dcmom

melanie- give it a little time. Talk to the doc about high dose iv steroids...

I haven't seen Dr B- but, I am wondering if you have seen Dr Latimer. She is in Bethesda, and IMHO is great!

Cab- you cannot know until you try. He may need steroids plus ivig (or multiple ivig) and most likely therapy. The longer you wait to treat, IMHO, the longer the road back - but two years is A LOT shorter than many on here had to wait for treatment. IMHO you need to be aggressive as you can. I look at it like I am in a war I feel we need to be constantly on guard, and react quickly and as aggressively as possible. Who is your doc? Can you get IVIG? IV steroids? oral steroids? PEX? If you are stuck in your area, cannot travel, I would be relentless- contact Dr after Dr and ask for help. You will find someone willing to do something....

I will just add our experience- not sure what the mechanism is exactly. I think of it as immune dampening, but it surely is anti inflammatory as well. I don't think anyone could tell you exactly which mechanism is helping more, probably both help. Steroids have been our lifeline. I don't know where my kids would be without them. We have done both oral and IV steroids. Our experience is that if you get the steroids started early into an exacerbation, they can end it. I think steroids are underused in pandas treatment.

Kate- I don't think there are that many explanations for explosive, overnight onset of neuropsych symptoms in kids. Add that to the fact that you do link these onsets to strep, and well your daughter seems to clearly fit the clinical diagnosis of pandas. More proof of pandas lies in positive response to treatment. At this point, I would follow Dr K's recommendations. I have 2 daughters with pandas, and suggest that everyone err on the side of treating too aggressively, rather than under- treating pandas. Go for the IVIG. Follow Dr K's recommendation for the tonsils. Stay on the forum. Follow what works for your kids. I would also get a qualified psychologist on board. We have found that some therapy is helpful in getting rid of learned behaviors. It is very possible the ODD stuff could be triggered by OCD. I would be sure that the therapist you use is trained and experienced in ERP (exposure and response prevention), this is the type of therapy that is proven to work for kids with ocd. Good luck!

pandas 16- I don't know anything about DBS. I do agree with you about the antibiotics though.. Our experience with our girls has been they present very much like what Dr Swedo describes. I don't think that chronic infection is an issue for them. They get an infection, or immune trigger, and for whatever reason it sometimes triggers the autoimmune response of pandas. The illness resolves, but we are left with the autoimmunity. We find antibiotics less important- other than swiftly and aggressively treating the illness- and immune dampening the key (for us). Both of my girls had strep in the spring. We knew immediately, and treated them with a course of clindamycin, and then a round of IV steroids. This made all the difference for them. Over the summer I took them off of everything (except vit D, probiotics and melatonin)- no antibiotics. I started to become very concerned about the unintended consequences of so many antibiotics- and if they were really necessary. They did fine. It made no difference. For the school year they are on prophylactic zith 2x week. To be honest, I am thinking of stopping this, but I am a little chicken. If I see any pandas symptoms pop up (which I have a couple times in both), we give them full strength antibiotics and regular motrin dosing for 5 days. So far, since July, they have been really well. There is some ocd/anxiety- they are not like pandas never entered our lives- but I would put them at better than 90%. My realistic goal is to keep them at at least 90%, 90% of the time. This gives them great quality of life. Of course I am afraid to wake up every morning- fear that things go bad- PTSD I am trying. They are happy! The reality is- I cannot keep them from getting sick. I think I just need to be able to respond quickly and aggressively, if they have an infection, or an increase in symptoms. I wish I could find a ped to work with me.

Here is a link- I hope it works. It was Different is the new Normal. See if you can get a copy of the show- amazing and inspiring. http://www.thirteen.org/insidethirteen/2011/09/13/different-is-the-new-normal-a-qa-with-ariel-and-robin-small/

Jonos mom- I just read this thread for the first time. This situation is horrific, unimaginable. Most schools nowadays have a zero tolerance policy for bullying. You are in an impossible situation. You really need to find someone who can see the big picture to help you, and to guide the school. You should not have to invent this stuff- and a school (who probably has to deal with this type of situation very frequently) needs to be better at responding. My only advice would be to find a really qualified and strong willed therapist. One who is very familiar with tourettes, and who can treat your son, but also help you advocate for your son at school. I would contact Dr Storch and University of South Florida. They specialize in ocd, but I think in Tourettes also. He would be your best first step for a direction. Also- there was recently a show on PBS of an amazing high school boy with Tourettes. You NEED to see this show, and see if you can get him in contact with your son. He presents to schools- so maybe if he can be in your area.... He is truly an inspiration. The show was something like The New Normal- living with Tourettes' syndrome. I will try to find a link....

Melanie- Both of my daughters had pex. One, we saw results immediately, in the hospital. The other took a little longer, and needed a little therapy to break some fears/ behaviors. BUT- the therapy was super easy. It was like post pex, the ocd was no longer there, but she was afraid of feeling that intense fear again, so she continued with her rituals (avoidance). Once the therapist had her talk about and try the things she was avoiding, she was fine. Hang in there!!!!

I am sorry Melanie- in the neck must be SO hard. I really don't know why they do that. I guess just do your best to keep him distracted, take advantage of any family life programs the hospital has to offer. You will be exhausted, hang in there, hopefully this will give him some real relief!

Is the catheter in his leg? We kept the blanket over it at all times, and distracted with movies, games, reading, etc. He should get used to it, and almost forget its there. The treatments are scary for them initially, because they are sensitive to the nurse hooking up to the catheter- but there is no pain. The machine is a bit noisy, so plan a movie or TV for during the treatment if you can. Make sure he is on hydration IV prior to or during the pex treatments, and increase calcium intake. Keep us posted!!!

Great news Melanie! I will be thinking of you and Danny!

Dr B takes insurance (if you can get there before it runs out). I believe you might get a free flight from Angel wings (?) and free accommodations if there is a nearby Ronald McDonald House. The other option is Tanya Murphy and All children's hospital in FL. There is a Ronald McDonald house within walking distance there. Will your son be eligible for Medicaid? Our state (NJ), I believe, has an insurance program for free for all uninsured kids- you have to enroll, though. Maybe your state has something like this. I can imagine how scared you are- hang in there. Be persistent.

My sister and I both had a couple of febrile seizures as very young kids. It is possibly genetic. We grew out of them. My pandas kids have not had any issues. Must be very scary.

Bulldog- I wouldn't even consider saying no in this situation. Go for it, don't look back...

We went from everyday abx to prophylactic for this year. I give both girls 500mg on Wed and Sun- with the ability to up to daily for 5 days if I see anything.... They weigh 42, and 80 lbs.

Miss Jo- Has your older daughter seen Dr L. I think she has a great "bedside manner", and might be able to talk with your daughter- and offer her some good advice. Dr L is a mom of young adult kids, and I have always felt she has the "mom instinct" when talking to my kids, which gives her an edge over the other docs. Certainly a course of antibiotics could be helpful, but if this has gone on so long, she might need something more- maybe she would react well to steroids.... I wonder and worry how this will work with my kids when they get older- now, I have control over their medical care. Does she see a therapist for ERP? I would think this would be key. After suffering so long, I think she would need therapy for "stuck" behaviors. I really feel for your situation..... Eileen

Bulldog- If finances are NO issue, and you can do IVIG whenever you want- then my personal preference would be to see a pandas doc (Dr L) and have the full range of treatments (abx, steroids, ivig and pex) at your disposal. If finances are a concern at all (which they would be for me, and for most) then I think I would go for it. You know you are in experienced hands with Dr Swedo. You will get IVIG and some in depth testing. You will still most likely need to follow up with a pandas doc. A high percentage of families on the forum have had to progress, at some point, to IVIG or pex.

Wow- I just watched the clip of the pandas portion of the Doctors. I thought it was excellent. Sure they only had a few minutes- and frankly I watched the Doctors once before and thought it was a horrible show- but this was great. The best thing about it was there were 4 doctors talking about pandas- and NOT ONCE was the disclaimer "it's controversial" put up. I liked how they put it into context with other post strep disorders, and discussed that the NIH was studying it. Shows like this are not so much for us, but to help spread the word, so kids can be diagnosed, and parents can demand their doctors to look into pandas. Great job, Beth!!!

Kiera- I hate to be a negative voice, but we wanted to try this route last spring. Our daughter was in a pandas episode, and we needed help fast- any way. I have NO issue whatsoever with psych meds. I don't see why anyone would, frankly, more than any other med- just important to do the typical risk vs benefit evaluation. Well- we couldn't find the "band aid" we were looking for. We tried low dose zoloft, with no effect (other than some initial difficulty in getting to sleep). The main issue, I think, is- most of the preferred meds take a month to see their effect. PANDAS kids, especially, should be started at a very low dose, and slowly titrate up. This means, theoretically, it could be twelve weeks before you are to a level that starts making a difference. For us, with medical treatment, an episode is over, or WAY calmed down before twelve weeks. ALso, during an episode and the medical treatment and healing process- there is so much movement in symptoms and severity, that it would be impossible to tease out if it was the psych med, or the med treatment (IVIG, steroids, pex, etc) that was causing improvement. Due to these factors we stopped the zoloft about five weeks after beginning, without trying a higher dose. I think your energy might be best spent in getting IVIG fast. I don't know that a psych med will help with a spike in symptoms post ivig. I think psych meds are an excellent option for issues that become "chronic". I am not aware of any relatively "safe" med that would work fast, and be able to be removed fast If you find something- PLEASE keep us posted.

I am so sorry you are going through this. I really think you need to get to a pandas specialist. I know it s$cks, that it will cost you a lot of money, and you will have to travel- but you need a doctor who is experienced in pandas, not one you had to convince. I say this because they are going to need to guide you through treatment. Did your son have strep? I am no longer necessarily a believer in long term, full strength antibiotics- but if he has an infection it needs to be taken care of for him to progress. Although, it is very likely the infection has passed and you are now left with the autoimmunity. Still- your child needs to have the ability to take antibiotics. How do you know he is allergic to the penicillin family? Have you had him tested? If not, that might be an important test. If the steroids have given your son such an amazing turn around, you probably need a pandas doc to help you continue the steroids through what sounds like side effects. Steroids can cause difficulty sleeping which can last while on the medication. Perhaps the doc can give you something to help with this. If not, perhaps it is something you need to deal with in order to get the end result of improvement of pandas symptoms. I think the aches and joint pain can be from the prednisone depleting potassium. When my kids are on prednisone, I give them calcium supplements (prednisone depletes calcium also) and increase their potassium intake (oj, bananas, cantaloupe, raisins, milk). If the sleep and joint pain are side effects from the prednisone, it is my thought that a doc could help you lessen the side effects, yet still treat with prednisone. To do this, I think you need a doc who is experienced and therefore confident enough in diagnosis to treat through some issues. While I know the pred causes these side effects, I do want to throw out there that my daughter becomes extremely sensitive and nervous (I am not going to say hypochondriac necessarily, but very dramatic over things another kid would shrug off) regarding health and medication while in a pandas flare. While I am not saying this is the case, it is something to consider. Quick treatment will make life easier, as the longer he lives with ocd, the more work it may take to overcome, once the pandas subsides. Do you have an ERP therapist?

We have seen some hyperactivity- it was a response to ocd thoughts- seemed like trying to keep their mind busy so they wouldn't think certain things....

CAB- I will comment on the ABX. Both of my girls are pandas, and they eventually did not respond to antibiotic treatment. We have had to go farther and treat the autoimmunity. This means: steroids, IVIG or PEX. We have done steroids and pex, which have immediately helped in the face of antibiotics not helping. We now only use the antibiotics to clear the infection, and use the immune modulation to stop the pandas symptoms. We have not done IVIG- however I know Swedo and the pandas docs seem to do a much higher dose. I would be concerned to vary from their protocol, frankly. Is there any way you can get to Dr Latimer or Dr Bouboulis?

I just want to add a totally different perspective, esp for those who are new or for pandas 16. We have not (so far) had a similar experience to those that have posted on this thread. I have two daughters (now ages 8 and 11). They both had overnight onset of pandas almost three years ago (ages 5 and 8). Prior to pandas both were neurotypical; older one high achieving, outgoing, perfectionist. Younger one sweet, kind, yet shy. Pandas hit both pretty hard. OCD debilitating enough that it made school, and even leaving the house impossible. Some academic/ cognitive issues for the younger one, also. We were fortunate enough to treat both rather aggressively and fairly quickly (although older one took almost 9 mos to diagnose). We have found that post-pandas- exacerbation, both are able to pick up in exactly the same place as their peers, academically, socially, maturity, etc. They are both (not gifted) rather advanced academically, have tons of friends and manage these friendships and all relationships at school well, and if anything have more insight, compassion and maturity than the next kid (maybe because of what they both have been through). My younger daughter spent the second half of kindergarten in various stages of pandas. During this time, I was concerned because she had trouble with her alphabet, numbers, days of the week, etc- all which they were learning at that time. She went in for plasma pheresis, and LITERALLY came home from the hospital and could write from 1- 100, knew her abc's in order, wanted to read, could recite days of the week, etc. She HAD learned everything she was taught in K, but was only able to utilize or express it when her episode was cleared- but then it came immediately. It was amazing. These were some type of cognitive issues, not ocd. The ONLY thing we suffer from, post exacerbation (and they have each had about three, and I assume will have more) is residual ocd. We find therapy is needed to get rid of the ocd. I also do think there are some learned behaviors. For us, these seem to be in how they handle/ manage stress. Prior to pandas, they were really easy- I even knew it at the time. Now, they get stressed more easily (for example: if they have lots of homework, if we are extremely busy, if they have a big disappointment, etc) , and I am noticing when stressed, the ocd may uptick slightly for that hour or day or whatever, and that they may resort to some of the coping mechanisms they did during the pandas flare (avoiding, yelling, etc). We deal with the ocd with erp, I now have to figure out a way to deal with times of stress. In PANDAS there is so much unknown. I can imagine, if a child got chronic (untreated) pandas at age 2 to 5, there would be much development missed, etc. If, however, the pandas was stopped (meaning the attack on the brain, or mis signaling, whatevery) I don't really see why the child could not learn to function normally. Kids CAN catch up. I wonder, if they do not, if there is more going on, or if the autoimmunity has actually been successfully stopped. Most researchers feel there is no permanent damage to the brain with pandas. That has matched to our experience.

Im frustrated- because I just don't think it has to be this hard. (my kids are doing well now, fingers crossed, so I get to think about the bigger picture a bit- instead of focus on survival).