browneyesmom

I agree with PowPow about trying for Georgetown. Just before our first appointment with Dr. L, a friend who also sees her for her PANDAS child, told me that Dr. L is so well respected at Georgetown that they do PEX the way she tells them to do it for her patients. Also, I heard Dr. Swedo say that she didn't used to like PEX for our kids... until she found out how they are doing it at Georgetown. She said that it's safer than IVIG the way they do it and that everyone should follow the same protocol that Georgetown does. Sorry, I know this is not the information you requested, but felt compelled to comment.

I met the Director and Producer of this proposed film at the IOCDF conference in San Diego and viewed the trailer, which is powerful. It provided new insight for me into what my child is struggling with in the midst of PANDAS exacerbations. http://www.machinemanthemovie.com/index.php

I met the Director and Producer of this proposed film at the IOCDF conference in San Diego and viewed the trailer, which is powerful. It provided new insight for me into what my child is struggling with in the midst of PANDAS exacerbations. http://www.machinemanthemovie.com/index.php

Hello, is there a young male (early 20's, late teens) on the forum who has PANDAS? I met one about this age on FB this evening and he is trying to connect with someone of similar age, going through similar things. If anyone knows someone who might be able to connect with him, please let me know. You can message me directly at PANDAS-Awareness@cox.net Thanks!!

Well, crud! I'm am glad though, that you caught it quickly and Dr. L is seeing him tomorrow... praying it's resolved quickly! Hugs ♥

Welcome Julie. I read your link also. I think it is Angel Flight Soars, that Tampicc mentions. I know of at least one other family that uses them. There appear to be different divisions across the country, depending on your area, but try this main link: http://www.angelflight.com/ While I'd be interested to know more about his strep culture and titers, I completely agree about getting him in to see a PANDAS specialist who can help you turn this around if indeed, it is PANDAS. His symptoms certainly fit. Best wishes and please let us know how he is doing!

Oh dear... so sorry to read this part about the rash. I hope that resolves quickly! OTOH, I'm glad he's showing overall improvement and hope this won't set him back. Did you learn anything new after contacting the docs?

Absolutely; she is in ERP and I encourage you to continue working toward health and wellness... ERP is a big part of that for PANDAS. However, for severe situations like my daughters, it makes sense to have a safe alternative on hand, even as we work toward no longer needing it.

I posted this on FB also and someone responded that they had gotten the more "male" colors for their son and they were working great!

We are in Virginia and see Dr. L also. When DD12 could not clear strep for months on end, Dr. L put her on 2 weeks of Clindamycin, followed by 2 weeks of Rifampin. It seems to have cleared it!

Perhaps most suitable for girls, but with school starting soon, wanted to share this link for the chewers among us. I just ordered the Vanilla Bean (scented) and the Raspberry Swirl for my 12 year old... I let her choose two designs she liked best. I'm hoping this will provide a more discreet alternative to chewing on her hands. https://www.smartmomjewelry.com/

We are (I hope) continuing to come out of our second major exacerbation, during which she was psychotic this past winter. While she has made major improvements over the last several months, she's clearly not at what I would call "baseline" before PANDAS was a factor.

I voted on your other poll... great idea! Depending on when it is, it's a possibility for me.

Hi Kari! It was great to meet you at the conference; I look forward to the future as we each work to help PANDAS kids & families in complementary ways!

I spoke directly to Murphy/Swedo about the T/A issue as dd12 had them out at the end of her first exacerbation in August 2009 when we could not clear the strep infections after several months. ENT said they had seen a lot of action and were deeply scarred - they were usually red and inflamed. The feedback I got at the conference is that there are *SOME* cases where it is appropriate to remove them.... can't clear strep for months on end, remaining swollen and possibly blocking breathing. In such a case, she said it might be indicated to remove. My dd12 happened to fit this criteria, so I was relieved we had not made things worse. Also, her first severe exacerbation was BEFORE the T/A and actually, part of the reason for it. However, I came away from her comments with the same impression EAMomdid (lovely to finally meet you, btw )... don't rush to remove them; it may make things worse.

Just tested mine; it's working fine... must be someone else. Hope you connect.

I have a blog on Wordpress, but doesn't sound like you're referring to me. I'm pretty sure my mailbox there is working... although, this one is getting full as I prepare for the IOCDF Conference. If you are referring to me, you can email me at: PANDAS-Awareness@cox.net

Hello everyone... thank you to everyone who emailed pics to me and gave permission for me to use them for this cause. Vickie got a great head start on it for me this weekend and I worked on it a little more today. It's coming along well and is a very compelling glimpse into life with PANDAS. Just a reminder that no names will be used and I'm using clip-art as well to mix it up and help to better protect identity of PANDAS children. I've also removed names if they were visible on any armbands or name tags. At this point, I think we have all the images that we need. Thank you again to everyone for your support on this project!! I hope to see some of you at the IOCDF conference this weekend!

Hi ladies, Wendy, the exhibit I am affiliated with is for an organization: PANDAS Awareness & Research Support... working with Dr. Madeleine Cunningham, seeking to raise awareness & funds to support her PANDAS research, which is so pivotal for our children. She does not receive the government funding that some labs do. All proceeds raised from donations or products featuring the PANDAS awareness ribbon go to support her PANDAS research. I'm assuming you are familiar with this research. PANDAS Awareness & Research Support is eager to work with any of the other PANDAS organizations (a couple have given me permission to list them on our website & some collaborations are in the early stages) and/or individuals or groups for this cause. Some ideas for fund raising are on our website: http://www.pandas-pitandawareness.org/ We are still doing a great deal of behind the scenes work to launch this, so anticipate changes as we finalize and work toward more aggressive fund raising. I think walk-a-thons would be a great asset to our cause! But, I digress... sorry, I can be rather passionate about our need for research. I am in process of designing flyers, cards and signage. A video to play an endless loop during exhibit hours is in the works as well. The video will show PANDAS kids and have labeling to identify symptoms with which they struggle. Please see: http://www.latitudes.org/forums/index.php?showtopic=14376 as we are seeking any photos parents are willing to permit use of for this cause. They can be emailed to me: PANDAS-Awareness@cox.net Regarding Lyme, I would be happy to try to add something to the flyer about testing. My space is VERY limited, but I think it would be good to share information about how symptoms can mimic other conditions, such as Lyme and given the immune component, appropriate testing (Igenex ??) is important. Thanks for your input. @ Vickie... I thought I sent you a link a few weeks ago to our FB page, which is on my siggy here. I'll try to check that... probably after conference.

Hello PANDAS/PITAND parents... I have a request to ask each of you. As most of you are aware from my recent post, I am exhibiting for PANDAS - PITAND Awareness & Research Support at the IOCDF Conference this coming week. We will be on the lower level. PANDAS Network is also holding a meet and greet on the same level... see Vickie's post about that here: http://www.latitudes.org/forums/index.php?showtopic=14372 The mission of this organization is to raise awareness & also to raise funds for Dr. Cunningham's PANDAS research, which is pivotal. I am putting together some materials for the exhibit. One thing I would like to do is create a video of children to help increase concern of those visiting the exhibit. I can purchase clip-art to use for this; however, it would be great if the photos are of children who actually *have* PANDAS/PITAND. Thus, I need photos of children... preferably photos that would cause someone to feel sympathetic enough to want to donate funds to support research for our children... so those pics which depict symptoms of this horrific condition... and yes, sad, moving pics would be helpful to show the reality... are all very helpful... you get the idea. No names or other identifying information will be used in the video. I will simply display what symptom it represents with the associated photo(s). If any of you has any photos you would be willing to give me permission to use for this purpose (it will play on a laptop at the exhibit in a continuous loop & I may use it other places in the future, such as on the website: http://www.pandas-pitandawaren​ess.org/ ... need to make some updates/changes to that this weekend as well - but, these would be always used for only this cause), please email them to me: PANDAS-PITAND_Awareness@cox.ne​t This is what I have listed (sent to be printed already) for the s/s: OCD, Tics/Sydenham’s Chorea, Emotional Lability, Personality changes, Separation Anxiety, Tactile/Sensory Defensiveness, ADHD, Major Depression, Urinary urgency/enuresis, Rages, Scholastic Decline, Thoughts of Self-Harm & more - anything that demonstrates that would be great! Thanks very much!!

Great! I talked with Diana yesterday about the conference. I will be there and have an exhibit: PANDAS - PITAND Awareness & Research Support on the same level.... look for it!

Oh my... where to begin? Thank you all for your posts and comments. It was hard for me to write that post and brings me to tears just to open this thread again, remember how very ill she was and how far she has come against huge challenges. It was important to write it though, as I remember I would have given almost anything for some hope a few months ago! Without the lifeline of other parents, I don't know where we'd be right now. No one else really 'gets it'. tpotter & Priscilla... thanks so much for the input. I know these diseases can have an eerily similar presentation to PANDAS and agree it is so important to check for it. She has been tested several times now for Lyme & related diseases. She only once showed anything at all to Ehrlichiosis... it showed exposure; but that one was after her IVIG infusions and her docs believe that's what caused that bump. We are clearly seeing her improve and you know how you have a sense in your "Mommy gut"... I really don't think she has Lyme stuff... the PANDAS (and immune deficiency... which keeps me ever vigilant to any new issues) has been a severe & complex case for her though. After such a fight, it's honestly a little bit odd to see her continuing to improve... it reminds me of working your tail off planning some huge event, working day and night to the point of extreme exhaustion... then, the event is over and you almost don't know what to do with yourself. Your old life has been forever changed and you're not sure where to begin. Maybe that's just me and some PTSD, but it's an odd feeling. Anyway, I'm throwing my energy into trying to reclaim the house I've let go all this time and raising awareness & research support, which I believe is SO important!!! Linda... puh-leeze - I love kids and enjoyed all three of 'em! hehe... I suspect that normal behavior might have been mutual.

Hi Linda, Since we've met, you know most of our story. I just posted an update on us. It sounds like you've already made your decision for IVIG for your eldest. Most have already given good input here - plenty of fluid before, during and after IVIG. I used to buy bottles of juice to keep at the infusion center so she would have something she was willing to drink during infusions. Yes, be sure to have Ibuprofen and Benadryl on hand to give after infusion. Check with the nurses about if you should pre-medicate with anything. If he does not tolerate the rate, ask them to slow it down - they will likely do this on their own, IF he has trouble. They increase gradually and watch them. Bring snacks so he has food during infusions as well, since they take several hours to complete. Don't expect miracles the first day or for them to be steady. Healing is still going to be episodic. He will have good and bad days. Overall, it takes time to see improvement. I have generally read for those who only need the one infusion (no immune deficiency, like my daughter has), it takes about one year to return to baseline. You're in my prayers; hope all goes well. Best, Denise

I haven't posted here in a long time. Most of the last several months, I have been in the fight of my life to save my daughter, who just turned 12 years old, end of May. Many of you who have been here a while will remember that she was diagnosed about 2.5 years ago, remitted for several months after T/A, then crashed again when she caught strep again in Spring 2010. By Christmas 2010, I had to call 911 five times in 2 weeks. Had to call? Yes, had to call. Why? She was having daily rage episodes lasting up to about 3 hours (attacking me (hitting, kicking, biting, spitting, scratching, pulling hair... you name it, she did it... and yes, sometimes with that guttural "I'm going to kill you." voice) the entire time and strong as an ox - I honestly thought this petite 70 pound girl might actually overpower me, the adult - paramedics who arrived on the scene were shocked at her strength and it took 3 of them to restrain her, to give an idea). Frightening thrashing followed the rages, then she would go limp for a while before coming out of it... sort of - she often had hallucinations after and sometimes went into another episode. In other episodes, she did not seem to hear us as she repeated one word over and over again, sometimes grabbing at wires or staring out the window or crawling under furniture, seemingly unaware of our presence. Another time, after a rage episode where she did not seem to hear me, she laid down on the floor and silently wept. So many painful images are burned in my memory... thankfully, not in hers. She does not remember most episodes. I see that as a blessing. It was very scary to see what had been a previously healthy, intelligent, happy and loving child in this condition and it has been the fight of my life to save her. Around Christmas, I honestly did not know if we'd get her back. I would have to describe her condition at that time as psychotic much of the time and I did start to wonder if this disease had claimed my beautiful, precious child. Would it be bragging to share that as sick as she was, I didn't think there was any way she would complete the school year; however, she not only finished (core classes only - we had to exempt her from the electives), she made straight A's the final quarter, completing the year with a 3.7 GPA... I'm still trying to get my head around that. She pushed through so many times when she wanted so much to go back to bed, but worked hard to complete her work and she did it. In many ways, I think I'm just starting to feel the brunt of it and sometimes when she is not clinging to me now as she did constantly for so many months, falling apart in tears now that she is finally improving; yet, I am bracing for another school year and dreading more strep. I'm sure many of you can relate to that... getting some things in order here before that strikes again. I wish I could say she is 100% now. I can't. She is probably about 85% now though and for that, I am deeply thankful and feel hopeful again as her brain takes it's time to heal. I haven't seen one of those rages or psychotic episodes in several weeks. Sensory issues remain, as do physical stamina issues, contamination fears and a few others. We'll be attending the IOCDF Conference that I hope will give her some tools for those things and she remains in counseling and under the care of doctors. God has been so good to us on numerous levels through this and I believe He will use this for good, in some way. I want to encourage others who are just coming into this battle and are still in so much shock, especially when you read about those of us who have been off the cliff, back again and off the cliff some more with new strep infections. I remember those early days and endless nights, days when I was so certain antibiotics would be all my child would ever need, that we would NEVER get to the point of needing IVIG (she's had 6 high dose infusions at this point), that we never wind up in the hospital for this (haha... so naive, I was - 5 times to ER and a hospital admission of nearly a week at Christmas), that we would never have to pull her out of school (she was on Home-bound Ed from mid-December through the end of the year). I remember... my denial. I don't write that to discourage you... but to encourage you to be aggressive in seeking treatment early whenever possible. For those who are fighting insurance, doubting doctors and other monsters, hold on. We've been there. There is hope. Your child is still in there and your efforts to save them are not in vain, even if you don't see it yet. Don't ever forget that.

Thank you Kara & Nancy. It is phenomenal news! In fact, I should go post a separate update for those who are just arriving in this PANDAS world.