dasu

my daughter has (had) extreme urinary frequency with PANDAS, which went away with clindamycin. the frequency was so high that we brought along one of those toddler potty training toilets in the back of the car. you might want to do something similar, otherwise road trips get extremely slow...

My daughters doctor gave us a printout on PANDAS after suspecting it. The information it contained was wrong, but at least the doctor set us out to find a good specialist. You are the parent, you know your kids and know best what's wrong. From your description she is showing OCD, emotional lability, loss of appetite and regression. I've seen the same thing in our PANDAS kids. And what are the options? Psych meds to mask problems or actual treatment? One start in the Moleculera panel, but there are also doctors who try abx or steroids and if there are positive effects, you know you are on to something.

I have two kids with Dr L, and we have seen massive improvement with my daughter, while my son is lagging. While she is quite knowledgeable one common complaint was that she was only responsive in the context of an office visit. But things are changing for the better. Her office appears to have gone through a staffing change at the end of 2013, they have hired some more supportive and helpful assistants and she has hired a PA. She will now answer emails now. There is also differences in protocol followed between PANDAS doctors. Dr L seems to be more focused on strep and initial use of antibiotics followed by prophylactic penecillin, steroids bursts and IVIG (although we have yet to get to that last treatment.) You had second question on response time and that appears to be specific to the child. My daughter had an abrupt change 4 days into clindamycin - she slept through the night and her appetite picked up dramatically, and after another couple weeks more PANDAS symptoms subsided. My son showed gradual improvement, followed by regression, which we are now all suffering through.

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interesting. ill add that to the order list. how long was the "effect did not last"? going dairy free is going to take some prep. yogert, kefir, cheese and milk are hot items in this household.

interesting. im wondering how this complements or counteracts risperdone.

As someone mentioned keeping them busy is critical. There are moments where they can have free play but the trick is sensing when free play is degrading into craziness early enough to get them redirected into some task/job/more engaging activity.

they had a flare starting in december, and got sick a couple times over the winter. our primary care refused antibiotics until finally about a month ago we went to another place which prescribed an antibiotic. went to Dr L and now they are both on prophylactic penicillin. as far as diet they are on gluten free - my daughter was allergic to wheat but appears to be over that, although the whole family has kept at the gluten free diet. we tried ibuprofen for a week which helped but we dont want to damage their bodies with continued use. they take curcumin, quercetin, cod liver oil and as of three days ago, a probiotic (with strep therm, which i have heard is bad but it appears they are getting better) they took some OLE back when they were sick which helped, but we stopped. i just placed an order for reishi mushroom powder, biacilin, passion flower, and astagalus. i dont have much knowledge on what to look for and application. if we start them altogether im not sure what causes what. questions questions.... good suggestion regarding books on tape. thanks. EDIT: i just had the thought that by writing about their symptoms i am making my kids sound bad. i dont think that at all. in fact they can be so kind and thoughtful at times, even in a flare. our neighbor just gave birth to a baby girl and they wrote up cards and picked flowers from the yard ti give to her, all unprompted by parents. they give me multiple cards a day, with drawings and "i love you" written all over. they love to hug and kiss.

My son and daughter ages 6 and 5 both have PANDAS. One of the issues we observed long before a PANDAS diagnosis or more evident symptoms was extreme hyperactivity and uncontrollable silliness, odd body motions, potty talk, and even morbid talk. This gets bounced around back and forth between the two making it even worse (isn't that a tic?). Car trips can be unbearable, I thougt I was going to lose my mind on the last trip to Dr L, a whopping 100 minute trip. They cannot be out in public either. Once they got to throwing around food at the grocery store. We used to try discipline but they are simply not able to control themselves. Anyways both are in the middle of a bad flare and I am at my wits end. Is there anything we can give them to calm them? Would food allergies or maybe a drop or rise in blood sugar be exacerbating this issue? It seems to come in flares and suddenly.

What is the website for the triple pill?

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I do not have a good understanding of the science behind PANS, but my synpopsis of her talk was that PANS was due to an immune system (microglia) that wont ramp down after fighting an infection. She uses pharmaceuticals to treat infections and mental side effects but mainly concentrates on herbs for long term treatment. Specifically, she mentioned reishi mushrooms, astragalus, curcumin, biacilin, olive leaf extract, luteolin and passion flower. I probably missed some, but I am going to read up on each.

I dont understand - how do you get ABX so quickly? Does your PANDAS Dr prescribe? Or have you found a supportive primary care physician? The last flare the kids went through was a slow rolling disaster. The kids got a couple different bugs, and depsite three trips to the doctor's office nothing was given. About a month in the flare started and is continuing today. It would be nice to be more proactive...

im in central va, but would consider driving up. (hopefully it will be on the outskirts of DC)

i always remember the nurse asking us to sign the vaccine form when my son was 1 day old for an STD. since when did 1 day old babies start having casual sex? it seems obvious that vaccines have brought a lot of good to the world. the side effects are not well known and studies poorly funded by the big-pharma big-government complex. ended up doing the minimal vaccine route for threats that are big and common, all after age 2: MMR + tetanus. it would have been nice to space vaccines in time, but they are all bundled now.

Understood, at least as well as a family who all have been sick for a month can understand. Every child seems to have unique symptoms and when the kids go through flares its a compounding effect. Quite stressful. We are currently trying herbals, quercetin and curcumin. Motrin works well as mentioned. Keeping stress off of them (car trips, leaving the house, school...basically normal life) appears to help reduce the tics and rages.

My son has issues with impulse control, hyperactivity, anger (directed at himself and others), morbid thoughts and speech, and tics (spitting, picking at body, speech). The symptoms have been cyclical in severity but have increased through time and through periods where he was sick. My daughter also has PANDAS and the combination of the two can be difficult to handle, particularly since they both got sick over winter. We live in Madison. We took my daughter to a psychiatrist in Cville when she had her first major episode. He was also fascinated, but thankfully wanted us to see a PANDAS specialist. I am also thankful that the pediatrician we used suggested that this might be PANDAS, although she gave us documentation stating that PANDAS would resolve itself. I am still glad she suggested it, because it motivated us to to some research on the internet and then schedule an appointment with Dr L. We are now looking for a more supportive local physician as they are slow to act etc.

We have done a GF and soy free diet, continuing to eat meat. Going CF seems too difficult right now. We have tried to cut sugar too. I have learned this with our family: dont try to do too many "mock" foods, substituting the real thing for some acceptable substitute. Substitution ends up frustrating us, as its a defensive strategy. It never tastes as good as the real thing and ends up reminding us of what we left behind. Often it isnt good period. Instead we try to make foods and dishes that fit the ingredients. To date that means more asian and mexican themed meals. Summer is easier with fresh veggetables from the garden. I checked out your blog and I think we will try the crunchy chickpeas. Kids love crunchy snacks and this is a good and healthy addition to the ubiquitous corn chip.

My son and daughter both have PANDAS. We are looking for an alternate opinion/approach from Dr L. What is the consensus on doctors in Virginia? We live in Charlottesville but can travel some.

strep was the trigger for my daughter, and rifampin and clindamycin cleared that initial flare. i dont know if strep is the trigger for my son. he has tested negative lately, but tested postive when my daughter had her initial outbreak, and a couple of times previously (and was treated). is there a test for what is causing the antibodies? we have tried motrin 2x day, quercetin and curcumin. this latest flare has been the worst, and as we are now seeing harmful behavior decided to try resperdal at least for now, until a more natural alternative is identified or he is over the flare. thanks for the tip on Dr McCabe. i will contact the office. thanks for clearing up the misconception on 23andme. thats good to know, so now we can order the test.

I am not sure who else to go see in VA. Long car trips are difficult and devolve into mayhem. Considering a LLMD now though. He has only been on Risperdal for a couple days, perhaps he needs more time? Didnt 23andMe stop doing health testing?

PANDAS does take a heavy toll on parents. I think my sister also has a PANDAS child but he is 19 now - she just recently noticed that all of his episodes were after some sickness. Her situation scares me because her son has had crazy ups and downs, between violence and depression...and I dont want to see that with my son. The effects of PANS have been wearing us out for a couple years. We thought our kids were just different or that we were doing something wrong. Everything has been more difficult. This ends up separating you from other adults, just like it separates the kids. There are things you cannot do or just plain feel to tired to do, just like there are many things the kids cannot do. Then there is the constant stress both in and out of flares. Anything can happen, you have to be prepared. The diagnosis provides some relief - a name! - but then more stuff to do and stress over - so many things to navigate, lulu your PTSD comment was very a propos. But I have seen things improve with my daughter and hence with her parents too I have learned not to dwell on how bad it is but on what to do. Its OK to grieve but at some point we need to turn to action. That is not just action for what we can do for our kids but sometimes what we can do for ourselves as caregivers - take the luxury of doing things that are fun and restorative.

That is fascinating. I need to find a LLMD.

Interesting. We are looking at homes now and this is one reason I am scared to buy an old home. Our county's primary school now has a recognized mold problem and elected to build new sports fields over fixing it.

Did you find a black mold source in your home? Were you able to remove the mold issue, and if so did you see any improvement?