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I'm so glad you guys are home Nancy!! I hope you guys get a chance to catch your breath, and heal a little bit!! A few years ago, my father with Alzheimer's was hospitalized for 6 weeks in a psyche ward, it was horrible!! The sweetest, most caring man in the world...an educator, a veteran, father of five, an all around person was given very little respect. I can't imagine going through something similar with your child!! It left a very bad taste in my mouth for the mental health community, and there resistance to treat the body as a whole. How did mental health become so separate? Our medical system is so unprepared for this rising trend in Alzheimer's, autism, pandas, or whatever else crosses that imaginary barrier between the mental and the medical communities. Oh gosh...this probably isn't making you feel any better!! Sorry...didn't mean to go off on something we all already know!! Like I said, I'm so glad your home, and you can look to the future!! Let me know when you are scheduled! I think we are heading for IVIG now. We had a beautiful three weeks with our son to reconnect, and enjoy him without pandas. He went back to school, and there was strep in the classroom. So he went backwards ever so slightly. Dr. L switched his antibiotic, and if it doesn't help we will do IVIG in a month. We might be up there at the same time anyway!! Good luck, Sarah

I am voting for 14 people. Do we have any idea what the voting numbers are for each project? I would love to see a running tally of the numbers. It drives me crazy that I can't see the numbers and compare.

Yes, mine is like this, and then throw in all the things broken during tantrums. At least I got new basement windows out of it!!

Just looked at the schedule...looks like all the pandas stuff is recommended for researchers. Will we be allowed into those sessions?

I want to try, nothing absolute yet, but I guess I better get on that. I will send you my email. Sarah

Ohh...Good Luck!!

Bumping one last time!! Thanks!!

Good luck!! She is very thoughtful! Really good at answering questions!

Yeah...I would like to know this too! We have been fighting off impetigo, and now he is complaining of a sore throat. He is on Bactrim and Augmentin right now. We have only had a very mild, mild setback so far, but I'm watching.

Bumping it!!

Yes, let me know when you go to Georgetown. I would love to meet up with you, and sit with your daughter some, if you like, so you can get a break!

I think I have officially contacted every branch of the family possible...so glad I come from a large family! Let's go!! My ds is standing over my shoulder and wants me to put a ninja at the end of this statement...so here goes... Good warrior symbol, don't ya think? Sarah

The local newspaper in my area is interested in doing an article on PANDAS, but they wanted some other local PANDAS families. Not sure if there are any? PM if you are interested. Thanks, Sarah

Stay strong Nancy!! We are here to help you!! Sending good vibes your way!! Do you think you might end up at Georgetown for the pex soon? I'm sure your mind is swimming...Try to get some rest!! Tell your DD hi!!

I'm so sorry! We will be praying for you! Tell her her friends from Dr. L's office are praying for her!! Sarah

Awesome!!

I'm sorry! It sure does sound the like the start of something. Vickie put it well...my heart sank!! Is it feasible to take her to see Dr. L? Can you do an initial phone consult with Dr. L? I'm not sure how that works. Maybe if you call up there and speak with Andrea she might have an idea on what Dr. L could or would do? Maybe you could find some literature which emphasizes how common it is in family to take to you ped? I know it probably isn't much comfort right now, but at least you know what your dealing with! Good luck!!

I often wonder how many of the people who tell you not to "enable" the OCD patient have ever actually lived with one, and truly understand what it is like. Peacemaker is exactly right!! Anyway...I have done both tough love and soft love, especially before I knew what was going on, and I always end up feeling bad after the tough love. And it does often lead to increased rage, etc. Of course I wish I could always remember that little fact when I'm in a situation. Somewhere there is a fine line... What I think really helped, and I'm sure it is not the most popular choice, but I had the psychiatrist put him on Paxil 10mg. I really felt he needed the help getting over the initial hump of the compulsions, and then we could build upon the different therapies with the behavioral therapies. I remember thinking he can do it, he just doesn't think he can do it!! Luckily, the smallest dosage seemed to help with that "hump" and hopefully, he won't have to be on it to much longer. I was very nervous of his reaction to SSRI's. He had had trouble with Prozac at one point. But, the psychiatrist assured me they can react differently to different SSRIs, and I decided it was worth the risk and to just watch him closely. I really do think it helped him, until he realized he could help himself, so I'm glad we did it, along with the rewarding. One thing that happened quite by accident, was my son saw a picture of himself doing one of the things he couldn't do at all, until recently, eating pancakes with sticky syrup. He saw that old pic right before bed, and woke up the next morning requesting pancakes with syrup. That was a huge turning point! Well, sorry you are having a rough day DCMom! Thinking about you!!

We have BC/BS FEP (federal), but because of the service area of the doc/hospital BC/BS Maryland handled the claim.

We got denied for pex after peer review. For the peer review, I wrote a letter detailing all my ds10's daily activities of living, and how they were affected. Basically, that he couldn't do anything. I think we got some old, totally uninformed doc who either ignored the letter (which was pretty detailed and sad), or just heartless. This was all going on during the 2 blizzards on the East Coast, so I had ample time to leave numerous messages on many answering machines for people who were snowed in. I googled the doc's name, in order to find some way to contact him, because of course the insurance companies don't make it easy to contact anyone, and they won't give out emails. I found his name on some network site, and I think I sent him an email that way. Basically, I stalked him!! I even had an email ready to send his insurance company's media relations. Of course, I was still hoping to get somewhere playing the "good cop." Like I said, all during 2 blizzards with a "9 yr old infant"...pretty crazed! One week after the peer review denial, I finally got a proper number to leave a voice mail for the old doc. I left a message where I basically used the word life-threatening in every sentence, and ended the message with something like "it is life-threatening, and as long as you are willing to accept responsibility for that." Now within the hour I get a call from the insurance co. saying the pex has been approved. However, an hour after that, I get a call from someone in the "old doc's" office saying the pex had been denied from the week before. So I have no idea exactly what happened, and what worked! It was even funnier because I left the message on a number with 202 area code, got the approval call from a 301 area code, then got the old denial notification from a 703 area code. What I think probably happened, as much as I would like to take some credit for my "life-threatening message", was the nurse that helped us before the peer review. I have a feeling she actually read my letter, and when it got denied sent it to another doc who was a pediatrician, or at least who had some knowledge of pandas. She seemed to know about it and mentioned they were getting more and more requests. I do think the letter detailing the daily activities of living helped, or helped me to break the situation down so I could express it better. The doctor's office did recommend using the phrase life-threatening which was totally appropriate at the time. They also recommended getting a case manager from the insurance company. This person is supposed to act on your behalf. We are set up with one now, the pex approval came through before she could help, but we are set for the future. Well this probably doesn't actually help much, and I wish I had some sure-fire advice! Good luck! I'll be thinking about you guys!!

We are at 1:00. Too bad!

Funny...we will see her Tuesday also. We are about 7-8 weeks post pex. My son is doing well...continues to progress. Hoping it will stay that way!!

Yeah we put the pills in pudding, yogurt...whatever he is feeling like.

This is all extremely interesting! My dad is end-stage Alz., and from my perspective...daughter of Alz., mother of PANDAS, there are a lot of correlations. Maybe not so much when you get down to the medical science of it...I don't know about all that, but it makes me wonder. Especially, when I am starting to put together the genetic aspect. My mom and I have recently put our memories together, and we both have vague recollections of me having what was probably a PANDAS episode. And one of my Dad's sisters made us wonder about him. And as far as my Dad's health as an adult, he is the patient who did everything right and still got Alzheimers. Now knowing that a PANDAS treatment is being used for Alzheimer's patients, makes me wonder if there is a predisposition to both. Who knows? I'm probably way off!

No, but I'll check the site.