dcmom

Hi Smarty- Both of my kids need braces. To me, their teeth were average looking- not horrible, not perfectly straight either. We live in pretty expensive towns- first DC, now central NJ- so factor this into my pricing- as I am sure their are better prices in areas where half the people are not millionaires (we are not- just suffer from the affluence of our neighbors!) Older daughter had a palate expander- I think it was above $3K. Now has braces $5.5k. My SIL, who has three, told me to "budget" (ha, ha) $9k per child for orthodontia. Looks like she was right as younger dd needs palate expander and braces also. I do have a friend whose daughter got braces for $3k- she drove well out of town for them- I would have done this if I knew, had already started the process. The good news: our insurance covers $3k per child, that takes it down a bit. The price is all in- includes visits, retainers, etc. After they gouge you on price, they do not nickel and dime you They have monthly payment "plans" and if you have a healthcare savings account you can use that. As a side note- I was apprehensive about braces due to pandas. However (just my oldest has gotten them so far) my dd was stable when she got them on, and they haven't affected her pandas- wise in the slightest. Good luck! Oh- btw- this is mostly for girls moms I think- something that just worked out for us. Due to moving, and pandas, we kinda delayed getting braces for my older one (and now, won't get the younger- till we finish the older one- $$$). It got to the point where all her friends got their braces- she was the last- she was literally begging for braces as she doesn't want to be the last one getting them. I have made my attitude be- well- if you really want braces we will get them - this cuts down on any complaining, because I am "happy" to go right to the ortho and have them off and save ourselves some $$. You know- finally have the upper hand on somthing! Now the younger is begging for braces- SHE WON'T EVEN OPEN HER MOUTH FOR THE DENTIST. I told her no way- until I see she cooperates regularly for the dentist.

pandas flareups in general cause nightmares for us

Hi Tanna- That is a lot of meds. I am a fan of less is more (however my kids were on daily antibiotics for two years). I guess my only question is, with SO many meds, how do you know what is doing what? Did you add one at a time? Pandas symptoms are very changeable, I think it is really important to add meds kind of slowly, and one at a time- you do not want to leave a kid on a med he does not need- as there can be side effects or unintended consequences. Are you treating lyme? or pandas? this doesn't look like pandas treatment- more like very aggressive lyme treatment (but that is not my area- my kiddos have pandas). I would just review this with your doc, maybe voice concern about whether all meds are needed. Once we got our kids under control (we did pex)- we have found that less is more. But that is not always the concensus of this board.

Hey T Anna- We have ALL been there! But, honestly, what he did was wrong (ocd or no ocd), and he is old enough to know that. We need to try to maintain "age appropriate" expectations for our kids, regardless of ocd. However- maybe now is the time that you give him the tools to overcome the ocd. It sounds like he is doing okay otherwise. I HIGHLY suggest the three-weed outpatient ocd therapy program at USF. It made all the difference for my daughter and our family. He can confront this therapy now, or in 5 years when he is 20- but he will need to confront it to get over it. Contamination is pretty straight forward, and I bet they would make great headway at USF. good luck!

Hey JP dad- My pandas- non lyme-daughter got a tick, hmm, two years ago? It was engorged and on her overnight (grrr). We did have the tick tested- which I wouldn't do again- it cost a few hundred to find out- yes the tick had lyme (which we assumed anyway)- and just caused me to feel sick. If money is any issue at all, I would not put my money in the test of the tick, but rather assume the tick does have lyme. Our story (so far) has a happy ending, so others may disagree. We went to our pands- friendly- but- not-knowledgeable ped the next day. They NORMALLY will not do anything unless there are symptoms- but they fully understood my position that if we waited for symptoms, we could be in pandas troubel- so they agreed to give us a scrip. I think she was 7 at the time, so I believe it was amox or augmentin for two weeks. She, at the time, was still on daily zith, which continued for 6 mos plus after tick bite- for pandas. She has never had an issue with lyme that we are aware of, and she has been fortunate to have long remissions, with occasional flare ups of pandas- so I think the immediate abx treatment, possibly followed by the long term abx did the trick. I did have a lyme doc tell me that although zith is not the ideal abx for lyme, that the lyme would probably not become chronic if on long term zith. I hope this helps. I would ask your ped for 14 days of lyme abx due to the fact that if you wait- the lyme could cause a pandas flare. This should not be a big deal for them.

Hi maria- How long was he on the antibiotics? At initial onset of pandas, my dd needed 1-2 months of daily antibiotics before we saw improvement to 100%. It could be he needs more time, on the abx. I am wondering why minocylclene? Most kids seem to do zithromax (we use) or augmentin. I would say those are the two on this board that have been used most successfully. The other issue is- in our experience, pandas is an autoimmune disorder. For my dd, it is not enough that we get rid of infection (most of the time) we also need to calm the immune system. (ie steroids) Lastly, we have seen ocd "stick". Kids get in habits, they "learn" from their ocd/ fear, and just because the medical reason behind having it goes away, does not always mean they can let go of it on their own. This is when a really good therapist using ERP (exposure and response prevention) is essential. We have found hitting pandas with everything: antibiotics, immune modulation, ERP along with plenty of sleep, exercise, eating healthy, and not having a crazy schedule, and of course firm (but compassionate) parenting- is what works,

It took my daughter between 30 and 45 days to see improvement on abx, at initial onset. Then the improvement almost happened overnight. Since, we have seen that she typically needs steroids to get real sustained improvement. Dr L will most likely try your child on abx for a while, and then consider trying steroids. Unfortunately you have to be patient. AND- look for improvement week over week, not daily, because healing can come in a sawtoothed pattern.

When my younger daughter was in 2nd grade we moved to her current school. She had a pandas diagnosis, and she also has an issue (that is actually much bigger for her at school) of extreme shyness with adults (very selective, selective mutism). We met with the principal, who was lovely, gave her documentation, etc, and she said she would be there for whatever we needed. We pre met with her teacher, beyond amazing and formerly very shy herself, who was super supportive on a daily basis to our daughter (and all of her students). What we forgot to do was bring the "specials" teachers into the fold. One day dd came home and told me she would probably fail music. She told me she got a "0" for the day. The reason, the kids were required to sing America in front of the class, alone. She could not do it. Yikes. I felt so bad. The teacher had given her a hard time about it. How painful. I immediately emailed the classroom teacher who was shocked, and immediately had a meeting with the music teacher. All was well after that. We are in the process of putting a 504 in place for dd who will go to middle school next year. It really is not for pandas (although that is my diagnosis code), but for the shyness issue. Since it will be a 504 ALL of the teachers will be informed of the issue, and how it should be handled, prior to meeting Julia. This should prevent problems before they happen. The 504 will ask for minor accommodations (basically realize the kid is shy, be a little more sensitive than usual for the first marking period) that will phase out after the first year. Our goal is always to get to "normal", no accommodations, but the 504 is really awesome because everyone in the school takes it seriously- that has been our experience. I would probably encourage a 504- smarty. We had one for my older dd- because she had a bad flare up in 5th grade. There was very little in it, and we just cancelled it this year- it is really a painless procedure (in my experience) that should prevent the type of issue you are having now. Hang in there!

I would march myself down to the school to personally talk to the music teacher. We had an issue with the music teacher a few years ago! I will elaborate when I have more time. I do think the first and best step is always to talk directly to the teacher involved!

Hey smarty! We have had great luck with our schools so far, in DC and now in NJ. However, I deal with everything in a very informal manner- with the teacher. Our school principal was initially given a diagnosis letter and "heads up" and then I told her most likely we could just deal with things with the teacher. So far, our teachers have been wonderfully concerned, receptive and helpful. I reach out to them via email, and usually get a message back within a day. I am wondering who you are emailing (assuming it is email). I think that for the most part, in a school, the teachers are the ones who care about the kids more than the "proper channels" and paperwork. Are you emailing the teacher? If you do not get a response within 24 to 48 hours of an email, I would stop in and talk to the teacher in the morning or afternoon, or lunchtime, and request a conference? If you have a non responsive teacher- that is going to make life harder, and I would then request a 504. In my experience, in our school, you just say 504 and you are set up with a whole child study team....

Woohoo! So happy for you!!

LLM- thank you for this! Since I have two pandas kids, I have worried less about how each of them is dealing with the other's illness..... However the timing of your post is excellent for me. My younger dd has been mildly symptomatic for months and months, her older sister symptom free for almost 2 years. Lately, the older sister has had a couple of emotional moments- and I think it is because of this reason. Things are good- but occasionally the little one does cause issues- and I realize now, that while it is sometimes hard for me to deal with (be patient, have compassion, etc)- when I listen to the talk and realize my older dd is dealing with all of the same issues- but with the tools of a twelve year old- I realize I have more work to do. Thank you!

Yes! Strangers were involved in our exposures! It was invaluable. Our doc (DR R) was amazing, and really spelled it out to the kiddos. No excuses! We went to the holocaust museum in St petersburg, St Pete's beach, and at the end of the trip we did Disney. We liked hanging around the RMH- they are wonderful! We baked cupcakes for the house, and kept ourselves busy with stuff there during the week. For such a difficult time, it was a wonderful, life changing experience for all of us-

Could you try abbreviated days? Can you sit outside the classroom? Is there some accommodation you can make, while still getting her there for a portion of time? I wouldn't be worried about school or academics at all- what I would focus on is showing her she can fight the ocd and anxiety and win- that is the life lesson here.

philamom- we did not have to fly in separately. We had a long talk on the phone, and did probably the official intake with him as our first appt when we flew to FL for the three weeks. I cannot say enough about Dr Storch and Dr R (who was our therapist)- they are amazing and inspiring and totally "get" the ocd- and they are totally unphased by it!

I will second what Arial says-

I agree with Smarty. I have found the school mostly interested in "what does your child need from me" kind of attitude- more than trying to really "understand". (the teachers, in my experience, are the ones that really want and need to understand pandas). I have always started our relationships with schools with a doctor's (neurologist) letter of diagnosis, and also we have used a psychologists letter that suggested accommodations. I have never given the school any pandas information. I have NEVER been questioned.

Jen- keep her in school!! It is not a big deal now at 5- but before you know it she will be 7, 9, 12! Lots of our pandas kids have ocd surrounding school, and it can be very, very tough. The older they get, the more important it is socially, academically and for self-esteem reasons that they have regular attendance. Now is the time, when school is really not at important, that she learn that she can overcome the ocd (or whatever it is) that is making her not go. If you set up the precedence and expectation that when things get too hard, she should take time off- that can be dangerous. (take it from a mom whose pandas dd missed almost half of fifth grade- learned this the hard way). First- this is not easy- and her attendance will not be perfect- it will be a work in progress. Here are some suggestions: 1. Treat the pandas- steroids, antibiotics, advil- whatever- see a pandas doc. YES! Allergies trigger massive pandas symptoms, I think all pandas docs are aware of this. 2. If at all possible, get a decent therapist to work with you. Even if your daughter won't respond to them, they can help you strategize, write notes and requests to teachers, and give you the support you need to get through this. 3. Simplify her morning routine- only require a few things (1. get dressed, 2. eat something, 3. use the bathroom). Yes- we eliminated brushing hair and teeth (did this at bedtime) during the worst times. Lay out the outfit the night before. Get her up early enough so she has way more time than needed. 4. At my younger dd's worst time in K, we had a prize box. She would pick a prize from it right as we were heading into school! This may help. It was not necessarily a great motivator- but it was a nice reward that made her feel good when she did well. 5. My dd at K had severe separation anxiety. Parting with me was very, very hard. Our psych came up with an idea (at first I thought it would no way work) for me, on days when it looked like she might not make it- I offered to come "check" on her during the day, and take her home no questions asked. For us this worked, because she generally liked school. I would go to check on her at a fun time- recess- and almost every time she stayed. I don't know if this will work for your situation, but this is where a pscyh might be really helpful. HANG IN THERE!!!!

PR40- IMHO five years old is WAY TOO young for a tablet of his own- if that is what you mean. Now, if you mean to say you want to purchase a "family" tablet and let him have time on it- that is different. I am lucky in the sense that having two girls, the whole video game and electronic thing has not been an issue (so far). We did not get video games until a few months ago (at husband's whim) and my girls are 9 and 12. In my opinion if they are not asking for them (which mine didn't) it is best not to get them. OCD or no, I have seen many (mostly) boys get totally sucked into electronic games. My twelve year old got an ipad for her birthday this year. It has worked well- our rules are similar Nancy's: no ipad until homework is done, and no ipad in her room at night- I also don't allow ipad marathons (if you know what I mean). Instagram is the "facebook" for her age, a little is fun- too much is not healthy. I do think, however, that computers will be a huge part of their future- and that means embracing them early on. We have always had a "family" computer, and they have been allowed time on it daily if/when they wanted- in the family room/ kitchen, for limited time. It can be a good behavior tool in that way- your son is young, but I would think it would be a "no computer until homework and chore is done" kinda thing. For a five year old- maybe it is a "clean up your toys" and then you can use the computer for 20 minutes (while you cook dinner). I think teaching your child to have a healthy relationship with electronics is a lifelong gift to them (of course it may all go to pot if their child contracts a rare chronic disorder)- it is a balance- not totally forbidding it- but allowing reasonable amounts. and oy- I am TOTALLY against those violent video games and really wish our culture/ society would have the strength and conviction (not to outlaw them) to not buy them. I think the old saying or thought- if you wouldn't share this with your grandma- maybe it is wrong (or whatever). BUT- I don't have boys, so I totally get how hard it is to go against society.

Hey Mar- My kids don't have food sensitivities, or react to food- I want to share that up front, but... I can hear how upset you are. I am going to try to be the voice of reason, just thinking back to when I was a kid, or to my kids now. I think it is not really a huge deal that your son "cheated" and had cookies (from a lying or behavoir perspective). I mean, kids are kids, they like sweets, and their purpose in life is to test boundaries. I don't think you should feel too bad- I imagine that most kids not allowed sweets would sneak them from time to time. I am not sure what his health issue with sweets is- but if it isn't really dire- I really believe moderation is key. We eat very healthy around here, don't have much junk or sweets in the house, but- I do bake and buy ice cream- and I don't restrict my kids when we are out (for the most part). My SIL has been much more of a food restricter, and when we have a family party it is her kids that are hanging around the food. I think it is human nature. I think somehow you need a balance- sweets he can have, and maybe sweets allowed at a party or on special occasions. (if this is physically ok). I look at our job as to train and teach our kids how to be adults. Our kids may have to be adults with autoimmune illness- so in addition to everything else, we need to teach them how to take care of themselves in the face of pandas. I am somehow (not always successful) trying to move from forcing things on my kids, to teaching them to make the right choices. This means sometimes there are mistakes- but better these mistakes happen now, when they are in my care, than when they are young adults. So in other words- balance the treats. If he really cannot have them, find another food that is a treat for him. If it is that treats make him hyper, you may just need to allow some small treat portions on weekends, and special occasions. It may be helpful if he overdoes it once and a while on treats, and then sees the trouble it causes for him- he may listen to that more than you telling him so- esp as he gets older. I think you just want to be careful- it would be very easy to set up a relationship where you forbid sweets and are totally inflexible, and he decides to get them anytime he wants when he is out- which is more and more as they get older. I think the main priority is to have open honest communication with our kids- but I don't think that can be done (just remembering to when I was a kid) if a child's nature or needs or wants are not taken into account at all.

Dut- IMHO stuttering can be a pandas symptom. My dd began to stutter during her worst exacerbation. She was six, had never stuttered before, and had always been extremely verbal and fluent. The stuttering lasted about 4 mos, and resolved at some point after pandas treatment. I know there is info out there- here is one thing I found (didn't read it yet) https://www.aacp.com/Pages.asp?AID=9159&issue=&page=&UID=

Kathy- My kiddos did about 2 years of daily antibiotics (zith) and now have been off all abx for about two years (we give them a course if we see pandas symptoms arise). I will say that the last two years have been WAY better than the first two, so at least for mine, I can say, it hasn't hurt them to be off. I personally started getting very concerned about the unintended consequences of antibiotics long term.... I do agree with the others, however. Summer is an ideal time to take a break. I also would probably not consider a break unless your child is stable and at at least 90%. I would also taper off slowly, use advil during the taper, and possibly expect a small worsening initially that should not last long or be bad. I would watch carefully. Good luck!

so- Hayley- yes, I use my judgement as to when to culture. My kids were positive initially for strep (at onset) and then have gotten it once since. I can kinda tell (feverish, etc) when they have it. The first year, I cultured if they looked at me the wrong way but now I go with my gut. My kids seem to be pretty normal in the sense that they get sick usually twice a year- once a cold, the other time the illness du jour, they clear the illnesses like any other kid (quickly) but then pandas may kick in. Other times we have had pandas flare up for no know reason. So- if she has never cultured positive- I probably would not bother. I am over searching for infection

Hi Denise- My two girls were diagnosed with strep (culture positive, symptomatic) while already on treatment doses of zithromax and augmentin. We immediately removed (temporarily) those two antibiotics and did a 14-day course of clindamycin. This is the suggested antibiotic treatment for strep carriers, and both my ped (not pandas knowledgeable) and my neuro (pandas doc) were on board. The clindamycin did the trick immediately. The girls had a small pandas flare with the strep, which cleared with a short course of steroids, started after the course of clindamycin was over. They were fine after that! Good luck- I hope this is a SHORT setback. BTW- you mention snoring... does she still have her tonsils?

For me, I would be concerned that this is a flare up (doesn't mean it will be a full blown episode). I might get a throat culture, and I would definitely add zithromax and advil dosing (3x day) for five days. I agree with pow pow also, that erp is essential, and really holding the line on behavior is important (in a loving way). It is okay if they have anxiety and/or ocd (that they will have to face and work on) it is not okay if they react to it by directing anger at themselves or others. good luck!