Positive Throat Culture - Thank heaven for a good ped!

[airial95]

So I posted the other day a question about a teeth chattering tic and my son suddenly chewing on his hands all the time. It started last weekend, and it seemed odd. We didn't have any other issues though - and he even went to a birthday party on Sunday with a ton of kids (many of whom he didn't know) and was polite, well behaved and had a ball. He even was outgoing and introduced himself to some other kids. He was more like my little boy than he had been in a while, it was great. We had a brief meltdown on the way home - but what 3 year old doesn't do that after leaving a party where they were stimulated out to the max. No biggie.

 

Earlier this week, however, I noticed him hopping strangely from tile to tile in the kitchen. His mouth grimace tic was showing up again - but not severe, and the new teeth chatter and chewing fingers were still around. I thought -hmmmm - this is odd, but kids hop on squares all the time - my non PANDAS daughter does it from time to time pretending to play hopscotch - but I'll keep an eye out.

 

He came home from school 3 times this week having had a pee pee accident at school, and he wet the bed 3 times this week. He's just over 3, so it's not totally unusual, but for him, this many accidents is totally not normal. Hmmm...maybe??

 

Yesterday, he was hopping from tile to tile again, this time stopping on each one to clap 3 times. This was definately not normal - one of his fixations is on the number 3 - it definately got our attention.

 

But to this point - we've had no major behavior changes - and massive violent rages are our number one symptom normally.

 

Last night, in the 45 minutes before bed time he went to the bathroom 5 times - totally not normal - and he STILL wet the bed last night. At that point, my husband and I agree - we need to get him in and get him swabbed.

 

I took him in this afternoon - and I was second guessing myself all day. I even felt a bit silly telling the nurse that we were there because he's been hopping and clapping and peeing all the time.

 

The Dr. came in, checked him out, saw no signs of anything but knowing his history, and being the one who dx our PANDAS to begin with he swabbed him.

 

POSITIVE!!! It was faint - but totally positive. Back on abx we go.

 

I guess I really need to trust my gut! Thankfully my doctor didn't look at me like I had 3 heads when I came in there and actually told me "you have every reason to have him checked if he starts to act odd."

 

Surprisingly - we hadn't had a single meltdown...until...we got home. It was everything I remembered, right down to him collapsing from exhaustion in the middle of the living room floor.

 

We have a follow up with Murphy's office next week - it's going to be interesting to see what she has to say.

 

And wasn't I on here yesterday knocking on all sorts of wood??? My desk at work must be laminate...

[thereishope]

At least you caught it on a Friday instead of waiting and having the tell tale meltdown over the weekend.You caught it fast and let's hope it will be short lived.

[Fixit]

Good job following through on your hunch... mind you ...even if it didn't come up pos...it still sounded like more than usual...(this is more for the parents who read and don't understand all the underlyning, false neg results that are possible)

 

just found a note book....dated oct something....

ds starts to tic....take him in the next day...swab neg....

i take notes every day for another 5-7 days, something isn't right...take him back in...wha, la ...POSISTIVE...the tics start to come before the cultures can show

i've said that is what started to happen, so it is nice to find the notebook!!!

[airial95]

Well, like I said, the meltdown started about an hour after I left the Dr. When my husband got home, I was telling him what the Dr. said, and mentioned he had no sore throat, etc... when my 4 yo non PANDAS daughter (who admittedly has been quite moody lately - but she has fluid in her ears and is having tubes put in and adnoids out next week, so we chalked it up to that) looks at me and says "mommy, my throat hurts when I swallow."

 

It's 5:45 on Friday afternoon - my daughter is known to be drama queen and try to focus the attention on herself, so it's more than likely that she's just saying that because she overheard us talking about that, she had to be banished to her room to avoid injury during her brothers rage and she just wants to take the attention off him. It's not the first time.

 

She had no other symptoms - so after a few minutes discussion, we decided it's worth taking her to the After Hours Pediatrics to get her cultured - worst thing that happens it comes back negative and they look at me like a loon (something we're all used to).

 

The nurse swabbed her without question as soon as I said my son had a positve culture earlier that day. The NP came in and said - yep - it's positive all right - bright blue!!

 

Glad we took her in!!! My hubby and I are going to stop at one of those Walgreen's Minute Clinics or something tomorrow morning to get ouselves swabbed just to be safe...fun fun!!

[Phasmid]

Wow, good job girl!

[thereishope]

I'm so glad you got you daughter tested. We're in the practice, one tests +, we all get tested. So...did you and your hubby get antibiotics?

[VickyLH]

So I posted the other day a question about a teeth chattering tic and my son suddenly chewing on his hands all the time. It started last weekend, and it seemed odd. We didn't have any other issues though - and he even went to a birthday party on Sunday with a ton of kids (many of whom he didn't know) and was polite, well behaved and had a ball. He even was outgoing and introduced himself to some other kids. He was more like my little boy than he had been in a while, it was great. We had a brief meltdown on the way home - but what 3 year old doesn't do that after leaving a party where they were stimulated out to the max. No biggie.

 

Earlier this week, however, I noticed him hopping strangely from tile to tile in the kitchen. His mouth grimace tic was showing up again - but not severe, and the new teeth chatter and chewing fingers were still around. I thought -hmmmm - this is odd, but kids hop on squares all the time - my non PANDAS daughter does it from time to time pretending to play hopscotch - but I'll keep an eye out.

 

He came home from school 3 times this week having had a pee pee accident at school, and he wet the bed 3 times this week. He's just over 3, so it's not totally unusual, but for him, this many accidents is totally not normal. Hmmm...maybe??

 

Yesterday, he was hopping from tile to tile again, this time stopping on each one to clap 3 times. This was definately not normal - one of his fixations is on the number 3 - it definately got our attention.

 

But to this point - we've had no major behavior changes - and massive violent rages are our number one symptom normally.

 

Last night, in the 45 minutes before bed time he went to the bathroom 5 times - totally not normal - and he STILL wet the bed last night. At that point, my husband and I agree - we need to get him in and get him swabbed.

 

I took him in this afternoon - and I was second guessing myself all day. I even felt a bit silly telling the nurse that we were there because he's been hopping and clapping and peeing all the time.

 

The Dr. came in, checked him out, saw no signs of anything but knowing his history, and being the one who dx our PANDAS to begin with he swabbed him.

 

POSITIVE!!! It was faint - but totally positive. Back on abx we go.

 

I guess I really need to trust my gut! Thankfully my doctor didn't look at me like I had 3 heads when I came in there and actually told me "you have every reason to have him checked if he starts to act odd."

 

Surprisingly - we hadn't had a single meltdown...until...we got home. It was everything I remembered, right down to him collapsing from exhaustion in the middle of the living room floor.

 

We have a follow up with Murphy's office next week - it's going to be interesting to see what she has to say.

 

And wasn't I on here yesterday knocking on all sorts of wood??? My desk at work must be laminate...

 

Great job following your gut! I've learned to trust mine as well. Was your son on prophylactic abx? We've had Strep making it's rounds through our house and to the kids down the street and back again. My PANDAS son has been on abx (Azithromycin 150mg/day - I know, not a huge dose, but all we can seem to get at this point without an official diagnosis yet), so I haven't had him tested for a Strep recurrence. Should I? He did react with increased tics, ocd and anxiety when my 4 year old had Strep for at least a week before it was confirmed with a positive culture (negative rapid). I ended up taking my other son (9 yo) for a rapid/culture which was negative, but I didn't think it was necessary for my PANDAS ds. Overall he's doing OK, but he has had some ups and downs, but we usually end up finding out yet another friend on the street has Strep soon after we see an increase in his tics.

 

-Vicky

[airial95]

Vicky,

 

He wasn't on abx at all right now. Dr. Murphy's team took him off to see how he'd do and give his system a rest. We had kind of plateaued a bit (at about 85%) and after taking him off we did backslide a bit (75%) and have seen a steady increase in his food related OCD issues - but it hasn't been as bad as we thought.

 

We had a follow up appointment already scheduled for this Friday to discuss putting him back on or not, so I guess this active infection has taken the thunder out of that decision!!

 

I do have to say - I LOVE our pediatrician. I just looked at the rx of his Cefdinir - it's a 30 day script, with 2 refills. Gotta love a "regular" doctors who get it!

 

As for getting your son retested - I would- especially if it's been going around. I'm of the mindset though that I drag him in to get cultured at the slightest indication there might be a problem.

[pixiesmommy]

Curious if you and your DH came up pos too.

[airial95]

Not on the rapid, but with my history of strep, I was started on abx as well. My hubby is the only one not on right now.

[Joan Pandas Mom]

That is GREAT news, but remember in the future, even if the culture comes out negative, if there are PANDAS symptoms, something is lurking. With one of my son's exacerbation Oct. of 2009, his culture came back negative for Group A Strep, but his ASO titer was 1014. I struggled many, many years because of lack of a second + culture. I don't want to see you or anyone else go through the same thing. If there are PANDAS symptoms, something is going on. Good luck for a speedy recovery.

[thereishope]

Did they send a culture out for your husband? My husband a couple years ago got a false negative rapid. The doc wasn't going to culture since my husband's an adult. My husband insisted...good thing.

 

Not on the rapid, but with my history of strep, I was started on abx as well. My hubby is the only one not on right now.

[airial95]

No - they didn't send it out, but it was at one of those rapid clinics, so he didn't press. He didn't want to get into it with the tech there. He did make a follow up appt for his doctor for tomorrow to get another swab and culture if negative.

 

Our ped has already put our son on a 90 day round to start (30 days with 2 refills), and he's doing well.

 

We're very lucky to have the dr that we do - he's always relied more on the clinical evidence infront of him than any single (or multiple!) tests.

[thereishope]

Yeah, that's one issue I have with those walk in clinics by us too...they don't send out cultures. They only do rapids. Even if you want one, they simply do not offer that service. How's your kids doing now?

 

No - they didn't send it out, but it was at one of those rapid clinics, so he didn't press. He didn't want to get into it with the tech there. He did make a follow up appt for his doctor for tomorrow to get another swab and culture if negative.

 

Our ped has already put our son on a 90 day round to start (30 days with 2 refills), and he's doing well.

 

We're very lucky to have the dr that we do - he's always relied more on the clinical evidence infront of him than any single (or multiple!) tests.

[airial95]

They're doing well. Broderick's episode has been surprisingly mild this time around. Most of the food OCD and primarily tics. We've only had a few rages, and they were nothing compared to those in the past. He's spent alot of time in his sensory swing, which may be why we're having less rages and meltdowns. This is the first strep infection we've had where he hasn't been just flat out violent. I don't know why - but I'll take it!!

 

My daughter is doing well - she actually just went in to have another set of tubes put in today and her adnoids removed (I pushed for tonsils too - hey they were in there right??? but no dice) so she's sitting on her sleeping bag watching movies eating popsicles and drinking Gatorade...quite the life.

 

We have a follow up with Murphy's office on Friday that I've had scheduled for a while, so we'll have to see what she says...but it's been better than we expected!!