Very worried.. could this be start of PANDAS in non-PANDAS dd?

[EAMom]

I would definitely do the throat culture b-4 worrying about getting titers...since poking little kids to get blood can be traumatic (more traumatic than throat cultures in general).

 

What antibiotic was your dd on 6-8 weeks ago...also what dose, how often, how long, and how much does she weigh?

Edited April 26, 2010 by EAMom

[monarchcat]

Just back from the ped. He did a swab and will send it to be cultured, rather than doing a rapid or 24 hour DNA, which is what they usually do. And he agreed to 3 weeks of azith at 200 mg/day (she's 53 lbs). he said his concern would be, of course, that we are treating nothing, but if I felt comfortable with that, then he would prescribe it. And to watch for intestinal trouble. I've been giving her about 30 billion cfus of probiotics from Custom Probiotics already over the past week or so, so that should help.

 

I feel like at least we are taking action. If the strep didn't clear (she was on amox for 10 days for the original strep), then hopefully this will get it and I just hope we are not screwed for the future.

 

Time will tell, I guess.

[Stephanie2]

I haven't read the other responses, but I have 2 boys with PANDAS and I remembeer thinking "can this really be happening" when the neuro first suggested that my 18 month old may have PANDAS, after I had recently found out that my 4 yo (at the time) had pandas. I was dumbfounded and I was not convinced until it happened several times. Needless to say, my 2 year old definitley has pandas and now I have been forced to face it and treat it.

 

I am so sorry you are going through this, but yes I do think that your 4 year old has pandas based on what you described (very similar to my 5 year old's constant questions over and over). I would nail it with abx AND steroids and maybe you will not have to go the route of IVIG. I did not do that with my 2 yo and now I am left with a big mess on my hands, and it hasn't even been a year since his first exacerbation. Each one has been worse and now I believe he is reacting to other microbes, not just strep. BTW, I believe my neices and my cousin's little boy all have pandas as well, and my brother had kawasaki as a child. It seems to be highly genetic.

 

Stephanie

DS9 has PANDAS and probably has had it since age 5. My daughter, who will be 4 in August has seemed perfectly fine up until now. A couple weeks ago she dropped an m&m on the floor and picked it up and ate it. No big deal, but my husband said something along the lines of "That's fine, but generally you don't want to eat things that you drop on the floor or the ground." Very mellow, not a big deal. Since then though I will give her something and she will ask me a few times, "Did I drop this?" Even when she knows it's been in her hand the whole time. She's very smart and very verbal, so it's not a comprehension problem. She KNOWS she didn't drop it, but will ask anyway. My husband says she will ask him, "is this my drink?" quite a lot when they are out somewhere (and even at home, though she's only done it with me once or twice). Even when the drink hasn't left her hand.

 

Tonight was a big issue, though, and here's why I'm worried: We had a babysitter tonight, someone who babysits frequently and my daughter adores (she's a preschool teacher). While the sitter was cleaning up the kitchen after dinner, my daughter was sitting at the table having an ice cream sandwich. She asked the sitter, "Did I drop this?" Of course the sitter has no idea that there is any history to that, so she says, "I don't know, did you?" my daughter BURST into wild tears and kept asking over and over, "Did I drop this?". The sitter said, "Honey, no you didn't drop it, it's fine.. see? It's there in your hand, you didn't drop it" But my daughter asked over and over and over. At one point the sitter said, "Can you tell me why you are asking me over and over?" and my daughter just said, "I don't know" and then asked again. She ended up falling asleep crying because she couldn't calm down.

 

I'm very worried that this particular incident in particular seems VERY OCDish. Then again, kids get stuck on weird stuff and until tonight I had thought that it was just age appropriate. Tonight seemed different and based on how the sitter told it, she just seemed really stuck. What seemed to make it turn bad was the fact that the sitter originally (unknowingly) said, "I don't know".

 

Here's the kicker.. she had strep about 6 weeks ago.

 

Is this a first PANDAS episode?? What do I do?? Should I see if I can convince our ped (who already thinks I'm nuts, but humors me with abx for my son based on my consult w/ Dr. L, etc.) to prescribe maybe a month of abx for my daughter? If this is a first PANDAS episode, can we maybe nip it in the bud? If so, which antibiotic and for how long? I can check titers, but I know that titers mean diddly squat.

 

What do you guys think?

[monarchcat]

Just a little update - Her culture came back positive for strep. It alllll makes sense now, unfortunately. We'll see what happens with the azith. No real change yet, but she just took her third dose a few minutes ago. Had a big incident in the yard this morning when a little friend of hers got a bug (little inch worm) in his mouth.. he wasn't upset and just spit it out, but she then asked me 50 times over the next 10 minutes if SHE had a inch worm in her mouth (while sticking out her tongue for me to look at). She would get very anxious and upset if I wouldn't answer. I told her a couple times that I would not answer anymore and that she already knew the answer. She didn't stop asking until about 10 minutes after we were back in the house. Ugh.

 

My son never presented with overt OCD like this. Guess I'm going to have to learn the ins and outs of dealing with OCD! I'm hoping the azith will do the trick, and I'm going to do some ibuprofen per Vickie's suggestion, too. I don't know about steroids at this point.. I just don't know. I didn't like the results of my son on steroids so it makes me nervous.

[thereishope]

You know what...you should be happy she actually stopped asking after 10 minutes. That's good! The idea is over time...the time she asks will shorten and hopefully lead to not asking thsoe reassurance questions.

 

How was your son on steroids? Rages? Some on here have said their child reacted very well the first time they tried steroids, but not as well in subsequent steroid bursts. So, if you feel she doesn't need it, save it.

[monarchcat]

You know what...you should be happy she actually stopped asking after 10 minutes. That's good! The idea is over time...the time she asks will shorten and hopefully lead to not asking thsoe reassurance questions.

 

How was your son on steroids? Rages? Some on here have said their child reacted very well the first time they tried steroids, but not as well in subsequent steroid bursts. So, if you feel she doesn't need it, save it.

 

My son was so-so on steroids. We think we saw some improvement in PANDASy irritability, etc, but there was definitely a new kind of anger caused by the steroids. There was no reduction in tics, and in fact, he had his first ever vocal about a month after stopping the pred. He ate like a starving truck driver and gained a lot of weight that he hasn't really been able to drop. All in all, it wasn't the miracle that it has been for some, but he's had this for a long time. I think at this point I wouldn't do steroids with my daughter unless she had a more severe exacerbation.

[EAMom]

Don't forget to change toothbrushes and toothpaste.

 

Do you only have the 2 kids? You might get the grownups cultured just to be safe.

 

Out of curiousity, what antibiotic was your dd on the first time (6 weeks ago)?