dcmom

During my youngest daughter's initial (and worst by far) episode, she had major night problems: fear, mild hallucinating (intrusive thought), night terrors, etc. She also had some rage behavior (usually associated with some type of ocd). Once treated it all went away.

Hello parents. Two pandas daughters, both need braces, one needs an upper palate expander first. Has anyone done braces since pandas diagnosis? Has it caused any issues? Invisalign? I may check to see if this is an option, not sure if it would make any difference. (we have not seen flare ups with dental cleanings/exams>) Thanks. (One daughter could in reality go without- she had a palate expander prior to pandas with no issues. The other def looks like she will NEED at least the expander.... I guess my plan would be to get these done asap, as I would rather cause issues now, than when they are in high school.) Looking for any input

Peg- y'know I think the jury is still out on whether these kids really need to be on daily abx- so I wouldn't say you did a stupid thing. She could have flared while on the abx- who knows- I assume it has happened before. I currently wonder, are we better off the abx, and then using them for flare ups. When they are on the abx daily- does their body get used to them, and do they not work then for a flare up? This is not scientific, just my thoughts, for what they are worth. However, we have had a MUCH better year this year off, or only 2x/week, antibiotics (daily during a rough patch)- than the previous two years on daily abx. Anyway Peg- at least you are ruling in/out things, and moving forward.....

Minnesota mom- For us, talking back to ocd did not work. We have found that the only worthwhile therapy for ocd is ERP (exposure and response prevention). It is a very particular type of CBT proven to work for ocd. It entails breaking individual fears/ocd down into small parts and "facing" them (wonderful if this can be done in the therapy office) one at a time, step by step, practicing many times per day, and going slightly beyond the actual fear. We saw several therapists who liked to "talk" a lot, and frankly, I think this made things worse. When we finally got to a qualified and experienced therapist, there was not a lot of "talking" but lots of "exposures". That is what worked for us. Meg's mom has good advice above. Maybe you can discuss this with your therapist. I find, sadly, I have run completely out of patience in dealing with any medical or psych professional that doesn't "get it" immediately.

That may be a tough fight We had to fight to have it at Gtown, which is IN our network, since it PEX is not "approved" for pandas, according to our insurance. Dr L was a rock for us, however, and did get it through. It took almost three weeks of daily calls by me, Dr L, and my dh's hr dept. If there is someone at the HR dept of the company that provides your family with health insurance, that you can get involved, on your side- we found that helpful.

Hey Coco- My kids don't have as many infections (Hpylori, herpes, myco), so I can only give you our experience.... We definitely do not seem to need regular antibiotics for pandas to stay well. I had both girls OFF of all antibiotics this summer, with no change. This school year they have done a prophylactic dose of twice weekly. Recently one daughter seemed to be having some diarrhea associated with the antibiotic days, so I have taken her off all antibiotics again for now. So my thought would be that you may not need all the antibiotics for the PANDAS. The decision would be whether the infections are gone or at least under control. I have been wondering about yeast myself, lately. I need to look into the symptom list, we seem to be fine outside of exacerbation- but the diarrhea possibly associated with the antibiotic days had me wondering. I had some diflucan in the cabinet, so I gave dd two weeks, in hopes of helping her gut (if it was needed). I have also temporarily added Florastor. She has had no issues since I took her off the abx. I have been wondering if it would make sense for our kids, who are on years of antibiotics, to do some type of every six months do a course of diflucan as a matter of course. I plan to discuss this with my doc when I see him. What is the test for yeast? Is it accepted in "mainstream" medicine? Hope you find some answers.... Eileen

I sent you a pm

MMWG- I am not disagreeing with any of the suggestions above, just sharing our info. I have 2 pandas girls. They both were triggered by strep, but DO react to illness in others around them. This reaction to illness around them, has been calming over the last year. There may be something to getting older (they are 8 and 11, now- we have been at this three years). One has always been "regular as rain", while the other has had chronic constipation since birth. My wonderful grandmother (no neuro or psych issues ever) had chronic constipation until she died at age 95. She was exceptionally healthy her entire life. Constipation is one of the top problems reported to pediatricians (according to my old ped). So, while I believe you should try to solve the issue, I don't necessarily think it has to be related to pandas.

arial- I am just going to throw a few thoughts at you, fwiw, since you and I have been her a while together I am in total agreement that IMHO anti-inflammatory and immune modulation is KEY with pandas. For my kids, these things (steroids mostly, advil and pex, also) are what has given us pretty much 90% "normality". In our house, we need to address infection like any "kid", but then we need to go another step, to halt the autoimmunity. So far, so good, with this plan (fingers always crossed). But- WTF? Why so much strep for your son? Is he actually not getting rid of it? Is it "intracellular"? Is it immune dysfunction? My first thought would be a round of clindamycin. This is the drug of choice for carriers. We used it when my kids did get strep while on multiple abx, and it worked like a charm. It is a bigger gun abx, for sure, so I would only do a normal course- but it could be worth a shot. Second- I would contact Dr Kaplan (strep expert). He is not a pandas believer, but I have actually spoken with him on the phone a few times, and he is kind, and willing to discuss strep in depth. He may have some insight for you. He may not. I assume you have tested your household for carriers? There is no scientific proof (I believe) that strep goes intracellular- but it might. Maybe this is the reason your son needs to remain on the antibiotics. Sammy needed to stay on the abx for several years before he could wean off. Could the strep be covered by a biofilm? What would be the protocol to address this. Lastly- I guess a thorough look at the immune system is in order. Could IVIG help your son fight the strep? I do think a combo of keeping the strep in "check" even if you cannot erradicate it immediately, plus an anti inflammatory could be helpful. You will figure it out for him- hopefully Dr M will have some insight....

My mom's gp now offers this. It is a group. I don't remember the specifics, but it was about 1k per year, and offered things like: access to appt with your doc quicker, a cell phone number, and I think the possibility for email communication. When we read this (and this was prior to an article I did read on concierge medicine) we were not thrilled. I felt like more than half of the concierge "benefits" were something I would expect from my doc. I wondered what type of message this sent to the patients that didn't sign up- we could be dying- but were WAY down on the list. I also felt that GP's in general were fairly useless for more serious health issues, that I usually bypass them and go directly to a specialist, so I wondered why I would pay $1k per year for someone I only see for the flu or a cold. Unfortunately, this does seem like a trend. I don't blame the docs- I do blame the insurance companies. I could see a program like this being useful for someone on their own, especially an elderly person- but how many seniors on a fixed income want to put out another thousand a year.

Sharon- I am going to kind of agree with Nancy. I do not know your story, or what your son's symptoms have been- but I will assume things have been similar to most of us. Immediately, I do think your post sounds a bit like you are panicking, and who doesn't. But, I think the fact that your son responded so well to IVIG, should actually calm you. We have been on this path for exactly three years now. In the beginning (lets say the first two years) I really wanted to put my kids in a bubble. I kept them home from school if there was illness, we avoided family members with even the slightest cold, and they took daily antibiotics to ward of illness. I have since learned that the reality is, we cannot keep kids from getting sick. Even if they were in a bubble, I am sure something would find them. So- over the last three years, we have worked at developing a protocol to allow them to live a normal life. This "normal life" is VERY important to them, and important to me also. They go to public school, sleepovers, parties, and we occasionally sociallize with sick people! We deal with the consequences. They get sick, on average, twice a year- sometimes this causes a flare up, sometimes not. Hawaii sounds so very tempting for many reasons But I do wonder about the long term effects of splitting the family, leaving your home, and homeschooling. I wonder if it will make your son feel less "normal" or even feel guilty. I also think, with the prospect of this being an illness we have to deal with long term, that facing it, figuring out how to treat it medically and maybe with therapy, is something I would like to do while my kids are still minors, under my control. If the "surf" is still calling you, I might consider telling your kids this is so they could spend more time with their grandparents, rather than focusing in so much on your son's illness.

Yay! I have to say that Dr T has been a rock for me this year, and has kept my girls well. He has a level headed approach. My kids both had pex- so feel free to message me if you get to that point. (It wasn't bad, and it worked.)

I would be interested in this is well! Colleen- the only thing I could say off the cuff is to look at any articles that illustrate poor short term memory during pandas flare ups- this has to affect math abiltiy. I will look, someone must have something.

I am lucky that my family has been very supportive, it has been helpful beyond words- however, my daughter's initial onset was fairly debilitating. Frankly, you don't need anyone "with" you. And, you can just ask your husband if he can't be with you, can he please indulge you to do what you think is right for your daughter, because you do not like the look of the research you have done, and just want to be pro active in case "the worst" happens. I agree with LLM you sound completely panicked, and your dd's symptoms sound very mild. First, you cannot do what you need to do in a panicked state of mind. I concur with LLM in that my kids had a very debilitating onset, and have gone on to thrive. It is a diagnosis we are stuck with, and have to "manage", but they generally live life 95% symptom free. The KEY to that is having a pandas specialist on your speed dial, ready to treat at any sign of an issue. So, I am with you that you need to get to one, the sooner the better. And, I am a little bitter I think, but I would not waste time with a doc unless you have MULTIPLE, POSITIVE references from PANDAS PARENTS that the doc actually TREATS pandas. I know in my own house, I diagnosed my own daughter after reading info (in desperation) online after her overnight onset of ocd (I didn't even know it was ocd at the time). I spent then next two days reading EVERYTHING I could find on pandas, and the next few night crying myself to sleep. My dh DID NOT understand. He was mad, why couldn't I just accept this and move on with our life (after a few days!!!). Men are different. I think three years later and two kids with pandas, he would have been more sympathetic at the outset- but I did all the research, NOT HIM. There are many kids who come on the forum with a mild onset, and go on to be well, without relapse. Let's hope this is your daughter- and you end up looking foolish But in the meantime, you can prepare for relapse, without your husband being 100% on board. To be honest, I still lead the charge of taking care of this illness: research, doc appts, therapy, etc- that is just the dynamic in my family. My dh of course is on board now, but would still probably be less proactive than me, however we have settled into a comfortable routine where he can relax because he knows I am on top of it, and I know he generally supports WHATEVER I think the kids need.

We all had the rabies series (this was prior to pandas, thank goodness) because we woke up one night and a bat was flying around in the hallway outside the kid's bedrooms (lovely!). I freaked out! Then my dh freaked out and killed the bat by stomping on it. Later we found that anyone who has been sleeping in a room with a know bat, is at risk. There apparently was a case in our area of the country where a toddler died from rabies, after spending the night in a room where they found a bat the next day, even though she had no visible marks. (Bats teeth are like pins). So, since the bat's skull was crushed, we ALL needed the rabies series!! EAMom- I think your dd is around the age of mine, did you do a tetanus booster or test titers?

Of course it is the Asian countries I am most interested in However this is years away.... Yes- EAmom- one seriously wants to be a vet. Believe it or not, our whole family has our rabies series- so she is already covered there (I guess I should get copies of that)- I guess only needs a booster upon a bite? Meningococcal- I am thinking I would like to have it done prior to college?

Kim (and anyone else who has infor for me) - you seem to have done so much research on the vacs- which I am envious of. I don't have the time or energy to do it right now, but wanted to see if you would give me a few thoughts. I have two pandas kids who now react to pretty much any immune challenge: strep, colds, virus, loose teeth, illness exposure. After what we have been through, I cannot sit and watch someone willingly inject them with something that is targeting their immune system- this is not even mentioning the ingredients in the vax. My kids, however, are 8 ant 11- so they are pretty fully vaccinated. HPV is out of the question for them, not doing it. But, there are three that I am left wondering about: 1. Tetanus. DD 11 is overdue (I need to test her titers). I imagine this can realistically wait and be given if there is a laceration that could have been contaminated with soil. If this happened- is there a tetanus booster that comes alone? 2. Meningococcal. Certainly meningitis is a rather rare, but scary and fast moving disease. However, the vaccination is pretty scary to me (as a pandas parent as well). Any thought on the risk/ benefit ratio, or the safety of the vaccination? I would not even consider this until college age. 3. Hep A, Typhoid and vacs needed for certain international travel. I have some long- term (after we recover from our pandas exependitures, and I go back to work) dreams of travel to China, and also volunteer vacations in Africa- with my kids. I know typically some vaccines are required (?) for this type of travel. Thanks!!

1TiredMama- Let me say first, that as a parent of TWO pandas children (my only two children) I see everything through pandas-colored glasses- so take what you want from this.... I STRONGLY suspect your daughter has had pandas since the age of three. Bipolar, depression, anxiety, screaming, IEP, school avoidance, running away, fear of looking fat and "lay-lay" all scream of a larger problem. Most of the parents on here have seen these symptoms in their pandas kids at some point. I can tell you that during an episode my kids have depression, anxiety, tantrums, anxiety, running away, and difficulty at bed time (including wanting to sleep with me- and I know that look in the eye you speak of when you try to leave them before they are ready). To me, these symptoms do not sound mild. Your daughter is on homebound education- that is not mild. IMHO, age 11 is too old for "lay-lay", for your daughter to dictate what you wear, and how long you lay with her, and laying with her in the morning and night. I have an 11 year old also (with pandas), and I know how these things can turn from a nice comforting tradition into an obsession. I have learned (though still have to remember) to be very careful about creating/ reinforcing these types of things, and rather do nice, special things on a more random, unpredictable basis. I do not know much about bipolar (hence we could have symptoms of that during exacerbation as well), but I do know that it is a relatively "new" diagnosis for children, and not everyone believes in it. I would strongly suggest getting both of your kids to a pandas specialist (and by that I mean one of maybe 4 doctors in the country- where do you live?). Along with that, I would find a psychologist qualified and experienced in CBT and exposure therapy for ocd. I have a suggestion for an intense outpatient program that we attended, pm me if you are interested. The good news is- that if this is mostly caused by pandas- you can expect improvement with a combination of medical treatment and therapy. It will not be easy, but they will be able to get better. I would suggest initiating medical treatment (if you can) first, and then following up with therapy to break these patterns- but yes- I would crack down on "lay-lay" by scaling it back in time, and "enhancements" (that was kinda cute). Good luck.

Just to agree with pow pow, ERP is great- but IMHO it is NOTHING without appropriate and aggressive medical treatment for pandas.

Nmama- While I do agree mostly with what you have said, I do want to chime in... I think it is very important that the goal for our kids is to live in a normal, well behaved, age appropriate way. Because of this, I think taking steps to avoid "triggers" is a very slippery slope (one that I know I have gone down) of accomodating, even sometimes in advance, their ocd. In our house, most tantrums come back in a direct or indirect way, to ocd. Accomodating ocd in any way, especially a strategic way- is really not a great idea. I don't necessarily think this is what you are talking about, and certainly anticipating a trigger, and coming up with solutions (with your child) that are not avoidance, before the trigger situation, is the best bet. I could discuss this all day

I am pretty sure that strep appears as a red ring around the anus, that is also uncomfortable. My dd had it once as a baby. Can you get her on clindamycin? This would be good news, in an odd sorta way, I think.

OK, so now I am going to add more. We have had explosive behavior come with pandas with both of my girls. Like pow pow said- it can be really, really hard. It can ruin the whole family dynamic, and really be tough on the other kids, and on a marraige. I am the first one to attribute EVERYTHING to pandas, and say that it is out of their control. However, I, in the past, have done way too much to accomodate my kids, and that has not helped the situation. This summer we did three weeks of intense therapy at USF for both girls, for ocd. Both had strep in April. One was NOT in a great place at the time- ocd and temper tantrums, and all around difficult behavior (much can be traced to the ocd). So, instead of working directly on the ocd with her, we worked on "compliance". Now, I want to tell you that the folks at USF get all the hard cases. What my dd did, which mortified me (trying to run away, temper tantrum on floor of their office, hitting me)- did not rattle them in the least. So- I know some parents here may say this won't work- but I can tell you that they know their stuff. This method moved my dd from completely difficult, to fully compliant in a few weeks. I will say, she was not at her worst when we were there, but she was close. Basically what we learned (and DUH- I sorta felt like an incompetent parent- but after being ravaged by pandas our family really needed this help to get back on track) is a time out program. Very similar to what you probably used when they were two and three. I will try to write it in steps, like we did. First- set up some rules. Sit down and tell all of your kids that things are changing, and be specific about what will be expected from them. Describe the time out program. So it goes like this. IF/ when your child misbehaves, they are give ONE warning to stop the behavior (any physical aggression does NOT get a warning- goes straight to the time out). If the behavior does not stop, they are given a time out. A time out should be about 4 minutes. It should be in a place where they cannot see TV, and are slightly away from the center of the home, but within view/hearing of you. This place should be set up beforehand, and shouldn't change unless you are not at your home. We use the steps in our hall (right outside the family rm/kitchen). Now of course, you say- there is no way my kid is going to the time out- right? Well that was our issue too- but here is the deal. Until they complete their time out, they get nothing: no food, no one speaks to them, no tv, NOTHING. You need to be tough, and you may need to be hardcore- but there is no flexibility here. The psych reminded us that a parent is only required to give a child a warm, safe place, send them to school, and give them three meals (not snacks and goodies)- EVERYTHING else is negotiable. Now, for my kids, they HATE that no one will talk to them, so even at their worst, within 15 minutes they go to their time out. We never did this, but at the end of their time out, if warranted, you may give them a punishment. It should be short term and fit the crime (maybe no TV the rest of the day?)- it should not be a long drawn out punishment. There is very little need for discussion about what they did- because they KNOW what is right and wrong. This may be very hard for the first week or two. You may consider paring down your schedule, and if you have multiple kids, having someone available to take the others to their activities. But- it is worth it to get a reasonable amount of "compliance". We have used it on our older dd too (age 11), it works beautifully for both. To be honest, after the initial week- we have barely had to use it. When our kids are in an episode, I know they are completely freaked out and panicked. But I think we need to start to give them control back, and to expect it. I know this sounds hard- but sometimes they need a little "tough love". We also found a "tough love" approach is what worked best for their ocd. I know I have two very "normal" kids, then pandas hits, and they are riddled with ocd and afraid of their shadow. They are panicked and are lashing out. I have the natural tendency to want to make everything better, and end up accomodating too much, and everything becomes a mess. Using this tougher approach has been major in getting our family back on track. It also prevents a more unified front for us parents, we don't need to get engaged in any tantrums- we have a script and we stick to it. There is no arguing needed. I hope this makes sense to you. I certainly would suggest considering a therapist to work with you and your dh on a behavoir modification program. It can be hard at first, but in the end it makes their life much happier.

vermontmoms- I am sorry you are dealing with this. Smarty has recommended a book, The Explosive Child, which has some really good techniques. The one that she told me about, and works great to head off issues, is the repeating technique. So this is basically when your child is starting to ramp up about anything, you just repeat what he is saying back to him, calmly. This lets him know you have heard him, but you do not get engaged. It has worked really well for us, at times. It also makes life easy when, as a parent, you have somewhat of a set script. Here is an example. Lets say my daughter is starting to get mad that her sister moved something of hers: Daughter- Julia moved my art set! Me- Julia moved your art set? Daughter - YES! WHY DOES SHE ALWAYS TOUCH MY STUFF? I WANT MY ART SET TO STAY WHERE I PUT IT! Me- She always touches your stuff? Daughter- YES! Me- You would like it to stay where you put it? Daughter- yes. This can go on and on (and on and on and on). But I have seen it really work to diffuse situations, not all of them, but some. Try it (it will even work with your spouse!!)

If you google "Urinary control, basal ganglia" some good websites regarding urinary urgency in Parkinson's will come up. You may find some interesting tidbits such as: the exact mechanism that is causing the problem, tips to help with management of the problem and medication suggestions. I would still hope for an eventual complete resolution of this issue in time. My kids have had some issues that seem to linger long after they are mostly recovered from a pandas episode, but most have gone away in time. I don't know if your son had ocd, but I would also look to be sure there is not an ocd component that is reinforcing this issue. I only mention this because for one of my daughters, this physical issue became very intertwined with ocd, and it was the hardest issue to overcome, and does return with exacerbation. For my other daughter, it did not involve ocd, only the physical, and she was able to explain it more clearly to me. Good luck.

Lilly- I would contact Dr Fallon for a referral for your child.