Mary M

So cool...what a brave kid! Mary from Michigan

In gratitude to all of you...those who still post, those who've moved on, and those who continue to struggle each moment of the day. This amazing forum has meant so much to me. I appreciate each and everyone of you! With hope for healing at this time of gratitude, Mary from Michigan

Hardly a scientific research article but the Dr (was his name Dr Sears???) in the episode of The Doctors the other day made exactly that reference. Mary from Michigan

Dd started on 1440mg augmentin xr twice per day March 2010-May 2010. Changed to augmentin 875mg twice per day. Remains on augmentin 875mg twice per day to present. Have attempted to decrease to prophy dose but symptoms emerge. Dd has had breakthrough infection on 4 specific occasions. Dd has had 2 IVIgs. Dd refuses probiotics. Mary from Michigan

I, too, would like to offer my thanks and gratitude to the organizers, sponsors, presenters, attendees...and might I add, all those who took care of our children while we were at the meeting (whether they were the other parent, family member, or friend), without knowing our children would be well cared for while we were away, we never could have given ourselves permission to go to the meeting to learn, share, encourage and simply BE with others who have shared this path. I have never been in a room filled people with such courage and wisdom and dedication to persevere under such challenging circumstances. I will be the first to admit that I cried in the presence of such incredible families but those tears were washed away by the warmth, compassion, determination, and hope that only a room of PANDAS parents could provide. I continue to be in awe of all of you...and am humbled and honored to have spent time in your presence. With hope for healing, Mary from Michigan

This was a possible diagnosis 7 weeks after dd's second IVIg. Marble sized purple nodes on the bottoms of her feet. Extremely painful, could not walk on her feet, red hot to the touch, red and white streaks on the soles of the feet. Ped rx'd benadryl in case it was an allergic reaction to something. Had no effect so then rx'd steroids. Within a few hours of first dose of steroid the pain began to be relieved. Dd was on a 5 day course of steroids for this. The heat and pain diminished first, then the purple nodes. None of the doctors who saw it were ever quite sure of the actual diagnosis-(seen by pediatrician, dermatologist, derm's friend at the Clevelan Clinic via photos and email/phone correspondence). Mary from Michigan

Aye-here's the rub. If I respond to this post with my dd's story I run the risk of causing you great concern with every future illness. But by responding perhaps a reasonable sense of vigilance and proactive treatment at the first signs of trouble will avert future downward spirals. Our dd's first presentation was extreme and sudden and is a very clear representation of classic sudden onset PANDAS. And just as suddenly (by week 8) all symptoms were gone, health was restored without any medical interventions whatsoever. That function lasted for four years. And then, without warning, the symptoms were back, they became fierce and uncontrollable but so many other ideas were offered at that time and PANDAS was not among the top ideas...and so time went by, treatment for autoimmune dysfunction did not take place and the symptoms got worse. Only when we retunred to PANDAS intervention (and we hadn't had to use any of those the first time around) did we begin to make progress. But the process has been painfully slow this time. So our story has a long period of health and function-four years-between two exacerbations (and we most certainly had illnesses in the family and in our dd during that time) and then marked loss of function and full blown PANDAS again that has lasted for two years this time. So don't worry that our story might be yours, but please don't forget PANDAS and be sure to be proactive in the future. Mary from Michigan

Thank you...your note came when I really needed to hear many of these thoughts. Mary from Michigan

I am not the author of this post but thank you for this thread...I so appreciate hearing everyone's responses. Mary from Michigan

This entire conversation has been very educational. I am just always so grateful to this forum for sharing its wealth of knowledge and ideas. Mary from Michigan

Wow-so nice to see the system beginning to work for our children!

For my dd, the increased urinary output is volume. Mary from Michigan

Please report your experience to http://vaers.hhs.gov/index Mary from Michigan

If anyone from Michigan (or anywhere between here and there) wants to car pool...I'm signed up and ready to be a driver. I can fit a total of 7 in my car! PM me if interested. Mary from Michigan

May the empathy party begin! I wish I had some words of wisdom for you, Peg, as you have always provided me with so much support and marvelous, concrete suggestions as to what to do next. You have been a true pioneer on this journey but the work is arduous and indeed exhausting. A break, for both your sake and Allie's, may be therapeutic and re-energizing. You've been doing this for what seems like a lifetime. In terms of Allie's medical care, education and family life you have not only redirected streams of information you have literally moved mountains of knowledge. In terms of the greater community, all of us on this forum...you have provided so much. I wish I could come and sit by your side, sip a cup of tea and just spend a moment in time with you...I wish saying that through the internet could make our support to you feel real. You are an amazing woman, mother and friend. Mary from Michigan

Our dd was provided with an Alphasmart by the public school last year when her dysgraphia exacerbated again with PANDAS. Dd was in 7th grade (age 12). She found the Alphasmart had some drawbacks--1) the school did not have a cord that worked for printing so all of her teachers had to have the device in their possesion long enough each day to read her homework from the night before. 2) the device was an older model and therefore only displayed 2 lines of text (I think it was two)...this made creating a cohesive thought challenging for her as she could not remember what she wrote that she couldn't see. I was concerned that the other kids would tease her but interestingly...she shut them down when they made negative comments. It may have been helpful that the school she attended also housed the County-wide special ed program with lots of inclusion opportunities so lots of alternatives were present in any given classrooom. She had already made a connection with this population by befriending some of the students while she was well. Advocating for herself was just an extension of advocating for others. Unfortunately, dd's symptoms then prevented her from attending school for the remainder of the year. Due to the disadvantages noted about the alphasmart, we opted for a small netbook. Of course, now her OCD prevents her from charging it! LOL! Mary from Michigan

No yeast in our family members and both dd and dh have been on abx for over 1 calendar year without the benefit of probiotics. I have probiotics in the fridge but neither opted to take them. Mary from Michigan

Since June 2010 dh has had elevated ASO and AntiDNAse B titers. His internist, due to our dd's condition, has been prescribing augmentin to no avail. A few months ago the internist said he would no longer prescribe anything. That the elevated titers must just be my dh's regular numbers. So dh went to a LLMD. After all the testing dh is negative for lyme (YEAH!) but LLMD refused to do anything about the strep titers. So dh went back to internist, internist had a change of heart and gave him a shot of rocephin AND a script for clindamycin. Now I know most of us on this forum are not physicians, so I will hold no one acountable for their opinions in response to this quesiton but does this double whammy seem adequate or too much? I had hoped for a script for clindamycin as I have read of the efficacy of this for strep carriage. i am grateful to the Dr for helping. Just want to make sure dh's insides aren't turned inside out by this. Mary from Michigan

I was able to speak with Dr S at USF yesterday. Nice conversation. They have openings starting at the end of the month. I am hopeful that we can provide dd with some concrete tools for success while she is more functional post IVIg. Timing is everything with our kids isn't it?! Plus three local psychs called me back now so we have some local support as well. Thank you everyone for your comments here. I have said this before but it deserves to be said repeatedly, without all of you I do not know how I could have managed with this thus far, Mary from Michigan

Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.). Funny, all of the SIDE EFFECTS of zyprexa listed above are symptoms of a PANDAS exacerbation in my dd. We have had eating and non-eating symptoms at various times though. Mary from Michigan

So sorry...this disease does affect the whole family and shifts family dynamics as the symptoms wax and wane. In my opinion, the door shutting or slamming is an iconic symptom now. When I hear another person speak of their child needing to shut the doors..POW, I think PANDAS. And I know during that stage of things in my house, the door shutting/slamming put everyone's nerves on edge and even after it ended I would jump for the slightest BANG-sound around me. Between my dh and I, we are each affected very differently by the myriad symptoms our dd demonstrates. Not only do PANDAS kids' symptoms morph but so do the reactions of those in the home to each of the different symptoms. No one ever knows what to expect next from anyone. This random lifestyle creates real challenges in the dynamics of family life on so many levels. I can only speak for myself when I say that I have had to work very hard to THINK first, before I speak to my dd. Easier said than done when a parent is on edge. If you met my dd, you'd never know anything was wrong either...two IVIgs have helped bring her back from the brink so our decision for IVIg was simple...we had lost her. But continued abx are our other significant medical intervention. Is your ds on abx currently? Mary from Michigan

Absolutely a possibility to participate in the 3 wk USF program. All of the practitioners that I called here in MI were the ones listed for my area on the IOCDF website. DCMom, Does the FLA program include the parents? I ask because one of the psychs I spoke to yesterday was aghast by the fact that the prior psych did not include us (parents) in dd's sessions. We were never apprised of her "homework" other than to say she had it and knew what to do. We participated in one exposure. Now, dd was less than functional at the time so perhaps that makes it all a mute point but the one psych said he would maintain each session with all of us present. Mary from Michigan

Yet both of my dd's PANDAS docs said no to SSRIs. So many different "expert" opinions makes it very hard as a parent to know what the right course of action/treatment really is. Mary from Michigan

Ay, and there's the rub. I left messages for 6 different psychs. 2 phoned me back the day I called. I looked at their web sites. Just don't know who would best serve my dd. One of the psychs I spoke to yesterday was unfamilair with the use of the "thermometer" to gage fear intensity with children/teens. Yet I have read of the use of the thermometer concept in multiple books. He said he has 25 years of experience in CBT/ERP. Trial and error is probably the only way to know which psych will work best with my dd but moving from one to the next seems daunting. Mary from Michigan

This is precisely why I thought this would be a good time to start. My dd became, for lack of a better word, more and more psychotic during her spring 2010 therapy. She was just too "ill" with PANDAS to get any actual work of any kind done. SHe is certainly improved from the IVIgs but the OCD still makes life challenging for her. Mary from Michigan