Pandas At a very young age

[Johnsmom]

This has been driving me nuts for over a year now. Diagnosed with pdd nos at age 5, pandas at age 8.

 

We never saw a huge change or sudden onset. And we suspected something was up but always poo poohed it off.

 

Excessive drooling between 3 and 12 months, pink eye at 12 months. Obsession with hair after that. Clingy, horrible sleeper, poor speech development, poor motor coordination, spacey at times, couldn't pedal trike at 3 yrs old. Sound sensitivity, horrible gas at yrs of age, ketaris

Pelaris (sp) ear wax, flaky scalp, low tone, fever followed by being unable to walk for a day and a half. (happened when he was eight yrs old as well). 7 yrs of age: holding pee, wetting pants, wouldn't eat because thought teeth were going to fall out. Tells me he wants to push me off a cliff. OCD about video games. Jekyll Hyde behavior.

The list goes on ....... You all know!!!

Positive response to steroid burst (really positive!) hd ivig up and down until 12 weeks, then 2 weeks later downhill. Now on monthly ivig starting lower (.80) and working up to

high. Only have done 2 so far. Have seen only a few days of good but told to wait at least 6 months.

 

Soooooo. Anyone else have a kid that thinks theiy got it young and you just couldn't tell?

 

This is way too much to be typing on an iPhone

[Stephanie2]

Well as you know my boys have (had) autism, and I feel that PANDAS is my oldest child's main feature (although I think he was kind of a border kid either way). But with my 3yo, well he sounds a little like your son. In my best estimation, he had autism before his first onset of pandas (which was 15 months of age) but then who's to say for sure? He was definitely sick a lot his first year with ear infections, sinus, respiratory, you name it. I can't imagine that any doctor could look me in the eye and say that there is no way that any of those earlier infections was strep. With that being said, could he have had strep his first year and that's what made him look autistic? But really, even now when i clear strep, he still has speech apraxia, so there is no way that pandas is his only problem (also has mito dys, and the list goes on).

 

By the way, has he ever had an MRI? I ask because that ataxia you talk about happened (happens) to my 3yo who has chiari. I have always attributed it to chiari, but then I later found a correlation btwn his pandas episodes and his chiari exacerbations. So maybe the ataxia/pandas/chiari all happens at once due to the excessive inflammation/herniation of the cerebellar (sp?) tonsills. My son also has the very low tone which I guess one could say is the mito dys but I have also been told it could be the chiari. My son has photosensitivity as well as sound sensitivity (I think the photo is chiari and sound is pandas). Maybe something to rule out but then again why put him through MRI if you don't intend to have surgery. Oh, grabbing the back of the head in pain is another chiari symptoms. I'm not sure why I am talking so much to you about chiari (as if you need the added stress!), I guess it's the ataxia that sounds a little strange.

[SarahJane]

Hey there!

 

Yep, I think we've been dealing with PANDAS since ds(7) was at least 2.5...maybe before that but we didn't know. But that's the age that we took him in for a speech delay (which did not throw up any red flags at his 2yr appt other than to watch it...he was on target with everything else & actually already knew his abc's & could count). But when we brought him in at 2 yrs 8 months, they started throwing the word autism at us based on his behavior at that appt (which was pretty hyper, but there were also reasons for it that day...BUT he'd also had his first ear infection 2 months before). And even tho' we saw a behavioral pediatrician TWICE who did NOT give an autism dx, our ped's office would still go back to that. When I reviewed his medical records, that's when I saw the pattern of illness/behavior issue, illness/behavior issue, illness/behavior issue...all of these were likely "minor" PANDAS flares. And I was able to relate some parental illnesses to our son's illnesses and/or behavior issues. And our son was not a fussy kid. That's why when we'd see these behavior issues, they were out of the blue & we felt so inept to handle them because we never had to when you expected to have to deal with them (no terrible 2's or 3's...he was over 4 before we got the more fussy behavior with illnesses & it was outta control the week after his tonsillectomy). And the behavior issues were transient, so we were mostly left bewildered as to what was happening. Our son was exposed to strep just before he turned 2, and he did get sick not too long after, but his rapid/culture were negative. We did have a pretty big behavior flare right when he turned 4 & it was actually discussed the day they did his 4-yr shots (he got fixated on clocks right after that & I had to cover them up to break that "habit"...he'd also been in for a sick visit a few days before those shots & never should have gotten them...GRRRRRR.)

 

So just to let yourself be at peace, just assume that he did have early onset. There's no way to prove it one way or the other. You found it when you found it & are treating it now. I go thru the same thing wondering how long he went untreated. We had him at the doctor whenever he was sick, which wasn't very often when he was little little. After that first ear infection, he was sick off & on for 1.5 years (sinusitis, "viral pharyngitis," allergies)...got his tonsils out & wasn't sick at all for 1.5 years...then he got strep throat in Dec '09 & a month later we descended into PANDAS. Nobody at the doctor's offic ever mentioned PANDAS as a possibility...actually steered me away from it when I finally found it on my own after our first MAJOR exacerbation last year. Guess I should make it clear that was my EX-doctor's office.

 

And not to make you slap your head & utter "DOH!", but I just now looked up the cause of pink eye...it's streptococcus pneumoniae. DANG! So...that might answer your question.

Edited April 15, 2011 by SarahJane

[Wilma Jenks]

My child was sick from day one. In retrospect I saw it the first day in hospital. She would not sleep and was agitated. Took her home and she slithered up my chest onto my shoulder at 5 days old. No joke. At 10 days old she developed a walnut sized lump under her ear. It got worse and worse. Never gets tired. Distorted thinking, agitated, impulsive. Super odd thoughts. Will get super mean if you tell her she is getting big. Never like babies and was very confused about it. Won't come near me, because she said I look really wierd. Not sure if its all PANDAS. Severe OCD and its getting worse. Wishing you the best. Oh, and tons of wax in one ear. I think u mentioned that too.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[tpotter]

We're certain that PANDAS started earlier. Our son had his "first" symptom when he was 15...hospitalized for being suicidal. But, he's also diagnosed with Asperger's, and had strep a lot when he was younger. Tonsillectomy and even stomach surgery (almost burned a hole in his stomach...now I think it was/is strep related.) We found evidence of handwriting changes from 12 years ago purely by chance...changed dramatically overnight.) So we know for sure it started earlier. How early? Don't know...could have been congenital, could have been MMR vaccine (had major allergic reaction to it...broke out in hives, etc.) So, yes, definitely started sooner than we were aware. I think the Asperger's symptoms are also related, as IVIG has been helping social skills awareness!

[airial95]

We are one of the active "young" cases on here. My son is now 3 1/2 (wil be 4 in late October), and we were dx with PANDAS at 26 months - in January 2010.

 

In our case, he was a sudden onset, but his sudden onset happened at about 19/20 months old in May 2009. The first major change was his behavior in school. We got a report that he had bitten another child one day and ended up being 4x by the end of that week! Normally this would be cause for dismissal at our school, but until that point, our son had never even had ONE SINGLE instance of lashing out at another child, he was the floor model for toddlers. He got bitten A LOT at school, and so even the staff assumed it was a matter of time before he picked up the behavior and started retaliating and didn't make a huge deal of it.

 

It kept getting worse. We moved his day care (temporarily - the other place turned out to be a NIGHTMARE!!) and that's when the seperation anxiety kicked in BAD - he would cry the entire 8 hours we were gone at work, and this lovely place never even tried to comfort him! (I'd come at the end of the day and he'd be in the corner by himself face swollen from crying - and there would only be 1 or 2 other kids in the room - no reason that teacher isn't engaging my kid!!! Again, like I said - nightmare). We thought it was from being in a new place.

 

We moved back to his old day care, and things were better for the first couple of weeks - but then went down hill fast again. This is when the OCD really started to kick in (we just didn't realize that's what it was at that point.) The staff was great, and we tried every behavioral intervention imaginable! We even wrote a letter allowing them to put him to nap early and skip lunch if necessary (we now know that most of his OCD is food related, and lunchtime often ended up in an eruption of throwing chairs, food and children - since they have snack right after nap, we weren't worried about him missing lunch from time to time.) Nothing worked.

 

Our biggest problem, was that all of his behavior was actually age appropriate. So we just thought he was having a really tough time with the terrible twos. We repeatedly asked our pediatrician for advice, via email and in person when we happened to be there for either of the children, but nothing was working. My hubby and I are the BEST at ignoring a tantrum - and it worked like a charm for my daughter (still does), but our son would still be going after an hour, two, three, we knew something was up.

 

Finally, one Monday in January 2009 I got a call from day care that I had to come get him, he was having a meltdown of epic proportions and he was in the office, they couldn't calm him. I got the SAME phone call the next day. When I went in the next day (a Tuesday), the director pulled me aside and told me that she felt something was seriously wrong with our son, she felt comfortable being that direct with me because she knew we were doing EVERYTHING possible to help him - but she didn't even recognize him when he had these episodes the past two days.

 

We were at the pediatrician at 8:30 Wednesday morning and by 9:00 we heard PANDAS for the first time. It was presented more as an option to rule things out, than a clear dx. "There's this PANDAS thing, controversial, blah blah blah, but 30 days abx to see what happens, or I can refer you to a pediatric psych who'll want to medicate him." The dr noted that he had an impetigo infection about 2-3 weeks before he got our first email about behavior advice - so the timeline could fit.

 

When we brought him back to school after that appointment, we sat down with the director to try to explain to her (what little we understood at that point in time) what was up, but before we could tell her what the Dr. said she had asked us if we had ever heard of PANDAS. (She had just finished her PhD in special ed and apparently had been exposed to it somehow at school).

 

Within 10 days on abx he was no longer physically violent, within 14 the tantrums down to 1-1 1/2 hours from until he just passed out from exhaustion (not great by most standards - but by ours it was a MIRACLE!) Within 3 weeks we were somewhat functional as a family again.

 

I think the biggest challenge of an early dx is that most of the issues are actually age appropriate. I can honestly say that if we hadn't had a daughter 18 months older than our son and had gone through it all recently once already (normally), we might not still have a dx. EVERYONE we talked to about our problems said "that's what 2 year olds do" or "that's just how boys are", "boys are harder to potty train". Even both of our parents were telling us that. We never quite believed that, something in our gut was telling us something else was wrong. We waited 6 months from onset before we got help, but I can see how others, especially first time parents who hear others telling them how "normal" these things are might question their own judgement.

 

We did have the sudden onset - and we can date it to that first report we got for biting (which ironically, is still a tell tale sign he has strep -if he bites someone).

 

We were lucky that we had a day care director and pediatrician that were astute and on the ball.

Edited April 18, 2011 by airial95

[Johnsmom]

I dont know if you can call it ataxia or not. He wasnt that sick when he was a baby. I do remember calling the nurse though on a few occasions when he wouldnt stop crying. Also I did take him in to see the doctor on a few occasions because he was crying and pulling on his ear. When I look back I gave him tylenol just a little too much. Boy do I feel bad about that. I always thought he was teething because of all the drool and whining. Another thing that always freaked me out was his bout of leg slamming into the crib matress. He would lie on his back and lift his legs and then slam them into the crib. I wrote this down in a journal. One night I got out of bed 7 times! The doctor told me to wake him up to make sure he wasnt having some kind of seizure. Well I did and he woke up fine, so doctor said no seizure. He was 6 months old when he did this and it lasted about 3 weeks. I always thought that was weird!!!

 

 

Well as you know my boys have (had) autism, and I feel that PANDAS is my oldest child's main feature (although I think he was kind of a border kid either way). But with my 3yo, well he sounds a little like your son. In my best estimation, he had autism before his first onset of pandas (which was 15 months of age) but then who's to say for sure? He was definitely sick a lot his first year with ear infections, sinus, respiratory, you name it. I can't imagine that any doctor could look me in the eye and say that there is no way that any of those earlier infections was strep. With that being said, could he have had strep his first year and that's what made him look autistic? But really, even now when i clear strep, he still has speech apraxia, so there is no way that pandas is his only problem (also has mito dys, and the list goes on).

 

By the way, has he ever had an MRI? I ask because that ataxia you talk about happened (happens) to my 3yo who has chiari. I have always attributed it to chiari, but then I later found a correlation btwn his pandas episodes and his chiari exacerbations. So maybe the ataxia/pandas/chiari all happens at once due to the excessive inflammation/herniation of the cerebellar (sp?) tonsills. My son also has the very low tone which I guess one could say is the mito dys but I have also been told it could be the chiari. My son has photosensitivity as well as sound sensitivity (I think the photo is chiari and sound is pandas). Maybe something to rule out but then again why put him through MRI if you don't intend to have surgery. Oh, grabbing the back of the head in pain is another chiari symptoms. I'm not sure why I am talking so much to you about chiari (as if you need the added stress!), I guess it's the ataxia that sounds a little strange.

[Johnsmom]

Well the steroid burst gave us a child who was incredibly social. We were amamzed. I think that is the one thing I pray for the most. Are you doing monthly IVIG's?

 

Thank you for sharing.

 

 

We're certain that PANDAS started earlier. Our son had his "first" symptom when he was 15...hospitalized for being suicidal. But, he's also diagnosed with Asperger's, and had strep a lot when he was younger. Tonsillectomy and even stomach surgery (almost burned a hole in his stomach...now I think it was/is strep related.) We found evidence of handwriting changes from 12 years ago purely by chance...changed dramatically overnight.) So we know for sure it started earlier. How early? Don't know...could have been congenital, could have been MMR vaccine (had major allergic reaction to it...broke out in hives, etc.) So, yes, definitely started sooner than we were aware. I think the Asperger's symptoms are also related, as IVIG has been helping social skills awareness!

[Johnsmom]

Thank you for taking the time to share your story. I'll pray for healing for your child.

 

We are one of the active "young" cases on here. My son is now 3 1/2 (wil be 4 in late October), and we were dx with PANDAS at 26 months - in January 2010.

 

In our case, he was a sudden onset, but his sudden onset happened at about 19/20 months old in May 2009. The first major change was his behavior in school. We got a report that he had bitten another child one day and ended up being 4x by the end of that week! Normally this would be cause for dismissal at our school, but until that point, our son had never even had ONE SINGLE instance of lashing out at another child, he was the floor model for toddlers. He got bitten A LOT at school, and so even the staff assumed it was a matter of time before he picked up the behavior and started retaliating and didn't make a huge deal of it.

 

It kept getting worse. We moved his day care (temporarily - the other place turned out to be a NIGHTMARE!!) and that's when the seperation anxiety kicked in BAD - he would cry the entire 8 hours we were gone at work, and this lovely place never even tried to comfort him! (I'd come at the end of the day and he'd be in the corner by himself face swollen from crying - and there would only be 1 or 2 other kids in the room - no reason that teacher isn't engaging my kid!!! Again, like I said - nightmare). We thought it was from being in a new place.

 

We moved back to his old day care, and things were better for the first couple of weeks - but then went down hill fast again. This is when the OCD really started to kick in (we just didn't realize that's what it was at that point.) The staff was great, and we tried every behavioral intervention imaginable! We even wrote a letter allowing them to put him to nap early and skip lunch if necessary (we now know that most of his OCD is food related, and lunchtime often ended up in an eruption of throwing chairs, food and children - since they have snack right after nap, we weren't worried about him missing lunch from time to time.) Nothing worked.

 

Our biggest problem, was that all of his behavior was actually age appropriate. So we just thought he was having a really tough time with the terrible twos. We repeatedly asked our pediatrician for advice, via email and in person when we happened to be there for either of the children, but nothing was working. My hubby and I are the BEST at ignoring a tantrum - and it worked like a charm for my daughter (still does), but our son would still be going after an hour, two, three, we knew something was up.

 

Finally, one Monday in January 2009 I got a call from day care that I had to come get him, he was having a meltdown of epic proportions and he was in the office, they couldn't calm him. I got the SAME phone call the next day. When I went in the next day (a Tuesday), the director pulled me aside and told me that she felt something was seriously wrong with our son, she felt comfortable being that direct with me because she knew we were doing EVERYTHING possible to help him - but she didn't even recognize him when he had these episodes the past two days.

 

We were at the pediatrician at 8:30 Wednesday morning and by 9:00 we heard PANDAS for the first time. It was presented more as an option to rule things out, than a clear dx. "There's this PANDAS thing, controversial, blah blah blah, but 30 days abx to see what happens, or I can refer you to a pediatric psych who'll want to medicate him." The dr noted that he had an impetigo infection about 2-3 weeks before he got our first email about behavior advice - so the timeline could fit.

 

When we brought him back to school after that appointment, we sat down with the director to try to explain to her (what little we understood at that point in time) what was up, but before we could tell her what the Dr. said she had asked us if we had ever heard of PANDAS. (She had just finished her PhD in special ed and apparently had been exposed to it somehow at school).

 

Within 10 days on abx he was no longer physically violent, within 14 the tantrums down to 1-1 1/2 hours from until he just passed out from exhaustion (not great by most standards - but by ours it was a MIRACLE!) Within 3 weeks we were somewhat functional as a family again.

 

I think the biggest challenge of an early dx is that most of the issues are actually age appropriate. I can honestly say that if we hadn't had a daughter 18 months older than our son and had gone through it all recently once already (normally), we might not still have a dx. EVERYONE we talked to about our problems said "that's what 2 year olds do" or "that's just how boys are", "boys are harder to potty train". Even both of our parents were telling us that. We never quite believed that, something in our gut was telling us something else was wrong. We waited 6 months from onset before we got help, but I can see how others, especially first time parents who hear others telling them how "normal" these things are might question their own judgement.

 

We did have the sudden onset - and we can date it to that first report we got for biting (which ironically, is still a tell tale sign he has strep -if he bites someone).

 

We were lucky that we had a day care director and pediatrician that were astute and on the ball.

[Johnsmom]

I couldnt agree more!

 

Certainly the pattern of early illness exists in a subset of kids with ASD, and there is a lot of crossover between those dxs noted here on this forum and among the docs. My completely unfounded/uneducated guess is that it's either possible for it to start very young like this, or perhaps these types of things in the early years are an indicator that these children are more susceptible hosts.

 

Chicken meet egg...

 

TH

Edited April 19, 2011 by Johnsmom