dcmom

smarty- here is a link. Lots of sites imply difficulty in composition, but don't talk about it extensively. It seems to be, if there is lots of difficulty with the mechanism of writing and spelling, that the student then loses track of the composition of what they are writing. http://www.ncld.org/ld-basics/ld-aamp-language/writing/dysgraphia

I am sorry, I did mean 504. My older daughter already has a 504- with almost nothing in it. Thank you for your advice. Where do I find an occupational therapist? Should I contact someone at the school? For the older daughter, truly, her handwriting is fine- it is the spelling, which is probably equivalent to the middle to lower end of the class- but her overall academic level is top of the class. I am wondering if accommodation will truly be needed, just for spelling issues. For the younger, if things do not improve, accommodation will be very necessary. I know I can get her a 504, and her principal/ school is beyond supportive. I can tell you that NEITHER will want accommodations- they are determined, proud and stubborn But if I at least get it in writing, we can decide what to implement. So- Tpotter- what do you think- is there a way to work on this? Do you think cursive would be easier? Is there a way to work on spelling? Or is it really mostly accommodations we should be shooting for? Thanks! smarty- are you talking about linear thinking during written composition? That is definitely talked about with dysgraphia. I will see if I can find some links....

It came to my attention about a year ago, that both of my PANDAS daughters have probable dysgraphia. It is now at the top of my list, and I am ready to start figuring things out. (It has not really been an issue in school yet). My older daughter, now in grade 6, is an excellent student; bright, engaged, straight As. In second and third grade she was one of the top three spellers in her class. Her handwriting was beautiful. In fourth grade, pandas hit hard, and we were scrambling. Fast forward to fifth grade, and her handwriting is VERY average (meaning not great, but teachers don't seem to be as picky these days), and her spelling is poor. I have no doubt PANDAS is the underlying cause. It has not affected her grades, as she can learn to spell for a spelling test, and most written assignments are either done on the computer (spell check) or I spell check for her. Pandas hit my younger daughter at age 5 (she is now in 3rd grade). I do have some writings of hers that are beautiful, but that is not the norm, and actually now that I am researching, I think they are instances of final copies from a rough draft. Her typical handwriting (in school and homework) is not good. B's and D's are usually reversed, letters are large (out of the lines), different sizes, and the spacing is off. Her spelling is TERRIBLE. It is creative, somewhat phonetic, and NEVER consistent. She can also study for a spelling test and get As and Bs- but she never retains the spelling of these words. From my initial research, I would say they both have dyslexic dysgraphia. My initial plan is this: I plan to meet with the older daughter's English teacher, and my 3rd grader's teacher. I will fill them in on pandas, and my concern that they may have dysgraphia (in the older daughter it is definitely mild, she is an awesome writer. The younger one CAN put together sentences and paragraphs, but her writing is NO WHERE near as sophisticated as her verbal ability and expression.). I will give them a few articles I have seen on dysgraphia. I will ask them if, this year, they could just make some classroom level accommodations for this issue, and keep their eye on their handwriting/ spelling vs other kids their age. The basic accommodation I would ask for is not to mark them down for neatness or spelling. In the meantime, I will consider testing (probably for the younger) to get a diagnosis and IEP. The older daughter is aware of her spelling difficulties, and watches for them. Those with older kids- do you think she can manage going forward without accomodation? Are most graded assignments in middle/ highschool done on the computer? I plan to get the younger daughter writing in cursive, as I have read this can be easier for many with dysgraphia. Any info or suggestions would be appreciated!!! Thanks!

Their daughter was in the NIH trial.

momcap- I have NO idea. We are not treating for lyme (tried it, didn't help one way or the other, following a strict but aggressive pandas protocol). BUT- I saw this post, and wondered as I do with many of the posts on meds/herxes. Abnormal mood changes (and it listed irritibility) is considered a side effect by the FDA for Bactrim. I know, how difficult it has been at time to determine WHAT my kids are reacting to; med change, supplement added, illness exposure, loose teeth, stress, and on and on. Many times I link it to something, but is that because I am looking at it through our past experience? through what I want it to be? In our house, pandas is an ever moving target. Sometimes they are 100%, most of the time they are 90-95%, and sometimes we dip down to 50 to 85%. It is SO hard to isolate what exactly meds are doing in this situation. This summer, we removed EVERYTHING (except vitamin D, and light probiotics). We had NO change. They were at 95% before and during this "experiment:. I was happy to see, that the supplements we had tried, and the daily antibiotics we were using actually were not doing anything, and NOT needed. But it did drive home how hard it is to tell WHAT is working..... I don't think there is an easy answer.

Abnormal mood changes are a reported side effect of Bactrim in children.

Tmom- Both of my girls have had a T&A. My older daughter had her surgery for sleep apnea. She had strep throat in 1st grade (2 years before pandas hit our family). After the strep, her tonsils were enlarged and she was gasping for air while sleeping. She had her surgery, and her doctor said her tonsils literally fell apart they were so infected. Recovery and the next two years were uneventful. Her sister contracted pandas due to strep 2 yrs later. Upon my research, and the advice of our two neurologists and ENT we opted for T&A. Prior to her surgery, she was recovered from her first pandas episode. Her tonsils were unremarkable on exam, but on removal the doctor commented that they were large, pitted and infected. Unfortunately, even though she did antibiotics daily for 10 days prior, and after, she had a second pandas episode within a week of surgery. (due to the surgery- in my mind). So, my thoughts on tonsils: I am glad both girls have had the procedure, it is behind us, and I don't have to think about it. But, after having an episode caused by T&A (and hearing this from other parents) I would not, personally advise a T&A unless you have one of two situations: 1. chronic pandas issues, 2. chronic strep. In other words- if it ain't broke, don't fix it. T&A has not stopped my kids from having strep (although only once, and twice since T&A), and it has not stopped them from having pandas episodes. However, we do not have chronic strep, and we are able to get to remission in between pandas exacerbations (although our baseline has slipped a little). Also- Dr Murphy has a recent paper indicating something about a high percentage of kids with pandas already have had T&A, and she doesn't necessarily suggest it. So I would look at that paper (in more detail than I did). If I had a kid with pandas that wouldn't go into remission, or with chronic strep- I would strongly push for T&A. There is some medical evidence that it does reduce the number of strep infections in a child- so of course, that is a major plus for pandas kids. There also is one case study in print about a case of pandas that went into remission due to T&A.

It was never school phobia- I think of it as an intrusive thought. When she was at school she was in a complete panic that she would vomit, and would be embarrassed. It was the combination of vomit, and embarrassment that she needed to be desensitized to. Thank goodness she was honest about it, and the psych in FL clues in on what was needed immediately. We has spent five months trying to get her back to school one class at a time. That was slow, but she was cooperating, however the ENTIRE time she was at school she was panicking inside. We never would have succeeded on that path!

So Nancy- I am surely not supermom- just "finally met a great psych" mom The whole key to my daughter's "recovery" (for now) from the "fear of vomiting- mainly in school- or in public- where she would be embarrased" was exposure. We were doing response prevention (getting her back to school. very. slowly.) Our USF psych realized the actual key would be the "exposures" to desensitize her to the thought. So in other words we had to have her think about it so much, that the thought was boring. She cannot control whether she has the thought, but now if the thought comes up, it is boring, and theoretically disappears quickly. So- she had to say the word "throw up", say the word "throw up" to strangers, look at photos of vomit, look at photos of people vomiting, look at videos of people vomiting, write scenarios of her vomiting in school, make up stories of her vomiting in school and tell them to strangers, make fake vomit- put it on her shirt- take a photo, hang that photo where she could see it, show that photo to strangers, make fake vomit, put on floor, show to strangers that she vomited, go to the school and visualize feeling sick, vomiting, everyone laughing, and finally when school started do this visualization a few times during the day in school. USF was perfect, as the "strangers" were fellow psychs- so a "safe place", yet still uncomfortable. It was hard, yet every step was "not as hard as she thought", so she built confidence along the way.

norcalmom- who did your testing, and what did it entail? I hate to put my daughter through more appts, and long testing- as she has been through so much already- and she gets aggravated But- I know we have to address this (if there is no improvement) prior to middle school. I am hoping this year to be able to just do some minor accommodations with the teacher, and be able to address it formally in the spring/ summer. I am thinking, as long as she does not get too frustrated (which she gets a little frustrated now, but is VERY determined) that we could just ask for no focus or marking for spelling and/or neatness. I do want to give her a chance to improve, because I have a very minor hope this could improve if she stays healthy (pandas wise).

Sww817- I think you will love USF! Which doc are you seeing? We do not seem to have any reading issues. Dysgraphia does not have to go along with dyslexia, but my research seemed to show that it sometimes does (if that makes sense). I have not heard of pandas related dyslexia- but I would NOT be surprised. I read that dysgraphia can be caused by brain injury Which is, I assume, our case. I do not know much about dyslexia...

smarty- if only we lived closer, we could hang out So two things that we are dealing with right now, that struck me about your post. My 11 yr old (school avoider) has been going strong since school started. However in the last week, we have seen an increase in her morning anxiety, complaints and reluctance to go to school. From what I gather, her "fear of vomit" ocd is not back, we do exposures to that. She is having a fear of, feeling that intense fear/panic at school again (like last year). It kinda makes sense. And it sounds like a possiblity for your son- things really sucked for him at school before, in the midst of pandas. He is better now, but every day he is afraid it could revert to how it was before. I am not sure where to go with this yet. I talked to a psych (trying to find one in NJ so we don't have to fly to FL every other month) and explained this to him, and he made it seem like that was a pretty common, likely scenario. I am discussing doing exposures (with her) to the idea of being in school and feeling panicked. Not totally sure this is the right direction, but all Ive got until I contact our FL psych. The other issue, which I was researching this morning is dysgraphia. I feel that both of my daughters have this. My older daughter was around 9 at onset, at the time her handwriting was like a work of art, and she was the top speller in the class. Fast forward to this year, and her handwriting is fine (but I would lump it in with all the others that imho have marginal handwriting), and her spelling is NOT GOOD, and she knows it. Her younger sister was hit with pandas at 5. I have some examples of BEAUTIFUL handwriting, but most is barely legible (due mostly to somewhat erratic sizing and spacing, large heavy handed style) and her spelling is unbelievably bad, and very inconsistent. She can memorize 15 words for the week, and get a 90 on her spelling test (with minor difficulty), but those words are never spelled the same way again, and her mis spellings are creative and inconsistent. She is able to construct a paragraph or sentence. Both girls are very smart (if I do say so), and have outstanding vocabs and verbal expression. Both test advanced in Math and English. I was researching dysgraphia and realizing that it does apply to spelling as well as handwriting, basically all written out put. I was telling my husband today, that I think we will need to get a diagnosis for my younger dd prior to going to middle school if things don't change dramatically. There is NO doubt in my mind this was caused by pandas. It is a neurological issue. I don't know, if it will go away They both seem to have been affected somewhat, at the level where they were when pandas hit- what they were learning then. Younger dd still reversed b and d. So- certainly if your son has an issue like this- it does not help in the ocd/ anxiety dept. If anyone has any info on spelling and dysgraphia please let me know. From what I see- it is ok to practice handwriting and spelling, but in reality there may not be much improvement. It is important for kids to be given accomodation, like using a keyboard, and not be marked for spelling when the exercise is about composition. For my older daughter, it doesn't seem to be an issue- most writing can be done at home on the computer. However, I fully expect her to take honors classes in highschool, and wonder if I should have an IEP in place, accomodating spelling for in class assignments. She also can master spelling for a test- she is learning spanish now- and I will be interested to see how her retention of spelling those words are. This whole freakin thing is such a puzzle, isn't it?

I will say one more thing- I agree with Dedee, I seem to see you say constantly that your children's case is different (from whoever is giving you advice at the time). They are not! All of our kids have different stories, but in many ways the same. Many here can trace pandas to strep, many cannot, many suffered for years before finding pandas, many have not, some become extremely debilitated, some do not. ALL OF OUR STORIES ARE DIFFERENT, yet so much the SAME. Your situation is NO more different, or difficult, than any other. Many of us have gone from doc to doc before finding the right path, many of us have had this cause great difficulty in our marriage, many spouses are not (or not completely) on board, all of us are afraid, we all second guess our choices, you are not so different. The thing here is, you need to accept that this is not black and white, there is not a perfect doc, science has not caught up with this (or these) illness, and like it or not YOU need to call the shots. I am afraid if you don't accept this, you will never move forward. And all the while, while not making a decision, and not moving forward- you are in the end, making a decision. And the decision to do nothing, to think no one understands your case, and to blame doctors is going to be a very hard one to live with in the end. I am thinking possibly a qualified psychologist could help you sort this out. I know it was so helpful for me to see my kid's psych when making difficult decisions, and having to be the kids psych. I think it would help you to find someone who can help you look at the facts, and determine what (if any) of your own personal attributes are making it so hard for you to move forward and make decisions. I mean this with only the best intentions. It is my opinion that parents come to the forum (including me) for help. I, personally, appreciate some tough talk and honest truth- and think in the end- that is the best, kindest, thing you can do for a person. I wish someone sat me down on day 1 (although I realized this somewhat quickly thanks to the forum) and told me that this was a painful, difficult, disorder. That most likely there was no cure. That I would need to change my parenting style. That my husband and I would need to get it together, fast. That I would need to call upon close family and friends for support, and that I would need to completely restructure my priorities. That my kids would suffer, my job was to minimize this suffering by seeking qualified medical and psychological treatment, and become an expert myself in both of these fields. And that, through all of these changes, and suffering- our family (and especially our kids) would turn out to be more compassionate, insightful, sensitive and intelligent due to the struggles they have faced. Good luck- keep posting!

libbykt- I went to USF with both of my girls for intense ocd therapy in August. I can say the docs there are extremely knowledgeable. Dr Storch is amazing, and the doc we saw Dr R- was a gift to our family. He was knowledgeable, smart, and tough (which was the key for us). He got right to the heart of my kids issues (each being totally different) and was relentless in making them work at it. He took the mystery out of ocd for me, and gave me the my power as a parent back. It was one of the most positive things we have ever done for our kids. We were there for three weeks, insurance completely covered it, and we stayed at the Ronald McDonald house (which in itself was a positive life changing experience)- so the whole time was very easy on the budget. PM me if you have any questions... Eileen

Hi Eljomom- I have to agree with Pmom here. I have posted and emailed fairly extensively to you- and I hope I am not being offensive- because I take the time to post because I care, because I don't want families to suffer, and because I know the suffering of pandas too well. I was really bummed when I saw your post this morning. It felt kinda like groundhog day. Everyone here, certainly deserves to feel a little self pity and grief, but it is time for you to get it together. Don't post, and not try to take in the advice given to you. THere are a lot of amazing parents here, taking their time to give you advice- yet I feel like you don't absorb it at all, and week after week you post the same thing. You are blaming docs, the healthcare system, etc for your daughter's failure to progress. While in a perfect world, pandas parents would get WAY better treatment. BUT, it is not a perfect world. Things are how they are right now. We can and should work to improve things- but cannot do that by giving up, and feeling sorry for yourself. This is how it is: PANDAS is "new", there are only a handful of docs with any experience treating it. They are trailblazers. They are human, far from perfect, and each has their own issues. BUT- go to any other doc, and I can tell you, your child will be completely dismissed. They have to rely on their limited experience, and the very limited studies, in order to treat our kids. I understand you are not happy with your pandas doc. I see the same doc. I know their are communication issues. But, being angry is not productive. Some parents will decide to move on to another doc if they run into this issue- maybe try that. What I do, is be sure that I have whatever I need when I leave the appt, until the next appt. I schedule follow ups, and cancel if we don't need them, but try to always have something on the books. I decide to realize what the weakness and strengths of each doc we see is, and make it work for us. Also, you have repeatedly decided not to follow this doc's advice- certainly your perogative- but then why continue down this path? She wanted tonsils removed (extremely reasonable for a pandas kids, case studies support it, and many anecdotal stories of kids on the forum whose tonils end up being very infected, that wasn't seen on exam). Also she recommended a steroid burst, which you also declined. What more can this doc do? You will not be offered pex or ivig with a very mild case, without trying less invasive procedures first. You want her to test with Igenex. This is not a test sanctioned by mainstream docs. If you want this, you need to make an appt with an llmd. There are a few in your area. I agree with Kayanne about her assessment of Dr L treating pandas as an autoimmune disorder. This is how it is described by the NIH. This has been our experience with our two girls. We have needed to use immunomodulation (steroids in one form or another, or pex) to put a stop to the autoimmune process. We don't have underlying illness, and any attempts to look for these have found nothing- and have been wastes of time and energy for us. When we are able to properly address the autoimmunity, my kids go into remission- until the next trigger. You need to look at your child's picture. What do you think in your gut? If you feel this may be chronic infection, like lyme, or something off of the mainstream radar- then make the appt with the llmd. If you feel this is pandas, maybe it was sudden onset, tied to illness, but in all other respects your child is "healthy", then either listen to your pandas doc, or find another. YOU need to choose a course and pursue it. The good news is that neither direction precludes you changing your mind a few months down the line. No direction, pursued for a few months, will cause lasting harm to your child. Not doing anything is going to drive you crazy. You will feel better with a plan. I really wish you nothing but the best. I have been down this journey with both of my daughters, and though they are well now (and we have all been through a lot), I live in a constant state of fear (that I try to push down) of a future The other thing, I will echo Pmom is- perspective. It REALLY helps to get perspective with pandas. Our kids are not terminal, and they will grow up to live productive, healthy lives. Not all parents can say that. The other thing is, you seem to get irritated when a Dr or a parent says your child is happy. I REALLY have to say, do not take that for granted. My kids have certainly not been the most severe- but both have had two weeks in the past two years where they were: not eating, extremely depressed, did not want to live, would not leave the house, cried most of the day. After that, I can tell you our priorities changed. Finding some joy (and in those days it was very hard to do) in every day is our priority now, EVERYTHING else is icing. Good luck!

smarty- I was there with my daughter last year. I could NOT physically make her go to school. She was 10 at the time, and would physically NOT go, and I could NOT physically force her. So- we switched to homeschooling, and going to therapy and working on essentially response prevention (getting her back to school a bit at a time). So sounds like, on the surface- exactly what you are going through. It was SO hard- my daughter is an excellent student and she always loved school. I was so sad for her. We followed our psych's advice (someone who has written many books on kids with anxiety and ocd). In the end, we were going about it all the wrong way If this happened again- the first thing I would do is get on a plane to FL for intense therapy at USF. We did it this summer, and I wish we hadn't waited so long. We would/will be back again, if we find ourselves in a rough spot like that again. So- here is what I think the psych would tell you- you need to get to the bottom of what is bothering him. You cannot move forward without this. Compliance is necessary. But you can balance it with what you think he can do (but be brutally honest). Can he function at a playground, at the movies, at a playdate? Where is he on this other stuff? Is it just school? So- you have a talk with him, lay it out. Tell him these are age appropriate expectations: he will go to school, be respectful, work on his ocd/anxiety, be compliant at home, do age appropritate chores etc. You will hold him to these behaviors, support him, and reward him. You will work together, but the big work is on him. So- you can say, I know this is hard, so we won't expect everything right away. But- if you are not at school, we will spend that entire time working on getting to school. This would mean doing exposures, practicing, etc. If he will not comply there are consequences. My psych told us: parents need to give their kids shelter, safety and food. EVERYTHING else is negotiable- meaning if you have a non compliant child, you can take everything else away. We did not have to go there. We were able to regain compliance with the time out method- which I will detail later. (this is assuming that you don't get complete compliance with everything else at home). So, totally- I get, and I think a psych would get- that you cannot force him to school. BUT- you can set up expectations that he will work his hardest (and do give him a safe place to go to, or a safe way to deal with the anxiety at school), and if not, everything is on the table (TV, Video games, playdates, all of his toys, etc.) He does not have to get back to school full day, immediately- but he does need to work with you on getting there. I would think a really tough and qualified psych would be hugely helpful. Do you have any gut feelings as to why he is not attending? If it is sensory stuff- then he would have problems other places- right? Does he have a learning disability that is not being addressed properly? Do you have issues with defiance at home? Does he do age appropriate things like, cleaning his room, putting away his toys, helping around the house, etc? Believe me- I know how much this stinks, and how much it takes out of you. My 11 year old missed almost 5 mos of school last year. It drained me, and it drained her. I never want to go through that again.....

To be honest, I cannot imagine living in Florida, and NOT going to Dr Murphy. I have not seen her (live in NJ), but can tell you that most on this forum travel a LOT farther than 1 hour, to see docs who don't take any insurance, to treat pandas. This is a crappy reality. Unfortunately, living 1 hr from Dr Murphy- puts you in the "lucky" category on this forum. We were "lucky" too, we lived in DC when pandas hit, and were 15 minutes from Dr L. We saw her, paid out of pocket. Now we travel from NJ to DC (four hours), pay out of pocket, and still feel lucky. We wasted lots of time and money on docs who didn't treat pandas (not to mention the emotional expense). I hate to be blunt, but after being around here for a while, and having two daughters with pandas- this is a "no brainer"- get the first appt available with Dr Murphy. We actually travelled to St Petersburg this summer for OCD therapy at USF for our two daughters. If your child has ocd- get an appointment with Dr Storch also. Maybe you can ask if they can work something out with you re cost, if it is a hardship for you....

LLM- totally agreed. I am still working on moving away from being the fix-it parent, it is really helping, it is not easy (does not come naturally for me). We found they DO have to become responsible, not only responsible to fight the ocd, be compliant to parents, but to do the work necessary. Really, bossing back the ocd is one thing, but what helped us was to really de sensitize them to the thought. So, in other words if the thought is something is going to happen to a parent- it is not enough to say- nothing is going to happen, and I am not going to listen to this thought- but the child has to do so much exposure to the thought of something happening to a parent, that when this thought comes up- it is boring, they are desensitized, they are not trying to not think about it or not listen to it. I am nowhere near as eloquent as our psych- but I hope this is making sense. It is SO hard to see your baby, so scared, so emotional. It is my nature to rush in and make it better. But- being tougher on the ocd (while always maintaining compassion) has actually been the "kindest" thing we have done- because it has gotten them better, fast. My older daughter's ocd comes out as defiance. Her only compulsion is avoidance, or to be with me. She is almost never defiant outside of ocd. It took us quite a while to figure this out, even though her sister was diagnosed with pandas already. Now, it is clear- as soon as I see that defiance- I KNOW there is something below. She has also gotten very good at sharing. I do think there can be other causes of school anxiety (of course). I think that undiagnosed, or unadressed learning issues can be a major player- and wonder if there is any of that possibly?

smarty- I am going to play devil's advocate here a little bit- I KNOW you KNOW your son, and know what you are doing- but so much of what is going on with him mirrors what we went through with my kids last year, so I only am saying this from someone who TOTALLY understands that you are pulling your hair out, and living every moment to get your son back to school and happy- but- my daughter had major school refusal, anxiety and ocd. We tried and tried to get her back with baby steps, but we were not facing the underlying fear- so we got nowhere. This summer we went to USF (which BTW could be great for your son) and she faced the underlying fear- and we were able to get back to school without baby steps, without issue. my other daughter also was having ocd, but frankly, a lot of defiance. We also dealt with this at USF. You know, after pandas ravaging our household for 2 plus years, me knowing it was caused by a medical/physical condition, us, as parents tired of seeing our babies suffer, had lowered the bar dramatically and let lots of things go. We learned that just because a child has anxiety (and ocd) does not except them from compliance, period. The anxiety and ocd needs to be adressed- but really before that can even be addressed, we needed to address the compliance. We had lowered the bar on a lot of simple age appropriate expectations, and we had to clearly state that the bar was being raised, and they would have age appropriate expectations. I can tell you that it was a rough go for a few weeks- but we are living in relative peace and normalcy now. So I guess I say this because, if your son is dealing with anxiety (and/or ocd), it is still not okay for him to be defiant. I think you can be honest and tell him this, and give him acceptable ways to deal with the anxiety- but there should be consequences. We are using a very basic "time out" program (think back to when your child was 2). I recommend finding a very tough psych, who sees through excuses, etc. We spent several years with different psychs- who couldn't hold a candle to the one we saw in FL- because he was knowledgeable and tough. Good luck!

eclairuse Hi- I don't have a lot of time- so I will be blunt (as I would want this spelled out to me)... I have two daughters with pandas, who both had an overnight onset of ocd. We were lucky, and had positive cultures- but, the onset of ocd can happen up to 6 to 8 weeks after infection (this is according to Dr Swedo and the NIH), and therefore a parent and physician can miss the link. Most parents on this forum have found it necessary to travel (some great distances) to see a doc well versed in pandas. For us, this means traveling to Wash, DC from where we live now (NJ). Many travel to Chicago and Connecticut. Hopefully the parents closer to Michigan will offer you some advice on closer locations. In many cases, like mine, kids with pandas/ sudden onset of ocd will need an aggressive combination of medical intervention (antibiotics, steroids, IVIG and/or pex) and therapy. I would be sure to contact IOCDF (international ocd foundation) to get a psychologist skilled in ERP (exposure and response prevention therapy), as most are not, and this is the only therapy proven to work with ocd. Also, please do your homework on pandas kids and psych meds, before trying psych meds (as you will find it easier to get them than antibiotics>) You have a lot of work/ homework to do- but the good news is, your child will get better quickly. (the quicker you get to qualified specialists, the quicker you will see improvement).

Burnell- So sorry your daughter is suffering. Do you know what may have caused the relapse? Results seem somewhat individual. Some parents find help in routine IVIG infusions. We have not done IVIG at this point, so I cannot comment, although we did PEX which resulted in a remission of about a year, and then a subsequent relapse. My suggestion would be to try to treat the pandas mechanism aggressively, and then if needed supplement with psych meds. My reason for saying this, is that we have found in our kids, pandas can cause much more than ocd. It can cause physical, emotional and cognitive symptoms. A psych med most likely won't address all of these. Since you were in the study, I would think you are fairly confident in your diagnosis. I can tell you, one treatment that has been really helpful to us in the last year is IV solumedrol (steroids), for two days, at a fairly high dose. It is cheaper and more readily available than IVIG. It seems to turn off the autoimmune mechanism. I think the word "cure" is misleading. IMHO, IVIG, pex and other treatments can put the child into remission, but not necessarily be a cure. Therefore, if there is a new trigger, there is a pandas relapse. We have found it really important to have a game plan for these potential relapses (which is not always easy). We did try zoloft when we had residual OCD post steroids. It didn't help, although our dose was very low. ERP was significant in getting rid of the residual ocd. I know you have done that- have you contacted USF? My thoughts are with you....

I am sorry for what you are going through. You are not alone. When my kids go into exacerbation, it is very sad. But- you will get your son back. Do you see a pandas doc? What has helped his episodes in the past? I will tell you, I have two girls with pandas. They were diagnosed 2.5 years ago, and have had several episodes each. It stinks. But, I have to say, we have focused on maintaining their quality of life (with some minor modifications) and they do well. They both go to public school. I don't go bananas with hand sanitizer and hand washing (well, they present with ocd, so that would be a mistake on so many levels). They participate in extra curriculars, do all of their homework, excel in school and have tons of friends. For them: we do CBT/ ERP therapy we encourage social life- but we do not over book early bedtimes and healthy lifestyle we work on having them accept they have an illness, and have to take care of it, like MANY other kids For me: I work on accepting that my kids have an illness, that I have to make some modifications (mostly to avoid having them get run down/ and to avoid accomodating ocd) try to enjoy life with them every day work on having a game plan in place for future episodes You are in a tough spot now, but your son will get better, and he will blossom....

My opinion would be no. I don't think an antibiotic would cause the worsening of symptoms. What you may be seeing is an increase in the autoimmune mechanism, regardless of the antibiotic. I assume you had her swabbed for strep? My kids both had one exacerbation with no know cause. Our doc chalked it up to some type of stealth infection (asymptomatic strep or virus). They both had this exacerbation at the same time ?!?! which kind of does point to infection. My kids also are no longer helped by antibiotics. We do prophylactic abx for strep, and if we see symptoms we do plan to increase dosage for a week, but in all of their episodes, we have had to move to immunomodulating treatments to stop the pandas episode. We have had great success with steorids, IV steroids, and pex. I would consider a reasonable investigation for an illness ( thorough exam, blood test for strep titers and/or myco p), a course of strong antibiotic treatment, and possibly a steroid burst (have you done this before?). Hang in there!

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