army built that will work for you and your child!) 9. In addition to family, so many people have helped fight this disease with us. Therapists, nurses, hotel staff, friends, family friends, co-workers, church members, cab drivers, neighbors, prayer groups, pets, and strangers – please let them help you as you will need everyone. 10. Most importantly, pray to God for strength and that His Healing Hands will be on our children as they and their families fight this very, very cruel disease! Please also have HOPE! Thank you so much!