dcmom

I have been wanting to update the forum for a couple of months, but wanted school and a recent illness to end- to see where we ended up. A brief recap for those who don't know my story: My youngest daughter Julia was diagnosed with PANDAS in 2/09 after an overnight onset and snowballing of ocd type behavoirs over 4 a week period, and a positive throat culture. A short list of her pandas symptoms: ocd, temper tantrums, urinary frequency, restrictive eating, difficulty sleeping, pale face with dark circles, extreme emotional lability, major sensory issues, aversion to dressing, bathing, getting hair brushed, number and letter difficulty, homework aversion. We treated with several antibiotics with no success. A few weeks after diagnosis she started zithromax. After 30 days of full strenght zith- she was almost at 100%. Unfortunately a T&A a month later caused an overnight return of all symptoms. During the next three months, we tried antibiotics and steroids- but Julia just could not maintain improvement. We opted for plasma pheresis for her in October. Immediately following pex she had a total remission of symptoms- it was incredible. Unfortunately, within a month, she contracted H1N1. Within 24 hours of recovery, she was backsliding dramatically into another episode. We immediately started a month long steroid burst. By the second dose, the backslide stopped, and by the fourth dose, she was back to 90%. Julia remained fairly consistent at that 90% level during the rest of the school year. She is highly sensitive to strep, and has not gone a week in school without a classmate being ill. She would have 3-4 days of heightened emotional lability, and very minor ocd resurfacing when there was strep exposure. This would go away on its own. In April, we opted for another steroid burst, due to consistent strep exposure, and feeling like she was not getting back to her 90% base line. The steroid got her back to 90%. The last week of school she was sick with a virus. During recovery, it caused heightened emotional lability- but no ocd. Advil dramatically reduced these issues. She is now recovered from the virus, and out of school for a week. I would have to say, that for the last 4 days, she is at 100%. As I am writing this- I am thinking that the last 10% of improvement might be due to the lack of exposure to illness by being in school. Julia's older sister Caroline contracted strep two weeks later. She was diagnosed with strep and treated with amoxicillin. She also developed pandas immediately, although we did not catch it with her because it presented differently, and was a bit milder. Caroline's symptoms at the time (in retrospect) were: ocd (she hid it- and we were not aware of it), daily stomach aches, difficulty sleeping, depression, difficult/oppositional behavior. We knew something was wrong, spent about 5 mos pursuing the stomach ache symptoms with no conclusion. Finally, after reading and re reading Dr K's synopsis for adolescent onset pandas- I knew that she had it. We started treating her with antibiotics in November, and did a steroid burst in December- it was amazing- we had a girl back we hadn't seen in 9 mos! Unfortunately, Jan 1 she got sick with a simple cold. She spiralled down hill really fast. The OCD went into panic mode, eventually she couldn't go to school- or even out much. She became mildly aggressive, extremely fragile, depressed, and riddled with ocd. It was horrifying. We got her into the hospital for plasma pheresis in early March. By the time she came home from the hospital, I would say her symptoms were reduced by 70%. There were still worries- but no panic. She went back to school, and started therapy. She has now come almost full circle! We did do a month long steroid burst in April to try to accelerate her progress, it did really help. This week I am visiting my Mom's with them. Julia has been wearing panties all week- sounds weird, I know- but when pandas hit she got MAJOR sensory issues, and hasn't been able to wear panties in over a year. Caroline is participating in a ballet camp. Ballet was her passion prior to pandas- but ocd took that away. They are happy, getting along, sleeping and eating! I am relaxed (except hoping I am not jinxing things). Reflections: I do not hold any hope that they are "cured". My only hope is, that we can manage episodes, and that they will be as few and as far between as possible. I hate to say it, because it is next to impossible to get- but I really think pex is a great route for our kids. Of course underlying infections, and immune deficiencies need to be adressed with antibiotics, and possibly IVIG- but pex is SO great for these kids because of the speed of relief. I also know that being in tune with my kids is so important. A temporary spike or blip for my kids seems to be an immediate jump in emotional lability, and some ocd that stays steady (which should be managed with advil, patience and love vs. an episode that worsens by almost 100% each successive day (which needs to be adressed asap with a thorough check up and a steroid burst). My kids are still on daily zithromax- I am not sure when that will change. We do probiotics daily. Advil as needed. I try hard not to overbook or overstress them. Health is our priority over everything else. That includes healthy food, plenty of sleep, and free time. School and hobbies (extracurricular) are equal to each other, and a far second behind health. I pull Julia out of school if I feel she is acting like she is being exposed. They are young, so we take advantage of not worrying too much about make up work. Their hobbies (horseback riding and piano) are therapeutic for them, and therefore are as important to me right now as school. It is amazing, after such a long year, to have my kids back- happy- blossoming. Really puts life in perspective. Hope that it lasts......

Want to agree with Tmom- the steroid bursts were essential for my kids as well. DD, 7, did a steroid burst at onset of second major episode post H1N1 (post pex)- and it stopped it in its tracks. Maintained improvements since Oct 09. DD, 10, did a steroid burst after pex, when improvement plateaud, accelerated improvement, maintained improvement since April. I personally think steroid bursts (the month long tapering dose) are absolutely KEY to recovering and managing PANDAS. For my kids- they have also been compassionate. The steroids increase the child's appetite for a few weeks, while on dosage.

nomoz and dandd- I don't really know your backround stories. But, I will add some thoughts that may help you. Unfortunately, with pandas, you really need to take charge of their health. Peds DON"T get it (for the most part), even if they say they do. The only docs that get pandas, are those who have been with their patients through thick and thin- Dr K, Dr L, Dr T, and Dr B (now). And even then, different docs have different strategies, you need to go where the treatment you want is. It stinks- I agree- but that is just how it is going to be for some time (I think). That being said- you are on the right track. Testing to rule out (or rule in) infections. Start on an antibiotic- my suggestion is zithromax. Give it 30 days full strength. See if you see any improvement. If yes- give it two more weeks, if no- switch it up (try augmentin - high dose, or maybe biaxin). Do not at any point, until your child is healthy (meaning NO pandas) for who knows how long (years?), go without antibiotics. If the antibiotics are not doing the trick, stay on them, and also progress quickly to a 4 week, tapered, prednisone burst. At some time during that month- hopefully you will see improvement. If so, hopefully that improvement will sustain. If your child cannot sustain the improvements made, it is time to consider IVIG or PEX. SOME low level symptoms just take time to work themselves out. So, the other thing is- if the child is happy and functional, but hanging onto some minor cognitive inflexibility, or residual ocd, etc- give it time. In my opinion, time is as much part of the equation as treatment. *** I don't know anything about lyme- except that it is VERY serious. Lyme disease could certainly cause pandas to be chronic. If you test positive for lyme I would immediately seek the help of an ILADS trained doc- no one else. Lyme mom on this forum could walk you through this. I would not treat the pandas at all, untill you got with the lyme doc as I believe steroids are contraindicated. We, thankfully, never had to consider psych meds. If it were me- I would not consider them until you have thoroughly explored and treated pandas and lyme. I think they will really blur the clinical picture of either of these illnesses. I would strongly suggest some therapy, either for the child or you and husband (to give you strategies to handle issues). I also do recommend smartyjones technique of repeating back what they yell about. It is from the book The Explosive Child. Hang in there- it is a long road- but the good news is, that they will get better.

I know, I am sorry, kids are home for the summer, planning a bday party, moving- a bit overwhelmed. Email me at sroka2967@comcast.net.... I will try to clear it tonight.... Thanks!

I am imagining, like Kayanne said, you are talking about a 4 week Rx, tapering dosage for the last 3 weeks? My kids responded really well. I have done a total of 4 bursts ( 2 each). Response varied, but all were positive. I would see decrease in pandas symptoms as soon as 2 doses, and up to as long as almost 2 weeks into burst. On two occasions, they maintained the progress, although I did see a slight bump in symtpoms toward or at the end of Rx, which did resolve. On two other occasions, the pandas symptoms started creeping back after burst (those two occasions were prior to their treatment with pex). Most of the time I saw some increased appetite, irritibility (mild, and different than pandas) and difficulty getting to sleep. All of these symptoms were mild, not really noticeable until pandas symtpoms decreased, and a picnic compared to pandas. All of these side effects disappeared as soon as Rx was done. Fingers crossed, we have not had any yeast issues.

I can't even imagine! I am lucky that my family is supportive. They all completely support pandas- and even then I have to set them straight on occasion:) I imagine it is hard, but I would think you need to distance yourself from these people, at least until your son is in a good place.

We have Aetna. They were tough, but in the end they did approve the pex on the third appeal (we were lucky to appeal both procedures at one time). My husband's company really pushed for approval for us. Our doctor was amazing, and told the insurance company that they were endangering my daughter's health by delaying treatment due to the appeals nonsense. It was a very painful 2 weeks, when we were trying to get insurance approval. We actually ended up paying up front, and are now working on getting our money refunded. When my first dd did pex, she was in the PICU- but the second was not, she was in the Ped HemOnc wing. I think this dramatically cut expenses. The bill for the procedure, including one extra day, was $29k. The contract rate with the insurance company was $5k (plus we paid our deductibles of a few thousand). I have no concern that this is too expensive. This is the treatment that is needed, this is why we have insurance, I completely think the insurance should pay. We would not hesitate to have pex on them again if they were to have another full blown episode.

I wanted to reply last night, as this subject is near and dear to my heart. I have two daughters who both had plasma pheresis for pandas in the last year. We chose this procedure over IVIG for several reasons (same as LLM), but mostly the luck of the draw, to be frank. I am always hesitant to post good news (the jinx factor), but I am planning a detailed update soon. But, the girls are doing really well, and we have been really lucky. I am an adamant believer that plasma pheresis is the way to go for pandas kids. Whether it needs to be followed with IVIG- I don't know. The way that Georgetown has set up the protocol, they have reduced much of the risk from the original method. It was extremely tolerable to my kids. And the biggest factor, is that in ideal circumstances, recovery can be almost immediate. PANDAS is so cruel, and, our kids have to wait so long for diagnosis- then they have to wait while trying antibiotics and steroids. I like PEX because I can't stand the thought of waiting another 3 months for recovery. The problem, though, is- no one is doing pex for pandas. This has to change. We need to be able to get our kids into the hospital when they are in crisis, and get immediate relief. If, then, they need further help with IVIG, fine. I am not saying I think PEX is a forever cure (I wish i did, but I don't)- but it is quick relief, and in terms of pandas that is EVERYTHING! I will be posting an update in a couple weeks (dd is sick now, want to see where this goes first)....

I have two girls with pandas. Both reacted well at first to antibiotics, but eventually needed more. From what we have done, I think I would suggest a 30 day course of daily treatment dose antibiotic- preferably zithromax or Augmentin XR. At that point, if you are not seeing major, continued improvement, I would consider adding a steroid burst. I prefer a 4 week tapering burst. This has dramatically helped my kids. You will most likely see great progress with the burst. The question is whether the child can maintain this progress. If they are continuosly losing ground, it is time to move forward to pex or ivig. I find it is important to be thinking, and making arrangements one step ahead. This disorder can be so cruel- I think parents and doctors need to act methodically, but quickly, to find a solution. Prior to steroids, I would have some bloodwork done: Dr Cunningham's test, lyme panel, immune panel. good luck- it is a balance of patience and action...

Amy- I have seen the thread on S pneumonaie. It just really doesn't have any "meat" in it. I am not saying it is not possible that this bacteria, and failing this titer test could relate to pandas- I just really havent' heard this put together in any meaningful way. Our kids get pandas, and we need to get them IVIG. The docs then look for immune deficiency to help get ivig. They commonly find low s pneumonai titers- but we have no information about these titers in the general population. We (as far as I know) have no way to connect this with pandas. If someone does- I want to know. It is not that I don't believe it- but when I see parents write they have found their child mounts no response to GABHS because they failed the S pneumonaie titer test- I wonder if that is misinformation. Can anyone else shed light on this? Thanks!

I am interested to know how a doctor determines that a child does not mount an immune reaction to strep. I believe that (someone here must know this study) something like 30% of kids do not have a titer rise after infection. So, I can't imagine that just a lack in titer rise would indicate no response to strep. I also question (not that I don't believe, but just because I really don't like much about pandas stated as a fact- they know so very little) that failing strep pneumo titers means a child cannot mount a response to strep. S pneumo is a different bacteria, and there is no sample (that I am aware of) that shows how the "normal" population fares on these tests. There is a great possiblity of vaccine failure, in fact there was a study in this last year that stated giving tylenol with vaccinations can really limit their effectiveness. It is not that I don't believe these things- as I really like to be careful what is stated as fact. I also think that Dr T's "types of pandas" is a working hypothesis. While I certainly think, if anyone is going to crack pandas- it is him, I don't necessarily know that is done yet BUT- I am really interested if anyone can comment further- because of course I always want to know what the latest thinking is. I have two girls with pandas. In my gut, I do think they mount a response to strep, but actually more of an overactive response, or maybe just a mixed up response- which is why pandas. For them it seems (but we will see) to have developed into a classic autoimmune issue. m One never had high titers, the other I never tested (I, actually, don't see any benefit to testing titers, and we were "lucky" enough to have positive cultures at onset). Neither has a remarkable health history- no frequent illnesses, even strep. This is such a long road for us, the parents. I hate to get stuck on one idea- as I really think ALL of this is so new. I will be interested to hear responses!

Hi Nancy (and everyone) Yes! My darn inbox is full, I have to get my act together and write down who emailed me about the conference, and about Dr L's gift- so I can clear it out. Hopefully tonight. Tmom and I would like to plan a casual dinner near the conference hotel for Friday night. (Friday is the biggest pandas day at the OCD conference). I am planning on a really casual bbq at my house on Thursday night, for those who will be in town early. I live in NWDC- about 5 miles from downtown- however, the conference (I think) is actually in Arlington, VA. I will post more, and send out emails about both the gift and the get togethers asap. I am really looking forward to meeting everyone- and so are my girls! Eileen

Mama2alex- I am so sorry- I can sense the frustration in your post. This is all so hard. I do want to say- that I am not really sure there is a "classic pandas". No one has followed any of these kids long term (more than 1 year) to really know what happens. My younger daughter was "classic pandas", her older sister, a little different. But BOTH pandas. Neither of them has been successful with ONLY antibiotics. This sucks, but it is the truth. We have had to do pex and steroids with both, and I feel we may have to do these things again at some point. We don't see DrK, and I have total respect for him, but I do doubt that we should be talking about a "cure". It is management. I fully believe for most this becomes a true autoimmune disorder. If your son has lymes- then there it is- that is what is causing the "chronic" part of his pandas. Get rid of the lyme, and then there is more hope of longer term control of the pandas. My little one had the total overnight onset on the heels of an asymptomatic strep infection. Within four weeks- she was in major crisis. At first, antibiotics worked- but not so well for the next episode. Her sister had strep at the same time. She developed lots of issues at that point (stomach aches, defiance, emotional blow ups, negativity, and in retrospect some ocd). BUT she functioned really well, and tried to hide everything under this new prickly exterior. However, nine months later (and after we started treating her with some success for pandas)- she got what appeared to be a cold (almost nothing) and within a few weeks was in crisis. Like your son: total school refusal, anger, depression, ocd, panic. Ugh- HORRIBLE- don't want to even think about it. I no longer could handle being home alone with my two kids (age 6 and 9). They both have responded well to treatment. BUT- they are not cured. We are managing. Since pex, they have each done one steroid burst. I was hoping to post a good, happy update once school ended- but my younger one has a virus- and they are both having some issues. I am really hoping we can manage with advil or steroids. I think if we all look back- most of our kids maybe had a milder (which we can't pin to an overnight) onset , prior to the onset that became crippling. For my younger daughter- she had transition issues, and very mild selective mutism (VERY reluctant to speak to adults), picky eating, mild sensory stuff. Nothing we would have considered counseling for- we just thought she was quirky. I don't think these were there since birth- but I am not sure when they started. My older one had no issues. BUT- nine months prior to her crippling overnight onset, she certainly had a milder onset with (behavior issues- defiance, stomach aches, very picky eating, anxiety). I am not second guessing your approach. I think in order to get the pandas under control- you have to treat the lyme. I guess I am just saying I don't think your son is that different from all of our kids. Please hang in there- and keep us posted. Oh- and the other thing- we do month long, tapered steroid bursts- which I think are what is needed to help in management of pandas. I know Dr K doesn't do this- but I have to say I completely disagree. My dd had pex in October and had immediate and total resolution of symptoms. She got H1N1 in November- and within 24 hours of recovery, she was spiraling down quickly into a pandas episode. We waited it out 3 days- 100% worse each day. That is when we did the steroid burst- it returned her to about 95% and she has held there fairly steady (minus a couple of blips due to strep exposure) since. She has a virus now- so we will have to wait and see what happens this time. SO- if and when you want to try steroids again, I would really try the month long burst. I will post an update on both girls soon- just want to see where we stand with this illness in the house.

Hang in there mom md- I know how you feel about your mommy intuition... But, it would be likely he would get a small blip being around strep- but hopefully that is all you will see....

While they certainly did gloss over the needed treatment, even for Sammy- the show was excellent! It certainly captured, what we and our kids go through- plus adding a little science! I don't think we could ask for more!!!

Both of my girls always held it together at school- when they got really bad- they just wouldn't go to school- but the teachers really never saw much.

Thanks for the detailed update! I am so glad you have been able to manage things pretty successfully with your dd. Please- up the abx before and after T&A. And, if possible, have a steroid burst handy. Keep in touch! Eileen

Things have been going really well, and I was hoping to give an update here on both girls soon. BUT, NO... This morning Julia woke up with a sore throat, it has progressed to a sore throat, tired, glazed eyes and fever. Sigh. Seems like strep. I don't know if she has been exposed, but it is a constant at school. She is currently on daily zithromax (200mg). She weighs 38lbs. I will take her to the ped tomorrow. They are sympathetic to pandas, but I usually see Dr L for everything- so just don't know how agreeable they will be. These are my thoughts: She is on zithromax- so I am prepared that the strep culture could be negative. I am thinking, we should somewhat assume it is strep and treat appropriately. She is on full strength zithro- so I am thinking we need something stronger. Clindamycin? How long of a course? Stop the zith when she is on Clindamycin? Thoughts? I also want a steroid burst prescribed, so that if she starts going downhill- we can TRY to nip that in the bud. Her sister (also pandas) is symptomless right now. Do I have her cultured this week? She is on full strength zithro also- maybe she won't get it (can I hope?). Do I treat her with anything (she is on zithro, 300mg daily and weighs 62lbs)? Any thought would be appreciated! I am trying to maintain my calm! Thanks!

I also only use .6 mg for my 9 yr old daughter. I would consider starting with a lower dosage.

Pat- We see Dr L, too, and love her as well. I was not really suggesting that you find a new doc, but more suggesting that you not wait to start treatment. Has Dr L been treating him for pandas? I guess what I am thinking, is to get him on antibiotics now- for a month- while you wait for her to return. There is SO much waiting with pandas. Waiting to get the right diagnosis (for some that takes years), waiting to get to the right doc, waiting to see if treatments work, waiting to add another variable, etc. All the time our kids are suffering. I cannot stand the waiting. If you could do the antibiotics, and then maybe even the steroids, while you are waiting to get to Dr L- you will have sped up the process... That is IF you can find another willing doc.

pastacey- How old is your son now? How long have you been dealing with this? I would pretty conclusively consider this pandas. It is possible that there is or isn't a current infection. I would not wait. I would get him on either treatment dose of zithromax or high dose augmentin. I would do this for 30 days. Be sure to do probiotics as well. In the meantime, you could do some bloodwork to screen for lyme, strep titers and myco P. After the month of antibiotics, I would definately consider a month long, tapering steroid burst. Where in PA are you? I may have a doc for you.

colleen- I have the same thoughts about my dd age 9.5 who is sleeping with me. I do think it is important for their self esteem, to conquer this- with patient, loving help. I don't know if this makes sense- but for my dd- it seems with many of her issues she is afraid of the fear. So, in other words- she doesn't want to try doing certain things, out of fear that the feeling of intense fear and panic will occur again. Most of the time, by the time she tries the avoided action- she is fine. This is because she is "healthy" now. Good luck!

When we were first dealing with pandas, our doctor did recommend seeing a cardio to rule out any heart involvement. I was more than glad to do so- and everything was normal. If you can do so, and only have to pay a copay- I say why not. One less thing to think about at night. I am glad you brought this topic up- because it is a reminder to me- that it might not be a bad idea to do every few years, or after a bad episode- just for a precaution. I think our doctor has said she never had a pandas patient who had heart issues- so probably any connection would be VERY small. But I (like everyone here) no longer have the luxury of taking my kids health for granted, and thinking "oh- they couldn't get that". It was a very simple appt for the kids (almost fun)- and gave me peace of mind.

I agree with Michael. My daughter slept alone from about age 10 weeks to age 9 years- never any problem. When pandas initially hit, she would sleep in her bed, but would not let herself sleep until we came upstairs for the night. We didn't really understand what was going on at the time. When her pandas hit a crisis point, she ended up in bed with me (poor dh is in 3rd floor bedroom now). Since pex- all symptoms have been improving. This IS a tough one, but we are making progress. We are slowly working her back to bed, with no pressure and no panic. Baby steps. We are now to the point, where she will go to sleep by herself in my bed- I come up to bed after she is asleep. I do give her melatonin, which helps her get relaxed and sleepy. This is definately a pandas thing for my kids. As they get healthy, the panic around it goes away- but it still seems to take a lot of work to get rid of it.

I forgot to say- but there is NO COST to you for participating in this project. I plan to make the book on Shutterfly or snapfish, the cost will be minimal (esp with coupon) and I will take care of it. Thanks again!