dcmom

Hi Jennifer- I have the courtegen kits on my desk, planning to do mid year. I am interested in what you find out, and also what the difference is between this test and LLM's 23 and me test, and which could be more beneficial..... Thanks!

LLM- please keep us posted on what you find out. I have the courtegen test kits on my desk (waiting 'till mid year due to maximizing our insurance benefits), and am planning on doing that with Dr T. I am interested in the test you are speaking of also- and what the difference of the two is. Any info you can share as you look at the 23 and me and the courtegen would be helpful. Thanks!

This is worrisome- but I think it is important to keep in perspective. As always there is a risk vs reward balance that must be thought about with taking any type of meds or supplements. They all have the potential for unintended consequences. I think we all really try hard, or should, to use the minimum effective med schedule possible in our kids. But- we need to remember that the numbers on this risk are probably pretty low, esp for those without heart issues, and that the risk for not treating our kids is very, very real.

try clindamycin!

Hey LLM- I totally get your concern about "mother's little helper". I personally have always taken as little medication, myself as possible. I don't drink. And I DO worry about the message I send when my kids take so much medicine I can only go by the hope that they will follow my example. And, we have pared them down to nothing- except during flare ups (which we are seeing a little bit of now). I do explain (like you) what every med is for scientifically (well in laymen's terms) and how long they have to take it, and how we try to do the effective minimum. We do the melatonin here many nights. They took it almost nightly during the first two pandas years- I have become a huge believer in the need for a very good night's sleep- at one point obsessing over getting them in bed early- letting go of that a bit as they get older. Now, I give them a choice: if when they are getting in bed they feel they won't sleep- I give them melatonin- if they don't want it- they don't take it. I explain that it is something that your body makes to help you relax to allow sleep, and that sometimes our bodies can get out of whack. I typically don't offer it on the weekends- but I really, really like them to get a full night's sleep before school. Gosh- it is such a balancing act You will figure it out!

LLM- I am sorry I don't have any suggestions that I am sure you haven't tried (daily exercise, waking early, fresh air, etc, etc)- and I know you don't want a melatonin suggestion- BUT I will just throw this out there: I happened to see two minutes of Dr Oz in for Piers Morgan the other night (I never watch Dr Oz- so not sure how the quality of his advice is), but a question came up about melatonin. He said it is fine to take, but that most people take it wrong. He said it should be taken in small doses ( .5 mg) and it should be taken 1 and 1/2 hours before you want to be asleep. We follow the direction on the bottle, and give my kids about 1mg 20 minutes prior to sleeping, and find for the most part it works like a charm. I do like the idea of less (of any med)- and maybe this small amount so far before bed would not cause the issues she usually has with the melatonin. I figured I would put it out there. Good luck- I can tell you one thing I NEED for my own mental health, is for my kids to go to bed and sleep on time, regularly- so I can imagine how this upsets the whole house.

Laure- I am so glad you made it to Rothman! I can tell you I felt exactly the same way when we were there. At first, I was surprised at how frank and up front Dr R was, and how we did ALL of the conversations with them in there. I was used to being more "sensitive" and talking to the psychs without the kids in the room. But I got to understand how totally right he is. And surprisingly- it is not rocket science, but a whole attitude and expectation shift that our family needed to do. The time there was totally an eye opener for me, and how I in many small ways, due I thought to compassion, was actually accommodating the ocd. I also too realized how most of our previous psychs did do more harm than good as well- how painful it is to have to rehash all of your fears once a week for an hour- without the doc giving you the tools to make progress. We have seen too, that our kids ocd is TOTALLY caused by infection/ autoimmunity, however that doesn't change the fact that we need to address it, and give them the tools to fight it, and have the confidence in them that they can prevail, little by little, every day. I hope your daughter continues to make progress!

YES! My dd flared with every lost tooth- luckily I think we are done with baby teeth. We noticed a resurfacing of pandas symptoms a few days to a week prior to finding out her tooth was loose. We started giving (or increasing) antibiotics and dosing with motrin (3x day) for about 5 to 7 days at the first sign of trouble (I usually actually wait 12 to 24 hours to really confirm is is a flare). Most of the times, the symptoms would mostly resolve within a day or two of the tooth coming out. All together, maybe 1 to 2 weeks of some symptoms. My older pandas dd did get braces this year, she is 12. I was a nervous wreck. But- so far no issues (she has had them since October).

Hi Jen- I would be interested to hear what you find out today. I have the kits at home, but am waiting for mid-year (for insurance reasons) to have it done. Thanks!!

Lisa- so sorry for what you are going through. If you are with Dr T sounds like you are addressing pandas medically. My daughter missed half of fifth grade (2 yrs ago) due to ocd. We tried half days, local psychs etc- she was just so scared and depressed.... Finally, at the suggestion of another pandas mom, we went to USF for therapy. Wow- what an eye opener! My only regret is not getting there before she missed half the year. If I were you- I would call Dr Storch at the Rothman Center for Anxiety at the U of South Florida and see if the program is a possibility. I know it sound impossible to you- but- as parents we really need our children to comply with us and follow rules. They cannot be left to yell at teachers and refuse to do things. I know all about how tough ocd is, and I do know that some temporary accomodations are in order, but I learned so much from USF about how to stay firm, be up front with them, and really learn NOT to let my children's ocd take over all of our lives. I am not saying it is always easy- but I had to get over being sad and scared for them, and realize that sometimes "tough" love is real love. I could not have come to this point without the gifted people at USF to who I am forever indebted. I suggest homeschool to be set up ONLY as an extremely temporary measure, with rules (no tv, etc) in place, and a real "program" about how to get back to school. At USF we talked a lot about "age appropriate" expectations, being up front with the kids about what they should be doing (or not doing), and being somewhat tough about a plan to get there. Rewards are a part of the program, as are making sure they have professional help to tackle the ocd. (no sense forcing a kid to school without showing him/her how to get over the ocd- you are setting them up for failure). Good luck- I have been there- this will pass, and you will be all the stronger for it (wish I didn't have to end up so darn strong!)

Hey T. Anna- sorry you are going through this- we had some difficulty with showering- but it did not get that bad- was not our main issue. I do, however suggest CBT- specifically ERP. I have two pandas daughters who we treat medically fairly aggressively (abx, steroids, iv steroids and pex), however I will say we have had flare ups where afterward the ocd just sticks. In other words, I can see them coming out of the worst- very much back to themselves, but one or two of the ocd issues is very entrenched, and not minor. We have found high quality (USF), tough, ERP to be the best medicine for the "stuck" ocd. In other words, my dd had a major flare where everything went to &*%$- then she had IV solumedral- and came back to us- personality returned, enthusiasm returned, happiness returned, some ocd disappeared- however she still would not go to school due to ocd- which was really tough on her. We wasted time trying to figure it out, then went to the ocd program at usf and bam- she got over it. So- she needed BOTH the medical intervention and the psych intervention. Not sure if this is where you are- but just wanted you to take another look at ERP- oh and- I won't go on a rant here- but you need a psych who takes action and gets results- and NOT a psych who wants to do a lot of "talking". Good luck! I have heard healing after IVG can continue for a full year!

tattoo mom- Let's see... Steroids and Ibuprofen should not be taken together (unless your doctor tells you differently) because the combo greatly increases the risk of stomach bleeding. While we don't do daily antibiotics normally, I do them during steroid bursts, this is our protocol to help with inflammation and also to reduce the risk of infection while on steroids. Certainly steroids can make the child irritable- be prepared. Also, be prepared for increased appetite- for us, that is a blessing- but if weight is an issue stock up on healthy foods and snacks. From my research, it seems steroids can lower potassium, so we try ti increase the intake of potassium rich foods (bananas, oj, canteloupe, raisins, etc). My bottle of melatonin says not to take with steroids- so we do avoid that as well. Steroids can cause difficulty sleeping- we either give the whole dose in the am, or half with breakfast and half with lunch. I read once in an article on MS a suggestion to take ibuprofen after done with the steroids for several days to avoid "rebound inflammation". We do this also. That is all I can think of now- good luck.

Do you have a pandas doc? If so, they could prescribe the pre and post op antibiotics...

LOVE Dr Rahman!!!! You will learn a lot- he will get your child back on track!

Maybe five days wasn't enough- I would check in with your doc.... In the meantime, get her on advil three times per day for 5 days.

Hey Misty- tough decision. My kids haven't had IVIG- so I cannot comment personally. However you should expect that IVIG is not a cure for pandas, but rather (hopefully) for the current episode. IMHO the best route is to treat with the least invasive treatment first- so something like abx and advil, followed by steroids, then IVIG or PEX. However- I think the steroids would make you ineligible- so it is a tough choice. SSRI is not an easy decision either. First of all pandas kids need to start at a really, really low dose and need to titer up very slowly. Maybe one increase every 3 weeks? Most non pandas docs don't understand this- so be careful- get some advice on dosing here or look for a paper by Dr Tanya Murphy, USF. This means it will take months to get to full dose, and then more time to judge effectiveness. VERY hard to do with a disorder that changes weekly. I am NOT against SSRI's, I just don't think that for many pandas kids they make sense. Most of our kids have a disorder that is triggered by illness. They have months of being totally fine, flare ups, and remissions. If you put her on an SSRI- how will you really know it is working. I hate the thought of a kid getting stuck on the meds if they really don't need them.

hey lisa- just offering my thoughts: Dr T is relatively conservative- so I always feel comfortable with what he recommends from a "safety" standpoint. My kids have had amazing and long lasting results with steroids. Sometimes we have needed a 30 day taper, other times a short 5 day burst has done the trick. I do know a doc that has prescribed (with success) a monthly steroid burst for a pandas child. They are doing this until things stabilized. Sounds like a great idea to me. Since Dr T has given you the green light, I think I might try the burst again. I would consider following the steroid burst up immediately with 5 days of regular advil dosing to avoid rebound inflammation. (steroids and ibuprofen cannot be taken together BTW). Make sure she eats well, gets a lot of sleep, is not overscheduled and is following a routine- this helps a lot in our house. Good luck!!

Really touching clip- we are certainly not alone. I don't know if I could see this film in public (too much crying- I can really get going!) But I will be looking for it on demand!!

Hi Brink- I totally feel for you. I am not in your position (2 younger dd's with pandas/ocd)- however I have envisioned myself there many, many times. During my younger daughters worst episode (she was age 7- and tiny for her age), we also had to hold her down to keep her from hitting and/ or running away. Not memories I like to think about- but it has always made me wonder what happens if this goes on when she is full sized? I will second what mom said above- have you looked at pandas/ pans or an autoimmune connection? Especially if you have seen or are seeing a big change that doesn't seem right. We are also able to "treat" our kids medically, and see them live pretty normally. A few weeks of steroids over a years time. Anger is a HUGE pandas red flag in our house. Mostly, my girls are happy, respectful, cooperative kids- but, when we start seeing temper tantrums or rude/nasty behavior- we know something is up. Whether or not that pans out for you, I would also suggest some intensive therapy. At 14 (and full size), my worry would start to be time. You want time to help him get this under control prior to adulthood (legal adulthood) and even a driver's license. I highly recommend the program at the Rothman center at University of South Florida. Now, they focus on ocd, and know a lot about pandas, but I do think TS is also a specialty, and I know they do wonders for behavioral issues. It is a three week, one hour per day, outpatient, therapy program. It is one of, if not the, best things we have ever done for our kids (and we have done a lot). Dr Eric Storch is in charge, and you could contact him and discuss your son. He will be very up front as to whether their program is a fit, and if it is not, may be able to make some suggestions. He is a wonderful person and doctor. Good luck!

Lisa- I totally agree wtih michiganpandas- we did the ocd therapy program at USF- it was amazing. Most times, therapy is needed along with medical intervention. We have not been able to find local psychs that are anywhere near as good as USF. Also- to help you out now- I would consider trying 5 days of daily, regular advil dosing (3x per day). Many of us find it at least takes the edge off. We use liquid sublingual melatonin by source naturals (on amazon) to help with sleep- it is a lifesaver! We used (and love) the book "What to do when your brain gets stuck. A child's guide to overcoming ocd" (amazon) It is a way for you (and dd) to start learning about fighting back. Also- hopefully you will start to see progress. Most of us here agree to look at progress not on a daily basis, but week over week. If you are seeing improvement week over week- I would stay with whatever course you are on. Otherwise, I would probably give a med (antibiotic, etc) one month, if at the end of one month no progress, I would move on. With pandas, it is good to work methodically, try one thing at a time- but also to have a sense of urgency, because the longer you wait with something that isn't working- the longer the child suffers. It is a balance.

Hi Lisa 3- I am in NJ also. There is a support group that meets in the Edison area once a month (a Monday night). If you are the northernmost end of the shore, that might work, otherwise I would think its too far. We see Dr T also. My daughter has had most of the symptoms you describe. I don't have time to write too much, but wanted to let you know that things will get better. Dr T will treat the infection, and then most likely try to tamp down the autoimmunity (maybe with steroids). Hang in there!!

Do you think the braces are causing a pandas flare up- or did the braces trigger the tic in more of a "habit" way? (my kids have ocd, no tics, so I don't know much about them). If the braces have caused a pandas flare, I would consider a steroid burst (if you have had positive results from steroids before), followed up by a week of advil and a short term increase in abx- to help calm things down. My dd12 got braces this year, I was very nervous- it hasn't caused any issues, thankfully.

hey tin- You know, I have come now to look at PANDAS first, for any health/ emotional or general issue with my kids, BEFORE looking at other things. General docs can always put a symptom neatly in another box- but for us, it is always pandas, and it presents differently sometimes. For us, these mild issues have always responded to either abx and advil (for 5 to 7 days) or steroids. Certainly worth trying one of these short measures first, before a long term med. Good luck!

Just wish more docs would take this disorder seriously. Gosh- our kids really can become totally incapacitated and suffer so. I think after trying abx and a course of steroids, pandas should be treated with pex asap. But then why not follow the pex with something like cellcept for 12 months, to hopefully give the child time to heal.

tin21572- Just wanted to add that my dd (12) had a bout of headaches last spring. Ped said sinuses, allergies... It did not make sense to me. The headaches were accompanied by a slight change in mood and a change in behavior, spending a lot of time in her room. Going with my gut, five days of steroids cleared ALL of it: headaches, mood, and staying in her room.