dcmom

Tiffany- Viruses, colds, loose teeth and even illness exposure can cause pandas flare ups. My kids are on very low prophylactic doses, yet if we see any increase or return of pandas symtpoms we immediately put them on full strength treatment dose of abx along with regular (3-4 x day) advil dosing, for about 5 days. Many times (not all) this does the trick.

Hey norcal- I have some thoughts First glad things are going fairly well. We were in your shoes (I think) last spring. DD had a fairly severe episode in January. Overnight onset of panic/ ocd. We treated her, which really calmed things down. You could see it in her- personality back, physically looked better, could see it all in her face/ eyes. YET, she was stuck with one MAJOR ocd. Fear of vomiting at school. We tried and tried. She went on homebound and we did what we thought was best, trying to get her back little by little. So- in this situation- she was healthy, pandas was gone, but ocd was really entrenched. We were sending her to ever so painfully slow increasing amounts of time in school (this was the response prevention part of erp I guess). BUT- she was miserable. She was worried the entire time at school, couldn't focus, counted the minutes to get home, and cried every morning. It was miserably horrible for her, and to see her like this. BUT outside of this- SHE WAS COMPLETELY HERSELF, COMPLETELY NORMAL. This summer we went to an amazing outpatient intense pediatric ocd program. There she worked on EXPOSURES to her ocd, and COMPLETELY recovered. She no longer has this ocd at all. How long has this been going on? While I totally understand you needing to keep the peace, and have him eat- I know you know this is accomodation. This has to stop, and he has to start doing the hard work of ERP. I cannot stress enough that you need to find an unbelievable psych who totally "gets" ocd, will do exposures in his/her office, and is willing to be tough. This is not easy to find. You may consider contacting IOCDF or Dr Jenike for some suggestions in your area. We flew from NJ to FL for the program we went to, and it was SO worth it. After having two pandas kids suffer multiple episodes- yet fully recover quickly- over the last few years, I am a big believer that some ocd can become learned, and may need serious therapy to completely get rid of. This must be SO horrible for you- and yet, since it seems he is "healthy" he should be able to be pretty successful with therapy. Good luck!

Well we definitely saw some form of cognitive decline in my dd. I think it boiled down to short term memory issues (documented in pandas) + anxiety + frustration/ short fuse. Plus, at her worst point she was mildly spacey- like you would be when you have a cold- brain fog maybe? This all went away immediately with pex. For example- daughter was in kindergarten- first grade. All summer tried to get her to recite days of the week - no go. In school working on writing numbers 1-100- no go (some backwards, teens a mess, could not do it). Very resistant to practicing reading. Literally the day after we came home from pex, she recited the days of the week like it was nothing, wrote from 1-100 perfectly, and read 6 books to my mom. It was a miracle! (she was an atypically fast responder to pex- our doc said most do not get this quick of a response). I am not sure if that is technically "cognitive decline"- but it sure has the appearance of it.

colleen- you can break it up, but it doesn't have to be 12 hours. So, I would think you could give abx and steroids at breakfast and dinner, probiotics around lunch (if possible). I misread your post (too early, with daughter hanging on my shoulder) and thought you were waking her up to give it.

I think Dr Goodman is awesome

Kel- that is rough, I don't think there are many (if any) publications that recommend longer term abx. What I would suggest is finding out details about two studies, and presenting this to your doc. University of South Florida (under Dr Eric Storch and maybe Dr Tanya Murphy) are studying the use of an antibiotic (not sure which) coupled with CBT (therapy) for ocd. The National Institute of Mental Health (NIMH) in Bethesda, MD (under Dr Sue Swedo) are studying the use of IVIG for PANDAS. The recent "white paper" by Dr Swedo mentions IVIG, and lays the groundwork for dianosis- and actually highlights ocd as the main symptom. I would think if you presented these three things to an open minded doc, he would consider short term trials. I believe he could easily contact USF and the NIMH, also. I am short on time now- but if you have trouble finding this info- let me know and I will locate it..... Eileen

colleen- We have not had this type of side effect. Maybe sometimes fatigue, no stomach issues. Also- we do not worry about dosing 12 hours apart (not sure if your doc told you this). Should probably dose with food, esp if there are stomach complaints- we do breakfast and dinner. Is she on abx too?

well eljo/ michele- Let's say it started last Dec/ Jan. My kid's pandas had been pretty under control for a year for one, and a year and a half for the other thanks to pex. Then in Dec the you know what hit the fan for both of them- due to unknown cause- most likely a cold virus they had. Things got pretty bad, fast. They went from hovering around 90-95% to 30% almost overnight. We could not get in to our regular doc for a while, so I reached out to some local docs. It is my opinion that a pandas episode needs to be jumped on asap- the longer in an episode- the longer to come out, and the more likelihood of more learned behaviors- not to mention more suffering. Went to an in state neuro to beg for pex. He didn't want to do it, but offered high dose solumedral instead. They both had (in hospital) 4-6 doses of 7mg/kg of solumedral. Both made a full recovery within less than a month. Unfortunately in April, both got strep!!! (first time since initial onset). We immediately did two doses of solumedral 7mg/kg for the older one- immediate recovery. We waited longer for younger one (stupid) and it took her at least a month, close to two, to recover. Since then, we have been working with oral steroids. One has had one burst for 5 days, the other two bursts for five days (we are in one now). We are working to find the lowest possible dose to recover them. I think jumping on an increase immediately, helps. Our current working protocol is this; Prophylactic zithromax 2x per week (one actually on no abx now), probiotics (theralac for one, probiotic pearls for the other) and vitamin D. If we see any flare up in pandas issues, I wait a day or two to be sure, then we go to 5 days of daily zith plus regular advil dosing (3-4 times per day). Most of the times this year, this has worked. If this doesn't work we move to a five day steroid burst (40 mg X 3days, 20 mg x 2 days- for my 45lb-er). Little one is on this now and I am actually thinking of reducing to 4 days as she responded to the steroids after 2 doses. I know of two neuros plus an immuno in my area that treat with steroids. This is not rocket science- docs have been treating autoimmunity and inflammation with steroids for a long time. We have chosen not to do IVIG at this point, but, Dr B treats some of his patients with steroids every time they have IVIG (every 4 to 6 weeks)- my theory is why not do this sans ivig- if it works? Hope this helps.

Michele- I can tell you there are several docs that use steroids to treat pandas. It does make sense, because like encephalitis- pandas is inflammation of the brain. For my girls, steroids have been the reason they can live normal, happy lives over 90% of the time. Steroids have been a long term solution for us. My kids are not on long term steroids, but take short "bursts" or very short doses of solumedral (IV steroids- high dose) when needed. We have even been able to come off of antibiotics for the most part. Yes- we have concerns about using steroids- which is why we minimize their use. But I also have concern about letting autoimmunity run unchecked. For us it has been a quality of life issue. The sooner we attack a flare up with steroids, the quicker it is resolved. I agree with doing a reasonable search for infections, however, I am not a huge believer that true PANDAS has chronic infection involved. I believe it is a post infectious disorder. My kids recover from illness, and frankly do not get sick more than twice a year similar to that of their "healthy" friends. When not in exacerbation- they are the picture of health and happiness. I don't know your child's story- but if this seems like the case I would suggest trying steroids.

Thanks for all of the replies so far. Coco- it really touched me that you would call your dentist for me I will pm you later (short on time now, as I really like that option). Kim and Nancy- I was really concerned about the nitrous, as dd does have one MTHFR mutation, and I had seen some issue with that. I havent' done my research yet- as this forum is always the best starting and ending point for me. My dd had propofol for her pex procedure, and that went really well. The dentist will do the procedure in the hospital, but is not sure what the anesthesiologist would use- so I would have to inquire further. At this point I am thinking to try the valium route, and if that does not go well- consider the hospital. All this after checking out this new toothpaste. Kim- NO silver fillings. I was not even aware they were used anymore. This dentist only uses white. Thanks everyone! As usual!!!

I took my 8 yr old to the dentist yesterday and she has three cavities She is normally a fairly anxious/ slightly sensory kid (out of exacerbation). It is very hard to get her to relax and cooperate for a tooth cleaning and xray. I cannot imagine how we are going to deal with the cavities. The doctor laid out some options for me. My main concern is not doing anything to cause a pandas flare up. We have never seen a flare up in either kid due to a cleaning. Options: valium valium + nitrous oxide (doctor said sometimes with kids even using these two things do not work- hhmmm- should anticipate that will be us) valium + nitrous oxide + blanket (this must be like a straight jacket. REALLY do not like this option on many levels. Worried that extreme stress if this technique is employed could cause pandas flare.) general anasthesia in hospital oy. Not many good choices here. Wondering what experience your kids have had with valium and/or nitrous. Did they react positively? Did it lessen anxiety? Did it cause a flare up? Thanks for the input! Eileen

coco- my bet would be it was the steroids that did it

nevergiveup you are right, this could not be PANDAS by definition- the patients are all too old. I am not invested in or confident this IS PANDAS/ PANS/ CANS/ SOT, but if it were, we may not completely understand the presentation as the LeRoy cluster are older. I have been very concerned from the beginning about PANDAS being connected w/ this cluster publicly because PANDAS is in such a weak, yet hopeful position in the medical community now. How it has gone, I am happy with- Dr T has managed to get the word and facts on the national stage in a cautious, conservative way.

Well obviously I cannot answer the question about your son, but I can tell you that my dd restricted food intake during an exacerbation, it was ocd, and went away with pandas treatment. So, certainly food or liquid restriction can be ocd.

nevergiveup- I have to disagree. No one is a bigger Swedo fan than I, but what is written in a formal scientific paper, I am sure, does not include her complete observation. The list of symptoms in the white paper, IMHO, is excellent, however I am sure it is not an exhaustive list of the lesser or less common symptoms she has seen with pandas. (It does seem to be less clear for primarily/only ticcers). My daughter also had stuttering, btw. Came with one very bad exacerbation, left within 2 mos after treatment- never seen again. She also had altered taste issues with exacerbation.

NMama- It is very likely that if you have the infusion done at Georgetown Hospital, insurance will pay. Check to see if it is an in-network provider for you (they accept many plans). Check with Andrea at Dr L's for scheduling. I would start looking at this as a plan B if needed.

Worried Dad- How are things? I miss your presence on the forum, but I hope the fact that you are here less frequently means things are well, and your family is moving into a new phase.... Post an update when you have a chance! Eileen

Dean- Do they say how long your child should maintain this dose?

Yay! Heartwarming! He deserves all the happiness in the world!

My advice would be not to waste your time, to go see a pandas specialist. Many her have wasted time, money and emotional energy on doctors not willing to treat pandas. I think the best route is to work backwards if you want to find someone local to you. See a pandas doc for testing, diagnosis, and treatment plan. Once you have positive response to treatment, you can then walk into a local (open minded) specialist armed with test results, diagnosis, and positive response to treatment- you are more likely to get some help then. Sorry- I know this is blunt

Bulldog- I am sorry you deleted your post. I urge you to begin a new thread with the info about the study you had posted. No doctor is perfect, and all have their hands tied to some degree- but we all owe the fact that we are able to secure any treatment to Swedo. She is a researcher, and has to follow strict rules at the NIH, or her work will not help anyone. We all know that. I am sure that being in the trial, and having a setback, and not being able to get follow up care, is horrific. Look, it is always horrific when our kids relapse. But- this conversation should not derail a post urging parents to consider the study. And maybe big mighty could add a caveat- arrangements should be made with another pandas doc for future follow up care.

That sounds like what we saw. A few days post steroids, should be gone. We now dramatically up potassium intake immediately upon starting steroids. Helps a bit, still some flushing, though. Hopefully you will see some results that make it all worthwhile!

It is my personal opinion that it is best to have a current relationship with a pandas specialist, if you have a pandas child. That being said, I have not seen Dr Murphy (so don't know her protocol), and it does sound like a significant hardship for you to get there. Hopefully, some patients of hers will chime in. There is a possibility she can do a thorough work up, and then write a plan for your docs, if they are agreeable, this could save you a lot of heartbreak if things were to take a turn for the worse. You don't have a crystal ball, but I guess I would rather waste some money and time off, and her never get sick again- than for you to cancel, and her to have a relapse, and for you to be without proper treatment. (It is great that your ped is cooperative, but sometimes it takes more than abx).

Thanks for the replies! Overall, the responses are positive. We plan to go cautiously forward. (Burnell- so glad things are going better!)

Hi tiredmama- So, the "rash" you posted about in your last entry sound a bit like flushed cheeks. Could that be what he is experiencing? My dd tends to get flushed cheeks sometimes from pred, caused by low potassium. Pred can deplete potassium. It can be helped by increasing dietary intake of potassium (bananas, cantaloupe, raisins, oj, etc). If, however, there is a rash, I would seriously consider taking him to an allergist. Get photos when the rash is most visible. Really, only an allergist is going to be able to determine the cause of the rash. The worst thing you can do is stop the pred and assume it is an allergy, and potentially eliminate this very important treatment as a possibility for your son. Eileen