seeing signs of PANDAS/PITANDS in younger son 2.5yo

[ANRmom]

Hi all,

 

I'm beside myself as I write this.

My older son nearly 6yo is likely a PITANDS case. He is on prophylactic PenVK250 twice a day and we will be seeing an ENT soon to see if tonsils need to come out.

 

But, my little one who is 2.5 yo is showing too many signs of PANDAS for me to ignore. In mid July he had a high fever for 5 days. Tested negative for a strep throat swab and culture (I did the test, since the older one had had strep thraat and scarlet fever a few weeks prior). Docs did not see any ear infection and chalked it up to a viral fever.

In late August he had another high fever for 5 days. I took him in to the doc and the strep throat culture was negative. Again it was chalked up to a viral fever.

 

In mid September he had a penile infection that was treated with a 5 day course of Augmentin.

Two days ago on October 11th, he got his flu shot (preservative free single dose vial).

 

Since July I have noticed more:

 

1. separation anxiety (optimistically chalked up to me being home more over the summer with kids and starting 3 day mornings at preschool since end of August),

2. more aggressive behavior - hitting and screaming one minute and being his sweetest self another minute; very dr. jekyll and mr. hyde like (optimistically chalked up to terrible twos; and starting preschool);

3. Past couple of days he has been asking to go to the bathroom more often (doesnt really pee very much when I take him to the bathroom, he is pretty much potty trained so we are just noticing this).

4. Lots of baby talk in the past couple of months that he did not do prior to the summer.

 

What is going on here? It seems to me he has reacted in a PITANDS or PANDAS way to his July or August infection. What should I do?

 

I have made an appt with Dr. L, but that is not for another month. What kind of treatment do PANDAS specialists recommend for toddlers?

Please give me some advice.

 

This is heart breaking.

ANRmom

[WorriedDADNMOM]

I am just getting going on all this stuff again now that school has started. Middle dd and oldest dd have had issues even this summmer early fall. Still sorting it out. Have not really had the time or desire to post since it has been stressing me out.

 

I assume you know about the short "Rapid test" and overnight culture. You indicated you did the test yourself which indicated a rapid to me. Problem with them is the false negatives. Did you take to ped for overnight(long) culture????

 

If your gut tells you somethings up, then go get blood drawn for ASO titer level to find out if previous strep infection. Keep pushing. My dd's did not have classic symptoms of strep throat. If you think somethings not right, nobody knows your kids like you.

 

I will say dd 7(middle) did not have any symptoms but developed eye/eyebrow tic. ASO turned out positive. 10 days Amox did not help end tic, penicillin was the trick for us. Now dd 8(oldest) developed odd,and severe, I MEAN severe separation anxiety after having strep in mid-late June 2011. Rapid at Ped negative, long test(sarcasm) since they did not let us know for a week it was positive. Talk about being ticked off. Amox was the abx prescribed. No real help with Amoxicillan. Symptoms have subsided some since taking to new ped and doing 5 day zithromax earlier this month. For us, the exacerbation's started a few weeks to "maybe" months after infection. Very tough if you do not know for sure of positive infections.

 

You can read many of my early post from Jan 2011.I am not clueless about Pandas just overwhelmed on what to do next.

 

Hope this helps.

[ANRmom]

WorriedDADNMOM: Sorry for not being clear:

 

All strep tests, rapid and culture were done at the pediatrician. All were negative.

So can one have a strep infection but only show a fever and no strep in the throat? thats the part that throws me.

 

thanks

ANRmom

[nicklemama]

You can have a strep infection and show no signs of infection. Don't ask me how. I don't understand it. At this point, just being around someone w/ strep increases my DS's behaviors, even while he is on prophylactic augmentin and does not actually get sick. Fortunately, so far, its just minor flare ups.

 

Your younger son sounds like my DS's initial PANDAS presentation. It was never documented as strep. He had very similar behavioral symptoms as your son did, after he had an ear infection. We did not recognize it as anything more than a phase or a reaction to Flonase that was prescribed. Our son had just turned 5. The big exacerbation that was severe occurred 9 months later, after Flumist.

 

I don't know what is prescribed for toddlers w/ PANDAS. I'd guess treatment would be the same as for a bit older child.

[beeskneesmommy]

He could have Strep elsewhere (nose, perianal) ot they may not be swabbing aggressively. My son was DX with PANDAS at age 2.5. he had few Strep symptoms, althoug he had Strep throat about 10 times prior to getting his tonsild removed. Makr sure the Nurse is really scraping his throat. If he doesn't gag, it's not good enough (I say). It's a bummer to do it to them, but this was an issue for us at times because he was so little - they were hesitant to get a good swab sometimes. Fot he 1st year and a half after dx, my son was given abx for each Strep infection: Amox., Cephelexen, Augmentin. After his tonsil removal just before he turned 4, we had to see a specialist as he had an acute episode (wish we had seen her in the beginning but the Peds kept just treating the Strep and not the PANDAS). Anyway, he had turn 4 only a couple of days prior to this. I knew what was going on and convinced his Ped to start a therapeutic does of Augmentin, which the specialist at CHOP continued him on for a long period of time. This history leads me to belive that ongoing abx would be the appropriate treatment for a kiddo age 2.5. At age 2.5, my son was on/off of them often, at the end about every 2 weeks d/t recurrence of Strep.

 

So sorry that this is happening, but it's good that you are on top of it at such an early age. He may be one of those who can completely recover with a long run of abx alone, as it is being caught very early....

[airial95]

My son was dx at 26 months, so I can relate to the uncertainty as to what is PANDAS vs. just developmentally age appropriate. The strep infection that kicked off my son's issues was an impetigo infection about 6 months before dx. We lived through 6 months of torture assuming it was the "terrible twos" and as my mother put it "boys are just harder".

 

We saw many of the same things you did - what stands out most to me about your post is the "jeckyl/hyde" reference and the multiple bathroom trips with little happening. This described my son to a T. We often used the jeckyl/hyde analogy ourselves.

 

It is difficult to deifferentiate between age appropriate phases and PANDAS at that age. I would recommend keeping a journal/log of some sort. We used Buster's methodology and adapted it to a toddler's symptoms. We were able to rate his issues from 0-9 on a daily basis and see which were ultimately PANDAS related, and which were just common age appropriate behaviors. (We put it all into an excel spreadsheet - if you PM me, I'd be happy to email it to you.)

 

Our course of treatment was abx. We saw a siginifcant improvment (about 50%) within 7-10 days. He will be 4 in a couple of weeks, and has been on/off abx constantly since dx - the longest he's been able to come off has been 6 weeks without a re-infection. He'll be getting his tonsils out next month, and we're hoping that will help. We discussed IVIG with our pediatrician and Murphy (our PANDAS specialist), Murphy didn't think it was necessary (he has no other immune deficiencies), our pediatrician was open to the discussion, but ultimately, my husband and I agreed that he was just too young.

 

As for having strep without it being in the throat, in addition to the impetigo (which he has had a few times now), he has also had strep in the nose. Oral abx doesn't always clear this, and we had to use a topical abx swabbed into the nose a few times a day. Our pediatirican now has us do this as general rule with each exacerbation just to be safe. Our son has never had a fever or sore throat even with his positive cultures. His strep symptoms (other than the impetigo) have been limited strictly to PANDAS symptoms.

 

Hope this helps!

[WorriedDADNMOM]

So Bees--------------How do they test for strep in nose, perianal or even fecal matter----have heard they do stool sample??? Swab the nose?????

 

I have not gotten a diagnoses of Pandas but I highly suspect it. I have just left our old ped since we did not find out for week our dd8 was strep pos for whole week. 2-4 weeks later, severe odd and separation anxiety started. We just had them all 3 swabbed very aggressively(concerned about previous ped regarding swabbing technique) in the throat and they all came back neg. Put them on zithromax for 5 days. Glands got better, but now they, especially oldest dd8 glands right back to where they were. DD7 doing what I think is a head tic-----kinda like a bobble head, only just up and down during downtime or inactivity----same as last year when she had the eye/eyebrow forehead tic.

 

Some questions, in addition to ones above, for anyone who can answer please--------

 

1) Can strep be in nose with out any major symptoms???? What would symptoms be????

2 What are the perianal or gut strep symptoms????

 

Looking for next course of action. In NW OH. Would appreciate anyone with more personal experience with this. Have only been dealing for less than year

[airial95]

I'll try to answer the best I can, from my limited experience. We haven't dealt with perianal or gut, just nose... When our son presented with strep in the nose, he did have an elevated heart rate (which is common for strep, I guess), and some inflammation in the nasal cavity, which was an indication of infection (our pediatrician did note, however, that a sinus infection and common cold also look like that). Our ped DID swab the nose before, but he also told us that the results may not be accurate since that's not what the swab was designed for - we have gotten a very faint positive off of the nasal swab before.

 

My ped used these things - along with my son's clear PANDAS flare up, to dx the strep in the nose. We use a tracking log that we provide to our ped whenever our son has a flare in symptoms - it's been helpful.

[nicklemama]

WorriedDadNMom- I sent you a pm. Check in the top right hand corner to access the pm's.

[WorriedDADNMOM]

Ariel---thank you!!!! I will most likely pursue this nose swab as a possible course to take. Since my dd7 had Impetigo at 5-6 years old, again, amox was prescribed. She has had at times the slight little bumps since then just like full blown exacerbation, just not full blown(early stages almost unnoticeable). Just little bumps around mouth and nose.

 

Thanks for the help.

[airial95]

Little bumps around the mouth and nose may also be impetigo...it looks like pimples, and is most common in that area.

[WorriedDADNMOM]

Yeah, Back in Dec 09 she got it from a water park and I the dad got a staph or strep lesion. The gave abx(amox) and it cleared----I thought. Seemed as if periodically after Dec 09 thru even now she would get sometimes 1-3 or 3-6 little bumps around lower half of face or sometime on the fore head. Very faint in appearance. They would hang around for awhile, then go away. They never broke open and got crusty like normal or like back in Dec 09. Just a suspicion of mine post Dec 2010 tic disorder after positive ASO.

[butterflymom]

=

Edited October 7, 2015 by tampicc

[nicklemama]

I thought impetigo was weepy lesions. Are you guys telling me it can look like small pimples?

[smartyjones]

I thought impetigo was weepy lesions. Are you guys telling me it can look like small pimples?

 

4 years ago, Easter monday, ds9 woke up with white bumps on his face that looked like teenage, whitehead acne. they dissipated during the day but never completely went away. the next morning, same when he woke up. by the time we got to drs, around noon, they had again dissipated. she said, 'i don't think it's strep'. he was positive on the rapid. they didn't test ds7 b/c at the time he was 22 mths and 'babies that young don't get strep." the next morning, he threw up = positive on a rapid.

 

treated both with abx. of course, didn't test again after off abx. i strongly think this infection is what got the ball rolling for ds7's 'sudden onset' 2.5 years later.

 

no other signs of strep but for face rash for ds9 and vomiting for ds7. it could have turned into stronger symptoms or could have not -- ?