dcmom

My two girls have had this with flare ups. Our neuro had said she spoke to a urologist who mentioned that the inner control for the bladder (I think) is controlled in the basal ganglia. This is their theory on why the urinary frequency. I think this happens with some other illnesses that affect this part of the brain- I had done a little looking into it a year ago, and I thought this looked pretty reasonable. I would think over time, maybe quite some time, without an exacerbation, that this will get better. I would also consult a doc if everything else seems to be good, minus this one issue. PANDAS has LOTS of symptoms, I usually blame everything on it- but it is important to get stuff checked out if it persists alone (I think). Ay- more doctor's appts

Hi Maggie- My two girls course of pandas has followed pretty closely what has been described in what little credible literature there is, mostly by Swedo. Practically, what this means is, in between episodes my kids remain very close to 100%- however they relapse on average twice per year due to illness, some smaller relapses due to illness exposure and other immune challenges (although, knock on wood, this seems to be a bit less as time goes on). In theory, I believe that this is because they now have an autoimmune disorder, called PANDAS, PANS, (or sh$$ on toast). We have been working at aggressively treating flare ups with some success, to give them both a mostly normal life. As far as the deep question of WHY, or the search for a cure, or the way to close the BBB- well, I would say that is the million dollar question, and one that (although I think I am pretty smart) I know I will not find the real answer to. Closing the blood brain barrier is a big direction for MS research as well. The medical community just does not really know why some are succeptible to autoimmunity, and for most autoimmune disorders, there is no cure- there is remission. I may be in the minority here, however, coming to acceptance of this as a long term disorder, and focusing all of my energy on management, has done well for our whole family in the past couple of years. My current opinion is that steroids are underused in pandas treatment. I also think in the future, we will be able to use meds available for other autoimmune disorders in order to regulate the immune system- at least for a time. I think that the doctors that treat pandas are great- yet I do think there are therapies out there, already in use for other conditions, that are not being considered for pandas.

I have been wondering if any of our "tic" expert moms could chime in.... We don't have tics, so I know NOTHING about them Dr McVige certainly said these were not "tourettic- type" tics, but she didn't really seem to have a list of facts (neither did Mechtler) about why- which I would think a competent doc would be able to rattle off. So, what do we collectively know about tics- in light of what we are seeing in these stories....

It is based on weight, and varies GREATLY by doctor.

Hi Momtoyo- I think we met last month Anyway- my kids have had great, long-lasting responses to steroids- so much so that for the last almost two years we use them for treatment, exclusively. We have not really seen too much worse before better, as far as pandas symptoms (increase or new onset of ocd behavoirs) but we have sometimes seen side effects from the steroids. We have seen increased appetite (a good thing for my skinny kids) and we have seen irritibiltiy get very, very high. So for example, the last time we used steroids was on my 8 yo daughter. She had only shown about a week of an onset/ increase of ocd, so we tried a 5 day burst (shortest we had ever done- but wanted to try short in order to use the least possible meds to get at this thing). Keep in mind, she weighs 44lbs and her dose was 40mg/day (so your guy is still not on a huge dose by any means). So the first three days were rough, rougher than the week previous. She had the ocd, and now she had MAJOR irritibility and a short fuse to go along with ocd- not a pretty mix. However, after the first three days, things got WAY better, and within a week she was back to about 97%!! She has stayed there for about a month and a half. So, try to take a deep breath. Look closely at what is going on- is it his regular ocd stuff being heightened by mood issues from the steroids? This is very possible. Hang in there! Come to the meeting next month if you can. Feel free to pm me if you like.

Dedee- I am just going to throw this out there- I did not have luck with the lyme route for my kids, and now consider it to have been a "distraction" from our real issue. (I know you will get many posts to the contrary, and I am probably the sole parent who will post this, but that is why I post it). However, for my girls, antibiotics have not been the silver bullet either. From a mom's eye, they clear infection well, however ANY immune challenge brings on autoimmunity and inflammation, and we only get relief from symptoms with immune mediating treatments: for us this has been oral steroids, iv steroids and pex. These treatments work miracles in our house, until the next infection. So- I guess my only suggestion is to look at your kids, have they had very positive response to ivig or steroids. If so, what happened after that. If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity. That is all I can offer- but whatever you do, I would say follow your instinct! I know Dr B works closely with Dr Jones (llmd), and will do lots of the same preliminary bloodwork, and if he thinks there is lyme, will get you on a "Jones- esque" treatment, so I think that will be a fruitful first stop, whatever path you travel. Sorry things have been so hard Eileen

Frog Prince- The unfortunate reality is that many parents need to travel, sometimes across the country, for pandas treatment I would try to get an appt with a doc experienced in treating pandas aggressively asap.

Hi Stephanie. Well congrats (I guess) on diagnosis and starting down a path of treatment. I do not and have not seen Dr B with my two pandas kids, however have seen several other pandas docs. To be honest, I have heard this confusion about what Dr B is telling his patients several times over the last couple of years- which really makes me wonder how he phrases things. I have become very pandas-knowledgeable, but am not a scientific person, so this will be a layman's explanation- however the science is correct. Hopefully kim or Buster will chime in with a more scientific explanation. When Dr B was talking about your son's immunity to 14 strains of strep- he is not talking about GABHS, or strep throat. He is talking about a bacteria called strep pneumonae (sp?), which except for bacteria shape, has no relation to strep throat. Most of our children were vaccinated against approx 12 of these strains at birth with prevnar. Testing for these strains is a method some immunologists use to test the immune system. The jury is still out on whether this is correct, some agree, some don't. Your son is not mounting a response to these strains, which means either the vaccine was faulty, it has worn off, or he has some immune deficiency. Most immunologists (and insurance companies) would then vaccinate with something like prevnar again, and re test titers. If the titers have not risen, they would deem you immune deficient. This is a way to get IVIG coverage. I don't believe Dr B will immunize a pandas patient, because of the potential for any immune challenge to exacerbate pandas symptoms. However, these titers do not measure your child's immunity to strep throat- they just do not, and I have seen this written about many times. If anyone has new info that shows any relation, I am sure they will chime in. I suggest doing some minor internet research on strep pneumonae and you will get a lot of info. There have not been adequate studies to date about strep pneumo numbers in the general population, so without revaccination, these numbers are relatively useless. It is widely accepted in pandas doctors, researchers, and parents that kids with pandas will react to strep, other illness especially respiritory illness and to illness exposure. Many report reactions to loose teeth, vaccinations and other immune challenges. There are some people who carry the strep bacteria in their throats (or other places?) and it does not make them physically sick. They are called carriers. I have not experienced any issue with this, however others on the board have. Theoretically a carrier "should" culture positive. It is good practice to culture your entire household at this point to be certain there are no carriers. Carriers are typically treated with a course of clindamycin. Steroids are a serious medication and their use should be minimized. However, my girls have been eXTREMELY steroid responsive, and using steroids several times per year, over the last three years, has allowed them to live most of their days pandas "symptom free". Steroids do two things for pandas: lower the immune response and combat inflammation. For some children (and IMHO this depends on the dosage, duration and how long the child has been sick with pandas, and how advanced the episode is) steroids are only a temporary indication that something autoimmune/inflammation related is happening, and they must move on to stronger treatments, and for others steroids have offered very long term relief/ and end to the current pandas exacerbation. I think most parents on this board have been very happy with Dr B. I have heard reports of great professionalism and compassion. I must suggest however, that whomever your doc is, you become as educated as possible about pandas issues, and be a partner (or in my controlling self's situation- the director) of your son's treatment. IMHO it is very important to get more than one opinion if possible, and if your son is not getting better under one doctor's care, to move on. Hopefully this is the beginning of healing for your son!!

I have two children with pandas, who have responded very well to treatment, and NEITHER have tics. They present mainly with ocd, but also urinary frequency, difficulty sleeping, anorexia, sensory issues, anxiety, temper tantrums, mild agoraphobia, etc. When they are not sick, they are 100% normal thanks to pandas treatment. My suggestion: get to an experience pandas doc for proper evaluation and treatment asap.

I was just coming back to add: Dr Drew IS stupid! But I have seen others have already commented PMom- Has your son read Saving Sammy? I have two copies put away for my girls (11 yr old has read about half of it). I think it will be required reading for them before they go off to college- if they have not read it already. I do think it is important for them to be very knowledgeable about pandas, its presentation and its treatment, by the time they are young adults.

bigmighty- when done with the steroid taper, consider immediately starting a taper of 5 days of advil. I read about using advil to further taper off of steroids on an MS website. They said they used it to avoid "rebound inflammation". We have done this several times with good results (could be coincidence, but I thought it made sense). I do something like- starting the day after the last steroid dose- 3 advil a day X 2 days, 2 advil a day X 1 day, 1 advil a day X 2 days. Good luck!!!!! Oh- BTW- this is an excellent time to do ERP therapy to accelerate the shedding of the ocd.

Pmom- I am so sorry. I do think it is really hard for our kids, and in a way, some of that doesn't change because they are better. Every child struggles to feel "normal". I think this is the hardest part of this, or any, disorder. Our situation is different, because things are fresher for us, and we still have some ups and downs. My kids have pandas ocd (not tics), so we have done our share of therapy. In our house, everything is out in the open. Well, almost everything. We work at "normalizing" pandas and ocd by framing it in the light of any illness/ disorder like asthma, diabetes and severe allergies. My older daughter had a BF in DC that had diabetes AND severe allergies. She couldn't eat almost everything (gluten allergy, chocolate, PB) and needed daily insulin shots- this really helped her, knowing someone else with an illness. We agree that it sucks, and there should be a SHORT time to feel sorry for yourself, but then it is time to accept it and move on. We talk A LOT about struggles of others (divorced parents, poverty, learning disabilities, illness, etc). We stayed at the ronald mcdonald house this summer, and it gave us all (esp me) PERSPECTIVE. We try to do community service work that brings the kids face to face with others that have struggles. I share stories of the kids on the forum. My kids still feel a lot of sadness and some anger that they have pandas. That is natural. My oldest has accepted pandas a little more, and is focused on making a positive. Right now she wants to be a neurologist, and feels she will really understand her patients because she has suffered. My younger is not there yet, and cried for 20 minutes the other day about going to the doctor (why can't I be normal? why me? etc). I would imagine that boys "talk" less. They probably hold more in. It is good that he ranted- and his feelings are understandable. I am sure it brought up a lot for you

Thanks everyone for the thoughtful replies! I read through quickly, and will re read tomorrow morning. I am going to pandas support group tonight, so will discuss there as well. A year ago I would have NEVER considered going off the abx. We did full strength, daily zith for both girls for over 2 years. But last April, the biggest fear happened. Both girls caught strep, even while on multiple abx. We caught it right away and treated with clinda. They both went into an episode- but you know what- we responded quickly with steroids- and avoided the worst. Within less than a month after starting steroids, they were back to 100%. So I started thinking, why the abx? Why not respond quickly to the pandas only? So we stopped for the summer, and all was well. Now we are on twice weekly. I no longer believe I can/ nor do I want to keep them from ever getting sick. We react to viruses as well a strep, so strep doesn't stand out as my sole fear. I do wonder if we are benefitting (as a recent doc stated) from some immunomodulation properties from the zith. That would be a reason to stay on, but, are there other meds out there that can do the same or better. IDK. I plan to discuss with Dr T. The thing is, I know the docs treating this now don't have long term enough experience to give me a really credible answer. At this point, I think I will keep them on 2x per week until June- then consider taking the summer off. I welcome more comments

Most of you know my story- two kids with pandas, yada, yada. We are about three years in, and as always I am working on fine tuning our protocol, and am collecting my ideas prior to doc appt. Currently, I am debating whether I should keep my kids on their prophylactic dose of zithromax (twice weekly), or take them off completely. So far, they have not proven to be antibiotic dependent. They also do not seem to get sick frequently, and the antibiotics have not proven to reduce their infections when compared to life prior to pandas. So- I am wondering if any/ many here ONLY do antibiotics for pandas flare-ups or illness, and NOT prophylactically. Thx!

Colleen- Well I will say that there seems to be a virus with a cough and fever, not strep, going around in my town I do always err on the side of caution. My two daughters DID get strep while on multiple antibiotics (one was on full strength zith and amox). As a matter of course, if my kids get sick, we go to the ped for an evaluation and strep culture (not just rapid). I would start there. I would also consider a few days of regular advil dosing. Hope she feels better!

I just want to add the side note that, my vet has been a lot more cautious and careful about vaccination in my dog, than my pediatricians were about vaxing my kids!

Yay Bronxmom!!!

I agree with pow pow and EAmom, and don't think vaccines are a cause for pandas. However, what I do think is they could be the cause of a pandas episode, in an already pandas kid. In which case, if your child has milder and undiagnosed pandas, and they get vaccinated, this could trigger a pandas response. I am not a proponent of NO vaccinations (and my kids are pretty fully vaxed). But I am no longer a believer in following the mainstream schedule. If I were to have a new baby (who would obviously be at high risk for pandas), I would evaluate each vaccination MYSELF, to determine the risk of what we are vaccinating against, and if I considered it necessary, WHEN that risk enters their life, and have the vaccine done then, one at a time, when they are not/have not been sick. I am also no longer a believer in the flu shot, unless there are other medical circumstances. I think the outrage to vaccinations in not really about the vacs themselves, but more about the lack of thoughtfulness about how and when to administer them to each precious child.

Hi everyone. As usual constantly thinking and thinking about ways to improve our pandas treatment protocol. I am wondering, for those that do IVIG with Dr B- I have two questions...... 1. How often do you do the IVIG? 2. Are steroids administered through the IV, and if so, what is the dosage? Thanks!!!

My both, previously 100% healthy kids, with previous "normal" reactions to strep, came down with strep/ pandas about a month after receiving the flu mist (ugh- I know- I was so naive then). I don't necessarily attribute it as a cause, but the thought is always with me. No more vaccines for now. The ONLY one I will consider in the future is for meningitis- but I haven't looked into it at all.

YES! Continue with the antibiotics and consider giving her three days of regular (fever type) dosing of advil. Get the brother swabbed for strep (do you know what he has?). My kids sometimes react to illness exposure. Usually, with advil and time- it is a minor bump- and they get better. Hang in there and don't panic.

colleen- I completely agree. This is ridiculous. I always lose respect for a doctor that will go on tv and speculate about some tv star's "issues" (ahem, Dr Drew). But this goes BEYOND- how can a doctor be allowed to go on national tv, or written news, and discuss his patient's diagnosis? Why is no one interested in this? Why would these parents want to see this doctor? For a non diagnosis, and for him to then discuss this on Tv. The difficult thing is, this is going to be very hard to resolve. If this is pandas- it is very likely nothing will turn up in these tests. We all know it is hard to "prove" pandas through testing. It is possible they have pandas, due to an illness that is past. My girls had positive strep cultures at onset- had we missed that, we would be in a much rougher spot- even with positive cultures neither of my kids make titers. Probably the only way to start to "prove" pandas in that case would be treatment, maybe with steroids and antibiotics- but that will be hard to do under a microscope. I do think if it is pandas, it would be easy for one of us, or Dr T to know (like Dr Drew says his gut tells him it is not conversion)- because there will be other symptoms. If this were to be pandas, not ALL of these kids would have tics only. There would be some of the other symptoms. I think that is probably what Dr T meant when he said he is using the PANS criteria. I have seen some paperwork from that meeting that has categories and lists of common pandas symptoms. (I am not saying it is not possible to have tics only, just saying unlikely that 12 plus pandas kids would all have tics only). If it is neuro- toxicity due to the environmental mess they have up there- well, I don't think there is a test for that either. Anyone with common sense can see cause and effect, but proving it is another story. Erin Brocavitch will have her hands full. I wonder about her being able to link these symptoms with the environment decisively within the time frame of the media's attention span. What a mess. BTW- I had an aquaintance/ friend have her daughter (11 yrs old) diagnosed with conversion this summer. She had headaches, seizures, some tic like movements, anxiety, and school refusal. They did lots of medical testing and came up empty. (Pandas was not properly ruled out). I don't know what they did in the end- meds? therapy? etc? I don't know how she is doing, but she is back to school. I think this diagnosis is probably given very frequently

Thank you for your post and song. I am so sorry for your son's suffering, and yours, we can all relate. I second Pow Pow's advice- get to a pandas doc yesterday!

sosudden- I think the general concensus is that a regular MRI cannot detect basal ganglia information. However, an MRI is probably a good idea just to rule out other causes. I don't know about the Keflex, all kids seem to react differently to different antibiotics. Most on this forum seem to settle on zithromax or Augmentin. Did she have a positive strep test? If Keflex doesn't work, move to one of these antibiotics. My daughter was only "sick" with pandas for about 5 weeks when we put her on zithromax. It took 30 days at full strength dosage for her to get better. The improvement is slow, and somewhat "saw-toothed", try to look at progress week over week- not daily. If progress is being made weekly- stay the course! IMHO it is imperative to treat pandas with a very knowledgeable doc, not a ped. Do you have a specialist working with you? And, YES, you will get her back

Hi Jdude. I have become more conservative the longer I am dealing with pandas. I have two daughters that have pandas induced ocd, with some tantrum (not quite "rage) behavior and depression. I agree with norcalmom that we have found ERP to be a HUGE part of our treatment protocol. We find it is much more difficult when in the middle of an episode, however "baby steps" can always be taken, which at least gives the child a sense of control. Once medical treatment starts working, the ERP is a lot easier, and very helpful in shedding the ocd. We have found having a REALLY knowledgeable, experienced and tough therapist key- and we have had to travel from NJ to FL to find this The therapist also helped us with the mild defiance and tantrum behavior we were seeing. Personally, I find great solace in having someone to bounce ideas of during an episode, even if things do not immediately help the child, it keeps me centered. Our number one lifesaver, though, has been steroids. So, when I saw that steroids have worked for you in the past, it makes me wonder why not try them again. We saw a really rational neuro, who does not treat pandas but helped us out- his thought was to try treatments from most benign to most risky- he felt this would be: antibiotics, steroids, high dose iv steroids, ivig, plasma pheresis. We have followed this since we have seen him, and have had the good fortune of our kids really responding well to the steroids so far. I have also heard of a doc in my area that treats a child with a 5-day steroid burst every month. In our experience, the low level symptoms really begin to affect the child's happiness, and the family as a whole. I also feel it leaves them vulnerable to getting worse very quickly (we have seen this). So these days, if I see that it is more than just a few days bump in symptoms, I start thinking seriously about steroids.