Mary M

Really needed to hear some good news. So happy for you!

Nancy, I wish there were words to help... You are such an advocate for your daughter, for this awful disease, and for the rest of us. I will heed your warning as my dd is 12 and we are suffering such an extreme exacerbation at present. I am hopeful that you will have some time now to heal. Thank you for sharing your painful ordeal. Mary

My dd 12 just finished with a throat clearing tic. Prior to that she had a nose blwoing tic (no productive blowing, just noisy blowing. She seems to move from one tic to the next with some regularity the last few months.

Bravo--so comfortable in front of the camera and knowledgable about PANDAS. Thank you for helping us all!

Know you will be in our thoughts and prayers today, tomorrow and in the weeks ahead. Healing and peace is coming your way.

So nice to read good news bright and early in the morning. Congratulations...ERP is hard work so this is a hard won achievement!

Thank you for elaborating. I must admit, I was worried about Dr K not seeing our dd at her worst. I am honestly grateful that he attempts to provoke the child to illicit a response aside from the controlled, meeting a new person persona. I am curious as to what he does with a girl but now I know to keep my face straight and my mouth shut during this portion of the appointment.

The quote below is from Johnsmom from another post...I was wondering if anyone would be willing to elaborate further on Dr K's "interesting tests" and what we should expect from our intial consult next week. "I was told by another parent on this forum that dr k has some very interesting ways to test our kids and to not intervene. I will be forever grateful..." Thank you, Mary

As if you don't have enough to worry about...thank goodness your ped is on your side even though he brought up some scary issues.

What good news...a little relief can go a long way...and it may mean some true recovery is forthcoming.

Our dd12 is currently suffering from extreme insomnia. I wish I had an answer for you. She was up for more than 32 hours straight Mother's Day week end (and when she finally fell asleep she spent more than an hour sleep walking) and has only slept from approx 5am-11am (yes, she's up all night) daily for 3-4 weeks now. She took melatonin one night and it didn't help so in her mind that is not an option. Sleep deprivation is hugely debilitating. But she's not tired at all...is there science behind the sleep issues PANDAS have?

We are still in the learning phase here too, but my dd12 has never tested positive for strep via rapid or cultured specimens. However, her titers were high this time (our first definite experience with PANDAS was 4 years ago--and titers were normal--the ped questioned PANDAS at this time but due to the titers being normal could not make a firm determination). This time, I guess we'll say we're lucky (?) the titers have been elevated and rising for months with no indication of strep symptoms and negative strep tests (rapid and cultured). So now the ped is quite confident (especially after every possible test has come back normal with the exception of ASO and ANTIDNAse and IGE). So it is possible that you child is experiencing the effects of his own antibodies which can take quite a long time to decrease. I think this may illuminate the "lag time" between abx and symptom improvement. These kids are not necessarily responding to the strep itself, it's the bodies own antibody response that at least my PANDA responds to. I'm glad to read you have a Dr who is willing to work with you and become educated.

I had no idea this could be done from home. You are quite a mom, Melanie. I hope this infusion has some staying power--more than a few weeks.

Thank you for sharing your story and your insights..and everyone else for your follow up replies. My dd12 needed a sports physical and shortly therefter began her exacerbation last fall when the Dr (not our amazing and wonderful pediatrician--just the one who happened to be there that day) wanted to vaccinate her for chicken pox. I said no. Instead I had her titers drawn for varicella. They came back low and the Dr called to have us come in to have the shot...we were not at a PANDAS dx yet but it seemed illogical to do anything more than survive at that point so I declined the varicella and am I ever glad I did. What could the outcome have been? I shudder to think since she's been pretty much off the charts for function for months now...some days I think there are just too many dots to connect to ake sense of all of this. Thank goodness we've all found each other.

You give us all hope. May the light at the end of the tunnel shine brightly for you over the next few days/weeks as you push through this.

My daughter was on 30mg! of valium this morning when we had the tussle over getting in the van! The immuno who ordered Allie's IVIG told us that her pediatrician would have to be in charge of pre-medication. Since we already have an "as needed" valium rx that we used to fly her to DC and back- we just use the same dosing strategy that got her on the plane! And we use emla cream for the needle stick. It takes 10mg of valium to do a blood draw, unless she's in exacerbation, then it takes 20. I don't like that I've had to resort to this, but, if she didn't need the valium, she also wouldn't need these procedures that she takes it to get through. You are amazing. I so appreciate that you've shared your experience with me. Our dd used to "hide" her symptoms really well in front of others but she is losing that skill these days. I will check with the ped and Dr K as to having a standing order in the event we need it for IVIG.

This is so painful and heartwrenching.

Thank you Buster...you are so eloquent, so informed...and just as full of sorrow as the rest of us. How can we ever thank you for what you are doing for all of our children.

Thanks for your support everyone...peglam, I so hope that someday all of our kids will actually know what we did for them...and not just be mad at us.

We received our Cunningham test kit today and promptly took our screaming, angry at us dd to the lab. It is now in the hands of the Fedex delivery service. The gal in the lab had to try both arms as the first was too swollen to use after she inserted the needle and could not get any blood to flow. So our dd is "less than thrilled" with us (as PANDAS parents you can all interpret the meaning there for what it is, right?). Now we wait...for the results and our upcoming appointment with Dr K.

May your Friday be productive and supportive. Just know we're all standing there behind you...

I appreciate reading your post because I have fears about my dd struggling with going for the IVIG also. I will send positive thoughts your way for a restful night and an easy day tomorrow. We have our consult with Dr K 2 weeks from today. It took both my dh and myself to get her to the lab today to get the Cunningham test drawn. Do the docs who do IVIG ever use versed or something similar to calm the pt in order to get teh IVIG done?

I'm so glad to hear good news from you. I hope you all have a restful night.

Tired...I think that may be the hardest part of this for all of us. I think few families outside of our circumstances can truly understand the effect of limited/disrupted sleep on the whole family. I would like to think that someone could prescribe the abx to your son while his Dr is away.

OK-sometimes these posts just freak me out...how can we all be experiencing the same thing in so many different places in the world and still be doubted by the medical establishment? Our ped (who is been very supportive now of PANDAS--we'll be seeing Dr K on May 26) was going through DD12's chart to determine what to send to Dr K for our consult and discovered visits in 2000 for a "diaper rash" that was cultured and tested positive for strep pyogenes and numerous staph. DD was medicated with Aug and bactriban...I weep to consider that this could have possibly been the impetus to all our dd's troubles...a diaper rash? 10 years ago?? And yet, so many of you here are stating just that very fact.