Does my 20 month old have PANDAS?

[Stephanie2]

OK, I have been wondering what PANDAS looks like in a baby of 20 months? My 5 year old has it, and I can remember back when he was that age. Right before a positive strep infection he became EXTREMEMLY anxious over me leaving the room, or even putting him down. Of course, I didn't know it at the time, but I believe that was his first pandas episode.

 

So, now for the past 6 months strange things are happening with my 20 month old. Back in May he started having these eye tics. I was sure they were seizures and had the 24 hour eeg done, it came back negative for seizures. Then the neurologist asked if he had been exposed to strep recently and of course he had (it also came back positive for strep in a stool culture). Then over time the eye tics went away.

 

Well, here is what happened recently. A week ago, out of the blue he started having very crazed tantrums. Not the typical toddler tantrums. He just goes completely crazy and my dh and I can not figure out why! And then 2 days later he got sick...lung infection, sinus infection, etc... Today, he seems to be getting pissed off over the stupidest things! Like when I sing to him (ahhh...the lovely sound sensitivitiy) and when I was pushing him outside on the baby swing, he got pissed off when I sat down on the swing next to him, even though I was still pushing him! He would only stop crying if I stood up, right in front of him to push him! How WEIRD!

 

As I am typing this, it is starting to sound like a no-brainer, but I have no idea how a "normal" baby acts, as I've never had one! Can someone clue me in? I guess the good news is that if he does have pandas, he does not appear to have it as bad as my 5 year old. He still seems to have some joy in his day and he/I can still function at this point.

 

And to complicate matters, the pediatrician REFUSES to do a strep culture on a baby who is younger than 2 years old. She says it is impossible for him to have strep throat... (well, now that I think of it, maybe he has it elsewhere...in his stool again?). I could go to our DAN doctor, but he is 2 hours away...ugh!

 

Thanks for any input on this.

 

Stephanie

[peglem]

I'll bet Urgent Care would swab him for you.

[ajcire]

I wonder how your ped would explain my ds's positive throat culture at a year old (my non pandas ds).

 

Grr.. I hate when peds won't do a simple swab

[Suzan]

And to complicate matters, the pediatrician REFUSES to do a strep culture on a baby who is younger than 2 years old. She says it is impossible for him to have strep throat... (well, now that I think of it, maybe he has it elsewhere...in his stool again?). I could go to our DAN doctor, but he is 2 hours away...ugh!

 

Thanks for any input on this.

 

Stephanie

 

Man that makes me mad. My girls both had positive cultures when they were younger than 2. Ugh!!

 

So, some weird things my kids did in retrospect I'm sure was PANDAS

 

Pulled hair and laughed

Stuck fingers down her throat and laughed

Shoved food in mouth frantically until gagging

Hoarded food

Silent temper tantrums

Intense fears of bugs

Separation anxiety

 

I think it's tough with little kids since they can be so different and they do such weird things normally anyway. But since you have one, I would pay close attention for sure. Sounds to me like it could be a possibility.

 

susan

[faith]

stephanie,

 

could you clarify what you meant when you said "(it also came back positive for strep in a stool culture)" ....

 

do you mean in the baby or your other child? did they do a strep test at that time? and why did they do a stool culture? and how can I get one for my son, , I'm curious how it would turn out....

 

Faith

[thereishope]

I second the Urgent Care visit for a strep test on your 20 month old. I was told the same thing for my 2 year old. I demanded it anyway. They did it. She had strep. The longer undiagnosed strep goes, the worse it will get.

 

Also...find a new pediatrician.

[smartyjones]

i think the under 2 no strep thing is ridiculous! my son has + rapid at 22 months. my older son - then 4 -had whitehead pimples on his face in the morning for 2 days. they dissipated some during the day. otherwise, no symptoms. they rapid tested and it was + for strep. they didn't want to test younger that same day b/c 'so unlikely he'd get strep.' the next morning, he threw up. + rapid.

 

at the time, i thought he was allergic to penicillin, so they put him on zithromax 5 days. now i'm not sure if this was the initial strep incident. a year later, he was having severe potty phobia when we potty trained. the dr rapid and cultured him b/c she thought his throat looked like strep. they were both neg. now i think it's definitly related and maybe he never really kicked that initial strep infection at 22 months but hallmark pandas symptoms didn't surface for 2.5 years later with another infection.

 

did you tell the dr he's been exposed to someone with positive strep? i think the only reason they tested my son was b/c his brother was there the day before.

 

what is that theory anyway? is it that the immune system is too immature to mount a defense so there isn't a concern about RF or SC so they don't worry that they have strep if under 2? could it be that pandas is a result of an early strep infection and that's what gets the ball rolling?

[ajcire]

Smartyjones, that is exactly what my ped had told me about strep in babies.. they still cultured my little guy when everyone had it in my house and I asked them to... when it came back positive I asked about that I thought babies can't get it and my dr. told me they never saw a case of RF or SC (ack, I don't remember which one it was they said) in under 1 year olds and that was the concern about untreated strep. They did treat the baby though just like they treated the rest of us, with the 10 day dose of antibiotics.

 

 

 

 

 

 

 

what is that theory anyway? is it that the immune system is too immature to mount a defense so there isn't a concern about RF or SC so they don't worry that they have strep if under 2? could it be that pandas is a result of an early strep infection and that's what gets the ball rolling?

[Iowamom]

We are convinced that at about this age something happened with our now 10 yo son. The behavior stuff sounds SO familiar. This just wasn't your normal 2 yo stuff. "But you know, every kid is different--strong-willed...blah-de-blah....." NOT! Run, don't walk get the throat swabbed.

 

Best Wishes! Dawn

[dut]

This all sounds very familiar - even to the fingers down the throat stuff.....

[dabel]

Stephanie,

 

I agree with with Dawn! My son is now twelve and recently diagnosed with PANDAS. His behavior at two was similar to what you are describing. His tantrums were WAY beyond a normal two year old!! I would certainly look into it. One thing I would like to add is that my son has NEVER had strep throat. The only documented strep infection he has had was in his rectum at age five. So...I would think about checking the other end if the throat swab is negative. He has had high titers w/o any signs of infection. You are lucky to know what you know so you can help him so early. I wish I would have known then! Hang in there!

 

DeAnn

[michele]

Use your gut instinct. They told me my son couldn't have strep at 1 yr old and he did. They didn't want to swab him but I insisted cause his sister had strep and he was having high fevers, and it was positive. He was crying and irritable, fussy eating, eyes blinking, fingers twitching like a piano playing chorea, hard to comfort, and did it in his sleep too. It was awful. We did EEG and CAT scan and all were fine. Ran his strep titers and they were 500's. So after a repeat reaction wih fevers and symptoms he then went into ear infections and had the same pattern. This waxing and waning was the start of PANDAS. Oh how I wish I would have kept him on antibiotics. They said wait and see. 7 yrs later they are still waiting...and my son is changed. Now he has problems that maybe could have been prevented. Tics, moods and compulsions that stay all the time. Get to urgent care and research to find a PANDAS Dr. in your area. This stuff does not improve on its own with time. I was wanting to believe when he was better in between it was gone, however it now is here to stay and I don't know how to reverse it. The damage is per We just have to use meds now to try and mask the symptoms and even they don't really work. You still have time. I'm thinking of you. Please keep us informed on what you find out.

Michele

[colleenrn]

Stephanie,

That is completely false that a toddler cannot get strep and it is so ignorant of your doctor to think so. Babies can get strep. Sometimes the symptoms in younger children are much more mild, so maybe they just aren't getting tested. The strep could be elsewhere also. I just cannot believe that a doctor, knowing the PANDAS history in the sibling and given the recent symptoms in your toddler, would refuse to do a simple throat swab. I would definitely get one done somewhere.

 

Colleen

[Stephanie2]

Thanks for all the input...

 

Today his "strange behavior" seems even worse and I think I am going to get off my butt and bring him into either urgent care or drive up to Melbourne and see the DAN doctor, who is treating my 5 year old successfully. I am just so tired of all the appts/tests and it has taken 3.5 years to get my 5 year old worked out and now this...it feels like it will never end (oh, I forgot to mention that we also have the complication in that he, the 20 month old, also has Chiari Malformation which causes pain/irritability). Now that I think about it, maybe the only way to know if he has pandas is to do the cunningham test. Ugh...guess I just need to keep on movin...

 

Stephanie

 

Oh, and to answer one of the questions. The stool culture was done by the DAN doctor. It is called a Comprehensive Diagnositc Stool Analysis. I don't know if the standard doctor would do this type of test, it is usually run by DAN/alternative med docs. It looks for things like yeast, clostridia, nutritional deficiencies, parasites, good bacteria and bad. Turns out he was positive for strep but I was so in over my head with my 5 year old at the time that I never followed this up with a strep titer or an antibiotic. He gets very bad bowel problems when he goes on antibiotics. Plus, he was teething at the time and he is non-verbal, so it is so hard to assess what is going on with him.

 

 

Stephanie,

That is completely false that a toddler cannot get strep and it is so ignorant of your doctor to think so. Babies can get strep. Sometimes the symptoms in younger children are much more mild, so maybe they just aren't getting tested. The strep could be elsewhere also. I just cannot believe that a doctor, knowing the PANDAS history in the sibling and given the recent symptoms in your toddler, would refuse to do a simple throat swab. I would definitely get one done somewhere.

 

Colleen

[thereishope]

So, he had untreated strep? Start with urgent care since you don't have to wait for an appt. If tests comes back negative, tell them about the positive stool sample you had done and you never got antibiotics for it. Perhaps they'll write a script out for him. Then make an appt with the DAN, even if you get a prescription.

 

Good luck and keep us posted.

 

Turns out he was positive for strep but I was so in over my head with my 5 year old at the time that I never followed this up with a strep titer or an antibiotic.