minimaxwell

I have also heard great things about Dr. Bock. We use Dr T, I am so thankful we found him. He is the most caring Dr. He sends me emails at all hours of the day forwarding me studies he comes across that might pertain to my DD. he never stops thinking of his patients and trying to complete the puzzle. He is also very generously sharing his time teaching other docs.

i drove my DD crazy constantly making her drink for days afterward. where are you doing it? Will they push fluids the whole time? that helped us. Good luck!

I am glad you went with your gut. Too many lVlG's makes me nervous, I have heard too many horror stories about doing them close together . CVID is a different story. Have you thought about having a different PANDAS doc weighing in? My favorite is dr t.

I'd love to.

FUN FACT: Did you know that Albert did not learn how to tie his own shoelaces until he was nine, or thirteen?

Which ones do you order? I ordered Jarrow Saccharomyces Boulardii yesterday from amazon. ( I was running out of florstar and decided to save $$ now that both kids are on abx) I had the same thought but figured they wouldnt ship if it would get ruined and perhaps I was just being paranoid. I know I should rotate so I throw in some Culterelle sometimes and some Ultimate Flora 50 Billion. Then sometimes she takes pearls. Not really sure what I am doing and would love to hear what you all do.

Thanks so much , I trust and value your opinions always. they one thing that seems hard to kick is the massive fatigue,which makes me think LYME. Is it too soon to test for Babesia,Bartonella and erlichia titers? We have an appt with Dr jones in a few weeks. I made it months ago just in case--I really don't want to spend the time and money if it is not absolutly nessecary. First lVlG was 3/16, these labs were drawn on 6/26 BEFORE 2nd lVlG. She takes Augmentin 500mg BID, we can't do azith because it bothers her stomach. She took 10 days of Doxy after first lVlG just to cover for MycoP.

lGG Results:Negative lGM results: **23-25 **23-25 **31 **31 lND **34 **34 **39 **39 **41 + **41 lND **83-93 45 + **83-93 Sorry,if I have forgotten anyone. I am so thankful for this forum and the Uber smart Moms I have met here. All opinions and comments welcome. Thanks, Tiffani

lGG Results:Negative lGM results: **23-25 **23-25 **31 **31 lND **34 **34 **39 **39 **41 + **41 lND **83-93 45 + **83-93 Sorry,if I have forgotten anyone. I am so thankful for this forum and the Uber smart Moms I have met here. All opinions and comments welcome. Thanks, Tiffani

Who are you on a waitlist to see? Where do you live? Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him.

We are thinking it started at age 6. she was VERY functional for years. In middle school things got much worse,then better. One summer she was even able to go to overnight camp,seems like ages ago since she has been sleeping in our room for so long. Then the summer after overnight camp she was glued to me. Last few years have been the worst. So now the good news--she slept in her room the past 3 nights, no crying,panic or anxiety. All from the lVlG. We were joking about how last week on the last day of her treatment her roommate was throwing up in the next bed and she stayed in the room. That would have NEVER happened before. Still dealing with some intrusive thoughts and anxiety but it has only been a week. we are hopeful. I have heard some say the longer you are dealing with this the harder/longer it is to heal. then i have heard stories about older people who recover quickly after many years. I think the bottom line is they just don't know! If you can get your insurance to cover lvlg I would go for it!

I would go see an Immun ologist, have them run the lGG sub types. Send me our email and i will send you the tests to run.

Dr. Geller suggested the OCDI last spring for my daughter who was 16 at the time. (before we knew it was PANS) Dr. Jeninke was her Dr for 7 weeks. At the time Dateline NBC/Dr. Nancy Snyderman was going to be doing a one hour medical documentary on Drew and the OCDI. ( I think this is why Dr. Jenike was assigned to her.) We started filming but then the earthquake in Japan happened and all of Dateline's resources went to Japan. They asked us if we would postpone her treatment but we said no. Sooo.. off she went to OCDI. There was a time there where she got much worse, looking back it all makes sense. There were 6 people on her unit that were sick -- they were making her flare. She left OCDI in May2011. We got a PANS dx 1/2012 from Dr. T. So i have circled back with Dr. Geller and Dr. Jenike and shared our DD's progress. (70% better from lvlG). I am now working with them to build a PANDAS team at MGH. I think the OCDI is a fantastic program BUT it is an adult program. Minimum age is 16, most there were in there 20's,30's and 40's. The only intense program I know of in the Boston area is C.A.R.D at Boston University (yep,we did that too before we knew what we were dealing with) They do not accept ANY insurance,although if you qualify for a study you go for free. IMHO intense exposure therapy/CBT is not effective if the PANDAS is raging---but great to kick the remaining 10-15% that lingers.

@ allboysmom feel free to call me, I will help you navigate 508-667-0574,tiffani

Feel free to call me 508-667-0574. we are currently working w/ dr. Jenike and Dr. Geller to form a PANDAS team at MGH.-tiffani

Had a huge fight with the PED ,but I won!! 30 days of Doxy.

I agree with LLM,might help to do a Lyme test first. We did lVlG and got 70% improvement. Then she started slipping to about 60%. We repeated lVlG 4 months later. We are now less than a week after second lvlG and she slept in her room last night . Now that may not seem like a big deal BUT it IS. DD is almost 18 yrs old and is usually in our room. Seeing shifts already. we are lucky ,our insur. covered both times. Good luck!

I thought he had saved it(which was not engorged). When I asked him to go get it I heard "oh no!" Turns out he left it on the bathroom counter and it was no longer there. This kid is not the brightest bulb! So now I have 3 little tiny things in a ziploc, none are moving,not sure if they are tics or specks of dirt. He was bitten in the groin area. Which abx do you think I should ask for? I am nervous about doxy because he is going to camp and will be in the sun all day.

I thought he had saved it(which was not engorged). When I asked him to go get it I heard "oh no!" Turns out he left it on the bathroom counter and it was no longer there. This kid is not the brightest bulb! So now I have 3 little tiny things in a ziploc, none are moving,not sure if they are tics or specks of dirt. He was bitten in the groin area. Which abx do you think I should ask for? I am nervous about doxy because he is going to camp and will be in the sun all day.

My other child has PANDAS and I am nervous. I do not know much about Lyme. He has the squished tick, no blood when squished. Do I make the ped. give abx?

My other child has PANDAS and I am nervous. I do not know much about Lyme. He has the squished tick, no blood when squished. Do I make the ped. give abx?

@mdmom-are you a dr or from MD? who will be doing your lVlG? Would you mind sharing how they are coding it to get coverage, it may help others? I have heard it done as post infectious encephalitis and also as auto-immune encephalitis. we are lucky,we have United ,you can just say PANDAS.

Nausea and headache set in using motrin and Zofran Headache at a 4, nausea is worse at the moment.

We met with the Genetics team today at Mass General Boston. I had heard that a lot of PANDAS kids were testing positive for the MTHFR gene mutations. Sure enough my kiddo is positive too. They told us to stay away from Nitrous Oxide.

Cobbie, how is it going? Hope all is well.