T_Mom

Hi Wendy--Thanks for the reply. I just want to clarify for anyone who is new to the board, that when we consulted with Dr. K he recommended a 5-Day high dose of steroids to essentially see if our child would get better. He uses a high dose burst for, as you said, essentially a diagnostic "test" of Pandas (basically inflammation.) This high-dose burst was also recommended by another neurologist who administered the dose. TMom

Thank you!

WE NEED TO GET PANDAS on 20/20 .

This is good news-- and the results may provide additional insights. Leckman/Swedo--

My own sense is that the antibiotics are having an anti-inflammatory effect and thus the results that we see -- (decrease in Ps symptoms, etc.) Seems that Leckman would be an ideal candidate for helping--What an opportunity!

Aubieirish--Welcome, I am so sorry you have been going through this experience. This is a path I would not wish on anyone. You have found a wealth of info. here though--and I do hope it will be useful. I am sure you have seen them--but at the top of the Pandas forum page there are a number of "helpful" threads that are resources for us all. Also, the www.pandasnetwork.org website is a wealth of information-- All the best, TMom

Full strength Augmentin--right? It took time for our d to come back--the age regression issue is not unusual. Many of us have seen that during exacerbations-- I am so thankful for the blessing of your child being better--may it continue.

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Hi Worried Mom-- I want to add--that after 3 months of Amoxicillan (full strength) my older d was back to about 85% herself. However, she was still have difficulty with school, attention, and mild OCD (and mild ticcing.) When we observed her plateauing for about 4 weeks straight ( with no evident weekly progress) we tried a strong steroid burst. The steroids had such a dramatic positive effect that her teacher called us that week saying that she was "seeing" the child we had been telling her about for the very first time--(this was April in the school year.) Prior to the addition of the steroids the teacher had been using her own OCD checklist to record our d's behaviors! The obvious behaviors included: putting her coat on and off multiple times, turning around multiple times before sitting down, circling the room or desks, writing and rewriting, etc. etc. Thank heavens for steroids! We have used them twice with our d in the course of the 2 years. She continues on full strength Amoxicillan--over a year now.

Thank you Sheila for starting this thread-- Hats off to you Lynn--fantastic job today... You put us in the spot light, and I thank you, thank you. Please tell Lauren that Pandas parents and children thank her for going on tv on our behalf--one gutsy move for a little girl. I heard the "story" of Pandas being told in the clip -- OCD, ticcing, mentioned...Thanks to Dr T!!! He clearly covered the various aspects of Pandas-- What a great thing to have Dr. B on there with Lynn this time--showing two doctors validating Pandas (was that a 3rd in the video clips? Hooray for the TODAY Show for putting a face on the illness. Keep up the good work. T.

Dr.T-- Have you considered establishing an online journal? This would (perhaps) be readily accessible to all-- Thank you again for your work on this--

After dealing with over 2 years of angst now over the "do we" or "don't we" decision re: more aggressive treatments... I come to the conclusion that for each there may be a time of decision at which point we must choose to do something that makes us uncomfortable. For us, the ( in our opinion, very benign) steroid burst was suggested by more than one doctor early-on--and we were too cautious, I was afraid, and waited too long (a matter of 2 weeks.) When we did it, it was miraculous in effect. In our d's case we then had to grapple with what to do next... I learned that I was not comfortable with doing nothing--My line of decision was that as long as there was obvious progression week to week (albeit slow at times) but as long as there was a lessening of symptoms we would stay-the-course. If something changed, we would seek another avenue.

Sharon--our d has been on full-strength Amoxicillan for over a year--that has been effective for her. It took time, but we saw week to week improvement on long-term abx-- all the best as you pursue help.

Great to hear more doctors are being identified who are helpful with Pandas-- If these doctors are not already on the list would you be willing to add them to the list of doctors we have found to be helpful (LOCATED at the top of the forum page, as a helpful page--) Thank you!

Thank you! What a nice study to add to the file to take to doctors!!! Great!

I want to add here a note re: our family's experience with Dystonia, in case this might be of help to someone. My husband's mother has a very rare genetic based dystonia which, it is believed, both her Father and Uncle had as well (Norwegian descent.) Onset for my mother in law was in her 20s. She is very affected (walks bent over with arm crutches--wry neck, twisted back, etc.) The family believes that it was after the Spanish flu pandemic (1918) that both her Uncle and Father were affected and first "came down with" dystonia-- Jump to 2010. Both of our daughters apparently have Pandas. (Sudden onset, severe symptoms alleviated by Pandas treatments.) In exacerbations they have OCD issues (differing presentations, one VERY severe OCD with mild ticcing, and the other moderate OCD with severe outbursts and raging.) In both it had a sudden and unexpected onset. Both children respond positively to antibiotics--and steroids. One has been on full strength antibiotics for over a year--and has had two steroid bursts. Our other d is on Sammy-dose of Augmentin--and does well with it (ie., obvious improvements.) Have you tried full--on antibiotics for a lengthy period? We found it to be very benign and incredibly helpful.

Joan-- Just like there are pockets of expertise around the world on autism, there are different pockets of expertise on Pandas issues--and we each only know the ones we have seen. The listed Board members are well respected in their work and most likely known by the founders of the Board. I would guess that any of us have (hopefully) a small list of people that we might invite to be on a Board and I strongly doubt we would all agree!--for one reason or another. I am thrilled that Pandas is "more out there" then it was two years ago--but we have a LONG way to go folks. The more it is in the news, in the public eye--the more we are willing to put it out there--to tell, share, be honest about our experiences, the more likely it may, just may, gain the attention it so deserves. There are a handful of people who have been "out there" helping others and pushing Pandas into the face of the public eye, as well as putting it in front of doctors time and again--I applaud each and every one of them, as I am sure you do too-- Let me add--this new Fact Sheet on the IOCF website is FAR from comprehensive, and I believe it to be downright misleading on some VERY important points which have already been established in the research. Having said that--I can only hope we each might take the time to write the Director of IOCF then and complain directly to him. Thanks for bringing it to our attention.

Good!!! Sounds like you have marching orders from Dr K which hold much promise at this point-- Augmentin XR twice a day, so a total of 2000 mg, is what our 65 lb. child is on, and it helps. Be religious about the timing of it and give with food to avoid stomach upset (you don't need one more thing to contend with--) I hope and pray this turns around for you.

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My heart aches with you -- I can only imagine, and I know your heart is breaking. I think you have gotten some excellent advice here--from the forum. Your dear son, and your entire family is going through the worst of it. I have nothing to add but that I will be anxious to hear another update tomorrow, and keep you all in our prayers. I guess I would say (to us all), keep calling and demanding, this is your child suffering. You have done a GREAT job getting to Dr. K and you are on a path of trying to recover--I'd just encourage you to not grow weary. Call and demand. I 'd continue to try to reach Dr. K. asap and get him to call the hospital--getting a strong dose of an antibiotic to try asap is worth a try--IF it is effective then that would provide support for IVIG, one would think, as it may be anti-inflammatory effects, could still do steroids later. (If you use Augmentin, I would use the Augmentin XR. We had good results with that, as compared to regular Augmentin.) Your son's story reminds me of the interview Diane Rehm did yesterday on NPR with the woman who wrote on "sleeping sickness". The author noted that in children, the sleeping sickness encephalitis often ended up getting them institutionalized in the early part of the century for raging behaviors--when they should have been treated for brain inflammation. The interview is online and worth listening to--similar issues with children and behaviors as with our Pandas children. Hold steady--Bless you. http://wamu.org/programs/dr/ click on the "Molly Caldwell Crosby Asleep" for the online recording March 2, 2010

I am so sorry--that is so tough, especially at the upper grades-- We had one sympathetic teacher on-board last year and that seemed to help (though others were not.) I hope it passes quickly with a solid turn-around that lasts--

I am so sorry--times like this are pain and agony for all--child, parents, and siblings. Talk about stress... I'd agree that school, when a child is sick, needs to take a back-seat. If he is suffering, it is real and for right now, the key thing is getting him well--as you pursue his health, stress only takes away from the healing need for peace and rest. When our d was going through the *&% of last year her immune system was so obviously weakened as she got sick, time and again...3 times in the fall. Each time it got worse (OCD/mild ticcing.) Let the school issues go--all he can do is all he can do for right now. Our d went from A's to a few F's and back to A's...over the course of a year. I sure hope Dr T can help you--don't wait for an email, CALL and get that prescription refill. Is it helping? We have had good results with Augmentin, Saving S.-dose strength for our 65 pound child

Does Anyone know Dr K's thoughts on the Cunningham results? Does he see those as indicating Pandas ? ie., the need for treatment? -- Thanks.

If someone knew for sure we might all be on some other forum chatting:) Today Diane Rehm on NPR interviewed a woman who has written a book on the victims of the "sleeping sickness" of the last century--(Remember the movie "Awakenings", about Oliver Sacks and his patients who "woke up"?) Guess what: Those with this illness were reported to have had "flu" symptoms and sore throats...then the encephalitis hit. It is believed they may have had STREP infections which triggered the encephalitis. Fascinating interview. Basically inflammation -- brain encephalitis. The author is a historian and she presented case studies... She understands PANDAS and responded to a caller about this illness as well-- The author said that in pediatric cases historically the children with the "sleeping sickness" presented with OCD ! Encephalitis = inflammation = OCD ...in this case tied to "the sleeping sickness", they say those affected were still fully cognizant of all that went on around them. I could not help wondering about my d and Sammy -- both of whom held their eyes shut for extended periods of time--