PANDASmcnuggetsw/fry/coke

Thanks Deedee! I just saw this and funny it was right after I just finished posting a reply to you on your q on the board.

Deedee, A cyber hug for you for all you are going through {{{{{{ Deedee}}}}}}! Not much else to add. We only briefly tried 5htp and I can't remember anything from it. Tryptophan, our dd needed a lot b/c she metabolized it so quickly. We used it mostly as a sleep aid. Not a great help for us, but ymmmv and your daughter is probably smaller and it might help a lot more. After 2 IVIGs and steroids and 2 years and 4 months of abx, an MRI and removal of gluten, casien, eggs and 3 other foods from her diet,tons oftesting,we are finally going to try the SSRI. She is fatigued from all of this and so am I. We don't have the rages,so I can't imagine how much more that would add to the mix. Whatever you decide, my hope is that your dd gets relief soon and you have peace about the decsision!

Emily~~I am so happy for you. A plan and peace in your heart....these are awesome things! Rest in it!

We haven't gone without N-AC and had this experience, but we dropped the St. John's Wort yesterday and last night she was crying, saying she was depressed and worse.

Thanks so much for your input~ I am thrilled this psych believes in low and slow dosing too and hers is only 12 mg. for starters. Looks like Zoloft may have less side effects too. We are getting her off the St. John's Wort and plan on introducing the zoloft tomorrow. NEVER NEVER thought we would be here, contemplating an ssri. We are the cruchy granola type here. :-) But as other parents have said and I concur...we've tried all natural remedies and I can't let her suffer like this. THANKS

Thanks DCMom...sounds like "extingusishing" the behavior if that is the correct term I remember from college centuries ago! Well that is what I was thinking it might be like and this is going to be verrrrrry interesting indeed!

Just found this and read all 18 pages. Very helpful on the differences between the 5 main SSRis! http://www.psybc.com/pdfs/EgliSSRI.pdf

MDmom~that is good news!I am always thinking someone is going to ask dd if she ever thinks about "cutting" she does not even know what this is! She is warming up to idea of RMH. We're on the list and I said if she hates it,we can look elsewhere. It's off season so I don't think all the hotels will be booked...

I cancelled a bunch ofappts and that felt good! We did see a psych today though and I posted a new one about that. He was PANDAS friendly. DCMom,I like the idea of "doing and not talking" that you mentioned at Rothman. I wonder HOW this works when it is is intrusive thought type of OCD?

I was reading somewhere on this board that Dr T says Zoloft can be bad for PANDAS kids. I have not been able to get hold of him for the last two days and I know his go to rx is Luvox. He gave us an rx for it a while back and we have never used it....now we have both. Anyone know why he thinks Zoloft can be bad for our kids? I know everybody's mmv! What specifically is the difference between the two meds? THANKS!

On the good advice of folks here, I cancelled a bunch of appts. in anticipation of going to Rothman soon (thank you!) I did keep a psych apt for dd today though, and we really liked him. He actaully READ UP on PANDAS before we saw him, so that was refreshing! Anyway, he was in favor of low and slow dosing like Rothman and gave her an rx for a low dose of Zoloft. Disussed being off St. John's Wort for 48 hours before beginning. He didn't think L-Theanine or N-AC interacted with Zoloft and I just wanted to doublecheck here as I though they may involve serotonin increasing as well. If not,what do N-AC and L-Theanine do??? THANKS!!!

Thanks... this is what I was leaning toward. Just putting things over till we get back. Still bugs me that they want all this info and I have never even laid eyes on the psych.! We leave in a bit over 2 weeks. So this will give me more time to prepare the rest of the family for my abscence.

We have met a local therapist who YES, finally does CBT and daughter is to meet him in the next appointment. I also have a set of three appointments in town with a psychiatrist who supposedly does CBT AND SSRis. I'm not sure if he knows anything about PANDAS. I am overwhelmed at the information they require before even seeing the psych! (well the first one I met and like and then he gave me paperwork for the second appt. with her and I liked that) But this other one requires all of this information up front and how do I know we will even like him or that daughter might not like him, or that it just might not be the right fit? Is this how it is done everywhere? With other fields it is more the norm that a potential client can meet you and some things are discussed, but if it is not the right fit, no fees are taken. It is not even the fees that bug me, it is the requiring all of this personal info to someone our family may not even like. And we do not live in a large town either. As I mentioned we are going to Rothman soon and I am wondering about all of these local appts. I have set up. I'm getting cold feet about the local stuff, although I know she will need someone local to carry on with her when we get back. I was really hoping to compare these two and then decide for CBT. Thoughts? Comments? Experiences? THANKS!

My heart goes out to you~ big time. We have had two IVIGs and I don't regret it. Didn't get her to 100% at all, but still glad we did it. We still sometimes consider a third. I pray you get peace about your decision and that fear is dispelled.

Thanks Deedee and I hope that from your siggy line, there is peace in your home. I'm still going to put my vote in for RMH and let her know if she hates it we can look elsewhere as this is the off-season for tourism.... I have spoken with Dr's. Storch and Rempher now on the phone and they seem GREAT.

Thank you so much for the info on RMH. Looks like fun and a very worthy cause! Having hard time convincing her though. Wants more time alone and less social interaction. We'll see....

Thank so much everybody! I was so jazzed to see your messages, I booked flights. I can't believe we are actually going to go. So happy!! Now, where should we stay? What is Ronald McD's like? We are big into having quiet and privacy,so just the name makes me a bit nervous! Any good hotels, not too pricey and not too far away? GRACIAS

Also we will be seeing Dr. Marni Jacob for the CBT/ERP. Anyone have any experience with her? THANKS!

It looks like we are going very soon to the the Rothman program in Florida to see Dr. Storch. We were hoping to see Dr. Murphy as well, but she is looking booked. They want to schedule us with Dr. Rempher for the Murphy side of things. Anyone have any experience with him? We are wondering if we should go this soon or postpone til we can see Dr. Murphy too. Yet b/c this is the side that would prescribe SSRIs, I would imagine he would follow her protocol~low dosing and slow etc.. If we postpone to see Dr. Murphy, we would not get until JANUARY, unless there is a cancellation. OR we go in two weeks and see Storch and Rempher. Please any and all input!! THANKS :-)

I am ressurecting this thread b/c I was surprised there was only one reply. I had also read that St. John's Wort was also not for PANDAS kids. Anyone know of the details or personal experience either way? THANKS!!

Thanks OIVAY....but I wondered did your child have OCD? Does PEX adress that at all or is it mostly the tics etc...? THANKS!

Thanks for all the info again! I am so thankful for you all! I am looking into T and A....feels like deja vu because we considered this thoroughly over a year ago....but I wonder if it is a missing piece of the puzzle for her.

But what kind of doc will take themout it they "look ok." Do you have to explain PANDAS to them,and they look at you like you are crazy?

Keira, that's what I'm afriad of. The doc said there were no pits which would indicate a problem. Daughter never complains about a sore throat, but I remember chronic strep when I was a child. Had to get mine lanced before removal as I had almost a form of lock jaw, where I could not open my mouth they were so swollen...

Thanks again everyone...she does still have her tonsils. Someone looked at them last year and said they "looked fine.