kimballot

We use melatonin. My ds is sensitive - for several years only took .75. Now he 13 and takes 1.5 most nights / 3.0 when he taking prednisone. It really helps to give him a calm feeling to fall asleep without drugging him to sleep.

YIPPEEE!! LET'S GET VOTING!

Happy birthday to both of you!

ugh! I did not even think about a trigger - was hoping it would be short lived so we can get back to meds. So far looks like we are on the upswing... several hours with no activity! :]

Well... at least I read one good thing today (before she started hitting her head!). You deserved a good day!

I know.... the stories about the kids who are cured are lovely, but for many of us it will be sheer management. Luckily, PANDAS kids have smart, resourceful parents who do not give up. What can you do this weekend that he (and you) might enjoy together? Rent a movie? an ice cream cone? Something to not let the downward spiral take over while you figure out what to do next. We are with you.

Ok - we all need a break. I've been reading all the posts of people having bad days to day and then my son called me to pick him up from school - did not want to stay after for myachi club (the One actvity he really loves). I picked him up and he said he did not feel well... yup - barely throught he door and he was vomiting (thankfully there was an empty pac sun bag in the back hall)... The illness progressed to diarrhea and more vomitting. I am thinking stomach virus, though he is on day 5 of a 17 day course of prednisone and 20 day course of augmentin. What is up?

Peg - I am waiting to hear how it went today .... how was the bus this morning? Is this an exacerbation or are you moving in the right direction?

I was following your post and wondered how things are going after the ER. I hope you are home with some answers. Best wishes -

Thank you for posting! It is so helpful to hear positive stories!

Thanks for telling us about this. I've had people ask me if my son has had this done and I was not really sure what it was. Please post and let us know the outcome!

Thank you so much for sharing that with me. Clearly I am new to the forum and did not know your story, so it was so kind of you to share that. I am sure you've been through everything with behavior and it is really neat that you saw changes with abx., and I learned (and always do learn ) so much from your post. You started this thread saying "face it - it is an exacerbation". Are you still feeling that way? It sounds like you are not and you are trying to sort out if this could just be good old fashioned development. You are SOO correct that the triggers in PANDAS are internal! (try telling that to some of the specialists along the way who have accused me of causing all of my son's problems).... I've come to the conclusion that with PANDAS we can either avoid them by (a) not introducing things that we know will trigger the behaviors (which- of course - puts the kid in control and leads to lots of manipulation) or by ( medicating the child specifically for behavior, or by ©removing the PANDAS. Really - ABC still applies. It is just a question of expanding our concept of A. For example - ABC applies with sensory, but most people don't think to look for sensory triggers (though it sounds like you have done that quite nicely) ABC applies with OCD - (such as insisting the child does something and odd number of times) ABC applies with allergies (exposure to trees for example) ABC applies to PANDAS (in my case, H1N1 exposure this year) [Has anyone written anything on behavior management in PANDAS?? (just curious)] You are right that fight or flight does not just happen with separation anxiety... but if your PANDAS symptoms are reduced then maybe it is time to go back to ABC a little bit. If she is doing well in school- the other environment she spends lots of time in- then maybe it IS an ABC event with an external A. Maybe it is separation anxiety. I don't know if it separation anxiety. You seem to be heading down a path that makes sense. I'd still chart it for a few days and see. You had a lovely day yesterday and THAT is something to celebrate!

Wow! It sounds like you have a wonderful school program! Perhaps it is separation anxiety. It does not sound like they are seeing these issues in school - correct? And... when you talk about typical separation anxiety ... infants can be rather violent with separation anxiety too. Usually in infants we see it when they start crawling or walking - even if the crawling or walking is delayed. Something about realizing that you have the capacity to be separated from your caregiver. Perhaps your daughter is experiencing that now... if the PANDAS cloud is lifting. If the behaviors are limited to one environment (home), then it could be a sensory issue or a psychological issue at home. If they are limited to an event (separation for school, separation for bed), then you have your answer. Are you charting the behaviors carefully and looking to see what happened just before the behavior and also how you responded to it? This will help you to figure out what is causing it, what is reinforcing it to happen again, and will also help you to deal with it once you figure it out. Is there a behavior specialist you could talk to at school? Maybe they can help you to sort it out.

Hi Peg - I am hearing so much sensory in your description - but I come from a sensory background so I tend to see things that way. Still, I am hearing banging her head, biting, wrapping her legs around you, looking for hugs, etc. It all looks like searching for some deep pressure, which is calming to the central nervous system. I know she just finished the low dose IVIG and that is very likely the main problem - and quite honestly I have no experience with that. But... I am wondering if there could be something else going on also. Do you have allergies well controlled? Is there a yeast issue or mold issue? Is she taking antihistimines? I've seen these trigger similar sensory behaviors. Do you work with an OT or is there one at school you could consult with? Perhaps some deep pressure - weighted vest, a brushing program, weighted blankets, etc. some type of sensory diet where she wakes up in the morning and starts her day with lots of deep pressure and muscle resistance - perhaps that could help to take the edge off until the next IVIG.

My son's stuffed animals, pillows, and particular blanket placement were always for "protection". Somewhere along the way I stopped letting him climb into bed with us (even though I let my older daughter do it if she had a bad dream). Instead - I told him to call me and I would come to him. It was not easy, but at least I had a little more control and he was in his bed. When he had a bad exacerbation at age 10 I had to lay down with him every night with his lights on and all the stuffed animals around him. Eventually, I was able to move to the foot of the bed and read a book while he fell asleep - then to the desk to do work while he fell asleep with only the desk light on... then I'd sit in the hall and do work.. you know the drill. I think we did sticker charts or kept points ... no.. it was tickets. A big roll of blue tickets from the dollar store. He got tickets 3 tickets every night and he had to give one up when he got out of bed. The tickets somehow added up to special treats or a trip to the dollar store or something... Somehow it all clicked eventually. About a 1 1/2 years ago I discovered melatonin and that has been a huge help in the sleep preparation battle. If it is any consolation, he is 13 now and, though he still asks me to lay down with him for a few minutes when he is having an exacerbation, the stuffed animals are all tucked away in the attic and I did not find any garbage the last couple spring cleanings!

Does Coleen's oscillococcinum treatment (found int he H1N1 thread below) fit with the antivirals you were discussing? http://www.latitudes.org/forums/index.php?...art=#entry65000

Thank you so much for posting. It continually amazes me that other families were having experience that were similar to mine when I felt we were the only ones. It is so good to hear others stories - especially success stories. I wish you continued health and well being. I am sure you will all be on PANDAS alert and will handle things quickly if they arise. Regarding the hospital that did not respond - You sound like a private person, but you may want to consider sharing your story with the administration of the hospital. Your story alone may not make a difference, but if everyone told their story it might lead to some changes in protocol.

I am fortunate to work a flexible schedule, but it is still a full time job. I am able to be home most days after school (luckily, that is 4:00 is now that kids are older - it used to be 2:30!), to make sure all homework has come home. Then I cook dinner and try to do a little housework (when I am not distracted by this forum ) Then dinner at 6 or so - homework at 7, plus driving to activities. Try to finish everything up by 9:30 for medicine, showers and bed. Then I pull out my laptop and try to get a few more hours in. Fortunately, I've never required a great deal of sleep! I've also always tried to schedule my day so that I work late on Fridays - that way my husband or mother can handle the kids in a relaxed way, since there is no homework or tests the next day. This also allows me to take 1/2 day off during the week if I need to schedule MD appointments. Let us know what you come up with!

Hoarding has been an issue for us in the past. My son had a great deal of difficulty discarding objects (even garbage off the street) when he was younger. The things he hoarded in his room were tied in with rituals - like sleeping with stuffed animals all in a certain location at night to protect him. (I'm not talking about 3 or 4 stuffed animals - I limited him to 30 and made him keep the rest in bins in his room and even at that it was usually up to 50 when I washed his sheets each week). Does your son spend time in his room alone - perhaps playing in the closet? I am sure these items have a special purpose to him and I would ask about it. There is likely a ritual or fantasy attached to them.

Thanks for the update, Vickie!

We are working Dr. B. My son has never had a positive throat culture or elevated ASO, but has had severe chronic sinusitis. Dr. B understands this and realizes that there are many ways that PANDAS can be triggered. So far he has been very good to work with.

Colleen - thanks for the info on oscillococcinum. I was not aware of this - but it looks like something I should keep on hand. Thanks!

Yes - I can see how that could nag at you. I have real worries about vaccinating when my kids are sick, and you had that false reassurance of a false negative rapid strep. I guess the bottom line is that H1N1 was a bear for our kids (no pun intended) no matter how you look at it. I wish we had a better way to know which kids will react to vaccines in a negative way so that we can be sure they don't get vaccines but kids who have immune systems that can handle it do get vaccinated (I am thinking of the one-time vaccinations more than the annual flu vaccine).

I am wondering what people have seen after a vaccination. My son has had PANDAS since he was an infant and it is clearly related to his sinusitis - which he has had since I brought him home from the hospital. If he had an exacerbation after a vaccine, it was hidden amongst all the other sinus-related exacerbations. I've never been keen on the flu shot or other annual vaccines, but I am wondering what it would be like to NOT have my kids vaccinated for the major illnesses. I've worked with kids with meningitis who've lost limbs and I've worked with kids with polio who can no longer walk. It is not pleasant. I have friends who survived the polio epidemics and they talk about not being able to be out in public or around other children during the summer - no swimming in pools (read Jan Nichol's book "Twin Voices") Now that I know my son is immunodeficient, he may not be vaccinated anymore - I'll have to see what the immunologist says. That makes me scared too. I wish we had more research to understand this better.

Brandy - you really should not have so much fun in the Fall!