dcmom

Ditto everything that mom with ocd son has said! I also wonder if with time, the farther away your child is from a major episode, the less "hyper" the immune system is. Exposure was a MAJOR problem for us during the first year of pandas (for both girls) but has been less so in the last two years, older one is in middle school- but younger one is only in fourth. I am hoping, anyway We have been enjoying the summer so much! I am not looking forward to school starting either- MY worry thermometer goes through the roof

My dd (now 9- 5 at the time) presented exactly as you describe. Underwear always "wet", tantrums, MAJOR clothing issues, MAJOR food issues (hungry but nothing tasted good/ was appealing), MAJOR fears, not wanting to sleep alone (putting it mildly) and baby talking. This all snowballed over a couple of weeks, and we were lucky enough to have a throat culture (quick test was negative) because we got clued in to pandas, and it was positive. (however, many people are not "lucky" enough to swab so soon, therefore theoretically missing the strep infection- which may resolve on its own). There are NO blood tests at this point that can confirm or deny pandas. Your doctor may have done strep titer tests, which are (basically) useless if they are negative, as something like 30% of the normal population does not mount titers to strep. My daughters BOTH had culture positive strep, and never a raise in titers. The only real "proof" of pandas may lie in a positive response to treatment. We see Dr Latimer- she is wonderful! Since you are close- I would call to get put on her cancellation list, and I would probably call every Mon or Tues to check in to see if there has been a cancellation. They are wonderful, but it is necessary to be kindly persistent! In the meantime- keep her on the zithromax! It took my daughter (initially) about 30 to 45 days of full strength antibiotics- but at the end of that course she was 100%. Dr Latimer will be a wonderful doctor and guide for you and your family. We kept my daughter (actually both- in the end they were both diagnosed with pandas- sibling rate is high) on full strength antibiotics for almost two years. We have since taken them off antibiotics and only use them in times of pandas flare ups. Both of my girls had plasma pheresis (miracles for us) and we use steroids several times per year. Therapy (specifically ERP- exposure and response prevention has been a lifesaver and a key part in recovery). We love the therapists at USF, however I did have one that I liked enough when I lived in NW DC, so if you are anywhere near Chevy Chase- I will pm you a recommendation. Also, although my ped in Bethesda completely missed the boat on pandas, they are more open to it now, and maybe would give you a month of antibiotics to hold you over until your appt with Latimer. Again pm me if you are in that part of md (they are NOT worth traveling for). The first year was (for us) the hardest. It is VERY difficult to "lose" your child, and watch them suffer so. However, the wonderful thing is that they get better. And, although I would not wish pandas on my worst enemy- hopefully there is a silver lining that they end up stronger, more self aware, and more compassionate. Both of my girls are living ocd free for about 90% of the time now, and they are blossoming academically and socially. Peace has been restored in my house! Things will get better. Oh and in the meantime- the book "What to do when your brain gets stuck, a child's guide to overcoming ocd" is a GREAT workbook for your daughter and you to learn about ocd (and how to work on it). Good luck!

Thanks LLM- I will have to reread this a few times. As you might know, I have two pandas kids- one has one copy of this mutation (hetero) and the other does not. My question is how you think this relates to pandas- which is where I get stuck. Our pandas symptoms generally recede completely when well, and return with illness. If the body was not detoxing, it would make me think there would always be symptoms present. Or is it that the body needs to detox when sick? Does homocysteine level play into this for you? In other words, from my quick reading it seems homocysteine could be normal (it is in my dd) but there could still be an issue down the line.... is this how you see it? (I know the homocysteine levels are used a lot in the evaluation of heart disease/ stroke risk). Thanks!!! (I have been considering trying to supplement with methylfolate- but I am stubbornly resistant to supplements....)

So true! Been working on this lately

agree with Dedee- If you are questioning strep- have a throat culture (not quick strep) done. We used to do them frequently, now that we kinda have a handle on things, we do them a little less often. For my kids, they can be triggered by viral issues, or even by loose teeth- a combo of the two might be equivalent to a strep infection for us. Sounds like you are treating for lyme? We tried that for a short time and dropped it, as it did not make any change for us, it just didn't make sense. My kids did get strep while on both zithro and amoxy so it is possible. If it is strep, I would consider dropping your current antibiotics (temporarily) and adding a course of clindamycin. Of course, at the first sign of a flare up we give 5 days of advil (three times per day) and then 2 to 3 days of one time per day. If at the end of that seven day period we do not get major relief, we usually move onto steorids. Good luck!

I can kinda agree and disagree with LLM and Pow Pow. Both of my girls had pex. UHC pre approved it for my first child, then denied it post procedure. Eventually covered it. (BTW Georgetown was in network for us, so PEX cost them about $5k) Then they denied a pre approval for it for my second child, we paid in cash ($26K)- thanks to my dad- to get her in quickly, and they eventually approved that as well, hospital reimbursed us. Having to deal with the insurance company and financial issues ON TOP of having a child in crisis made me VERY ANGRY (I don't usually get angry). It was very upsetting and made me feel helpless. It was probably one of the lowest times of our pandas journey. PEX for my kids was a miracle. However both had overnight onset and were fairly debilitated, and got to pex relatively quickly. For both, the recovery was close to immediate (one was 100% prior to leaving hospital, the other was 95% within a couple of weeks). For us it was TOTALLY worth it, to end their suffering in a FAST way. However, it certainly was not a cure. It did bring them both to (or VERY close to) their baseline, which I think was a huge help in keeping them well, and letting us see what we were shooting for. They both have had episodes since, however we have been very aggressive, and they have not needed pex again. I don't know your child's story. I certainly don't think pex is the only answer- many have luck with IVIG, and we (along with some others) have also had luck with IV solumedrol (steroids). I know someone who has had luck with a monthly 5 day steroid burst. Our doctors need to get creative! I would certainly advise prior to pex, that you take care of any infections (although we have not had a chronic infection issue- I know others have), take care of all dental work, and have an aggressive plan in place to treat flare ups within 24 hours post procedure. After pex, I would advise NO vaccines, and trying to keep life as healthy as possible (eating well, sleeping, minimal stress). Hammer the insurance company. It was on our final appeal that they approved (which was third or fourth?). I feel for you- everything about this sucks!

formedbrds- sorry- just saw your post. We now catch the flare ups immediately (each child has about 3 or 4 per year). We try advil plus antibiotics first, but if that doesn't work, we use steroids. Usually now a week or two will do it.

smarty- two pandas kids as you know- very similar course of illness- one has low vit D, one does not. Hhhmmm. Makes me think there is no connection. One with low Vit D is definitely the kid I would term as healthier (physique, diet, muscle tone, appearance, etc). I do supplement her- make no difference that we experience.

I think it would make sense to consider a steroid burst prior to trying IVIG.....

I agree with JAG. I have seen no "permanent" effects from pandas- only learned behaviors that need to be "unlearned". I have seen cognitive (and academic) issues that were temporary, during pandas struggles, but which recede COMPLETELY with treatment (and time). Left untreated, I think it may be hard to decipher whether there is any physical "damage" or if there is damage only due to the length of time and how ingrained behaviors are, and from missed development during illness.

mini- I concur with pow pow (second time tonight!) I have two pandas kids- typical course- triggered by strep (initially)- respond well to treatment. Both had some questionable bands on Igenex. We have seen a list of docs, three of which treat chronic lyme. Of course the opinions vary. We have put it to the side as of now. I guess my suggestion would be, all of this (pandas and lyme) is really a clinical diagnosis. Tests can aid in the research, but in the end it is the symptoms we have to follow. So for my kids, their overwhelming symptom is ocd, and lots of other stuff that is actually ocd driven (stomach aches, urinary issues, etc.) I would say we have also seen fatigue at times also (which seemed to accompany depression and anxiety). All of this responds well to pandas treatment (we have used pex and steroids mostly). So, I guess I would follow your daughter's symptoms. Have you done ERP? We have needed therapy to get rid of ALL of the issues. How long ago was the IVIG? Maybe she needs more time? Has she been sick AT ALL since IVIG? Have you tried steroids at all? Hope my rambling helps a bit

Agree with Pow pow- spent three weeks at USF last summer, and it was a game changer for us. Stayed virtually for free at the ronald mcdonald house, which was a nice "put stuff in perspective" add-on to the therapy. Also- pm if you need more info!

I completely agree with Nancy. We have found aggressive medical treatment to be our number 1 priority. However, we have had times when we could see that the pandas had gone into remission, but that some of the ocd had stuck. This OCD was somewhat easily addressed with appropriate ERP therapy- much more quickly than if pandas had been still raging. It was not helped by poor quality ERP which we got close to home (and a little farther from home from a big name psych)- but in fact probably made worse or at least added a lot of stress in our lives by this incompetent therapy. We have also seen that the ocd is stickier as they get older. Which is why immediate medical treatment and experienced ERP is so important to us now.

What an amazing Mom and Grandmom!!! Your grandson is lucky to have you. First, take a breath. Give yourself a quiet moment. (I have two daughters with pandas). You will get tons of support and advice here. I am not going to give you any medical advice- but rather a more general bit of advice that I have learned over the years. YOU will be in the driver seat with all the docs you see. Both Pandas and lyme are kinda murky uncharted territory, and you will get different answers and different protocols from almost as many docs as you see. IMHO it is important not to change more than one thing (about) every 30 days, so that you can tease out what is working. Also- GO WITH WHAT WORKS. If you are trying a treatment that has made no changes in (about) 30 days, it may be time to move onto something new. Try new things, and if they work, stick with them! Use lab tests as a general guide- but IMHO symptoms should be your ultimate guide. All of this sounds obvious- but doctors do not always work this way, and when you start seeing multiple docs- things can get messy. If your son had pandas (only) I would tell you that with aggressive medical treatment plus quality therapy, you should be on the road to healing and managing this disorder within a year. I would imagine that lyme on top would add another year. I guess I would highly recommend the University of South Florida to you. They have a psychiatrist (Dr Tanya Murphy) who has published, done research, and treats pandas patients in a university setting. She also works with a team of psychologists (led by Dr Eric Storch) that are among the best at treating OCD. Good luck, hang in there.

Hi Ataloss- I have a few thoughts for you. When we have a flare up (which can be due to illness, lose teeth, etc) we jump on it asap. My kids are not on abx, but if there is a flare, we immediately put them on a course of antibiotics. We add to that regular advil dosing (3x/day for 5 days) to help with inflammation. This protocol works best if we start it immediately, before the "horse has left the barn", so to speak. If the above protocol does not work, or if the flare up is dramatic and debilitating very quickly, we jump to oral steroids (prednisone). I have taken to using just enough steroids for symptoms to recede and not more. So, for example, in this past school year, each daughter (I have two with pandas) probably went on the antibiotic protocol 3x, and the steroid protocol twice. For us, this has kept our kids at 90% about 90% of the time. Another thing to add- we did have strep 1.5 years (almost) ago, and for that we used clindamycin (as at the time they were already on multiple abx). In the future, if mine get strep- I do plan to jump right to the clinda, so as not to fool around with clearing the strep. I am not sure how long of a time there was between your strep cases, but if there are a couple postitive swabs within a couple of months, I would be concerned that this was actually not a new infection, but an infection that has not cleared, or has only been kept at bay with your current abx protocol. If none of the above works, I would jump immediately to IVIG. My kids have not had IVIG, but they did have pex- which was a great decision. I don't believe in wasting time and letting this disorder claim more of my kids lives. I truly think that this can be managed with abx and steroids, but there may be times when something a little stronger is needed, and I say the sooner the better. As pandas is left not treated effectively (for us anyway) symptoms snowball. It is so much faster and easier to heal from one or two ocd/ pandas issues, than from a laundry list of them. So in a nutshell- my advice (if Dr K goes for it) would be a course of clindamycin followed by a course of prednisone. I would give that no more than 45 days. If that does not work, I would be scheduling the IVIG. Good luck!

Hi Tracie- So glad things are going well, and have been for a chunk of time. For us, it is really important for the kids to live normal lives, and not view themselves as "sick" or "different". We have kept them in school for the most part during our 3.5 year journey with pandas. Does your daughter have an immuno deficiency? Mine do not, and although they do get sick like any other kid, is doesn't seem to me more frequent than expected. Some years, due to dumb luck, seem to be better than others. Last year in school, both had probably 2 colds, 1 stomach virus, and then strep. This year MAYBE both had two colds, and that's it- so it was a great year for us. We have developed a protocol that (so far) is working. My kids DO flare up with illness- but if we address it fast and aggressively, they are fine. We do not take any special precautions (handwashing, etc), and they are not on antibiotics (unless a flare up). For us (and it is a highly personal decision), I would rather risk a mild episode every other year, than try to keep them in a bubble- that has consequences as well. Our kids are smart- if your daughter wants to go back to school, I would let her, and just have a plan in place for if she gets sick and/or has a flare up of pandas. Good luck!

For us- abx plus advil work most of the time, but sometimes we resort to steroids- which take care of these symptoms within a couple of doses. My kids seem to have pandas, and not underlying infection. If it is pandas- I think doing something to calm the immune system FAST is the best bet. Good luck!

Dr L is wonderful, and has seen so many pandas kids. PANDAS can present in SO many ways. I think you have to go through with the eval.

I do think the steroids can affect some test results- esp immunological tests. Personally, I would wait at least 30 days before doing any testing that wasn't immediately needed.

emily- yes, we saw the school refusal run over into overall resistance to going out to public places. I think it is REALLY important, that if the refusal is due to ocd or anxiety (and not bullying, inappropriate school placement, etc) that the kids are put into a "program" to get them in school. Pulling a kid out of school for ocd or anxiety may seem compassionate, but in the end it reinforces their fear, and makes it harder for them. I am not advocating just throwing them into the fire- but I do think that if accomodations (like a shortened day, etc) are put into place, if at all possible this should be done with a qualified therapist, with the stated goal being to get back to school without accomodation.

Mama- your inbox is full- here is my pm... I don't know why the ocd stuck after the pandas episode was gone. I do think that sometimes the ocd is so powerful and scary, that even when the medical reason causing it is gone, the kids are afraid to move past it. That being said, the fact that she was "well" is what made the therapy so successful. Had she been in the midst of an exacerbation, three weeks would not have been enough, and would have been really, really hard. DD started with school refusal one day, like the flip of a switch. For a while, she made up excuses and other reasons (things she thought we might be sympathetic to, I guess). The truth finally came out that she was afraid of vomiting in class. But she was terrified beyond a realistic reaction to vomiting, and she thought about it constantly. OCD. We saw a local therapist who had us on the path of moving her back to school slowly (by this time we had put her on homebound instruction- our school was fabulously supportive). DD complied, and went to school one period a day for a week, increasing by a period a week. It was SLOW, and she was miserable. She was complying- but in school she was constantly thinking about her fear. We struggle this way through her entire second half of fifth grade. We were at the end of our rope, (luckily she was doing SO well otherwise) and Meg's mom suggested USF. At USF the psych worked on confronting the actual fear- vomiting in public. We did not need a plan of getting back to school slowly- we needed her to do so much thinking and talking about vomiting that it became boring, and she was no longer a prisoner to her thoughts. She had to: say the word vomit, write the word vomit, say the word to stranger, look at photos of others vomiting, look at videos of others vomiting, make up stories of vomiting in public and at school, read these stories to strangers, make pretend vomit and pretend to vomit in public, etc. Our psych was amazing- funny, smart, compassionate, matter of fact and tough. He told it straight to my kids. It was not the usual nicey- nice- therapist nonsense. Real work got done in each session, real progress was made. We had liked two previous psychs (both with great credentials and experienced with ocd)- but the therapy we got there was a whole different animal. USF is a three week, outpatient, intense, ocd therapy program. You and your child attend one 45 minute session per day, and there is "homework" to practice. The program was covered by our insurance. We stayed (and had a great experience) in the local Ronald McDonald house. I don't know if the program is for you, but you can contact Dr Eric Storch (he is great) and he will be able to tell you if they can help. I am wondering, can you get to what is behind the anxiety. Pushing him to school is only half the battle- getting to the real cause of the anxiety, facing it, and getting rid of those thoughts are what is going to get him over this hump. I regret not getting to USF sooner, and I will never deal with an issue this life- interrupting locally again. Please feel free to pm me.... Eileen

pm-ing you

EA- good luck- you must feel like you are between a rock and a hard place btwn AN and high cholesterol. At her age, and the fact that she suffers from pandas (and pandas AN) I would, for now, let the concern for the AN win out. I think I would sneakily just move the whole family toward a heart healthy lifestyle- moderate diet and exercise- and try not to worry about it for a while. I would see a pediatric cardio, too. I would not doubt pandas is the culprit here, maybe the autoimmunity is causing some inflammation that in turn is causing the high cholesterol. Good luck!

Mama2- We had school refusal with my older dd, 5th grade at the time. She had a pandas exacerbation, which caused a myriad of symptoms at the time. We treated her with steroids, and all of the symptoms cleared, she was totally back to herself EXCEPT for the school refusal. She had a clear ocd (fear of vomiting at school) issue, and although we worked with local therapists, and she did push herself to go much of the time- she was miserable. We went to USF for three weeks of therapy and they knocked it out. She has not had a bit of this issue since- thank goodness. I feel for you- there is worry on so many levels when they don't go to school: academic, social, self- esteem- not to mention getting some time away as a parent. Can you pin down a clear reason for the anxiety? Do you think this is ocd based?

LLM- thanks for your opinion- appreciate it as usual. Your answer is in-line with what I was thinking. I am planning to try some methylfolate on the daughter with the mutation....