[Could the fog be clearing?]

After our completely horrible day on Thursday, it's like the clouds have opened and the sun came out! Our little man had a good day at day care on Friday - no aggression, a few spatial issues but was able to talk through his meltdown and calm himslef yay! On Saturday he had a great day - with only some real minor spatial anxiety right before nap time (he was a hour overdue for nap too) And yesterday was near perfect - in the 0-3 range on all our our behavior tracking!! While some of our habits returned this morning - they were far better than normal too!! This is Day 10 of the second 15 day course of abx. Could be our light at the end of the tunnel (I know - it's only the end of the tunnel until his next exposure - but I'll take any optimism we can get right now!!)

 

In light of all of the good news - I have a question. Most of you on here have dealt with this in older children, so I'm not sure if you can help or not - but here goes.

 

My son has always been very verbal - always advanced for his age in his speech development. In the last week or so, we noticed a significant improvement - leaps and bounds - in his verbal communication. He suddenly is more articulate (for a 2 year old anyway) and seems to be able to express his needs/wants/fears more clearly than he has been recently. Before it was just screams and "NO"'s, now he's able to "use his words" again.

 

Could this be becuase the abx is clearing some sort of fog for him that he can communicate what's bothering him now? Has anyone else noticed this?

[What's in store for us?]

We're rewarding him today for such a good day by taking him down to the Florida Railroad Museum to ride the train (he's had a thing for trains lately)

 

I feel like as long as the raging stays under control, we can handle the OCD (so far) since we're not walking on eggshells as much afraid we're going to set him off!! For the last few months we've felt like we're living in that Twilight Zone movie where the kid has special powers and his family is petrified of making him angry!

[Please help! We are new to all of this!]

Ginger,

 

I don't know how much help I can be, we just got our diagnosis a few weeks ago and are running through our second try at abx - the first try was 15 days of Azith and it was working before the Dr. wanted to wait to renew until he could ck him again. My little guy is only 2 1/2 and he first presented about a month before his 2nd birthday.

 

There's lots of helpful information on here. Someone named Buster created a system for logging/tracking PANDAS behavior and tics and charting it. We just started doing it and it seems like it would be very helpful to have that information when you go see your Dr. Vickie bumped up the thread that had the information just yesterday, so it should be relatively close to the top of the forum list.

 

We haven't had any extensive testing done to this point, so I can't help you there - but the folks on here seem to be very nice and helpful!

 

Sandra

[What's in store for us?]

Wow! What a turn around today! Today was the first day that they used the new behavior log we gave them (based on Buster's system) and it was very insightful. The teachers told us he had a really good day - but when we looked at his charting, we saw that they had him up in the 6's on some spatial issues, social anxieties and repetitive behaviors but way down on his most agressive behaviors.

 

Is it sad that I'm actually excited to be able to chart his progress/setbacks now?

 

When we got home, he ate real well and played all night with his sister before one of the easiest bedtimes I can remember! Spoke to the Dr today and rather than see him Monday he renewed his abx through next Fri and will see him then unless there's a major change/setback.

 

Keep your fingers crossed that we keep improving!!!

[What's in store for us?]

Unfortunately we don't know the differnce in dosage either - we're newbies! We're taking him back into the Dr. on Monday for his follow up. Last time around he didn't have much improvement until day 5 or 6. Yesterday was day 6 - and it was our worst day since we started the abx. He had a pretty good morning today though so we'll see. I forgot to mention, he's also had us putting Altabax in the nostrils to attack any strep that may be in the mucus membranes that wouldn't respond to the abx. I haven't seen anyone else mention that.

 

The teachers noticed yesterday that he wasn't aggressive at all, but seemed like he wasn't feeling well and he had 3 bouts of diarrea (which is unusual for him, even on the abx). Our 3 year old was in a cranky mood too, and he loves to take cues from his big sister (monkey see monkey do)

 

If we don't see the type of improvement we saw last time by Monday, we'll probably ask the Dr for a higher dose.

 

Anyone know what dose we should be asking for for a little guy?

[The answer to the PANDAS mystery]

There are many parents on these forums that appreciate your hard work and dedication - it makes you an angel - not a nerd!

 

Thank you!

[What's in store for us?]

UGGHHHH!! Had a horribly rough night. The teachers said he had an okay day at school as far as aggression/raging but was very cranky all day. Had a couple of potty related meltdowns and an episode at snack time - something wasn't "just right" with his snack and they never could figure it out.

 

On the way home he kept worrying that "we're gonna crash" (new symptom for us!) and he was just off his rocker all night. Ate dinner well, but then kept saying he was still hungry just before bed, but all of his normal snacks that we offered didn't taste right.

 

I'm trusting you all when you say this gets better!!! This is the worst evening we've had since we started the abx!

[What's in store for us?]

I messed up, I meant to say hes on 50 mg 2x a day - for 100 mg daily total. Sorry!

 

We're not doing any time off right now, it's constant for the time being (other than the short break last week). And when he was first diagnosed, there was no known exposure at the time and a negative throat culture. His last known exposure was impetigo last summer about 2-3 months before the sudden onset of symptoms. We were notified by day care of a confirmed case of strep in both my son and daughter's classes on Monday afternoon, but by this time he was back on the abx for 4 days. His improvement this time around seems slower, but is still noticeable. We're thinking it may be slower bacause of his recent exposure.

 

On his first round of abx it was day 5 or 6 before we noticed any improvement at all. It's day 5 this time around and we're already noticing some changes.

[What's in store for us?]

Did our first run (15 days) from Jan 27 through Feb 8. The Dr wanted to see him back before he renewed, so he was off for 3 1/2 days before he started up again on the 12th. (Dr just wanted to make sure he wasn't having any adverse effects to the abx - didn't have an issue with keeping him on for an extended period like I had originally feared)

 

He just started his second 5 day run. We noticed an almost immediate backslide when he went off, but a slow prodding improvement now that he's back on (similar to the first time).

 

The Dr. wants to see him back after every 2 5-day courses, just to keep an eye on him. He's on 50 mg Azith total per day - nothing as high as I've seen on these forums. I've attributed that to the fact that he's 2 and only 27 pounds. It seems to be working at this dose - although like any parent not as quickly as we'd like.

 

We're happy with our dr's approach so far - he still hasn't ordered any blood work or tests - just the abx and a see what happens!

[screaming outloud and no one hears]

I'd probably still write some sort of letter to the practice - it's worth noting your complaint in writing. If the NP didn't actually consult the Dr, then it will at least bring it to her attention. If they're using a billing company, I would cc them too.

 

You may also want to look into any regulatory board in the state that would investigate any fraudulent billing practices. If you were scehduled to see the Dr and paid to see the Dr, they might be interested in something like that.

 

Just a thought.

[What's in store for us?]

Thanks for the encouranging words! This morning was a relatively "good" morning by comparison - but looking at his little face when he said he wanted to get better just pushed me over the edge.

 

My hubby tried to remind me that he's only two, probably only has a limited grasp on what's happening and his words most likely didn't have the meaning I'm attributing to them. But still - it was heartbreaking.

 

I'm sure you're right about the denial, but I would hope we'd be proactive there too. Immediately after his onset we were always making excuses to explain his behavior - he's bored in his classroom (he's always tested developmentally ahead of his peers), he's tired, he's not feeling well, his routine is off, etc...

 

Hopefully now that we know what the problem is, we won't fall into that trap again.

 

Thanks again for the encouragement - I needed it today!

[What's in store for us?]

I've been reading on here for a couple of weeks now, and even posted a couple of questions and was so appreciative of all of the support and feedback (thank you all!!) But my husband and I are still trying to figure out what's in store for us!

 

Based on all of the stories I've read here, we seem to be very lucky that we were caught quickly by our pediatrician who is by no means a PANDAS expert but seems to be pretty up to speed on the symptoms and treatments.

 

He diagnosed our 2 year old with potential PANDAS with nothing but our description (and his and his staff's own observations over the preceeding months - one of the benefits of a small family practice!) about 6 months after the sudden onset (9 months after a strep infection). The throat culture came back negative, but he didn't seem to think that much of an issue. First course of Azith. (15 days) showed significant improvements - by the end we got a glimpse of the same little boy we had before the onset. He was off for 4 days, and then the dr restarted. He's been back on only 5 days now and is showing mild improvement (not to the level of the first round, but we didn't see anything significant until day 6 or so, with our best results around day 13-14)

 

Dr. has already warned us that he may be on the abx for an extended period of time (which we also learned here too!)

 

The one thing that I haven't been able to gather from reading this forum (or the dr really) is will I ever have my little boy back? I know that he'll likely have recurrances when exposed to strep, but will he get better in between? From what I read on here it seems like there is always some lingering symptoms. We've seen glimpses of my man on the abx and are hopeful.

 

This morning he had a rough spell during drop-off/breakfast at day care. That's usually his worst time with the compulsions/meltdowns. He started off pretty good - maybe a 4-5 on Buster's scale (which is great! I have day care using it to track his symptoms too!) for his usual compulsions. He even responded well when he saw his muffin was a bit broken (a big trigger for us if it's not "just right") saying it was okay they're still "tasty". But after he got his milk and looked at the muffin again, it triggered our meltdown - not the worst he's had, maybe a 7 or so - but in the middle of the screams of "NO" with the offending muffin in his hand, tears streaming down his little face he looked over at me and said "Mommy, I want to feel better, I want to feel better".

 

It broke my heart! I just want to know will he get better!!!

[Pediatrician stopped our antibiotics!]

Our pottie problems went the other way. He would go to the pottie every 20-30 minutes or so, on his own (without being reminded) and would pee, just a bit. We originally thought it was just the thrill of the excitement (our pottie dances were quite the extravaganza), but this went on even after we ended all of the crazy positive reinforcement.

 

Until we started him on the abx and saw the backslide (which is more normal 2 yr old behavior like getting so focused on playing that he has an accident - prior to abx that NEVER happened). When I mentioned it to the ped. he indicated that in older kids, frequent urination - usually in small amounts - almost obsessing about having empty bowls and bladder isn't uncommon for PANDAS. We're not sweating it too much on the potty thing. I'd rather have accidents and no meltdowns than the potty trained alternative. Besides, he just turned 2 at the end of Oct!

 

But it is very hard to tell the difference between PANDAS and typical 2-year old behavior. If we hadn't seen the dramatic difference when he started the abx, we would've continued to think we had the most "terrible twos" in history!

[Pediatrician stopped our antibiotics!]

Thanks again for all of your help and support! He started up the azithromycin again, just wanted to see him before he renewed to get a more detailed look at how his behavior had changed and also to make sure that the extended abx weren't having any negative side effects. He also said that with PANDAS it's not unusual for him to have to be on abx for an extended period of time until all of the symptoms are abated.

 

He gave us a rx for another 2 courses and wants to do a quick follow up again then just to make sure the little guys not having any negative side effects. (Since I know he'll want to see him again, I'll make the appt ahead of time so he doesn't lapse off the abx!)

 

He also suggested that we think about seeing a psychologist with him for BCT. He's not pushing the issue, said we'd discuss it further after we see where this course of abx leads us, but that my husband and I should start thinking about it. He just seems so young (only 2) - could this really be helpful?

 

It took about 2 days back on the abx for us to see improvement again, but it's there (I got to pour his milk for him this morning! Baby steps right?)

 

When he's on the abx though, he really takes a huge step backwards on the potty training. He was almost 100% there, and when he's on the abx there's lots of accidents, and forgetting. The Dr. says that it's to be expected because of the "frequent urination" aspect of PANDAS. Has anyone else seen this in their young PANDAS child?

[Pediatrician stopped our antibiotics!]

He is the one who initially presented the PANDAS diagnosis, so I'm hopeful that he just wants to see him and make sure that there's nothing else going on, no ill effects from the abx so far.

 

But I've always been a glass half empty kind of person - preparing for the worst and hoping for the best. I guess it's the old girl scout in me!

 

Thanks for the help!

[Pediatrician stopped our antibiotics!]

Our 2 year old son was diagnosed with possible PANDAS a few weeks ago and started on Azithrimycin. We noticed an improvement almost immediately (I posted about it previously). He finished his thrid course of abx on Monday night and almost immediately his syptoms began to escalate again - starting with the breakfast issues and the fatigue is back too.

 

We called the ped to renew the abx and he wouldn't over the phone, wants to see him again this afternoon to reassess. We were really pleased with the progress he was making and are going to ask the ped to keep him on the abx a little longer (especially since we were notified by day care today that both my son AND daughters class now has a confirmed case of strep!)

 

I'm hoping he'll agree, but if anyone has any advice, suggestions on questions or things I should bring up I'm all ears!!

 

Thanks!

Sandra

[Pediatrician thinks my 2 yr old has PANDAS]

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!!!!

[Pediatrician thinks my 2 yr old has PANDAS]

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!

[Pediatrician thinks my 2 yr old has PANDAS]

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.

[Pediatrician thinks my 2 yr old has PANDAS]

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.

[Doctors we have seen who helped with PANDAS]

In the Tampa Bay Area - Dr. Robert Friedmeyer - http://www.kidsandmorepediatrics.com

 

He suspected our 2 year old had PANDAS after noticing signs of OCD, ADHD, ODD and TS. Even with a negative throat culture, started him on Azitrhomycin and 9 days later we had our little boy back. He's amazing!

[Pediatrician thinks my 2 yr old has PANDAS]

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!!!

[Pediatrician thinks my 2 yr old has PANDAS]

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?