Pediatrician thinks my 2 yr old has PANDAS

[airial95]

We're new to the PANDAS diagnosis and was hoping for some feedback from others who may have been in our situation.

 

This fall just before our son turned 2, he started exhibiting aggressive behaviors towards the other children in his day care class. Since he always tested developmentally ahead of his peers, the administration thought he may be bored with his class and accelerated his move to the 2 year old room. (This worked previously with our son, and prior to this he was a very sweet, well behaved, well mannered little man) The behaviors continued to get worse, but were mostly characterized by tantrums. When we had him in the Dr. we discussed dicipline tactics and strategies to curb the anger and tantrums, thinking this was simply the "terrible twos". As time went on, we noticed he developed a fiercly independent streak, again, nothing too unusual for a 2 year old, but it seemed extreme. For example, if he was going to open a door and someone else even touched the knob, it would set off a tantrum that could last for hours, including biting, kicking, etc. We also started to notice he was developing "patterns" for doing certain things (walking from the house to the car, car to day care, eating breakfast at day care). All of these "patterns" became more and more independent and complex as time wore on. We also noticed that while he is a very good sleeper (14-16 hrs a day with naps), he always looked physically exhausted.

 

Behavior reports became a daily fact of life at pick up time from day care, and two weeks ago while having a huge tantrum (because dad touched his chair) he hit his head pretty badly. He seemed to bounce back, but we still kept an eye on him. That Monday and Tuesday we got calls from day care saying something was seriously wrong, his behavior was far worse than normal and they were concerned. Thinking it could be a result of his fall over the weekend, we immediately had an appt with the pediatrician the next day. After ruling out head trauma, looking back at our records of the previous behavior discussions and asking us some very detailed questions, he indicated that he's exhibiting signs of OCD, ODD, ADHD and potentially TS. He also immediately said it may be PANDAS and did a throat culture. The culture came back negative, but he still opted to start him on Azithromycin, since a negative throat culture didn't mean he was not a carrier. He didn't draw blood or do any other tests.

 

He's been on the antibiotic for 9 days now, and he seems to be a different little boy. He's had 3 incident free days in a row at school, and even let me "help" him pour his milk and peel his banana for him this morning. (Seems insignificant, but previously, if I even touched the milk or any breakfast item it incited a wrath that was not easily quelled).

 

Since the Dr. told us about PANDAS, I've tried to do as much reading as I can and noticed that most sources don't mention much about diagnosis prior to age 3, although some mentioned it can present as early as 18 months.

 

We're thrilled that we've seen such drastic immediate results, but his young age, and the fact that our Dr. did not do any further testing makes me leary.

 

We love our pediatrician, and after reading these forums the last few days I realize we're lucky to have one that even knows about PANDAS, let alone is willing to treat it first.

 

Just wondering if anyone else has a child that was diagnosed this early?

[ajcire]

Wow! How totally awesome that your pediatrician is so in tune with this. That's really great. I think that many of us in hindsight can say we saw the pandas earlier but it wasn't until later when we had more of the puzzle pieces to put together that we were able to see the big picture.

[peglem]

We're thrilled that we've seen such drastic immediate results, but his young age, and the fact that our Dr. did not do any further testing makes me leary.

 

If the abx is helping, it sounds like your doc made a good call. Nice to hear that there are some pediatrician picking up on this before the parents come begging to have it checked.

 

But, I wonder why you're leary? What kind of testing do you want done?

[airial95]

I guess you're right, we probably don't need more testing, expecially since he seems to be getting better already. Maybe it's more shock than anything after all I've read of people having such trouble finding doctors, years of issues, it just seems too good to be true that the antibiotics could take care of everything.

 

Also, we've kept wondering how much of his behavior was just being 2 vs something more serious. Since the treatment seems to be working I guess we have our answer. And believe me - we're thankful for it!!!

[peglem]

I guess you're right, we probably don't need more testing, expecially since he seems to be getting better already. Maybe it's more shock than anything after all I've read of people having such trouble finding doctors, years of issues, it just seems too good to be true that the antibiotics could take care of everything.

 

Also, we've kept wondering how much of his behavior was just being 2 vs something more serious. Since the treatment seems to be working I guess we have our answer. And believe me - we're thankful for it!!!

 

Are you just on a course of abx, or long term? What's the overall treatment plan? Or, is it too early for that?

[airial95]

Too early yet, he just refilled our rx today (will be starting 3rd course) and are set to follow up again on Monday to see where we go next. Based on our initial discussions, he'll probably pull him off and see from there.

[ShannonOtown]

If you feel like you need to run more test... I know we all on the forum have the desire to dig, dig, dig... I would suggest checking his immune system to see if he is able to keep himself healthy. Might add some relief if his IGs are stable.

[dut]

Hi - we have a dd6 with the PANDAS diagnosis. We believe she started around 3, maybe earlier. We also have a ds2 who we believe to be PANDAS as well. I had seen some signs and so did something called the cunningham test. it looks at cam kinase II and anit neuronal antibodies. It is still in study stage but the researchers are attempting to look for markers of PANDAS and in previous work they were finding camkinase levels were elevated in kids with PANDAS and Sydenham's Chorea. We did the test for both our kids and both came back in PANDAS range.

 

We had seen some of the similar signs to you in our ds2.. some ocd type behaviour, aggression towards kid's his age, very wilful, hyper. Like you, I also could explain his behaviour as normal 2 year old stuff but my gut was telling me otherwise - it was just more extreme than other kids his age.

 

Both my kids got ill with a flu like illness over thanskgiving. My dd's PANDAS flared and my son's behaviour tanked as did his sleep. My dd had steroids and that sat on her symptoms with exception of some super minor OCD that crept back in a few weeks later. That ocd stopped altogether over the last 2 weeks. At the same time as her final bits of ocd disappeared, my ds's behaviour improved a lot and shortly after that his sleep started to improve. I feel that he too was in an episode just milder and harder to pinpoint 'cos of his age.

 

I would certainly stick with the abx and see what happens. I would also suggest doing the cunningham study. I believe a better explanation of it can be found in the pinned threads at the top of the forum page.

 

Good luck. I think many kids start this early but most don't get recognised until later, at which point you may have to do more aggressive treatments to get them back to baseline....

[thereishope]

Welcome.

 

I am so happy you are catching this rather quickly. have all family members been checked for strep to avoid reinfection? Some PANDAS kids will react to exposure only too. If you haven't done this yet, it needs to be done.

 

As for the food reference, I totally get that. For quite awhile I wasn't allowed to touch any of his food. He had to prepare evreything, get is own cup, plate, utensils. It was a big day when he let me help him.

 

Have you notified the day care about strep and his autoimmune disorder? One of my strong theories is my son kept getting reinfected at his preschool.

[Suzan]

Hello. I am so glad you have such a great doc who is up on these things and recognized it early. My girls have had it probably since 16 months and 12 months old but were not diagnosed until last year at 6 and 7 years old. Good luck with everything and I hope early detection will be the key for you. Hopefully at the very least he will stay on some antibiotics to keep the strep away!

 

susan

[airial95]

Welcome.

 

I am so happy you are catching this rather quickly. have all family members been checked for strep to avoid reinfection? Some PANDAS kids will react to exposure only too. If you haven't done this yet, it needs to be done.

 

As for the food reference, I totally get that. For quite awhile I wasn't allowed to touch any of his food. He had to prepare evreything, get is own cup, plate, utensils. It was a big day when he let me help him.

 

Have you notified the day care about strep and his autoimmune disorder? One of my strong theories is my son kept getting reinfected at his preschool.

 

 

Day care has been wonderful, very supportive. We had a meeting with them right after the diagnosis, and the director (who has a PhD in developmental disorders) asked about PANDAS as soon as I started telling her that the dr suspected OCD/ODD, etc... She was familiar with it, and seemed surprised that my dr was so up to speed on it and wiling to treat it.

 

We haven't gotten the whole family treated as of yet, I think the dr's first approach was to thow some abx at it, see what happens and then proceed from there. We're going in for a follow up next week to see what the next steps should be and that will likely come up.

 

The difference we've seen has been amazing though. I've had 5 meltdown free mornings at breakfast and drop off, which hasn't happened in months! Yesterday when he asked me to peel his banana, I thought I was going to cry. I mentioned that little milestone to the director and we were jumping around like giddy schoolgirls. She's seen the struggles we've had and knew immediately what a HUGE step that was for him.

[airial95]

Thank you all for the info and the support! It means so much to hear from people who are going through the same thing, and I realize how lucky I am to have a Dr. who recognized something like this so early!

[7upMom]

When my son was 2 he would throw HUGE screaming fits when we drove past cornfields ( we live in Iowa so they were hard to avoid) At home when he did throw temper tantrums ( which was constantly) he would bang his head on the cupboards, the floor, the table- it wasn't just "normal" temper tantrums, it was unlike anything I had ever dealt with or seen. He would spit all over himself, there was absolutely no reasoning with him. We thought he was just a very emotional child and had hit a seriously bad terrible two stage. Well those symptoms have just never went away. He also slept a lot, but still always seemed so tired and looked very wornout. He still is like that ( he is 9 now) When he was 6 they diagnosed him with rheumatic fever and put him on longterm penicillin- it didn't do a whole lot ( looking back I think it just kept everything from getting worse but didn't 'resolve' anything) at 8 his pediatrician thought he had been on penicllin long enough and removed him from it, within 6 months he developed fullblown tic disorder and then last month full blown ocd. He now has been diagnosed with PANDAS with the sudden onset of everything and his titers were 1360 ( I don't think he ever complained of a sore throat and it was strep- so at that time his titers were surprising to us). He is back on the penicillin (4 mths now) and every month he gets worse. I have learned so much from just 2 weeks of reading the posts here. I know that not all the PANDAS cases are the same- but based on my longterm battle with this- I would be leary of letting them remove your son from antibiotics and do the " titers are in check" lets see approach. You are so lucky to have a pediatrician that stays up on this though- that is a huge positive!!!!!!!!!

[airial95]

Thanks again for all of your support! Having someplace to go where people can realate to why you're jumping for joy when your kid lets you help him open a banana is truly priceless!!

 

Being new to this, I could still use more help though. We have our first follow up with our pediatrician next week since the initial thought that it might be PANDAS and starting (successfully so far!) the abx.

 

What questions/information should I be asking specifically from my pediatrician about all of this?

Should I ask about more testing to confrim (so far all he's done is one negative throat culture and that's it) or should I just be happy that it all seems to be working so far?

 

Hearing you all talk about titers and such makes me feel like there's more I should know.

 

Any questions I should be asking would be very helpful to this newbie!

 

Thanks again!!!!

[7upMom]

I only wish I could help you on this one, I still don't even know exactly all the right questions to ask- and you may find ( hopefully not though) that if you see more than one doctor they all have different thoughts, theories, treatments etc. That was very confusing to us, our very trusted pediatrician that we had for over 10 years we found out just wasn't up to speed ( even though we did trust what he was saying at first) then our trusted psych ( who is truly a great psych - well he wasn't correct either) our behav therapist ( well he didn't have a clue and even said such - sounds weird but we did appreciate the honesty) our immune dr ( yeah just posted about him and he is a specialist from a renown childrens hospital so you'd think he would know) We feel like we have wasted years trying to go to different doctors and trusting/trying different things.

I know for sure if I were in your shoes- I would ask for a blood test to know his titer numbers - don't base everything off that is what I've learned from others but its good to know. I am just finally starting to understand some of the abbreviations on here and have looked up so many of the words with the dictionary - I feel really lost still when I read some of the posts, but its good to push through that and just keep educating yourself about it!! I wouldn't just Leave it as is though, be prepared for the "next step" just in case this one doesn't continue to pan out- thats the biggest thing I have learned- it will save your child a lot instead of treading water!