dcmom

I admit I only skimmed this thread, but... Once the pandas is put in motion by a strep infection (which may resolve on its own before you can test it)... pandas exacerbations can be caused by any immune challenge (depending on your child): virus, dental issues, vaccine, cold, etc... This was noted in Swedo's original study, and is what has happened to my kids. Theoretically, if it has become an autoimmune issue- strep is no longer needed. I had a collegue of Swedo's tell me early on, not to try to track titers with episodes. Frankly, I have completely discounted titers in my kids....

Hi all. I see there are so many new parents (which makes me so sad- yet happy you have found a place to help) so I will give a brief recap: DD, Julia, had an overnight, acute onset of ocd last February. She was diagnosed with strep, and then pandas, a few weeks later. Recovered on full strength zith for 30 days, T&A surgery, relapse, steroid burst shows great improvement, relapse, plasma pheresis- total and immediate remission, H1N1, start to relapse, steroid burst, holding steady now since November. She does have some minor ocd issues (thank you H1N1) that frustrate her- but she is 96% improved. She still does react to strep exposure (currently on treatment dose of azith) with typically a 3-4 day uptick in mood issues and ocd frustration. This happened at the end of last week, and then the email that a boy in her class has strep. As long as she seems healthy, I continue to send her to school. I had an email yestarday, and now one today, of two additional kids in the class diagnosed with strep. So what do you do? Would it be prudent to keep her out for a few days when she flares, until most of the strep cases are flushed out and treated? Is anyone else dealing with this stuff? Her sister Caroline had a bid of a more gradual pandas onset- overnight it was mild, but 9 mos later H1N1 (lovely) caused a dramatic spike. We are (fingers crossed) heading for plasma pheresis with her soon. Will keep you posted on her condition.

Sorry, but I have to interject. We are in the midst of fighting with the insurance co to get my daughter, who is in crisis, pex. Her doctor says it is an emergency and she needs it. The hospital is ready to do it. And some pencil pusher at my insurance co doesn't want to authorize because it is not in AMA guidlines. I have a problem with this!

I can't be on the webinar. Please, someone report back as to what is discussed about pandas. I am from NJ- and planning to go back. Atlantic healthcare (overlook and morristown) is/was my hospital. Delivered both of my girls there, and my mom and her sister work there. It is really a great hospital with lots of great docs. I have every intention of meeting up with Dr Kurlan at some point, to share our story

on a lighter note- pandas TOTALLY affects dd's taste buds (i won't even delve into appetite and restrictive eating, here): I make homemade pizza. For years it was her favorite dinner, with milk. All of a sudden (at some point during pandas episode) she HATED pizza and milk. Refused to eat it. In the hospital, after the second treatment- she requested milk! (first time in about 9 mos she drank milk) The week after pex- pizza was her favorite again! Really weird! PS: since the flu- she is better- but won't eat the pizza again

Momto2pandas: DD wrote lots of letters, and most numbers backwards, and had huge problems with the teen numbers. This literally changed in a week- post pex. All of a sudden, she could write to 100 perfectly, without help, knew the days of the week in order, and sat and read for over an hour. I really felt, she learned everything, but wasn't able to get it all out, or transfer it to paper, during pandas. Immediately after pex, she tested very advanced in math. We are now having some issues with b and d. She has some trouble with simple sight words- but can sound out really long words. We definately lost a little ground since plasma pheresis- but for the most part she is great. Since your kids are doing well- it is hard to know what you could do. Have you thought of a steroid burst? I plan on trying one for my dd when school (and illness season) is over. I guess you just need to keep a close eye on them

mom2pandas- To answer your question about things improving that we didn't attribute to pandas. We had this also. DD had acute, debilitating onset at age 5 1/2. I now think maybe she had it mildly for the year or so before. She was a little bit rigid, inflexible in personality, stubborn, and always had to have things "just right". She is very smart but was always somewhat resistant to schoolwork, reading and writing. She was never as good as her sister in memorizing stuff- abc's, days of the week, song lyrics. This stuff was not part of her sudden onset- but it was gone immediately following plasma pheresis. Those few weeks after, she was actually an easy going kid, read a lot, and instantly memorized things we had been working on (without success) for months. Most of those gains have stayed, except for the easygoing part. Since her relapse, she just hasn't gotten that flexibility back. I imagine it is a bit of "just right" ocd. It isn't a huge issue, though.

I am really interested, and hope we have lots of responses. My dd had plasma pheresis in October. Immediately after, her pandas symptoms were 110% gone. Since then, she had the flu. Although she is still great- she has very minor flares when exposed to strep, and still has some pesky ocd issues. We are considering high dose ivig for her- but right now are waiting to see how things go.

Joan- I love that. Everytime I write someone about pandas, all I want to say is Pandas sucks- that is all that comes to mind. Then I try to re phrase it in a more "proper" term- but nothing really does it justice.... other than FUBAR- which someone mentioned recently, hadn't heard that term since college

Lisa- I know how hard this is, because I have struggled with this for 2 of my kids (pandas). We made a different decision for both. Still don't know what is/was the right thing. My youngest daughter, in K at the time, presented with pandas first. She had EXTREME separation anxiety. She also could not dress, eat or use the bathroom (before school). We made the choice to try as hard as possible to keep her in school. She was allowed to go late (which helped a lot sometimes), she could go in her PJs, and I would offer to come back to check on her at lunch, and take her home if she wanted. For the most part, she was able to get there every day. At school, most of the time, she did really well. I would go back at lunch, and 90% of the time, she was fine. For her it truly was the separation and the transition. Of course, during her worst week or two, she did not make it too many days- and that was okay- sometimes I would call it before we tried- did not want her to feel like she was failing. When she was healthier, this ALL went away. The decision to make her go, was because we felt it was in her best interest and her best chance of enjoying the day. My older daughter is in a pandas episode now. She is out of school. She is in 4th grade. To get her to go, the last time she was there, I literally had to force her to get dressed and drag her there. She spent the entire day, pale, hunched, silent and staring into space. When she came home that afternoon (early) she was depressed for hours. We have kept her/let her stay home because we felt it was in her best interest not to be at school. I think you need to figure out what will make your son happy and healthy. Going to school is always my first option, but if that seems detrimental to his health, than it needs to be rethought. We used a psychologist who was very helpful with the separation anxiety. Good luck

Dedee- Thank you for taking the time to share your story. So much of pandas (for the parents) is worry about the future. It is so great to hear a happy, but realistic, picture of recovery, and happiness. If we can have hope that in the end things will work out and be okay, it gives us the strength to get through the rough times. Your son is so lucky to have you, and it sounds like the route you took addressing the medical and psychological part of this disorder really worked. Thank you!

My pediatrician told me we needed "positive reinforcement" at the onset of pandas. It is the only thing in this whole disaster that still makes me chuckle.

There are many possibilities: your son may have had strep with no symptoms, that either resolved or did not show up on culture. your son's pandas may have been triggered by this asymptomatic strep or the previous strep but have been EXTREMELY mild- then a more serious episode triggered by the vaccine. Possibly the vaccine triggered a PAND or PITAND. Sorry you are going through this. I wish healing for your family.

Just to bring up what LLM said- the workbook- What to do when your brain gets stuck- is amazing. It was recommended to me by Meg's mom. I found when in a full blown episode, it didn't seem to be helping- but once my daughter started calming down, it was clear she had heard what we were reading. It gives the parent and child a language and strategy for dealing with ocd, and you can refer back to it daily. Everyone here that has a child with ocd should get it (I ordered mine on amazon).

Lisa- I am so sorry that you are here- but welcome. My dd had a similar story. She had acute, overnight pandas onset along with positive strep culture. Antibiotics took care of that episode. We then had her tonsils out, and 7 days later, she woke up with major pandas symptoms again. I don't know why it happened- maybe there was some strep in the tonsil area that was released into the bloodstream- who knows? You need to try to get your son on full strength antibiotics for a month, to start. If you do not see a quick remission, I would recommend a steroid burst. I strongly recommend getting to an experienced pandas doc- unfortunately this goes beyond what many pediatricians can/will do. Where do you live?

Dut- I am in total agreement with you. Unfortunately, with 2 kids with pandas, maybe it gives a clearer picture. The sensory issues started with pandas for my daughter. I can look back in photos of her in jeans and itchy sweaters- never would happen today. This also has been the toughest issue for her. We basically stick with soft cotton leggings and dresses (no panties!). I am hoping as she gets older, and has a desire to wear other types of things, she will want to work on it more. We are starting to work on the panties this month, as overall she is doing great. I think it is possible that both of my kids had a very mild (but overnight) onset of pandas- which then within a year exploded with another immune challenge.

Laura- I have two daughters with pandas. Between both of them, I have seen that pandas can make anything hypersensitive: feelings, hearing (loud noises), seeing (brightness), stomach, head (hair), tastebuds, touch (being wet). You name it- if it can become oversensitized, pandas can do it I think it may be less of a physical ear issue, and more of a sensory issue that you can work on with him. That being said, I think strep can cause ear infections- so make sure if you suspect that you have a doc look in his ears.

airial- When my daughter had her first episode of pandas- it took 30 days on full strength zith to really see an improvement. For her, it wasn't really gradual either- it was more like: first week and immediate stop of the downward spiral that she had been on- stabilization, week 2 and 3 almost no improvement, week four rapidly progressed to about a 95% improvement. Don't give up on the antibiotics. I think you can look on the zithromax website for dosing. My daughter does a daily treatment dose (something a girl her age would be on for 5-10 days for strep). Once you get him better, NO immune challenges for a while. Be careful with vaccines, dental work, and exposure to illness.

simply gina- I would push. Follow your mommy instincts. As a parent, you can get used to some ocd and put it off to quirky behavoir. My younger dd had acute sudden onset ocd/pandas. There was no ignoring or getting used to it- she could not function in her 5 yr old life. Her sister had a MUCH milder onset at the time- we didn't even attribute it to pandas, even though she also had strep when her sister did, and we were treating sister. Onset was just so mild- she functioned- maybe not even real ocd, just new worries, some new defiance, stomach aches. Eight months later, she really spiraled down into a more acute onset of ocd. She is now diagnosed with pandas. What if we had her on antibiotics and a couple of steroid bursts before the downward spiral? We will never know. I am not trying to scare you, and I don't really blame myself. I am just trying to say in my experience a mild sudden onset (although these onsets, even acute, snowball, as in new things are added each week, not everything happens day 1) can precede a debilitating episode. If you are anywhere near one of the specialists- I would go to see them.

I am thinking your child has ocd/ behavoir issues and not tics? After 30 days on antibiotics, if you do not see enough improvement, I would ask for a steroid burst.

I am very interested in the possibility that underlying food sensitivities play a role here. We are not there to be able to do testing yet- still trying to get the pandas in the family under control. I did read somewhere (someone more scientific on the site might be able to elaborate) with all of the research into MS, that food sensitivities might contribute to autoimmune disorders. The thought is that while the reaction is not acute enough to be a life threatening allergy, that it is still doing bad things in the body. I would imagine this could be an underlying contributor to a leaky gut and/or weakening in the blood brain barrier. I have to go back and see if I can find that info. I wouldn't be surprised AT ALL to find out that my youngest pandas dd has food sensitivities, as she has suffered with constipation forever. The only contra indication for me, is that her sister also has pandas- and she has had (prior to strep) amazing and healthy appetite and digestion. I know they are sisters, but they are night and day in that dept. So confusing....

Peg- that is great! When my dd was in counseling, a few times the therapist suggested something, and I thought- wow that is NOT going to work with her- but tried it since, well, we were desperate. And you know what- the ideas worked! Kids never cease to surprise and amaze us

Doug- I am so sorry. My daughter got H1N1 a month after she has plasma pheresis (and was perfect at the time). We did tamiflu within the first 12 hours. It stopped the flu. Twenty four hours later, she started spiraling down into a pandas episode. We quickly went to a one month steroid burst, and she has been doing really well since (this was in November). So- I am not trying to scare you, but to have you be prepared. I would discuss the possibility of a steroid burst (a months worth) if pandas stuff starts flaring, with your doc, now, so you are ready. The good news is, my daughter did well, and although I was upset, it gave me hope that we can manage this thing. Keep us posted- and hang in there. And, I think if I were a drinker, I would be heading that way as well

I get the liquid zith a month at a time. The pharmacy does not mix it, I mix it at home, due to how long it lasts. My kids HATE meds, but take the liquid very well (with a little chaser of chocolate). This way I only pay one co pay per month. When we have pills, I crush them up and put in a spoonful of daughter's favorite ice cream, and spoon it into her mouth. Also with a chaser of chocolate. Chocolate solves a lot of problems at my house

Can you find a local neurologist who works with TS a lot? They may be able to help you as far as what the chances of steroids affecting a TS patient would be. I would also consider talking to Dr Trifiletti about this, you could email him. I totally appreciate anecdotal stories, and really believe them, but it also helps to look at the big picture, including the real chance of whether your child has TS (has anyone told you that?)- and the chance of steroids triggering debilitating tics. Dr K uses the burst as a diagnostic tool. I would email him the stories you have heard, and your concern about the burst, and see what he thinks. Do you have any other options with him other than doing a burst? My girls don't have tics, but the bursts REALLY helped them (though in most cases temporarily).