Mary M

When we were going to get IVIg, my argument to the naysaying doctors was that if I was going to invest so substantially in medical treatment that it would be fiscally wise to have everyone in the family tested so that the child did not return from IVIg to a potential petri dish of a household riddled with strep. The doctors seemed to appreciate that so, we were all negative to rapids, cultures and all had normal strep titers with the EXCEPTION of my dh who had elevated ASO and AntiDNAse B titers. He has been on abx for months on and off and retested and on again and off. He is completely asymptomatic with elevated titers that seem to decrease following 30 days of abx. Mary from Michigan

Jag10. Our dd 12 had IVIg #1 just after your dd, June 14-15, 2010. She is scheduled for IVIg #2 March 17/18, 2011. I will observe for patterns. May I ask, did your dd have symtpoms/turning back pages post IVIg #1? Mary from Michigan

Wow Amber, What a time you have had. I love the idea of renting an infrared tracker (kudos for coming up with that!) and thinking of hyperbaric. Outside the box thinking... Mary from Michigan

Sounds like you did all the right prep and that Coram provided the proper treatment and care. You should feel great about what you have accomplished. We have a family here in Michigan who used Coram last June. For those stock afficionados, Coram may be a good buy if they start courting PANDAS families (of course, those of us PANDAS families can't buy stock...we're buying immune globulin and abx but...). My dd refused to leave Oakbrook (Dr K's infusion site) last June. If misery love company...our two kiddos shared a common IVIg thread. With hope for health, Mary from Michigan

My dd is very sensitive to exposures. I am sure an exposure such as the one you described would certainly produce a response in her. Mary from Michigan

My dd has definitely presented with rage and what, when you read the list, would qualify as ODD (oppositional defiant disorder) but she's a PANDA through and through...that's just part of the presentation for some. Additionally, her OCD can send her into a rage when "it doesn't work" or can't be made "right". Mary from Michigan

Every little step towards enlightening the world about PANDAS gets us that much closer to health and hope! Thanks for putting it out there! Mary from Michigan

I have no words of wisdom other than to say my dd12 told me yesterday how many symptoms are back. My dd was as close to 90% as I could have ever imagined in December and Jan 11 things started to backslide. It is so sad to watch, and live through. I think the fact they were both sick and the whole world seems sick with something is causing the culprit. but that is no solace for us moms... Mary from Michigan

Teen age girls can be awful...sorry about the huge disappointment that they are. But, congrats on the awesome test scores and maintaining your GPA with all the medical stuff you have going on. You are truly an incredible young woman... Mary from Michigan

When our dd was in extreme exacerbation and we took her to a FAMOUS children's hospital Wilson's disease was the diagnosis of choice for the pediatric neurologist on call. He was vehemently against the oncept of PANDAS...odd that he chose a disease that looks like a panda in an MRI. That's the first time I could giggle about that experience, thank you, I needed that. Mary from Michigan

Hi, Mary M here, from Michigan... Nickelmama gave you the info for our Michigan PANDAS support group.. Please sign on...we'll see if we can help, at the least, we can listen. Mary from Michigan

In our family's case, we all had titers drawn (antiDNAse B and ASO). Dh was elevated so he was put on abx. He has been on and off abx now for nine months. He is completely asymptomatic, tests negative for rapid and cultured throat swabs. Abx for him have been helpful for our PANDAS daughter. Thankfully his doctor was a registered pharmacist prior to med school and so has a very keen understanding of abx and has no fear prescribing them, even long term. He had not had any experience with PANDAS before but he has been extrememly responsive to our need for my dh to be on abx to protect our dd. Re: extended family--we notice a flare of symptoms every time we spend time with my brother and his family. I finally acknowledged this reaction after after months of worrying about it. My SIL verbalized that she was actually wondering if her son has PANDAS. So opening up about it has made a huge difference for the good. I'm not at all suggesting your niece has PANDAS but sometimes open conversation can be helpful for all. Mary from Michigan

Oh peglem, I'm so sorry. During the rough patches the lack of sleep is such a source of dysfunction for ME, and we moms are supposed to be the ones holding it all together. I hope you can get even a little sleep... Mary from Michigan

Thank you for sharing...it is so improtant for all of us to hear stories of health and hope. Mary from Michigan

Hi Laura Mary, I'm sorry I can't speak to the sinus cyst issue however, I am in Michigan and as nicklemama offered, we'd like to welcome you to our Michigan group. PM me and I'll get you connected to the Michigan group. RE: your prophy dose questions. I can only speak to my dd's med dosing but...My dd12 received IVIg from Dr K in June. He had her take 875mg augmentin twice per day for two weeks then he put her on a maintenance dose of 500mg of augmentin once per day. During periods of increased symptoms post IVIg he has returned her to 875 mg augmenting twice per day for 14 days. If symptoms relent then she returns to 500 mg once per day. She was 75 pounds at the time of IVIg, if it helps to compare our kids' weights. Mary from Michigan

I would just love for a grad student/research assistant to come and live at my house and observe.... Mary from Michigan

Oh the discussion portion of the Wiki on PANDAS just makes me want to give Buster an award of excellence in sharing knowledge for the good of all! As for your relatives, perhaps they'd be interested in perusing some of the other websites regarding PANDAS? Mary from Michigan

Happy Sweet Sixteen Emerson! Thank you for enriching this forum with insight, strength, and light! Mary from Michigan

Hey Emerson, Sorry about your meds issues...and the wild weather messing up school. I didn't see American Idol but I just pulled up some of the Americal Idol vids online and first, he deserves votes as he is quite an amazing singer and second, PANDAS seems like the most genuine diagnosis this guy could get. He even talked about being on meds for sleep. Mary from Michigan

Thank you for sharing...we all need to hear hopeful, encouraging posts like this...may your path continue to be one of healing and hope! Mary

Our dd screamed and screamed and screamed...she did not do this outside the home. I can empathize...I have no words of wisdom to fix it. With hope, Mary

Praying and praying for you both! Mary from Michigan

For our specific situation: dd had IVIg mid-June, other than two major symptoms disappearing immediately it took five weeks before improvements began slowly. Now, at 7 months post IVIg, flares due to exposure last 24-48 hours. When they occur we up her maintenance dose of 500mg aug once per day to 875mg twice per day and with this past week ends flare also added ibuprofen (she abx had already been increased for one whole week). Last week end's flare was HUGE. Hope this helps

What a wonderful offer. We do not see Dr L but this offer could make or break the idea of traveling to see a specialist for so many. Thank you for opening your heart and your home to our global PANDAS family.

Advocate Mom, I remember how you are feeling so here's our story. Our dd12 had her one and only (so far) 1.5g/kg 12 hour infusion of IVIg June 14 and 15, 2010. Prior to IVIg our dd had experienced all but 2 of the "symptoms" on the PANDAS list so we were convinced it was PANDAS. She had eleveated ASO and AntiDNase B titers, was on augmentin 875 twice per day, and had a CAm Kinase II of 166. She had had 4 normal functioning years prior to this exacerbation. She had had an extreme exacerbation at age 7.5. Ped had thought it was PANDAS but at that time the symptoms abated before any real idea of what to do about it became evident. Not so in 2010. Things just got worse and worse. Thankfully, she had eleveated titers this time (not at age 7.5) to prove it to a doctor or two, and the CAm Kinase II to reassure us (the doctors are less than interested it seems in the research end). By the time IVIg rolled around our dd was quite dysfunctional across the board--not sleeping, not eating, unable to read or write, unable to interact with others, and yet, at the surgical center...day 1-she was pretty functional in front of the staff. Day 2 was another story. The doctor said that was good, he said it meant the IVIg was working. Improvements: After day 2--she slept. She ate. These two things helped us make it through to more improvement. I've read that the brain heals slowly, over a long period of time. This was quite true for us. We had five long, challenging weeks and then things began to slowly and gradually improve. We are now 7 months post IVIg. In mid Nov 2010 dd got "strep", culture was negative but clinically the ped thought it had all the signs of strep. Back to 875mg aug twice per day for 20 days. By the end of the 20 days, dd was the best she'd been in more than a year. SO back to 500 mg aug once per day. DD has been symptomatic 3 times since then all due to exposure. The symptoms are less intense than pre-IVIg, the duration is much less than pre-IVIg. Although IVIg has not "cured" our dd, IVIG has decreased symptom intensity and duration. And I can say without hesitation that I'll choose IVIg again to see the major symptom improvement it has brought our precious daughter.