rockytop

I cannot search for it in the forums. Everytime I try- typing in IVIG kicks it out- as search words have to be longer than 4 letters...... So, My 11 yo is having IVIG for the first time (had pex over 3 months ago). Any suggestions on how to get through it well? does predosing with advil or benadryl work? If so- how do you do it? (how many hours/ day before?) how does the pre-hydration work? how does it help? anyone who has had it at g'town-- do they medicate with anything for nausea or benadryl or steroids there? Please any advice is so appreciated!! If this goes poorly, I will probably lose her cooperation in any further intervention. She is not happy about this Pex helped so much & she admits it- but she was so terrified and this is not as scary, but still... Thanks

Thanks, tenacity, for posting this. About a year ago, a family memeber sent me a link of a video young woman with NMDA encephalitis- as her presentation was so much like my daughter's. In fact I meant to ask our PANDAS doc, if possibly this could be the factor in my child's illness- as we really have no proof of strep. However, when daughter # 2 had 2 clear cut PANDAS/strep episodes, I just kind of moved on from this being a possible cause in my first child's sudden onset psychosis and other symptoms. I will definitely revisit the issue with our neuro next time. Glad to know treatments are similar-- now, if I could only get her to accept treatment! Thanks again for bringing this to mind. I will be saving it to my PANDAS file:)

You are on your way to getting your girl better! You are in great hands. So glad you have some answers and now on to treatment! You can go to bed tonight knowing you have a path now to follow. wonderful news!

Wilma-- go for it! in the conditon my child was in anyone in their right mind would have EVER given her prednisone. We started seening an improvement just before 2 weeks- though we were tapering down- so maybe the high dose for the first week would have done it ? It was not a cure- but it was unbelieveable how much it helped her. I know it is nerve-wracking giving a child in this condition anything at all that will ramp them up- but please try it. I second tampicc's advice about just getting throught this- whatever it takes. Yes, nutrition and sleep and education are important-- but getting that prednisone in her however you can maybe more so. take care and good luck!

I have had 3 kids on prednisone for PANDAS or presumed PANDAS so far. 2 for severe OCD and moderate tics; one for mostly tic and some fears All showed great improvements on steroids, but not until 10 days or even 2 weeks. HANG in there!

It is called pill glide. We bought it at walgreens There is another thing called spray & swallow or something like it online It is a spray- have no idea what is in it- but it makes your tongue and throat slippery and you can spray it on the pill or capsule and it does not get stuck on the way down. It was about $7 and was located by the products that you use to cut tablets and medicine administration tools. It tastes good, too! Hope this helps someone! It helped my daughter.

wilma, I am so glad today's appt was a step in the right direction. Your girl reminds me of one of mine, and I will tell you- steroids did help her ALOT. For while atleast (months!) Sounds like you are heading in the right direction now. What a relief. Been thinking about your appt today and so glad to hear about it. Any time frame on IVIG?

does everbody get bloodwork done in preparation for IVIG? like immunological panels? we are not seeing a immunologist, so maybe that is why we have not done any of that. ANY SAGE ADVICE??

I cannot get a "for sure" answer if my insurance (CIGNA) will cover IVIG for my child. Weight is about 120lbs. My insurance does not require pre-authoriztion for IVIG (the ordering doctor's scheduler checked that part out) so I really do not know how this is going to go. If we go there & ins denies it-- I am wondering: 1. general cost 2. do they cut any breaks if you ending up owing them? thanks in advance for any advice

I am asking for a friend in the WV area that is near OH . i hate to ask specifics on a doctor publicly- you can PM me if you do not want to post. daughter (9, maybe?) having pretty severe PANDAS that appears to be worsening. Dr Ali Carine's name appeared on some PANDAS doc list somewhere-- does anyone have any experience? Or anyone in the area- fairly close to Wheeling, WV, I think. She is an integrative pediatrician, I think they have strep in 2 sibs and are working on tonsillectomies and abx. anyone have a recommendation?

When my daughter was being treated for lyme with IV abx- she had a PICC and recieving daily rocephin (5xweek)- they orginally said she would do rocephin for a period and then IV zithro. alternating to get lyme & then strep. However, we never made it past rocephin stage- she did that for almost 3 months and then refused to let us access her line. so our LLMD- was prescribing IV rocephin for lyme & IV zithro for strep hope that helps and hope you are hanging in there this morning.

Just want to "ditto" what everyone else has said. Sorry to say- but this behavior sounds so suspicious. I have 2 daughter for sure with PANDAS- both present differently- actually just like t.mom explained her situation. a third daughter (age 5) has mild vocal tics for almost a year and then fears, screaming, difficulty with clothing and yes, saying she wanted to die. I thought- there is NO way this could happen three times. Our PANDAS doc did not blink an eye and after a month of prednisone- no tics, no fears and she is happy again. NO strep for sure- but who knows. My point is that all 3 presented very differently. Yes, your doc may not believe you-- do you have video? that always helps! Do you have a doctor that specializes in PANDAS? ours has many sibling patients.

LYME/PANDAS/ DR Latimer pt chiming in here.... my child had confirmed (labcorp!) lyme and PANDAS (well- no confirmed strep-- but it all fits)and Dr Latimer is receptive to it. My child was diagnosed with lyme before we saw Dr. L. Dr Brian Fallon studies lyme & OCD specifically and she is familiar with his research. Unfortunately he does not see children (or did not when I checked a few years ago) for my second child who has strep-confirmed PANDAS she asked if we wanted to test for lyme and we declined. so that is not very helpful. I think she wlll definitely test for it like eljomom said- but she is not going to send him off to a doc that will find lyme in every pt. he of course, is free to do that, if he wants. I know someone else who saw the above mentioned ID doc at georgetown and had the same experience- cdc rules only and those bands will probably be ignored. this is a hard call for your brother. Good Luck with the decision We went to a GREAT LLMD in Fairfax Va (a rheumatologist) who really helped us with the lyme and understood PANDAS. She told me that we had to beat the infectious part of the disease and then deal with the auto-immune component. SMART lady:) I will be happy to give more info if you PM me.

This study was done by testing IgE and IgG levels for food allergies. There was an elimination diet (water, rice, pears, potatoes) for 4 weeks or so and then challenging the "responders" who showed response to the original labs. I was able to see it and I skimmed the article. I cannot link to it here but I was able to look at it. I only skimmed it but I think this is a fair assesment. I was hoping it was a feingold thing-- I am thinking of trying that for my seemingly hyperactive asthmatic preschooler and vocal ticcing 6 yo.

This is such complicated issue. I will say our LLMD, who had confirmed lyme and babesia through a "regular" lab, said that if we went through with IVIG for that child- that the timing of resuming abx (for lyme) post IVIG would be CRITICAL. This child never did any further treatment for either condition and is still quite ill (only psychiatric problems and some tics)All her physical compliants from the lyme & babesia are gone. Thank the Lord! For my other duaghter with PANDAS, who had pex 2 months ago- we decided not to even test for lyme. I imagine down the road, if she relapses and is found to have lyme- I will kick my self (or worse) for not testing before pex- but at some point you have to put blinders on and just pray. so we did and still do and so far, I am more than pleased with the pex progress. I kind of got off-topic (sorry!) but I wanted to chime in that our LLMD seemed concerned about possibly doing IVIG with positive lyme. She did not seem so concerned about, pex, I do not think. She also was considering Enbrel (one of the so called "biologics") to treat this. Praying for you, T. MOM!! our LLMD is a wonderful rheumatologist in Northern Virginia- an extremely knowledgable, sympathetic and kind doctor. of course- does not insurance:)--

I wanted to let him know that someone hijacked the thread under general discussion with some very inappropriate posts! Also- if you are reading this and your kid is at a point where they can go online- send them to his site-- it is kind of quiet, but my daughter checks it nearly every day or so repsonding to email messages from kids on there. She really looks forward to it- it is nice for her to know she is not the only kid with PANDAS.

We are thinking of trying the feingold diet. any devotees have any advice? this is not too big of a leap- we eat pretty well now - but there is definite room for improvement! We will be undertaking this in a household of 8 kids. wish me luck Where do I get liguid zithromax that is not pink? I am seeing so many tics from my 3 PANDAS children- I am wondering if Tourette's would fit in their "diagnosis" box, too. Maybe it is all one big happy disorder

I am essentially 1/2 Gaelic & 1/2 Garlic (I love to write that!)(irish/italian if you cannot figure it out:) So kids are about 1/4 irish; 1/4 italian maybe 1/4 german & 1/4 english.. lookng at family history, paternal grandmother had a very bad year when she was aorund 10 or so- that prevented attending school and was a "blur"-- got better when her tonsils were removed.. PANDAS in 1960, maybe? We are unable to get any elaboration on symptoms, sadly.. but leaves us wondering. Also, the maternal auto-immune history that Dr K has recognized, is very strong in my ITALIAN (and german) mother's family. Crohn's, RA, temporal arteritis interesting thread, certainly

Dr Latimer is also checking lyme (igenex) from what I hear. We go to her for 3 of our kids so I am obviously biased:)

$30K !!!!!! cheaper than some cars ! but the real deal is that my daughter who recieved it- about 5 weeks ago-- is definitely doing at least 50% better. I would say even more, but she says 50%- as only she knows what is going in her head. She is doing schoolwork again, playing, smiling, going to sleep at night with tears, cooking (her hobby), taking her zithro & willingly going to a psychologist for CBT! just read my insurance EOB & thought I would share. Now if I could get my other dear daughter to cooperate....

I sent one also-- if anybody hears more on that- passs it on please!!

Just wanted to ditto what everyone else said- Hopkins was not really worth the $ (their psychiatry service did not take my WONDERFUL insurance!) and we paid $700 for their eval! YIKES I think some individual docs there may beleive in PANDAS or PITANDS or something along those lines-- but as an "offical" stance- nope- do not waste your $ time or child's effort there I have heard the same about children's Please- take the $ and go to Dr L- one daughter just had pex & we are so happy with her. You can PM me if you want more info Also- docs who are willing to "think out of the box" are not likely to be jumping through insurance hoops. Just my $.02

Where is your brother?-- we have seen Dr Bita Arabshahi (in Fairfax) she is affliated with INOVA. We have seen her with one of my PANDAS daughters on a non-PANDAS issue (enthesitis- but my daughter is HLA-B27 positive, so we are watching out for any progression to something toward AS) I have no idea her feeling about PANDAS- but she was very kind to us with the joint issues-- maybe she is geographically closer. as soon as I can get my daughter to go back to her for a follow-up, I will approach the PANDAS issue with her- last time we went this child was not affected with PANDAS and I did not mention my older child. Hope that gives you another name to check out. good luck

we tried it very briefly and it seemed to work for her OCD- she refuses any meds now- but if she took any meds- i would push that one first! we have CIGNA (we are in VA) and they paid for it

I may have even read this on this forum- though I think I read it in a book. It was written about autism, but so very easily fits PANDAS. I read this 2 years ago and have kepts its message close to my heart. I truly was in Italy- I had the perfect little family (7 wonderful, patient, helpful kids!) and now not even 3 years later, my world has crashed down- I have 3 children with PANDAS now- our 8th child has since been born and I look into her sweet little baby eyes and wonder if her time will come. I try not to dwell on it, but you cannot help but wonder. I try to remember that this is not where I imagined we would be, but we are all stronger for it. and better, too I think. I would erase it in a heartbeat- but anyways- our children are wonderful how they are (though treating PANDAS is the way to go!!) and this essay really knocks that fact out the park! I do not know if my children (one of them at least) will ever escape this paralyzing OCD, but life is not always our plan, but beautiful and precious nonetheless Hope someone gleans some help from this essay Welcome to Holland I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this… When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. Written by Emily Perl Kingsley