dcmom

YES! My pandas dd age 6, will remember something minor from THREE years ago, and get upset over it now.

Sorry- I am one of the culprits. My dd had plasma pheresis, which I typically write as pex to make typing faster, simpler. You are correct, however in the differences. I believe all on this forum have actually had pheresis and not pex.

Well said peg. Dr L told me we have to do what works. That is it in a nutshell- for our kids the studies will be too little too late.

Regarding pex and ivig- unfortunately for all of us, the science is just not there yet for our kids. So, to some degree this is all experimentation. That being said, these medications and procedures themselves are not experimental. They seem to work for some kids, not for others, and for varying lengths of time. My daughter had pex. She was extreme in the sense that she had an overnight onset, and had a lot of trouble functioning in daily life. Getting to school, and enjoying simple things became hard for her. We did antibiotics and steroids, she would improve, and then we would have another trigger. I vowed to pursue treatment aggressively. I pursued pex for Julia with Dr Latimer. Luckily, our insurance pre approved (although are now denying). At the time we went for pex for a few reasons: a family in my neighborhood had great success with it, many who had ivig on the board were relapsing or not seeing great improvement at the time, we wanted to avoid introducing a blood product if possible. This being said, we were, and still are, very open to the possibility of ivig in the future. The pex showed us the real Julia. She was 110% immediately post procedure. Obviously it was not a cure, because a pandas episode was triggered by H1N1 not too long after. We were able to stop that episode immediately thanks to steroids. I do believe she is closer to her true baseline today, because of the pex. I have heard Dr T and Dr B's concern about pex for immunecompromised patients. The HemOnc team at Georgetown did immune testing prior to pex, and Julia passed. I am sure if there was any concern for a child, they would discuss it with the parent. What was explained to us, was that pex removes the antibodies (good and bad) from the blood. It does NOT remove the immune memory. According to the docs there, the immune system is back to normal within a few weeks, and if exposed to something in the meantime- the immune memory would create antibodies. How does this differ if you are immune compromised- I am not sure? Unfortunately, for the milder pandas kids, like my older daughter- the obstacles to these kinds of procedures are great. There are risks, they cost a lot, they are stressful, and there are no gaurantees. So I can imagine for parents of these kids, the constant agony of whether to pursue them or not. Most of the great docs for pandas, will help you get the treatment you want and your child needs. I doubt if any of them will say your only choice is to do this... or you must do this... Unfortunately, you need to evaluate the info, your child's condition, and do what feels right to you. Impossible, I know.

Our experience with steroids has only been positive. Both my girls have pandas ocd, along with other symptoms (no tics). Younger and more severe dd has done 2 bursts. The last one we did, stopped a severe downward spiral after H1N1 with one dose. By four doses she was almost symptomless. This has lasted since Thanksgiving until now (hopefully longer). Older dd with less severe onset, did a steroid burst recently as well. It worked wonders for her mood, diet, and took the edge off of her anxiety. The ocd around a few issues is still there, but the grip is not as strong. I don't know that this means we won't need ivig in the future- but we will try antibiotics with a few steroid bursts (when needed) , before we would progress to IVIG. The dosage of steroids is similar to if your child had asthma, or a bad case of poison ivy. I haven't found ibuprofin to work for us, yet.

WorriedDad- This is HUGE! It brought tears to my eyes. Congrats to you and your family! Enjoy the improvements! I can say that after a combo of pex (for one), zithromax, and steroids my girls are doing really well today! We have had peace and happiness and normalcy (wll, for the most part) in our house since Thanksgiving. The girls are not 100%, and I don't know what tommorrow will bring, but I am grateful for every good day that we have.

We did the same thing as Meg's mom. Julia had lots of trouble in the morning getting ready for school. We started this after she started antibiotics, and was not in THE worst part of her episode. We required only three things: she had to get dressed, brush her hair, and go to the bathroom. Then she could pick a prize (she loved bringing the prize to school and showing to her friends).I bought a BUNCH of stuff at the local toy shop, and the dollar store (trying to stay at $1-3 per item), and wrapped it and put it in a bag. The decision was sometimes hard- but she would do it (I think the fact that they were wrapped helped). Her older sister participated as well- which helped make it more fun. The psychologist felt she needed a fun, IMMEDIATE, tangible reward. (oh, and stickers got us no where). Luckily, we did this at the end of the school year last year - it could break the bank! We haven't needed to do it this year at all- and the funny thing is, she mentioned it recently, but couldn't remember WHY we did those prizes

Somebody chime in, but I am thinking Tanya Murphy is doing a study in FLA involving antibiotics, and I also think Saving Sammy's doc from Mass is also doing a study. I have to be honest here, I would NEVER put my kids in an antibiotic, or other medication study at this point. I wouldn't risk the possibility of placebo, or of something that might aggravate their condition. This may be selfish- but this is such a tricky disorder, I couldn't bear to rock the boat. In good concience I couldn't recommend another parent doing this either. Maybe there are some types of studies I would be comfortable with, but not the double- blind placebo type studies. Sorry. I, of course, would like more research, though. Heck if someone just followed all of our kids...

We had no "self-awareness" here.... For example, the fact that one day dd woke up and could no longer get dressed in anything but pjs was not unusual- it was just that none of her clothes fit anymore! There was NO ability for discussion, reason, calmly trying things out- they didn't fit, that was it, she would wear pjs. Sigh. Glad that one is over (for now).

Hoping that we haven't heard anything is good news, I am sure you have a lot to process....

swww187- Why do you think your son is non pandas? Did you say you see Dr L? What does she think? Did your child have strep? Try antibiotics or steroids? I can tell you this, I have one "classic pandas" daughter, age 6 and one "probable pandas" daughter, age 9. I had the "probable" one's cunningham numbers done about 6 mos after positive strep culture and onset of symptoms. It was normal at 109 (I think). Her other numbers, however were very high. You have to remember this is a research study- nothing is conclusive. I emailed Dr C, and she agreed that her anti neural antibodies were high- and usually at that level there were symptoms. I can also tell you I had a happy, outgoing, confident, enthusiastic, energetic, girl who loved life, loved to eat and go out and try new things. Then, two weeks after my pandas daughter she came down with strep. Since that day (it took us a while to connect the dots, first attributed to stress of sick sibling, and growing up) she no longer had interest in her beloved after school activities, she had daily stomachaches, she never wanted to go out or do anything (to the point of panicing) she became very afraid of getting sick, throwing up, sick people, germs, ticks and lymes disease, she had temper tantrums, bouts of crying, and I would say overall depression. Finally, we connected the dots and brought her to DrL. She thought it was a definite possibility that she was pandas, even with normal cam kinase. We treated her with a month of zithromax- no major change, we recently completed a month of steroids- MAJOR change. She is almost back to that old girl! She did GREAT on the steroids. She is happy, the anxiety is almost gone, stomach aches starting to subside, etc, etc. So, what I am telling you is, sometimes you have to go with your mommy instinct. The cam kinase is not the end all, be all of pandas.

I am sorry to say that I agree with fuelforall (michael). My dd also has had so many issues of "cognitive inflexibility". It leaves a parent nervous all the time, and walking on eggshells. I knew the extreme version of it (temper tantrums) was pandas related, but I got to thinking she was very particular normally. Well- after pex- I would actually term her an easygoing kid! (Although since then she had an infection and is not 100% back to baseline.) So now I know for sure- this inflexibility is not who she is- there are some medical issues going on when she is like this. That being said, I certainly think you have to deal with it behavoirally, psychologically and medically at the same time- but I think you can try to make a bit more accomodation since you know they are sick.

Hi familyof4- I think as far as treatment goes you need the whole package in this order: long term antibiotics, steroid burst, possible ivig. It would be terrible to make the investment (time, money, stress, etc) in ivig, only then to leave the child vulnerable to reinfection. How long term the abx need to be, seem to be the million dollar question. For many when you go through a rough pandas episode, then the treatment path, when you get your child back you are not willing to take the risk of backing off of the antibiotics. As far as the BBB is (Buster can answer this better) I think it is a somewhat relatively new and not totally understood science. There are somethings that maybe in some people open the blood brain barrier- usually temporarily. Having anasthesia does not cause pandas, although some of us consider the possibility that it temporarily opens the bbb and may cause an episode or uptick in behavoirs for those with pandas. The bbb can open- but you still need the autoantibodies there to create the problem. I would never put of necessary medical or dental procedures because of this. If there are elective procedures, I would put them off untill my child was in a healthy state- if possible.

Vickie- My dd definitely has some residual ocd issues. I plan on re starting therapy for her (hopefully with an ERP trained specialist). At this point I am just giving her some time to be a kid- she is VERY resistant to therapy, and HATES to discuss anything- so it may be something where I have to go to learn the tactics to use at home. Her main issues are: on/off minor urination issues such as avoidance and wiping compulsively, sensory issues or only wearing certain types of comfortable clothing, having to dry herself extremely well after a bath, food issues of being very particular in how stuff is arranged on her plate (forget serving her something). After what we have been through these are very minor- but of course moving forward and growing up, I would like her to be able to conquer these issues to live as anxiety free as possible.

peg- did you have your appt yet?

bubbasmom- Unfortunately the P for pediatric, in pandas, was (possibly) an artificially imposed requirement used by researchers when "discovering" and studying the post streptococcal neurological issues. It seems some grow out of it, and some don't. I was also told early on by a doctor that they usually grew out of it, but later in the appt the doc also told me about a college age pandas patient still having ups and downs. Hopefully, as they mature, they get sick less, certainly are exposed to and get strep less, and have a maturity level that can help them manage the disorder. My daughter is much younger than your son, and to be honest, I try not to look that far into the future- I understand your devestation- but hang in there, I do believe all of our kids WILL get better, it is, however, a long road.

Lauren'smom- I am so sorry to hear about Lauren's struggle. My daughter had pex with Dr Latimer (no IVIG as of yet). It has really helped her, although is has not been a cure. I do think that the combo of IVIG and Pex (I am not sure of the order) is the best treatment for most of these kids, unfortunately it is just not that accessible. Dr Latimer's office will help you with the pre approvals. What type of stomach issues is she having? Is it antibiotic related? It seems many kids her (including one of mine) have stomach issues related to pandas. I wish you luck with your appt with Dr L- I think you will really like her. Keep us posted...

My milder pandas dd- age 9: germs, getting sick, sick people, ticks, lymes disease, throwing up. She used to resist going out and eating anyplace other than home. She has improved! Pandas dd- age 6: she didn't really have fears- more other ocd/sensory/anxiety issues.

vickie- I have actually wondered the opposite. Did the chronic kids have a sudden onset, but was it milder, and at a time when it could have been considered a "stage". I know lots of pandas stuff, esp if it was a bit milder, are things other kids go through at times: bathroom issues, picky eating, defiance, tantrums, clothing issues, school and/or focusing issues. Lots of well meaning people were telling me Julia was going through a "phase". Then maybe with misdiagnosis and time, things progress to an unmanageable point. Are these kids harder to treat because the strep has gone intracellular and will take longer to get rid of, and because the behavoir has been in place while the brain has been developing- so do they need a bit more therapy and time. I have to look back and read the posts- I am not sure if I understand what is meant by "chronic"? Is it that the child has had this since they were very young? Or is it that they have not gotten back to baseline since pandas started, don't respond to treatment? Julia had her first pandas episode last January- we are close to our one year anniversery. Although she has responded well to treatment- I do feel in a way she is chronic: out of the last 12 mos, about 7 of them were spent in pandas episodes. She is doing really well now- but she is not 100%- she still struggles with some low level issues. I hope that we can maintain the progress she has made- but at times I am very fearful of the future. It is so hard- we have such a hard time getting the appropriate treatments, and then when they don't work......

How is Lauren? I assume by your question, she is still having issues- I am sorry. The insurance thing is tough. Dr Latimer's office and Gtown University dealt with my insurance company and had plasma pheresis pre approved. We went and had the procedure done. Then they denied it! We are now on our first appeal. To tell you the truth- I am just glad it was pre approved- it would have been a problem for us to pay the 30k up front- we probably wouldn't have had the procedure done. It has, in my opinion, been really helpful to Julia (not a cure, but I think has let us stay closer to baseline). We will deal with the insurance company and the hospital over time....

Michael- What do Dr T and Dr Bock think? I hope you get relief with the Augmentin. Although, so far, my dd is not chronic- it did take about 30 days to see a difference on the antibiotic (the third we tried). Has your son ever done a steroid burst?

smartyjones- I don't have much advice to offer But just wanted to say- I know how tough it is. I do have to say, then when my dd is really well - it is not an issue, when she is doing ok- it is a minor issue, and when she is having an episode or flare- it is more of a problem. She is VERY resistant to working on stuff (we have seen a psychologist in the past). I have found, that as she improves in general health this issue melts away- so in a way I hate to make a huge deal out of it. Right now, we handle it like: everyone (me and her sister) has to go potty before we leave the house. For the most part she pretty easily makes it through the day without using the bathroom- but she will go if she has to. (I think it is fairly common for kids to not use the bathroom during the day at school) How was he over the summer when you desensitized him? I am just wondering if he improved in 73 days because he was coming out of a pandas flare up- and is he now having issues in general again- or is it just the potty stuff? Frustrating...

Karen- So sorry for what you are going through. Just a few quick thoughts for you: It seems like different antibiotics work for different kids. I would consider finishing the zithromax, if still no improvement consider going back to Augmentin if you felt that worked better- read some of the recent posts on dosing for augmentin- preferably ask for augmentinXR. Be sure to give daily probiotics. We bounced around to a few antibiotics, zithromax finally worked for my daughter- but it took 30 days to see about 75% improvement, and she had only been sick for a month. I wouldn't consider going down to a twice weekly dose until he has been 100% for quite some time. The other issue- I have definitely seen a sawtooth pattern of healing. So in other words there will be spikes of behavoir- look at the weekly trend (I know that is hard) My daughter (and many others) have really benefitted from a steroid burst. I think this can be more nervewracking for those with tics, because if it is TS it can aggravate the tics. Hopefully some others will chime it- but I would definately bring it up to your doc. I suggest the monthlong burst- 2 weeks of treatment dose, 2 weeks of tapering down. He will get better.

Steph- I agree with Melanie. When your child's well being is at stake, I don't think it is the time to educate the doc- unless they are VERY willing to do what you say. If there is any way you could get to one of the pandas docs- it will be so worth your while. We all know what these kids need: full strength, long term antibiotics (with the ability to try whichever ones may work), steroid bursts, and very possibly IVIG and/or plasma pheresis. We as parents really need the mental support of the doc. It is such a hard disorder to deal with on a daily basis- that I can't imagine having to go in and fight with the doc.

momtotaylor- glad to hear all is still well with you! It is so strange that Taylor still has this issue- it has been a near constant (although 100 times better) for Julia also. Julia is also still resistant to panties unless extremely necessary. Ugh! meg's mom- that was a great post, thank you. I am planning on starting Julia with an ERP psychologist in the near future. We all just need a little break first. Just to add more to this urination issue: this was Julia's first, longest, and one of her biggest issues. She has taken the opposite approach as Meg- she goes to the bathroom as infrequently as possible to avoid the uncomfortable issue. I require her to go before school, or before we go to an activity- other than that she is on her own. I probably should set several times a day, and give her a prize for that. Since pex, this issue was pretty much gone, and her potty avoidance had eased. However, over Christmas break she started going multiple times each time she goes to the bathroom. She will leave the bathroom, and then in a frustrated huff run back "why does this have to happen to me?" and try to go more (which she doesn't). It has been at a really low level- although this morning she REALLY resisted going to the bathroom. Time to start the prizes I guess. Another topic: Does anyone else's child really refuse to let you (or themselves) brush their hair? Suzan- I hope things continue to go well at your house