dcmom

fixit- this is so hard. I feel for your position. We had it easy in that we had a clear pandas with strep onset, and no tics. So we did the abx and the burst, and ultimately pex. I don't know Dr K, but think he has dealt with this a lot, and is very straight forward and realistic in what he is telling you. I do think a long term course of full strength abs, slowly tapering while watching symptoms, to a prophylactic dose is a good idea. I don't know if Saving Sammy dosage is necessary. But, I think his opinion (i am guessing here), to which I would agree, is that this is really autoimmune in nature. So he isn't concerned right now about a lingering infection, but that autoantibodies are triggered with immune challenges. So his ultimate goal is to get the ivig to disrupt this autoimmune process. I think you need to look at the risk vs benefit, and unfortunately, look inside yourself and go with your gut. Antibiotics are a good idea, so I would start with that. Get the tests he requests, and to give you peace of mind, have the lyme test done (someone on the forum recommends a certain test that is the best- others are not so sensitive). If the steroids really make you uneasy- tell him that you just can't do it. IVIG- well that is the current "gold standard". You may have to pay for it out of pocket, and there are NO gaurantees. But, if things are bad enough- then you will ultimately decide to go for it. It all comes down to possible risk vs possible benefits. One of the hardest things about pandas is, nothing is "for sure". I wish you the best, keep us posted.

Shaesmom- thank you! and SO happy for you. Just a quick question- did shae have ocd, and if so, is it completely and totally gone every day, or does she still have some mild lingering issues? thanks.

I can only add my experience: negative for strep at time of delivery, 2 c-sections, 2 robustly healthy babies, robustly healthy kids, both have a particular strain of strep last year, both pandas now.

Three times, I would pick Julia up at school- she would look tired. She would have an uncharacteristically irritable afternoon, be resistant to school work, and the next morning have some difficutly separating and going to school. This may last 1 to 3 days. Finally I would get an email from a mom in her class that a child had strep. Julia would literally be better the next day. It would be clear something was going on with her- but NO WHERE near the level of an exacerbation. I did pull her out of school for strep in the class once- because she was really feeling out of sorts. It really seems to tire her out, more than anything. She seems to be fine if exposed to colds/flus etc. She did relapse when she HAD the flu (probable H1N1)- this was a serious relapse, and we brought it under control with steroids. I do think- but am not definate yet- that her reaction to others with strep is calming down. Will keep you posted!

Wendy- My dd Julia has had the exact same experience about 3 times since we started with pandas.

When my daughter was diagnosed with pandas, I reached out to my neighborhood via our community listserv. I had several emails and phone conversations with a mom in the area, whose daughter was diagnosed with pandas, and was in Swedo's initial study. Her daughter rec'd plasma pheresis at the NIH. She remained on antibiotics until she was through puberty (actually all of the 4 kids in the family remained on prophylaxis until then), and from what her mother said- she never relapsed and had a wonderful childhood. I hold on to this story- since I heard it directly from the family. Sigh.

Hi Ruby Red- Stay calm. Be prepared for your ped not to know anything about pandas. Some kids, if caught early, and treated aggressively can make a full recovery from pandas, quickly. I would be as aggressive as possible with antibiotics. Possibly try a course of clindamyacin followed by a month of daily zithromax. Many kids on this board are on daily long term antibiotics, others on prophylactic antibiotics. You will have to proceed cautiously. Good luck- and keep us posted!

My daughter has had 3 occasions when she clearly reacted to someone else having strep. All three times, she had a rough day or two, I would start thinking "oh no- I hope this isn't an episode"- the next day I would find out a classmate has strep, and then she would be fine. It would usually be a 3 day episode, with mostly irritability, fatigue, and overall not looking well.

Josh's mom- I know it hurts, but none of the doctors that will help you with pandas take insurance. I am in DC, and none of the good doctors her take insurance. Dr Latimer's office will submit for you, and if you are eligible you will be reimbursed at the out of network rate. I have to tell you it is so worth it to see her. You will have to bite the bullet and pay. I am sorry to be blunt- but you and I are so fortunate to be local- most of the parents on this board fly across the country to see their pandas doc, and pay out of network. Her follow up visits are much less than initial consult- she spends A LOT of time with you, and if it is pandas, will help you to get results. Hopefully you won't need too many appts.

Harmony- I would say no. My dd had a positive culture at onset. We did titers once- they were normal. I was told early on by a Dr that worked with Swedo not to bother with titers- that they don't correlate with symptoms. It is a lot of bloodwork on a usually anxious kid for no gain. I try to limit bloodworks, and use the bar- if this is not going to affect our course of treatment, then we don't do it. (of course, early on, some things need to be ruled out)

Gat's mom- We have gone through the food refusal with both girls. I don't believe either has contamination issues (although one MUST check expiration dates). Their issues are fear of throwing up, just plain old not wanting to eat, nothing sounding good etc. I have found just making stuff and putting it out for them to graze on the kitchen table is best. Even today, my younger one, who is for the most part in remission right now- had a tough lunch time. I asked her what she wanted- NOTHING sounded good to her. In the end, I made up a whole tray for her with about 6 things I thought might go over, and she ate well. Sometimes making the decision, when nothing is ideal, is part of the problem. If he is interested in smoothies or milkshakes- they can be made high calorie and nutritious, and may be more appealing since they are in a sweet/drink form. Good luck- eating and sleeping are the WORST, because you know they can't heal when not getting enough of both.

Wornout parents- I am so sorry for your heartache and confusion. I wish for you answers and healing. Everyone else- I certainly agree a parent MUST go with their gut, and it is ALWAYS smart to get a second opinion, BUT you must all remember Dr L is one of the good guys. She goes to the mat for pandas EVERY day. She is extremely knowledgeable, compassionate and credentialed. She is the ONLY dr that offers PEX, IVIG, ABX, and steroids when indicated. She spends at least 1.5 hours with a new patient, taking a detailed history, asking thoughtful questions and examining the child. I can guarantee she is familiar with the many forms pandas takes. While I am not saying she is infallible (who is?), I am saying we are doing a parent a dis service by telling them Dr L is wrong, based on an Internet history, and our "pandas colored" glasses. (not to mention biting the hand that feeds us). I love this forum, but hope that in the future this negatvity can be spoken through PM.

abbe- my kids HATE blood draws (that is acutally an understatement ) I have an unwritten policy where, unless the blood test is going to alter our treatment route- I do try to avoid it. Doctors don't always understand how hard it is for the kiddos and the parents, and they do like to see numbers. That being said- some things have to be ruled out and tested, and certainly mycoplasma pneumo would be one. I would get out your chrystal ball and try to figure out what type of testing will be needed in the near and somewhat further down the road future- so you can do one stick, and that is it. For my kids the pre and post anxiety are MUCH worse that the actual moment the blood is being drawn (although that is no picnic, either). Good luck.

Dut- good question... so, would this be tax decuctible? would there be a receipt? exactly what type of expenses does the money cover? doctor fees? airfare? meeting room? food? where would the donation be directed? directly to autism one? how would it be directed for the pandas think tank? possibly a one page write up, including some of what you said in the post, along with some more details (answers to above) could be done. We are tapped out right now, but I am thinking grandparents, and dh's company

Amy- thank you! That is really helpful. Did you get the ivig with Dr K- or at his dosage? Was it one time?

I would like to add that I am very interested to see if anyone responds. I realize the possibility that those parents who receive IVIG, and have complete success, may not return to our little family/forum. I implore those who are doing IVIG now- to not forget us. My dd had plasma pheresis in October, and is doing very well since. She is, however, not cured. My best case scenario hope is that over time her pandas reactions diminish- making this disorder very manageable. I have made a promise to myself to remember to update the forum on our success (fingers crossed) every 6 months to a year. PANDAS has made (best case scenario) a lasting imprint on myself, my dh, and my parents- hopefully not so on my children.

So- what are the results. SF Mom- I know things are improving for you. Coco and Keith and Elizabeth? I am really interested, as if we relapse post pheresis, we will probably head toward IVIG. But, I have to say, until you have remission for over a year- its still all unknown....

Gat's mom- You can find the workbook on Amazon. It is really great! It has been helpful for my 9 and 6 year old. It REALLY breaks ocd down in a simple matter of fact way. It helps them look for ocd thoughts and gives them tools to fight the ocd. If anything, it has been helpful to me to develop a language to use with them. We did have a helpful psychologist- but I have to say, this book has been more helpful.

Wow- my older daughter has always been an amazing speller- but I have been noticing a TON of mistakes this school year. I have put it off to be careless, as she is getting older- but now I don't think so. I was asking her earlier today, about her ocd thoughts and worries. Then I threw in if she is having any issues academically.... she answered "maybe spelling". Sigh.

oh my - the days of the week. I spent the entire summer trying to teach them to my dd (age 6), with no luck. Literally, the week after pex, I reviewed them with her once- and she knew them. I couldn't believe it- tested her again and again. I think it might be a short term memory thing?

no- the cold is gone. It was a few weeks ago, and she was to the doctor for it to rule out strep, of course. I think she is just so reactive now, that it stirred her immune system up. She is on daily full strength zithromax.

The sister who had pheresis is in about 90% remission. It was a miracle for her. Hoping, of course, that she stays that way. Caroline has been on daily zithromax. Plasma pheresis makes sense for us. We live 15 min from Gtown, and it worked for her sister. We are not opposed to IVIG, but would rather do the pheresis because it doesn't include a blood product. If things go south for either of them after pheresis, we will certainly look at ivig.

Thanks everyone- this stinks! I am still holding out a bit of hope for some relief in the next couple of days....Last time was so great! SF Mom- I am ready to take her in tomorrow for plasma pheresis (it was a miracle for her sister)- but we have some insurance issues. They still haven't paid- somewhat of a post denial pending medical proof.... I need to get that resolved, and then hope for them to pre approve another. But- I can't take this much longer...

DD age 9 is being treated for pandas. Her ocd has been getting worse since a bout with H1N1 in November. She did a steroid burst in December- and she did beautifully. It took about 2 weeks, but she was back to herself 100% (eating, sleeping, no anxiety, happy, etc). Then two weeks later she came down with a cold, and pandas came roaring back. It is probably worse now than ever. She has been on the steroid burst for a little over 2 weeks- with no improvement. Any thoughts? Help!

I really hope your insurance comes through. I know how you feel- my dd (age 6) had pheresis this fall, and we are now considering it for her sister (age 9), but have to get through a lot of insurance hurdles. I will say, for my dd, it gave her instant and total relief from all of her pandas symptoms. It was a miracle. It was not a cure, she had a relapse a month later post H1N1- but with the FAST use of steroids, she has now maintained a 90% remission for over 2 months. Every day I feel she is stronger! In my opinion, the pheresis is a stressful few days, but unbelievably worth it compared to what these kids go through. Advice: Hmmm- first of all, feel free to PM me with any questions you have. I assume you are staying at the hospital with him? It isn't luxurious (rather bare bones and old), so if you could, I would consider bringing yourself a blanket and maybe a pillow, and flip flops for the shower. My dd was a really picky eater- so I brought some of her favorite foods- which was helpful. Make sure they run an IV of fluids at least the few hours before the pheresis, each time. They were a bit haphazard with this for us, and when they didn't, she started to crash and we had to halt the procedure to give her fluids. Ask them if they can do her vitals and blood test (or whatever they need) at 9pm and in the morning, so as not to come in during the middle of the night. Only the nurse the last night thought to do this for us. Calcium is good for them- so while you are there continue loading up on the milkshakes. They have very useful child life specialists- make use of them to entertain your son during the pheresis, and if you need a break. Although the doctors didn't request it- I kept my dd home for 2 weeks after the pheresis. If I did it again, I might even keep her home longer. She was very pale and tired after. But happy. Good luck- please keep us posted. I used benadryl for a few nights after the procedure to get her to sleep on time.