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A Message of Hope


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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!

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That was beautiful. Tears are welling up in my eyes as I am reading your post. Thank you. It's wonderful to know how all of us banding to together to get the "word" out, share information, etc. is making such a difference. I remember 4 years ago after countless hours of searching on the internet (years of searching, actually), how excited I was to have the name of someone else who had a "tidbit" of information to help me get to the bottom of my son's 4 year-old problem (he was 8 years old, when he got sick, too.) I also remember 3 years ago, driving down to G-town hospital in the middle of the night with my DS for Dr. L. to admit him (through the emergency room) to finally get IVIG treatment, and his comment: "Mom, I'm finally going to get well!" Talk about "hope."

 

It is a long, hard road, and I think we are winning the battle, and in the process finding so many pieces of information to help others with all kinds of neurological and psychological conditions along the way. And, we are doing it as parents, professionals, and just plain people who are interested...working together.

 

Again, thank you for your beautiful first post. And, welcome to the forum.

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Thank you for your post! It is wonderful to hear messages of hope!

 

Would you mind sharing if your daughter was immune deficient or not? I'm still trying to understand why IVIG works for some but not for others. I hope the new study sheds some light on this.

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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.

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Hi and welcome, mwmmom! Thanks for your lovely, hopeful post.

 

Wondering if you would mind expanding on the PEX/immune deficiency issue? Do the doctors feel there is more risk with PEX for the kids who have the immune deficiencies? Do you know if there's some cutoff IgG level or specific types of humoral immune deficiencies that are considered safe/unsafe?

 

Glad to have you among us:)

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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.

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DS8 has been battling PANDAS since Nov. 2010 when a sudden onset of tics erupted. He went un- dx for a year until through antidotal evidence it was apparent that it was not TS or tic disorder. In Dec. 2011 the doctor rx a script of 500mg of azirthromycin 1 x per week. There was some improvement, but it was not till July 2012 that he started on a rx of 250 mg of azithromycin daily and we saw a remission of all his tics and ocd type behaviors. His ADHD is still causing him challenges with peers and he is immature for his age. If it were your child and the tics/ocd were in remission would you push for an IVIG to try to reverse the ADHD/impulsivity issuers?

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