dcmom

Damminix (you can find online) sells "tick tubes", which are what Shoemaker is talking about. Mice are a huge source of lyme/ ticks. They take the permethrin-soaked cotton from the tubes, back to their nests. This kills the ticks in one of their big habitats. Many people also make their own tubes. I also just read that diatamateous earth (sp?) or sulfur sprinkled on lawn is good for getting rid of ticks. Permethrin can be sprayed in yard perimeters, rock walls, etc. It can be sprayed on shoes and clothing, it will last a few weeks (I will not do this for my children, however). Preventing deer and mice, in your yard, to the degree possible, is helpful. Keeping lawn short, perimeter areas trimmed. Obviously, tick checks every night. I do not let my kids in tall grass, weeds, or woods (unless special circumstances, and then with lots of precautions). We just moved to a particularly lovely, but tick infested, part of horse country, in NJ. I imagine it will take a few years of doing the above, to make a dent in our tick population. It is a real bummer, we live across the street from a preserved "meadow" with a large stream running through it. This would be heaven for the kids and dog- but now, we only frequent there when the ground is frozen. So sad. Of course, my kids have ocd- so I need to remember to keep "balance" with all things we do....so, I do this all without panic, and without talking daily about ticks.

We started dd (10) on 12.5 mg/day of zoloft recently for ocd. It did not seem to be doing anything so we took her off. At the same time she had strep. After that things went south, and mood issues/ mild depression started. We restarted the zoloft, grasping at straws, really. Mood has improved. So- too many variables have changed to really know, it does seem the very low dose of zoloft has improved her mood- which makes it easier to work on the ocd- and things in general easier. We plan to wean her off in the summer, for a real trial as to what it is doing for us. Dr Tanya Murphy did a study with pandas kids and SSRIs. She found, when started at a very low dose, and slowly raising, some pandas kids do benefit.

Emerson- My daughters like Kefir. They drink plain, or we put in blender with ice, frozen strawberries, frozen blueberries, frozen mango, a banana and water. Makes a nice smoothie- not sure if it is particularly healthy due to the sugar....

I am wondering what exactly is an immune deficiency. We just got some recent results back, and one daughter is low in IGG and IGA- she is below the lowest number in the reference range the lab gave. Does anyone know how to interpret this- haven't seen doc yet..... Could prednisone cause this, and it be temporary? Thx Eileen

Laure- I am SO sorry. The ocd sucks, it is so hard for them, and heartwrenching for the parent. I know you must be feeling drained and devastated. But, you know she will get better- hang on to that. So- we have never had chronic strep issues. My girls both had strep two years ago, at onset. They have both had T&A and constant antibiotics since. Strep exposure, but no strep until a month and a half ago. Younger one came down with classical strep symptoms (fever, sore throat, overall malaise)- she cultured positive. Cultured older one that day out of precaution- negative. Three days later older one woke tired, and with increased ocd/anxiety, cultured her again positive. Both are on multiple abx for possible lyme (i am still not sold). Younger on treatment dose of augmentin and zithromax, tindamax 7 days on/ 7 days off. Older one on treatment dose of zith and 5 days per week of rifampin and flagyl. I have not gotten into the lyme mess with the ped- so she only knew they were on zith. I requested clindamycin (I believe Kayanne's daughter originally had trouble clearing strep, and clinda was what did it)- this is the recommendation for carriers. The ped was planning to suggest that. Both girls stopped all meds (except probiotics, and flagyl for older) and did 14 days of clindamycin. This did the trick. Feeling better physically, follow up cultured negative. Older daughter was immediately worse with strep- she was approaching 90%, went back to around 75%. We did IV steroids (I know you don't want to hear that) for her at home, which definately stabilized her- however she is still stuck at the 80% mark. Mostly ocd, not total panic level, but she is an avoider. At this point I am thinking she just needs time to heal. I hope she will be around 90% in a month (this is the pattern we have seen). We are planning an ocd intensive therapy this summer in FLA to give her tools to combat the last 5-10% sticky ocd, which only seems to go with plasma pheresis. Younger daughter was about 110% prior to strep (really heartbreaking). She did not start to slip for at least a full week. She is now worse than the older sister; ocd, plus panic/ temper tantrum issues. We haven't done steroids with her- and that is really the difference. We are holding off a bit to see what happens, but I have the Rx in my purse. She will be SO much better in the summer, without the pressure of getting out the door to school, and hopefully time will heal her. So the clinda really worked to eradicate the strep. The llmd wanted me to remove all other meds, as clinda can be hard on the stomach. After the clinda, we went back to our normal regimen. I really think, though, the strep got the pandas autoimmunity in motion, and they need(ed) something to stop that process. That is why my younger is not fairing as well. I hope you find some answers.

EAMom- It seems you cannot receive messages. I am glad to see you posting- but hope it doesn't mean your dd has hit a rough patch. Hope things are still good.... Eileen

Arial- We all know you are totally on top of the ocd. We have had (at times) major food issues- started with not eating dinner, and then tried to expand it. At the time both girls had the scarier food stuff, they were really "sick" with pandas. We did not do ERP with food- we worked on the other stuff- and did whatever we had to do to get the food into them (I will explain below). I had some fleeting concerns that I was creating bad habits, but my kids are really thin to start, they cannot afford to miss meals, also being hungry always escalates everything else. Once they were "recovering", we went back to our old rules and habits- without any issue at all. I have found, after going through that, that I have relaxed some rules (eating before dinner, etc). When food was particularly hard- I pushed meals in front of the TV- longer shows or movies were best. I would not ask what they wanted (decisions could be overwhelming), I would make up a tray of nutritious small bites: whole wheat pasta with olive oil, raw veggies with ranch dip, cut up fruit, small bites of homemade chicken fingers or turkey meatball, whole grain crackers, cheese chunks, finger sandwiches, smoothies. Many times, with the disraction/relaxation of the tv, they would forget and eat more. I also had food available (small appealing healthy high calorie bites) on the table at all times. If dinner was a problem, we did a very large (dinner like- yet disguised) after school snack. Both of my kids went a whole year without gaining a pound- although they grew- so they went from nice and slender- to way too thin. One has gained and is back to nicely thin, the other maintains a lot of food pickiness, so she is still too thin- therefore the relaxed rules. You know what you are doing- so go with your mommy instinct. And really- if eating is and ocd issue- than the first step is getting them to eat (even if that is in front of the tv, video game or while in the clubhouse)- and that is ERP.

Mom- what type of NAC dosages did you use!

Nancy- I am really interested. One of our daughters (we have 2 with pandas) has been doing great(relatively speaking) and is in recovery from a pandas episode. What we are stuck with is some ocd. She is not really bad enough, right now, to be a candidate for pex, maybe ivig, however the ocd is intrusive. The only thing she really is having trouble with is getting to school (fear of vomiting). Otherwise, is generally cheerful, cooperative, doing schoolwork, socializing, etc. We do erp (and are doing some intensive work this summer), but it would be great if something could take the edge off to help her find some inner motivation/ can do it spirit. She is on 12.5 mg of zoloft- seems, maybe, to help with mood, not with ocd- will be weaning her off this summer (again). Anyway- thanks! What would the possible issues side effects be with lamictal- I mean, I will research it, but off the top of your head.... Eileen

I had heard second hand info about a doc having great success with lamictal.

I am considering taking my kids to see Dr B. We are considering IVIG at some point. We already see a couple of pandas docs, but neither take any insurance. Dr B does take our insurance. I have a few minor questions, please PM me.... Was Dr B helpful in getting your insurance to cover IVIG? Does he use Gammunex brand IVIG? What dosage does he typically do? Does he pre-medicate? Thx Eileen

Mama2alex- Sounds like a really rough week- I am sorry. I don't have much for you, other than: Of course- you did the right thing- breathing comes first- you had no choice, so I wouldn't dwell/stress on it. My kids possibly have lyme- not sure if it is our issue- but when they were in crisis in Dec (pandas), a prominent Columbia U lyme doc told me to go ahead and deal with the crisis with steroids, as long as they stay on abx during. Our neurologist also always insists that a month taper does not render them immunosuppressed. I believe that is true, it may dampen things down, but not to a level to be overly concerned with. I don't believe there is too much published info on this- Dr T gave me one study on lyme and steroids (dont' have it anymore) that showed no difference in outcome for those that have used steroids. Hope he is doing better....

If you are thinking you want ivig, and you want to maximize your chance at getting it covered by insurance- Dr B is your best choice.

LLM- Sorry you are awake at night I kinda skimmed the post, kids, dh and tv on- so not able to fully concentrate. But, this does sound plausible to me. I mean really, if you are addressing an illness, you should be seeing improvement. I have not delved into the science of the article, but on the surface it sounds a lot like pandas. Inflammation, autoimmunity and cykotines in response to illness, or actually the toxins produced by the illness. All of this due to a genetic succeptibility. Am I getting it? So I am curious- what are the treatments? You know how I have/ am struggling with lyme vs pandas- and this is the thing I find so frustrating. In my kids case, treating for lyme has done nothing (yet, anyway) good or bad. But, treating for pandas with immunomodulation has always helped, and yet, is contraindicated in lyme. Ggrrr.

YES! I have two daughters with pandas (lyme questionable). We have noticed mini flare ups with the loss of teeth. I would say typically we see increased low level pandas stuff (emotional for us, mostly). Typically by the time the tooth falls out, things start improving. Each of my daughters probably experienced this 2 or 3 times. Typically, advil helps, and the issues go away a few days after the tooth is out. Once, my older daughter lost 4 teeth in the span of about 2 weeks- we eventually had to do a steroid burst to calm this flare up.

Hi Wilma- I am in NJ, and haven't found anyone. We had a great psychologist in DC, who, although did not know about pandas, was open to it, and was a huge help. I have tried 2 in NJ that claimed to understand pandas and they were not good experiences. I can tell you, I don't think there are any in NJ that accept insurance. I saw someone in Philly who was great, but it was too much to drive 2 hrs and pay $200 each time. I have two kids with pandas. Do you see Dr T? I think he knows of someone he might recommend who is just over the border into NY- just north of his office....

Well, firstly my kids have not had tics- only ocd (plus frequent urination, sleep issues, restrictive eating, sensory issues, etc). Both girls had an overnight onset at the same time as positive cultures for strep. Since, they have reacted to other triggers (other illness, strep exposure, loosing baby teeth). It has been hard, but they are happy and doing well. The label will not change the symptoms- so don't be upset- in fact, there is treatment for pandas, if needed. You will find a lot of support here.

Tatoomom- I have two kids, both have PANDAS I think there are quite a few of us on this forum with multiples. They do think there is a genetic component- although many moms her have a bunch of kids- not all have pandas, so I wouldn't panic. My girls are also very sensitive to strep exposure.

I feel the same as Nancy. DD is going into 6th grade. I adamantly did not want her to get any vaccines right now, and her neurologist agreed. We have deferred for a year. I think this summer we will check titers- if she has immunity- we don't have to worry about it. If she has no immunity, we will individually consider each shot (meningitis is probably the one most worth considering for us). I would hope to have her at a really healthy point prior to any vaccination- pandas free for a time period. I also would like to have our doc standing by with medical intervention in the case of an exacerbation caused by the vaccine. Really cannot imagine doing a vaccine- but hope in the future to be at a point where we could consider. I guess my goal would be to have the meningitis vaccine (although I do need to study up on its effectiveness) prior to college.

Go for the PEX!! If you have any questions about it PM me. PEX is not so expensive, frankly. We had it done at Georgetown, in network. It was about $5k- that was the negotiated rate. It was 4 days in the hospital. My kids came home, one at 100% and one extremely improved and on the way to full remission. I think it was a bargain, wish we could do it more often

Laure- I had another thought. Have you ever had her tested for allergies? Apparently the allergies in the NE (specifically oak- I think) are horrific this year. I never have an issue, and have been taking Claritin daily. My mom saw something on the news that people who have never had issues before, are now having problems. I have heard from a parent, that their child's allergies causes only pandas symptoms (ocd, tics), no typical allergy symptoms (runny nose, sneezing). Maybe consider claritin or benadryl, and an allergy test? Just brainstorming....

I would NOT go to Morristown Memorial, Overlook Hospital in Summit, or Robert Woods Johnson- I KNOW that they do not believe/treat in pandas. Ugh. I would look into Newark Beth Israel, maybe Columbia in NYC. That is rough. If possible, is there an advocate or attorney to consult, to make sure you can take her out or stay with her if you want.,,, The other thought- go to one of these hospitals on the basis that you are afraid she might be having seizures. Maybe they will admit her for a 2 day veeg, under neurologist care?

Laure- could you do a combination of my and SF mom's suggestions. Drop everything- do 14 days of clindamycin (with lots of probiotics) to erradicate strep, if any. THEN, if she is not better, drop all meds (except probiotics). If it IS a herx, how long until you see improvement? A few days? If no improvement, so you feel it is not a herx, consider IVIG, steroids (possibly IV) or pex. It is still hard to have absolute proof, because with pandas, things can take a few days to react, which may muddy the waters. But maybe this process would give you some clues.

Laure- A few thoughts- take what you like First- I am SO sorry. Both of my girls prevent with ocd, so I KNOW how hard it is. Hard to see them live so tortured, and hard to have NO life yourself. My girls both had strep recently. I stopped all meds and did clindamycin and probiotics for 14 days. It seemed to clear the strep. They both have had a bump in symptoms, but so far, somewhat manageable. We did do steroids for older daughter post strep recovery, and she is in a MUCH better place than her sister, who we are considering steroids for now. I know you tried a 1 wk burst, and you probably don't want to do more steroids. But I am thinking if you are fearful there is strep somewhere, you might want to try a course of clinda. I think I read Pandas16 saying that a doc told her Bactrim is not a great choice for people with autoimmune disorders- maybe she will chime in- or you can check with her. Has she been sick at all recently- a cold, allergies? Lost teeth? I have found that, for my girls, the trigger is a quick event- which doesn't hang on- but once the autoimmune process starts- it doesn't shut off without medical intervention. This is a cluster$#@% , that is ALL I can think of, because I know if there is chronic lyme- steroids are contraindicated. So, if there IS chronic lyme, then theoretically you need to treat and rid of the lyme, and may still have to stop the autoimmune process. This is why I have decided to continually address the autoimmunity, lyme or no lyme. BUT- my kids really have NO physical symptoms of lyme, and have been able to have long remissions- so that is why I am skeptical of lyme. Anyway- I really feel for you. I would BADGER these docs until they give you some things to try-

I would not do it either. I think it is GREAT- lets let everyone else do it- so there will be less strep. But, like Vickie says, each exacerbation is SCARY, I could not knowingly send them into one. Also, vaccines fail- with our luck- our kids could still be vulnerable. And lastly, my kids have "reacted" to non strep triggers, so the end of strep, does not mean the end of pandas, for us.