How do PANDAS parents protect kids from exposure

[Kbossman1]

Don't want to make this too long, but here goes; I have a neighbor who also happens to be a very good friend. I've been keeping her daughter ( 7yrs old, same age as my pandas dd) since she was 15 months old. Currently I watch her after school everyday. Several times during our pandas journey....I have told her parents to have her tested for strep b/c my children had it and so did some other kids that I watch. Once I called them to say... "look, I have 7 kids in my house, and my 4 plus the other 2 (sibblings) have all tested positive this week, I know your child doesn't have symptoms, but please take her in".....then she tested positive. They don't understand pandas....I think they must think that I'm crazy because they rarely take their children to the doctor and I'm there every other day. So dd (pandas) was doing SO well after Christmas....and all of the sudden this week we started to backslide. I was thinking maybe she is being exposed to strep, either someone at home or at school....why was our improvement going the other direction so quickly? This Monday morning it hit me....it was this child. They were out of town the day we started the Kelflex....and during the 2 weeks when we had made so much improvement. Then they returned on Saturday the 1st, and dd started backsliding on Sunday evening....after having a sleep over at their house on Saturday. (first sleep over in a LONG time too)

So....I'm thinking this all to myself Monday morning and then that afternoon this child's mom calls to ask me how all of my kids are doing b/c her dd has a headache and then threw up at school. I tell her we're fine, but headache and vomiting could be sign of strep if she doesn't have any other symptoms....she says she will have the dr test her. Mom calls me to say that the dr says definately a throat infection....but her strep test was negative, so they didn't give her any antibiotics....they want to wait to see if the culture grows.

So here I am...thinking WOW...I found the reason that we stopped progressing....it was exposure, and it seems to be confirmed to me now....but what do I do if this child isn't on abx to get rid of it. BTW, I have to tell you that we haven't been around this child in 2 days....and the pandas symptoms are improving already....I'm pretty sure this is what was going on. What would you do....do I call the mom and tell her that I'm not going to keep her dd after school until they put her on abx? Do I experiment, see what happens?

I already hesitate to tell this friend much about pandas b/c she looks at me like I'm crazy......which already bothers me, so I'm pretty sure it will make her angry....should I care??? Sorry, and I know that there are other members out there with much bigger problems than this.....but I thought this would be the best place, for the best advice....thanks!

[peglem]

It is very common (and often required) for daycares and licensed baby sitters to require parents to keep their kids out when they are ill, until they are cleared by a doctor, or symptom free or have been on abx for 48 hours. I mean, even if it is a virus- you don't want kids getting sick, so I think regardless of your child's PANDAS, its completely reasonable to request that she makes other arrangements until you can be sure her child is not contagious. It may place her in a bind- but, parents are faced with how to care for sick children and deal with work schedules all the time- and its their responsibility to figure out how to do that. Your 1st responsibility is to take care of your child and you simply cannot afford to have her slide back into a nasty PANDAS episode. I hope the other parent will be understanding- but your priority has to be your child's health, even if she's not understanding. Sucks to be in that situation, though!

[Phasmid]

This is a tough one. My son hates me because of my lack of tact in dealing with this. First, if he talks to a friend on the phone about him coming over to our house, I yell, "Ask him if he's been sick past few days or feels like he's sick now. If he's not sick or hasn't been, he can come over." Before we moved, we often had kids coming in and out like through a revolving door! When I would hear the doorbell or a knock, I met the kid at the door, talked to him while I observed for any signs, then invited him in after I asked, "Are you now, have you been, do you think you could be sick in the near future." I always had a big sense of humor about it, and after grilling the kid I let him in. My son would always say, "what is wrong with you!?" If the kid WAS sick now or recently, I just said, "Sorry, can't come in. Come back in a day or so." I was NOT well liked among his friends!

[thereishope]

No matter how you say it or explain it, someone who hasn't been directly affected by PANDAS will never understand why we need to protect our kids from strep, how children can be asymptomatic, how tests have failure rates. When my neighbor's son had impetigo, she asked if the sibling could come over. I kept making excuses and finally I just called her and I reminded her that strep is my child's trigger. I've fought hard to help him recover and I cannot take any chances her well child may have contracted impetigo and have simply not showed symptoms yet.I explained how I couldn't discuss in front of her child since I don't want mine to be labelled as different nor do I want the well sibling to be mad at the sick sibling. I said we could not be around them for a couple weeks.

 

I would definitely tell her the child needs to stay home until she gets the culture results and the child is feeling better. At a minimum, 48-72 hours after throwing up and post any fever. Also, if she keeps the child home from school for being ill, she cannot stay with you.Even though it's hard and you don't want to hurt feelings, your own child's well being is themost important thing.

[kferricks]

It is very common (and often required) for daycares and licensed baby sitters to require parents to keep their kids out when they are ill, until they are cleared by a doctor, or symptom free or have been on abx for 48 hours. I mean, even if it is a virus- you don't want kids getting sick, so I think regardless of your child's PANDAS, its completely reasonable to request that she makes other arrangements until you can be sure her child is not contagious. It may place her in a bind- but, parents are faced with how to care for sick children and deal with work schedules all the time- and its their responsibility to figure out how to do that. Your 1st responsibility is to take care of your child and you simply cannot afford to have her slide back into a nasty PANDAS episode. I hope the other parent will be understanding- but your priority has to be your child's health, even if she's not understanding. Sucks to be in that situation, though!

 

Exactly!

[Kbossman1]

Well, I may not have to be the "mean" person afterall.....the mom called this morning to say that now the child is running a fever. Sounds like she will be going back to the dr....and for our sake...I really hope they figure it out, and put her on abx. At least I feel better knowing that dd will not be exposed "for now"....Thanks for the advice, I know what I "have" to do, but it's helps to hear other people agree. Hope we can survive this thing and still have a few friends left when it's all over....

[LNN]

Not sure how comfortable you are sharing info with this mom, but one thing I've done with people who start to give you "that look" like three heads are growing out of your ears, is to say "my son has an autoimmune disease that's similar to rheumatic fever. In RF, if the child is exposed to strep, his body mistakenly attacks his own heart". I wait for their eyes to grow large and then I proceed "my son's disease is similar, except his body attacks his own brain. So you can understand how we try to keep him away from kids who might be sick." They usually nod a lot and then get sympathetic.

 

I don't go into neuropsych explanations or try to explain how the behaviors drain the whole family. I just leave them with an image of heart and brain damage. It isn't "accurate" and doesn't do much to expand understanding, but it does get outsiders to take the disease seriously and puts more responsibility on them to do their part to protect my son.

[Megs_Mom]

Not sure how comfortable you are sharing info with this mom, but one thing I've done with people who start to give you "that look" like three heads are growing out of your ears, is to say "my son has an autoimmune disease that's similar to rheumatic fever. In RF, if the child is exposed to strep, his body mistakenly attacks his own heart". I wait for their eyes to grow large and then I proceed "my son's disease is similar, except his body attacks his own brain. So you can understand how we try to keep him away from kids who might be sick." They usually nod a lot and then get sympathetic.

 

I don't go into neuropsych explanations or try to explain how the behaviors drain the whole family. I just leave them with an image of heart and brain damage. It isn't "accurate" and doesn't do much to expand understanding, but it does get outsiders to take the disease seriously and puts more responsibility on them to do their part to protect my son.

 

That is exactly what we do! I find that short & dramatic is better for a casual conversation. Sometimes they come back for more info later.