dcmom

My little one has recovered from strep (it appears) with clindamycin. She, so far, has had no pandas symptoms. She was on daily treatment dose azith and augmentin when she contracted the strep. Now, her older sister (pandas, too) has strep. She was on zith and rifampin while she contracted it. Now she is on clinda. She had a mild bump in 0cd/anxiety and was very fatigued Monday, and this morning, that is why I took her for the tests. Hoping, hoping, that she doesn't have a major symptom explosion. Thankfully, we see our neurologist in 2 weeks. So- this makes me wonder why bother with the antibiotics. It has not prevented them from getting strep, or from getting pandas symptoms due to other illnesses (h1N1, colds, etc). Would we be better off just being neurotically vigilant, and pouncing on any possible illness with antibiotics, and on any pandas flares with immediate steroids? OR- is the reason they are (so far- fingers crossed- please don't be jinxing myself) not reacting pandas wise to the strep BECAUSE they are on so many antibiotics. BTW- we have stopped EVERYTHING in younger daughter while she is on clinda- and she is no worse for wear (if anything she is better). The universe is really screwing with me- I cannot get a grasp on this, and every time I think I am getting close, something like this happens to remind me- I know nothing, and the docs know less. Sigh. Eileen

Thanks for the replies, everyone! Just to answer some questions: She is not a carrier, she hasn't had strep since onset (2 yrs), she has been very healthy this year, she has no tonsils. Strep strain that caused pandas came with very little symptoms. This time, full blown pharyngitis symptoms, fever, malaise, etc. I do plan to re-swab, and would probably do so 7 days after course of clinda runs out (of course she will then go back on zith and augmentin). My issue is- I am expecting a severe nose dive as far as pandas symptoms go, prior to 2 weeks from now. When she had H1N1, she started in a severe episode of pandas upon recovery, we started prednisone within three days, and she fully recovered within a couple of days. My fear now, however, is how to be sure the strep is gone. Sigh. Maybe I could get doc to Rx IV antibiotics AND IV steroids..... Pmom- thanks for the heads up. You know I am on the fence about lyme, and starting treatment has made me even more of a doubter that lyme is an issue for us. I just want to follow through for another month or so. Good idea on the CBC. I do not feel good about all of these meds, especially when something like this comes up.

Pandas16 I am so sorry you have had a relapse. It is clear from your posts, that you are a smart, confident, young lady with real insight into this illness. I can only hope that my girls are as educated about their health as you are, when they grow up. The good news is, you had 14 years remission- so you know you can have that again- now just to figure out how to get there. First- give yourself a break, take care of yourself, try to eat right, exercise, and veg out in front of the tv-if all this is possible. Lean on your family and friends right now. Second- as an adult, I would hope you are in a better position to demand treatment for yourself. You have said that IV solumedrol is the treatment that helped you the most (my girls had it this January- and it was really helpful). A cooperative doc should be able to Rx this as either same day, or in home. This could be a start, to calm down the immune process. My mantra during this journey has been to simply do what works (not to overthink)- so if the steroids have worked, try it again. Hang in there- and please use this board to lean on. You have offered SO much insight- I know we all will be here for you all of the way.

I have a little situation here, and wanted to know if anyone has seen any papers on this, have any thoughts, or have a suggestion of who to consult with if we need. Both of my daughters have pandas. My younger daughter Julia woke up Thursday with a 102.5 fever, sore throat, cough and general malaise. I took her to the doc, and her rapid was positive for strep. She has been on both zithromax and augmentin, daily, at treatment level doses, with 100% compliance. She is on the multiple abx because she was bitten by a lyme infected tick in November (yes- the universe is trying to kill me). She never got a bullseye, rash or any symptoms from the tick bite, but we have been treating her to be on the safe side (and to preserve what is left of my sanity). She did have a pandas episode in December (no known cause- tick bite- maybe - who knows). I do not believe chronic lyme is an issue with her. So, the ped prescribed clindamycin (75 mg, 3x per day, 48lbs) for 10 days. My concerns (well the few I could narrow it down to): Will the clinda clear the strep? If/ when she has a pandas reaction (for H1N1, for her, it was immediately upon recovery from illness), and we need to use steroids, how can I be reasonably sure that the strep is cleared? She started the clinda Thursday night. I will have to give it until Monday- but if she is not almost 100% in terms of illness symptoms, I think I need to figure out if the clinda is enough- it must be a pretty virulent, resistant strain... who could I or my doctor consult about clearing the strep? (my peds are pretty open and reasonable). Oh, and the last thing- if she can get strep on multiple antibiotics- why bother with the daily abx for preventative. I know the immune modulation, yada, yada- but if I wean her off abx and she had no symptom increase- am I better at just rolling the dice with strep, rather than a lifetime of daily antibiotics? I guess her pandas reaction, and how severe to this strep episode will give me a clue if the daily antibiotics are helpful. Does anyone know if clinda is immune modulating- because I have her off of all other abx right now. Thanks for any thoughts you have, even just a direction to look, or another way to think about things. Eileen

I agree with arial. My younger daughter has major clothing sensitivities/ocd. What I have seen, is that when the ocd comes on full force, almost overnight- it is truly a panic. At that point, we only try to function at a very basic lever; eat, sleep, stay calm, find some joy in the day. With treatment, things do start to improve. As our kids improve, we slowly raise the bar. The clothing issues take time for us, but my daughter can get over most of them. When she is comfortable in her own skin, and generally happy in life again, we start talking about the clothing issues. We do the workbook "What to do when your brain gets stuck". She first did that at 5, and it is amazing how she internalized the info. She can clearly identify ocd, and make her own plans on how to work on it. We did see a great therapist for a while who helped, also. I think it is a very careful balance as to what to push them to do, if you push too hard, it increases the panic and backfires. When you get her well, you will see progress in the clothing department.

So sorry you are going through this, I completely understand the stress. Aside from taking the typical precautions, no water fountains, no sharing food/drinks, etc, you have to know you really cannot prevent your child from illness exposure. Since I have a daughter with ocd contamiation/ germ issues (when in an episode) I am very careful to let them just be kids. The best protection you have are the antibiotics. That being said, since your daughter is so soon after ivig and still healing- I would not hesitate to pull her out if there is a lot of illness. Last year, my first graders class could not get rid of strep, they passed it to every student except her and one other, and some had it twice. She definitely reacted to the exposure, and after having the fourth child diagnosed in two weeks, I pulled her out of class for a full week. She was not happy, but thankfully the teacher understood. She had plasmapheresis, and I didn't want to mess it up.

Dr Andrea Gaito in Basking Ridge, NJ is an ILADs doc. I have no personal experience with her. This is the next town to Bernardsville.

My older daughter, age 10, did fine. The MRI was about 20 minutes and is a little intimidating looking, so if you could prep her that would be helpful- she had the choice to be sedated or not. My younger one, age 7, took one look at the machine and chose sedation. There is NO way, especially during pandas episode, that she could go into that machine, with me out of the room, absolutely no way. The sedation was completely fine.

Kara- I am not sure what a provoked chelation challenge is... but I might put it off. I have two pandas daughters diagnosed two years ago. It is VERY common for families to have more than one child with pandas. I do not have much time right now, but I will give you my advice- take what you want... I think it is imperative that you go to a pandas doc. There are a handful in the country, if you let us know where you are we can suggest. That being said, they all have different protocols, so you need take charge. You should read all of the studies and links at the top of the forum. One of the best is the most recent "A way forward" by Leckman, Murphy and others. Definitely work with a doctor to rule out any current infections: strep, mycoplasma, sinus, lyme, etc. That being said, pandas is thought to be an autoimmune disorder, so there doesn't need to be infection once it is triggered for symptoms to continue. In my experience, pandas kids are very sensitive, especially when symptomatic (even at a low level), that is why I have a concern about the chelation challenge. My suggestion (of course I am not a doc, and no replacement for a good pandas doc), would be to do a month of daily treatment dose antibiotic (augmentin or zithromax), while you are waiting on test results. As long as the tests look reasonably normal, if you don't see enough improvement with antibiotics, I would add a one month steroid taper (while continuing on antibiotics). Many times, healing comes slowly, and a bit sawtooth or bumpy- so it is important to look at weekly trends, rather than days. All of the symptoms you described can be from pandas. It is great that you have your son in therapy, however, in my experience, medical intervention can make the therapy MUCH easier.

Interesting Peg- A doc we saw wanted to do the hair testing on my girls. They are a little fragile from pandas/ procedures/ meds and when they heard some hair had to be cut off- they both burst into tears. I really don't think I can do this to them at this point. I have also heard hair testing is unreliable, and the labs that do it have dwindled considerably. Saw some research that backed this up. Thoughts?

HI Alex- SO good to hear from you! I am so sorry your son has continued to have a tough time. This is a really frustrating disorder! I am so glad you are seeing some positive things!!! Please stay in touch, when it works for you! Loosing baby teeth brings up issues for both of my girls. My older daughter had pex in March 2010, she had about 95% remission until October, when she lost four baby teeth in two weeks. At that point we saw an uptick in symptoms, mainly oppositional type behavior at home (very out of her normal character). These symptoms persisted until she had a virus in mid December, and then things went haywire. She woke up one morning with full blown ocd. Ugh. My little one just lost a baby tooth, and we had at least a week of worsening, but now that its out, things are improving quickly. Unfortunately, she counted, and we think she may have 8plus more to lose. For us I have noticed that the more severe episodes are brought on by a 1-2 punch; loss of teeth and then virus prior to recovery. I am nervous now because the older one is healing from last episode, and has a cold.

I will second what LLM has said about Swedo's opinion, I heard that directly from Swedo to me this past Fall (when I was thinking about IVIG). Doesn't make it fact- but is info that certainly should be out there.

Both of my kids had 48hr video eeg's during pandas flare, both normal.

Pmom- We have not done abilify- so I cannot comment there. We were in a (not quite as bad) situation recently, where we started two different therapies at once. I understand the concern, and normally, I would not do this- but when in crisis, I don't always play by my own rules. The best problem your friend could have is not being sure whether the ivig or abilify caused a miraculous turnaround. How long does it take abilify to work- maybe she could start, and then in 2 weeks do IVIG? With that being said, would she consider iv steroids? They were really helpful for us, got us out of crisis fast. In agreement with Nancy's concerns, I would always be sure to start any psych med at the lowest possible dose, due to the fact that pandas kids don't always react in the typical way

Amber- Unless your friends are MD's or have children with pandas, I can't imagine how their thoughts could be relevant. Certainly, no one who has not been on the front lines of the fight against pandas, can have ANY idea how torturous this is to a child. I am sure you and your husband, along with your doc, have tried all other options, have agonized, and have come to a decision. I think I would have to distance yourself from these friends for a while, unfortunately. Of course, there is risk to everything antibiotics, steroids, IVIG, PEX, vaccines, and even advil for goodness sakes... the key is to balance the risk of treatment vs no treatment. Personally, I think the risk of not treating pandas is super high- but I have seen pandas take SO much away from my kids....

Hi eljomom- I saw you had this posted on both the pandas and lyme forum. I am answering you on the pandas forum, because that is where I think my kids fit, and where I know a little bit. I completely understand your position. What I am going to tell you is my opinion only, from my experience with pandas, and now a little with an llmd. I have, sadly, become very jaded and cynical regarding what doctors/scientists actually know, and feel very uncomfortable with docs that have the answer to everything. I agree with what LLM said- I wouldn't waste your money on more testing. It is VERY hard to get a "beyond a shadow of a doubt test" on lyme. There is too much controversey, too little real mainstream science, and too many opinions out there. But this is how I am looking at it: My kids both have pandas, both got it basically overnight at time of strep infection, neither had any clinically significant symptoms prior to initial onset. Both have responded well to pandas treatment, HOWEVER they have at times needed more than antibiotics (have had steroids and pex) to turn off the (presumably) autoimmune mechanism. They also have a relapsing and remitting course of illness, which is how autoimmune disorders work. SO- the absence of improvement on antibiotics only, or antibiotics and oral steroids, and the fact that a child relapses DOES NOT necessarily mean there is something more at play than good 'ol pandas. (this is the current science, and what I have seen in my kids, who knows what the truth is, and what will be figured out in the next couple of decades). I have the same fear of lyme, due to all of the talk on this board. I had my kids tested via Igenex. They both were IGG negative and IGM positive. To my mainstream doc- this was meaningless ( thinking IGM can be cross reactive, which by the way Dr Cunningam apparently agrees with), to my very out of the box ID doc recommended by Brian Fallon, this meant they had recent exposure, and to my llmd, it means chronic lyme. I don't think running any more tests will bring these three together, nor make me totally confident one way or another. So- we decided to give lyme Tx a try, for a little while. My kids are right now healing from their second major pandas exacerbation. We started lyme treatment about a month ago. I thought it would be easier- I thought we might see improvement, or a herx- we have seen nothing. I didn't realize I would be so stressed about all this medication. You think long term abx for pandas is bad, what about 2-3 abx at a time, into a teeny tiny 7 yr old (who by the way hates medicine, doesn't understand why she has to take it, and mommy is not too good at explaining, because I don't know what the truth is). In the end, we will continue lyme treatment for a while. But- I really don't think it is the answer for our family. I don't think it was the cause of pandas, if anything, maybe lyme was responsible for the recent episode in one daughter. So I guess what I am saying is- there will be no easy answers. If you feel lyme could be at play- try treatment. Since we started our journey, I have felt we needed to just follow the treatment that works. That will be your answer.....

Hi Smarty- Is this your pandas son? Or are you treating both for pandas now? When you say 2.5 months, does that mean you have been treating for TBI that long, or that is when you started seeing improvement. This is a really hard question. It is so hard to KNOW cause and effect- coincidence is not cause. We have had this type of situation several times. What I can say, is try to stay calm and analytical (HA!). Okay, he is a bit worse, but possibly coming off the meds can cause a slight temporary uptick in issues (we have had that with steroids), that will resolve. There could also be something else behind this uptick (loose tooth, illness exposure. I would wait another few days, as long as symptoms aren't continuing to pile on. So in other words, he is having increased attention and cooperation issues. Well, if tomorrow is much worse, I would go back on the meds- if tomorrow is the same, better, or only slightly worse, I would hold off and see what the trend will be. It is all so easier said than done

S&S- I would agree with trying the tenex a little bit longer. I am not familiar with tenex, but I have a few thoughts: first, many meds do have side effects, but sometimes after a little time the body adjusts, and the side effects lessen. I would probably start by consulting the pharmacist, and then maybe the doc about the sleepyness, and some ideas to minimize this. Second- it sounds like your daughter has been having a really rough time from your posts. I think (esp easy when they are young) there is a time when there mental health, confidence and self esteem need to be put way ahead of school. I am assuming that the tenex is a band aid, for riding out this tough post IVIG period. I think this rough period can last for around six weeks. I would really consider remaining on the tenex if it keeps her calm and happier, and if needed adjust the demands on her. This could be done just for six weeks, at which point you can re evaluate. At that point- maybe you will be able to wean her off, and if not, you will probably be continuing to address the underlying cause. We have never done IVIG, but I often wonder why docs don't consider a steroid taper post IVIG, if so many kids have such a hard time. It is really not acceptable for treatment to make them worse, initially. This is such a cruel disorder! I don't know if steroids are contra indicated with IVIG, or if you have had success with them, but it might be another route to consider if the tenex is unbearable. Good luck. Truly, it doesn't feel like it at the time, but most of us on the board have been where you are. It sucks, and it is very hard to see a way out when you are in the thick of it. BUT most kids do see some improvement from IVIG, you will get her better, and believe it or not, she will forget 90% of the pandas stuff when she is better.

Tamistwing- So sorry you are having a hard time. I have to admit, our schools have been extremely supportive, so I don't have first hand experience with difficult administrators, but this is what I do: First, both of my girls see a neurologist (for pandas) and a psychologists (to help deal with pandas symptoms). So, I urge you to consider some therapy with a psychologist. For us, it didn't need to be long term, but it was very helpful in coming up with strategies for myself and the school (if needed). I march into school prior to the start of the year with a simple letter of diagnosis from the neurologist, and a more detailed letter of symptoms/accomodations from the psychologist. I act confident, knowledgeable, in control, and matter of fact- this is my kid's illness- this is what is going to happen- in a nice way. My kids both have gone through 2 years without a 504, although I do plan on getting one in place by next year for both- it is just a good idea. Most accomodations we have needed are absences, lates, checking in on them throughout the day, and some other minor things. This can usually be handled with open communication with the teacher, and letters to the office. I have been blessed with wonderful teachers. I do think a letter from a psych would quiet any questions down- I can't imagine the school questioning requests in writing from a medical prof. Stay firm, give the principal Saving Sammy to read

tonight. 3/16 Edison Intermediate school 800 Rahway Ave Westfield, NJ 7-10 pm

He is speaking on Pandas in Westfield, NJ tonight..... PM me if you are going ( I am planning to)..... Or if you need info.... Eileen

Dr T does have something like this he is working on, drawn from the meeting at the NIH. It would be great if it could be made public, or at least be used to educate docs...

chodnett- great news! Would you mind sharing your story a bit? How long were you treating pandas? What were your child's symptoms? Did you ever get full remission, although not permanent, from symptoms? How long and how have you been treating lyme? Thanks!! Eileen

Tmom- I can see where possibly HD IVIG could cause a child to worsen, due to a herx, from lyme- due to what some have stated on this board, not necessarily due to any concrete medical info I have seen. I cannot see any scientific reason why PEX could be harmful to someone with lyme. What you are doing with PEX, is removing the majority of the circulating antibodies. You are not, in fact, changing or disabling the immune memory. The HemOnc docs we saw at Gtown felt the kids were not immunocompromised after pex, that if the body encountered infection, the B cells were still standing ready to create more antibodies. The worst case scenario I can see, is if you have chronic or current lyme, and have pex, that autoantibodies will continue to be created, quickly negating the positive effects of the pex. I am thinking of you!!

Both of my girls have increases in symptoms with the loss if a baby tooth! So frustrating!