dcmom

Wendy- I definately believe it is certain strains of strep that cause pandas (along with a genetic succeptability). My pandas dd had a "normal" occurance of strep throat one year prior- high fever, sore throat, etc. Upon discovery of pandas in younger daughter, I cultured her older sister. It was negative. Two weeks later she had general tiredness, in a panic, I cultured and she was positive. With whatever strain they had- neither had typical symptoms. I also believe some researchers have noted that pandas causing strep did not cause typical pharyngitis in many of their patients. Eileen

Susan- I am so glad you rec'd the numbers. I am sure I know how you are feeling. I was afraid dd's numbers would come back non pandas (then where would we be), but now that we have a confirmation of what we know, in black and white numbers, I am a little lost, in a sense. I guess I am starting to feel that this is inevitable, that it WILL be back (if we are healing now), and that we need to do something. Sigh.. I will be talking PEX with our doctor next week. Sure I will be posting much more after that... Hang in there. You know you are doing AWESOME for Meg. Where would these kids be without parents with the means (money, brains, never give up attitude, and some free time to google)? I know there must be countless kids who have pandas, and it is NOT recognized. My heart breaks at that thought. Our kids really are the lucky one, ya'know. I know you will do what she needs, you will figure it out, we all will. Eileen

Wow, I am speechless and freaked out with you. I have another daughter, age 9. She also had strep (without the normal symptoms) when pandas dd did. Since then, she has had daily anxiety causing stomach aches, and moodiness (short temper, depressed, tears, etc). Many times I have thought to myself (after she has a mood swing) "I should have her tested for pandas". But, I calmed myself down by saying she has no ocd or tics. We have done the whole GI route, and they have found nothing. I have kind of attributed it to her sister having pandas, which has been a huge stress on the entire family (they are buddies). But, in the last few days I have looked on Dr. K's website, webpediatrics, and saw his description of adolescent onset pandas. Have you read that? I am sorry you are going through this. Please let us know what you find out. Dr Cunningham is very responsive, maybe she can give you some insight. Were both of your daughter's other numbers (anti neural antibodies) elevated? What made you have her tested? Sadly, there are many families that have more than one child that has pandas, there must be/ there is a genetic link here.

Hi momofgirls, I am sorry you are going through this. Unfortunately so much of pandas is unknown. You need to find a great doctor- tell us where you live. The "hallmark" of pandas, is sudden onset. However, I think many parents here, with pandas kids, did not have that. This may be a criteria imposed by doctors and researchers. Also, an initial episode could go undetected if it is mild. My daughter did have an overnight onset, but also gradually worsened. Really, no one knows enough about the mechanism to know... If it is pandas, and your daughter has had it for a while, be prepared to do a longer term on the antibiotics. For us, we caught pandas (we think) 4 weeks after it bagan, first episode. She still needed a month of zithromax to see a dramatic improvement (this was after 2 wks cephalosporin, and 2 weeks amox). Time is also a factor. Consider doing the "pandas test" by researching doctor Madeleine Cunningham. Best, Eileen

This is a hard one to answer, and what we will be going through in the next week or so. My dd recovered from her first episode by 30 days of daily zithromax, and then I would say another few weeks of just time (while on prophylactic). She did make it to a point where I would say she was 99.5% better. Her mood was great, she did not have that emotional lability, she had her appetite, no anxiety, etc. The only thing that did hang on, was, when she went potty at home she wanted me to wipe her (we had lots of potty ocd issues). I think this was residual ocd type stuff that Vickie talked about, but there wasn't the anxiety wrapped around it. We were working on it, when she had her second episode. We are now hoping that we are recovering from the second episode. We are tapering her off of a steroid burst. Hopefully the improvements hold. She still has lots of low level stuff : trouble sleeping, moodiness. Could this be the steroids? Who knows. So I guess I would expect them to be at close to 100%, but I do think they remember the stuff they went through, and maybe that "teaches" them to be a little more anxious about things. Does this make sense? We have not done IVIG or PEX, yet. We are considering it. We will see what happens in the next few weeks. My dd is really able to hold it together at school now, she does get very irritable when she gets home though I hope the healing continues for your daughter!

I am not sure if he is taking insurance- possibly not. Unfortunately the trend seems to be that many specialists do not. In DC it is hard to even find a decent ped who takes insurance. That being said, the initial appt with my neurologist was $400, luckily my insurance covered half. The follow ups have only been around $100 which I will be reimbursed for part of. Also, one doesn't need to see a neurologist frequently. Maybe every 6 mos if you are only doing antibiotics, a few more times if you decide to do IVIG or Pex. Those treatments will be done by other docs. I don't want to speak for any doctor, but I know he helped Julia by suggesting a change in her antibiotic from amox to zith, and letting us continue for almost a month, until we saw a huge improvement. He was very open with me regarding what is NOT known about pandas, and strep, in general. I think the chief of Neurology at Morristown was not a pandas believer- maybe that is why he left, and/or why he didn't pursue other treatments while there. I know he plans to focus on pandas kids in the new practice, and he is very interested in the science of pandas. It is a start, for those in the NJ area.

Just wanted to let everyone know that a great, pandas knowledgeable doc is setting up his own practice in Northern NJ. We saw Dr T, he was very knowledgeable and helpful to us, and very compassionate. A great things for those in the NY/PA/NJ area. Eileen

Thank you both for your replies, it is helpful to be able to bounce ideas off of others who understand (even more than I do). I will see what Dr L thinks next week. I guess when I got her #s from Dr. Cunningham, I came to the complete realization that pandas is here and it is not going away I guess I am mentally preparing to DO something. Will def get her tested by an immunologist first. I guess I really think pex, with ongoing ivig over a period of a couple of years, could be the answer. The tough part is, we won't know in time for our kids. Hopefully more will be known before they have children. E

SF Mom- thank you for your reply. I totally agree with you. During her first exacerbation (we are in the second one), I said- if it happens again, we will do IVIG or PEX. But now that it is here, and hopefully gone, I am wavering. Are you convinced IVIG will really help, even if they are at 90%? Is there a reason you favor that over PEX? I am considering both procedures together. I will talk to our neurologist next week. I have read somewhere, and heard from another neurologist, that sometimes pex is performed, and then the patient receives a dose of IVIG (maybe not as much?). It seems to make sense, and I kind of feel if we are going to go through this- lets make sure we knock this thing out of the park. E

I have been anxiously awaiting the results from Dr Cunningham's test. Now I have them, and my mind cannot wrap around this. As I posted before, Julia's anti neural antibodies were elevated, and her cam kinase is 161%, just above the mid range of the pandas group. Now the question is what to do with this? Those numbers were before the steroid burst that we did. She is ok, now. She had three rough days last week, but her BF had strep. Now she is doing well, except some irritability and difficulty getting to sleep. We are still tapering off the steroids, so I am hoping they could be the cause- will know in a couple of weeks. If she is well, I guess we won't do anything other than antibiotics for now. Daily, or twice weekly? But what is my long term plan? Pex, IVIG, or try the high dose antibiotics approach of the "saving sammy" author? Does anyone have more details of what they did? I am thinking, if she is well, to try that- and if things go south, then move on to ivig and pex... Can anyone give me insight at to your long term plans? I guess since IVIG and PEX are really not proven to be a "cure", there is no point doing them if she is doing well now?

Suggest to your friend to check out Dr K's website (webpediatrics.com- I think). I believe he states on there that SSRI's are not helpful for pandas. I also believe he may have some overseas contacts- she might want to email him and ask for a referral, or if he would speak to her doctor. Even trying a long course of antibiotics should be helpful, right?

Hi Kathy- I just wanted to tell you, I have a similar experience. My dd can have a complete meltdown- yelling, crying, screaming, and hitting over minor things at home. This would have been totally out of character before pandas. She also has major potty phobia/issues. And forget it if you are in a public bathroom with an auto flush... But at school, she totally holds it together. I don't think they totally believe me either, that she has issues... Sigh... Yes, a neurologist can rule out other things (lymes, etc.). Then I think their course of action would be antibiotics, then to steroids, and/ or maybe ivig. That would be any doctor's course, I think, who believes in pandas. I would suggest getting a list of all of the neurologists, and maybe immunologists on your insurance plan within an hours drive, and calling and asking them point blank if they TREAT pandas patients. You may be lucky and find someone...

Our dd, age 6 (5 at onset) presented overnight with ocd like symptoms. She also has/had mild chorea.

Hang in there Manda. I am sure once you see Dr K, and get her on a high dose of antibiotics, or IVIG, things will start calming down. It is so painful to see them lose so much time, and feel helpless. I would not worry about school, once you get the pandas under control (I don't think it should take THAT long), she will catch up.

Hi Karen. I am so glad to hear your daughter is doing well! We are in a new mild exacerbation, and trying to figure out what course to pursue... I thought I would give you my thoughts, for what they may be worth. I would consider holding off on backing off of the zithromax, unless you are seeing ill effects from it. My dd was doing great from a steroid burst, untill her BF was diagnosed with strep last week. At that time she was only on twice weekly zith. While I don't think she got strep (we have since upped the abx), she definately has reacted to it. I wonder if she was on daily zith, if that would have helped modulate her immune system a little more. I know is stinks to have them on the med, when they are doing well- but it is nothing compared to an increase in symptoms. Second, I would definately go for the immune system testing. We are trying to get that done, as well. It would be great to rule out any other underlying issues, which some other kids seem to have. As far as the Cunningham test- well, you KNOW she has pandas, right? So, if getting all this testing is as traumatic for her as my dd, I might wait until, god forbid, she has another episode. It doesn't seem you really need a baseline- Dr C kind of has a baseline. And apparently her numbers would be higher during an episode. We did the Cunningham test, and just rec'd dd's numbers. They seem high, but I won't know what they mean until we see Dr L. Good luck! Remember, you are doing your absolute best for your daughter, esp in the face of not much science to help you. I hope she continues to do well!!

Hi everyone. I am also trying to figure out my results. We also did not get the Cam Kinase yet. My numbers look high I am so lost at what to do? Do I push for IVIG, PEX, or really increase on the antibiotics. Sigh... Anti-lyso 320 anti-tubulin 4,000 anti-dopamine1 4,000 anti-dopamine2 8,000 Can anyone that can explain what the individual numbers mean... Eileen

When we had our first episode, dd did 200mg/day. (She is probably around 40#) It took 30 days on that dosage to see MAJOR improvement, small improvement came after about 5 days. We then dropped her dosage to 200mg, 2x week- prophylactic dose. She continued to improve untill back to 100% herself. She is now having issues, post T&A, so I have upped her dosage for now. Good luck with seeing Dr Latimer. She will want you to have Cunningham's test (if you haven't), so I would consider having the blood draw now, if he is in an exacerbation..

I am so happy for you! It is so great to hear good news! Questions: How old is your daughter now? I started buying lifeway kefir (not goats milk), but I have not been giving it to her regularly. Now that school is in session, I want to start. How much per day did you give your daughter/ how much does she weigh? I have no idea how much my dd should have. Do you think the regular kefir would be as beneficial as the goats milk? Where do you get it? What brand? Thank you!!

Hi Suzan- so sorry about the blood draw. Definately hydrate her before you try again, and consider the numbing creme (emla?) if you haven't, it really helps. One of our neurologists did titers, my dd's were normal, we already had documented strep, I don't know why he did either & I won't have them done again. I think doctors (even if they are pandas believers) prefer to have numbers backing them up. Good luck, keep us posted.

LLM- that is great news. This illness is so tricky, but it definately seems pex has worked for most. I was thinking- pex removes the antibodies, but if there was alread inflammation, that may take time to heal. Would it be possible to try a steroid burst to jumpstart that healing? Please let us know what the mom you make contact with says. We are getting closer to pex at Georgetown, so I am desperate for any and all info. Hang in there!!

Help, please. In a nutshell. Daughter was in second episode of pandas. She did a steroid burst, and within 3 days was about 98% back to normal (lasted about 2 weeks). She is now tapering off of the steroids (she has a little over a week left), and is on twice weekly zithromax.. This past week was the first week of school. She did great for most of it. On Friday she woke up in a really bad mood (you know that kind of pandas scary bad mood- totally on the edge) She refused to go to school, was in a panic. Thankfully, I did get her there at lunch. Last night, she had some "bad thoughts", like she did during pandas episode but mild- went to sleep. Today she had one or two minor (compared to worst pandas time but totally out of normal character) temper tantrums. So in other words I am seeing glimpses of pandas returning. I found out her BF went home sick from school Friday and has strep. I am planning on calling Dr L in the morning, but kind of want a game plan. Do I not panic and continue the path? (not likely) Do I up her zithromax to daily? for how long? Do I really have to get her cultured- she is on proph zith- would it show up? (very traumatic for her) Do I ask for another week of steroids? Have we now negated all the improvement we made because of the exposure? I am planning on sending her to school, but her other classmates could have caught it- and may not have been tested yet... Thanks!

Sigh. Well the school year begins with a bang! Just got an email, Julia's best friend has strep. Luckily, they are not in the same class, and do not eat lunch together. But, they do play at recess, and hug constantly. Julia is on zithromax 2x a week prophylactically, and tapering off of the steroids. She has been doing fairly well, minus some separation anxiety. Should I do anything? I guess just wait and see...

I have also been thinking about this. I am trying to talk myself into remaining very calm though. I feel the media and the gov't tend to blow these things way out of proportion. They sound like drug pushers with this vaccine, and I am not buying. I am going to do my best to disinfect the house, and us (when we come home) daily. I am going to keep my eye on how many kids are getting sick at school - if at any time it looks like a larger than usual percentage- maybe we will take a week or two vacation. My kids are young, 6 and 9, I have no worries about keeping them out of school if necessary. I am trying to remain as clear headed and positive as possible- which is a challenge for any pandas parent

nevergiveup- We have seen Dr T a few times. He is a definate, no question, believer in pandas. He is very knowledgeable on the science of it, and extremely smart guy. He has recently moved to private practice in Middletown, NY.

Are you in the Wash- Bal area? If so I can recommend some drs. I mistakenly went to a Hopkins trained immunologist early on. He told me to my face that she looks healthy, and pandas is not proven. We had already had a diagnosis from a well qualified psychiatrist that worked with NIH. I am currently looking for an immunologist- Hopkins is the top in this are- I will not make that mistake again. I don't know him specifically, but I think it would be a waste of time to see anyone who doesn't believe in pandas. After what it has done to my daughter and family, and everyone else on the forum, I would have a hard time giving credibility to anything that doctor said. Good luck. PM me if you are near DC...