JAG10

Alex- are you back in the states? How's your family? I was thinking about you , your wife and kids with Independence Day approaching and hope all is well. Sorry if I outed (reserves) you unwillingly. Many of us were thinking of you on Father's Day and wanted to extend a sincere thank you for your selfless service.

I agree, and tpotter and I can both advise you to not waste your time with CHOP!

Good for you! Because all Jo Elia would have done is "discussed" the course of the illness with you which you can do with us from the comfort of your own computer, no co-pay and no waiting Back in January, I had asked her about participating in the Cunningham study.... she did not seem as knowledgeable as you would expect for CHOP's "pandas expert." Said it wasn't meaningful bcs it showed elevations for too many things including "typical" OCD. What??? Then I looked at the chart she was showing me which correctly indicated CaM K was NOT elevated in typical OCD, but was in SC, PANDAS, ect. WHATEVER!!! I moved on quickly and I'm glad you aren't wasting your time. As in my "confession" post, treatment for PANDAS in the Phila area per our frustrated and disgusted pediatrician is DO NOTHING.... thanks, but NO THANKS!!! Bet it wouldn't be DO NOTHING if it was their kids!!!!!

I'm glad we are able to put Tunes for Troops on both lists today! They are number 10 and I really hope they make it. Certainly, music is a little portable piece of America and would be great news for the upcoming Independence Day!!!

Ugh, tantrums... who are you scheduled to see at CHOP???

We've bounced between #4, 5, and 6 all day.... less than an hour to go and we're back at #4, shhhh...super job, it's really tight, get some sleep so you have fresh voting fingers tomorrow. gnight.

Jodie- Your ds is a week farther along then my dd10. I emailed dr.K the day after we got home from ivig how beautiful my daughter's hazel eyes are now that they weren't all blacked-out! Well...that lasted for the first week or two, now they are going back and forth between crazy dilated and normal. We are waiting for this to stabilize too.

When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me. While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments. Way to go on the Pepsi Refresh plug! The flock has heard and responded!!

Dd10 came home from her first day of activity camp today; it's just from 9-12 to get out a little bit and let me see a couple clients in the summer. She says to me "Why am I so different? Why do other kids think I'm weird all the time? I mean, they (2 other girls) were nice to me, but I could tell they liked each other more and thought some of the things I say were weird." "Did you say something weird?" "Yeah" "What?" Head down, "I'll tell you later. So, PANDAS makes me do that? When is that gonna get better?" Really soon...... Then she pivoted right into a conversation with her little sister about "Annoying Orange"...Youtube it if you are so fortunate as to not have had the pleasure, but you will see how this subject is not going to get you in with most preteen girls. At least she's moved on from Mario Bros..... Is potentially negative contact with her peers worse than no contact at all socially? She was doing better weeks 1,2,3 post ivig, but other symptoms were worse. Now, week 4-5, those are better and cognitive/regressive behavior stuff is worse. It's like Forrest and his box of chocolates....

I know this song has no intention of being related to a PANDAS child and their parent.... I was driving to work this morning trying not to feel too sorry for myself with the 4 weeks post-ivig ups and downs blues, then this song came on and I just completely, COMPLETELY lost it sobbing! I felt like my dd10 telling me "you think it's rough being you, try being me." Just don't give up I'm workin it out Please don't give in, I won't let you down It messed me up, need a second to breathe Just keep coming around Hey, whataya want from me Whataya want from me Whataya want from me Yeah, it's plain to see (plain to see) That baby you're beautiful And it's nothing wrong with you (Nothing wrong with you) It's me, I'm a freak (yeah) But thanks for lovin' me Cause you're doing it perfectly (It perfectly) There might have been a time When I would let you step away I wouldn't even try But I think you could save my life Just don't give up I'm workin' it out Please don't give in, I won't let you down It messed me up, need a second to breathe Just keep comin around Hey, whataya want from me (Whataya want from me) Whataya want from me (Whataya want from me) Just don't give up on me (Uuuuuuh) I won't let you down No, I won't let you down (So I) just don't give up I'm workin it out Please don't give in, I won't let you down It messed me up (It messed me up) Need a second to breathe Just keep coming around Hey, whataya want from me Just don't give up I'm workin' it out Please don't give in, I won't let you down It messed me up, need a second to breathe Just keep coming around Hey, whataya want from me (whataya want from me) Whataya want from me (whataya want from me) Whataya want from me What Do You Want From Me (Adam Lambert)

I've read on here that "excitement" can open the BBB, so not a cause in and of itself, but nudging the doorway open to trouble?

One night in July, we should all grab a glass of our favorite wine or spirit, get together in our favorite meeting spot...here....and start a topic titled "What I've been willing to do to help my pandas child." I KNOW Vickie and Kelly would have some humdingers to share on that thread!!!

Kelly, THANK YOU!!!! from all the pandas families including those here, those out in the community who are having "ah-ha" moments as they discover and learn, and those whose children suffer, but they have yet to discover why. Is it too optimistic to think this could spark a domino of funding??? I would love for someone who goes to the OCD conference to get a picture of Dr. Cunningham's face when she shares the news that she WON the $50K from the parents of pandas children who have moved mountains one bucket of soil at a time. What the heck are we all going to do with the all that free time we'll have when we don't have to vote in July? I'm planning on giving my laptop some vacation time too! Jill

LET THE GOOD TIMES ROLL!!!!!!!!!!! Pray it, Peg...it's working!!!!!!!!!!

Thank God he sends folks home with 2 doses of prednisone.... I dropped one in between the seats! That's all this group needs is another book!

I had a pediatrician appt for my girls this afternoon. The last time I had spoken to her was in February as I was trying to explain I couldn't get lab results from a specialist and I officially shifted into the "desperate mother" camp. I really don't blame her, I did sound pathetic; PANDAS has a way of doing that to an amateur. Anyway, I decided I did not have the mental energy to keep working, running a household, manage my girls and convert her, so... I went on without her. Fast-forward to now; we show up at her office, me with my folder of documents and I fess up to the whole we went to Chicago and had ivig 4 weeks ago thing. I was expecting the worst and was pleasantly surprised. She listened, never seemed shocked and had obviously increased her background knowledge since we last spoke. She said help for PANDAS was more than hard to find and the protocol in the area (Philadelphia suburbs!) was, get this, "do nothing." Thank God she looked as disgusted saying it as I felt hearing it! Anyway, she shared that she had another patient with PANDAS who was really in crisis and desperate for help. So, she was open and eager to contact Dr.K as well as share his website with her other paitent's family. At this point, she had yet to see my dd. Since both girls had check-ups, I stayed with my younger while she examined my older. She came back in the room and said she had never seen her so good (and she hasn't been having a great week) and that she was thoroughly impressed with her progress thus far. I explained the whole ivig adventure, the adventure after the adventure, the delay on the tarmak bcs Air Force One was landing, the massive headache that would come right on schedule (the headache was on schedule, it was the flight that got delayed) followed by the lightening and turbulence and my shouting as I looked up "WHAT ELSE HAVE YOU GOT TO THROW MY WAY!!!" Here's the kicker, then the pediatrician says to me "You should really write a book about this whole experience. It would be amazing!" So, if this sounds familiar and you go to a pediatrician with an erect life-size cow on roller skates in the office, PM me.

I think it is also important to remember, these problems are on a spectrum, not yes or no. PMS is on the mood disorder/bipolar spectrum (gentlemen, try to control the urge to knock that softball out of the park) If your "ocd tendency" results in you being a workaholic or avid reader that person is viewed much differently than a kleptomaniac. My biggest issue w/psychiatry is you can back yourself into many diagnosis if you look hard enough.

Linda- Is this the key line from that article? Infused immunoglobulin (OKT3) has been shown to cross the blood brain barrier and may initiate T-cell mediated proinflammatory cytokine release

When my dd10 was 7, we took her to the Amen Clinic in VA. I was convinced she fit Dr. Amen's description of over-focused ADHD. Not sure if any of you are familiar with Daniel Amen, he's been on PBS recently. Anyway, he does these SPECT scans and has done tens of thousands of them. He breaks ADHD into 6 types, mainly hyper, mainly inattentive, mixed, mixed w/OCD (over-focused), and something he calls "Ring of Fire" ADHD which is akin to bipolar. So, dd has the SPECT scan and it comes out her whole brain is overactive- Ring of Fire. But my daughter doesn't rage, not even a little bit (yes, I'm grateful.) She holds grudges and is irritable and hyper-focused, but no temper/anger/raging issues. So her "cycling" basically went from hyper, gitty/silly/goofy to irritable/little grouchy. It's (not so) funny, but I took her to Amen because I wanted some objective measurement and not just a psychiatrist's interpretation of how she behaved in the office or how they interpreted our observations of her behavior. I always doubted the "Ring of Fire" AKA mood disorder-nos AKA we think she's bipolar but she doesn't quite fit that dx. She tried so many different meds, in so many combination; it was what I call Symptomology Whack-A-Mole and it failed. I'm surprised MOST PANDAS kids are dx bipolar! Many more of the children's stories I've read here fit Ring of Fire much closer that my dd does. Looking back, it's so much clearer. Does bipolar really result in cognitive decline, handwriting deterioration, behavioral regression, urination holding, bed wetting, dilated pupils, livedo reticulitis and loss of reading, writing and math skills? How can the medical community be so willing to open up rare adult diagnosis like bipolar, yet so easily dismiss pandas?? My dd10 had ivig 3 1/2 weeks ago and is off ALL PSYCH MEDS for the first time in over 4 1/2 years!! I'm not going to beat myself up that it took us so long to figure this out, but I thank God everyday those psych meds did not cause irreversible brain damage and that PANDAS is swelling, increased volume, not brain damage and that it can be treated effectively.

Below is a prayer to St. Paul. This might be more fitting for when you are quiet, more peaceful and able to concentrate. Personally, in the heat of particularly taxing mother/child moments, I always say a few Hail Mary's (my version of counting backwards from 20 to calm down, kills two brids with one stone.) I keep St. Paul and St. Blaise medallions in my purse. St. Blaise is the patron saint of illnesses of the throat. Although the boy he helped had a fishbone stuck in his throat, he's a good saint for PANDAS (and SLPs.) Patience Prayer to St. Paul O glorious St. Paul, who from a persecutor of Christianity, did become a most ardent apostle of zeal; and who to make known the Saviour Jesus Christ to the ends of the world did suffer with joy imprisonment, scourging, stonings, shipwrecks and persecutions of every kind, and in the end did shed your blood to the last drop, obtain for us the grace to receive, as favours of the Divine Mercy, infirmities, tribulations, and mistfortunes of the present life, so that the vicissitudes of this our exile will not render us cold in the service of God, but will render us always more faithful and fervent. Amen. ~~~~~~

Joan- sorry not much to personally add, but I'm sure I've read on here of parents mimicking your experience definitely up to 6 weeks, I think I've even read 8. It doesn't help much when you are counting the door bangs though. I'm so sorry your road is so rocky. Are you religeous? St. Paul is the patron saint for patience (and patients). I'll pray for you. Jill

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction.

A Happy Father's Day to all the fellows on the board. We appreciate the balance and perspective you share as PANDAS dads. Your children are genuinely blessed to have you fighting for their wellness and right to a happy childhood. An extra special shout out to Alex who spends this Father's Day away from his own children overseas so the rest of us can enjoy the comfort of being protected by the finest military on the planet!!!

Perhaps you can PM MomMD, she may have missed it....and then come back and let the rest of us know;)

Those school groups are dropping like stones, Top Banana and the other one Los Pens something... 13 days to go, every day every vote counts. Really positive sign we are so high during the week. Everyone put one hand on your back and pat (even times on each shoulder-just kidding!) AND the other hand on your mouse to KEEP VOTING!!!