pandas and zebras should work together

[EAMom]

Even the doctor who diagnosed our son with PANDAS, who would not consider steroids, referred us to a psychiatrist for some anti-anxiety meds.

 

And .... I'm sure that same pediatrician would not hesitate to give your son steroids for a bad case of poison ivy!

[matis_mom]

Even the doctor who diagnosed our son with PANDAS, who would not consider steroids, referred us to a psychiatrist for some anti-anxiety meds.

 

And .... I'm sure that same pediatrician would not hesitate to give your son steroids for a bad case of poison ivy!

Exactly. I guess they have to SEE the inflammation in order to use steroids. Maybe if they could actually SEE the brain swelling, things would be easier. But that skull kind of gets in the way... can you imagine if the brain wasn't surrounded by bone what our kids would look like during an exacerbation? It'd look a lot more scary than poison ivy rash!

[Doug]

Hi everyone!!

Now let's toss my little girl in

we think she has PITAND

All of her blood work is fine and has

to our knowing and the blood work has never

ever had strep... BUT she had about 10-15 ear infections in her first 2 1/2 years of her life

But she has this.. we are 7 weeks out from

having ivig with dr.K he is the greatest

Her doc did know what PANDAS was praise the lord!!!

and after her 3 melt down in a year and a 1/2 I can say

we are holding our breath...and mabey getting our life's

 

back on track,I am like everyone else I hate to say it out loud.

We wake up everyday and just look at her to see how the day is going to go..

so far so good

Tracie&Doug

[thereishope]

Something else to add is how some long term "chronic" PANDAS cases may have been sudden onset that wasn't recognized because of the age of the child when it surfaced. Then, as the years pass by, the parent does kind of forgets how overnight the child became colic, or stopped sleeping through the night, or became overly clingy. And I can see a parent forgetting that since everyone around them would tell them that's how a baby and toddler is like. If the child has OCD as a toddler, a pediatrician might say those tendencies are acceptable because kids like routine and thrive with them. If the child continues to wet themself or the bed, the doctor will say it's part of potty training. So many PANDAS or PITAND symptoms can be easily dismissed in younger kids as a part of growing up.Then over time it just worsened and the lines become more blurred.

Edited April 7, 2010 by Vickie

[dcmom]

I totally agree with Vickie. I think all pandas cases are probably sudden onset. It is just that some onsets are milder, and at a stage where the issues can be passed off (for the time) as developmental. Then over time, without proper treatment, with new illnesses, things worsen. When a parent looks back, it seems the child always had issues. I don't think anyone wants to exclude these kids from being treated, or being part of the "club". I do think, however, as far as research studies go, it is important for the doctors to set some clear parameters- in order for the study to be accepted in peer review. (but hey, I am not a scientist).

[Johnsmom]

I totally agree with Vickie too. I swear my kid started around the age of 1.

He had this obsession with my hair. Oh its just a comfort thing people would tell me.

My mother in law said my husband used to do that to her. So I was poo pood off. Now my

sister says that was really weird when he did that and my mother in law agrees. My son would

get on his knees and face me on my lap and just stare at my hair and touch it.

I remember him doing it while I was trying to talk to people too. It lasted a few

months and then went away. It was so annoying. He had pink eye right

around the time this started. Weird!

Ann

 

I totally agree with Vickie. I think all pandas cases are probably sudden onset. It is just that some onsets are milder, and at a stage where the issues can be passed off (for the time) as developmental. Then over time, without proper treatment, with new illnesses, things worsen. When a parent looks back, it seems the child always had issues. I don't think anyone wants to exclude these kids from being treated, or being part of the "club". I do think, however, as far as research studies go, it is important for the doctors to set some clear parameters- in order for the study to be accepted in peer review. (but hey, I am not a scientist).

[airial95]

I'm a mom of one of those little guys - my PANDAS son is only 2 1/2 and his sudden onset came on a month before his second birthday. And for months all we heard is that "he's 2, that's what 2 year olds do."

 

Our son's sudden onset came in the form of biting. My extremely laid back, non-violent toddler became extremely aggressive in the course of a single day. We went from never having any sort of violent incident (not even hitting his sister when she stole his toys), to biting every day at school, sometimes multiple times a day. Just like most parents, we initially thought "terrible twos" and other excuses, like how often he'd been bitten at school, it was just a matter of time until he picked up the behavior. As his behavior escalated, we continued to make "excuses" for him - like he was over tired, sick, his schedule was off, whatever. We did have conversations with the Pediatrician about his behavior, but it was always in the context of "what else should we be doing, our techniques aren't working." Well, they weren't working for a very obvious reason. We were looking for parenting advice, not a reason for the behavior.

 

It took a vacation that my husband and I went on with our entire family for me to begin to suspect that something was seriously wrong - about 2 months after the onset. I'd never seen my little man like that, and it broke my heart. I spent hours each day in the room alone with him while he raged. I started to see something in his eyes and body language that was completely unrecognizeable to me. My husband and family continued to make excuses but I wasn't so sure.

 

It wasn't until another 2 months later when his school, and even a nurse at the Dr's office, reached the same conclusions that something was seriously "wrong" did my husband begin to open his eyes and stop making excuses (and thinking I was crazy).

 

The bottom line is we're parents, we love our children more than anything, and we don't want them to be perfect, we don't want to believe that something is ever seriously wrong, so as long as the excuses fit - his age, developmental stage, rough time at school, etc... we'll keep making them until the pattern becomes so long term and obvious it hits us in the face.

 

I think that's the problem with the sudden onset criteria, it's our human nature as parents to find reasons for our child's behavior, and unless something is painted in black and white, we're reluctant to give in to our fears of something being wrong - so we miss it.

 

It may not be popular to suggest that part of the reason some of our kids don't fit the "sudden onset" criteria is because we as parents were looking at things with blinders on, but I'm sure most parents here have done it - after all hindsight is 20/20.

 

My pediatrician, who we've been blessed to have, diagnosed our son with PANDAS, despite the initial negative throat culture, and has already told us that long term abx is likely in our future. His approach is exactly what we're looking for on this board - let's try this treatment first before we go down the path of psych meds - it can't hurt. Fortunately for us, it's working - I recognize my Bummy again. But our Dr. put it very well when he told us that yes - all 2 year olds are OCD and ADHD by nature at this stage of development, but there's a limit to that OCD and ADHD, and you just "know" when it goes beyond normal, but you have to be open to seeing it.

 

I understand that my view may not be popular, and that our journey to a diagnosis and marked improvement has been relatively short (6 1/2 months so far) may affect my opinion. But it's hard to identify "sudden onset" as a parent if we're not inclined to acknowledge it if we see it.

 

I completely understand if the hate mail starts pouring in!

[simplygina]

I believe my DS, who is now 10, had his "sudden onset" a few months before his 3rd birthday. He also began biting kids at the daycare. The other major "sudden" symptom was the extreme noise sensitivity. Since DH tends to be rather anxious, I figured he just inherited that from his dad. I knew things weren't right with him but I thought it was just an extreme case of terrible twos brought on by not loving his daycare and me being pregnant. I knew I'd be having the baby soon and quitting my job to stay home so I figured it would resolve itself. But he got kicked out first. My sister watched him for the last 2 months and he did do better. I think by and large because he wasn't exposed to so many germs.

 

For the next year he was home with me and the baby and did much better, though he was not an easy child by any stretch of the imagination. Again, I just thought it was the strain of potty training and the new baby plus changing his routine. He did really well during his two years of pre-school. He didn't get sick very much and I would have to say that the year he was 4 was one of my favorite years so far.

 

I think DS probably started having PANDAS issues at around 2 after tons of ear infections. We are that typical family that went the psychiatric route with little to no results. What ticks me off is that I started asking about PANDAS when DS was diagnosed with OCD at 8 and have asked both doctors and therapists with no one thinking it was a possibility because they didn't know anything about it and didn't take the time to find out. He's 10 now and we've been dealing with all of it for about 8 years. Basically my son's entire childhood has been tainted by this stupid illness. It's only when he's doing well that I remember that he was such an easy baby and is actually very charming and has a fantastic wry sense of humor because for so much of his life he has been impatient, angry, impulsive, short-tempered and sharp tongued. I've always known that he will be OK eventually though because underneath it all he really is an amazing person with a huge heart and a strong spirit. We're not there yet but we'll get there.

[Iowadawn]

No hate mail just our experience with a more than likely chronic case of PANDAS for our 11 yo son. It took 3 child psychologists, a LMHC, pediatrician, numerous developmental type professionals and a sharp young psychiatrist & infectious disease doc 9 years after it probably all started to finally get a PANDAS dx for our alphabet child. And then another 8 months to find this forum and another few months to Dr. K. It wasn't because we were in denial that there was a problem with our son that we didn't get the proper help sooner. We all have so many variables/resources (not just $$) in our lives that can determine how we finally come to the dx of PANDAS. Why "the stars all align" more quickly for some parents (or God forbid, not at all) and proper trx is initiated has so much more to do about fate (I'll not go into my Christian beliefs about this) than whether we parents are avoiding searching for what is really wrong. That's a heavy burden to carry. I shutter to think how many families haven't the foggiest clue about PANDAS, let alone have found this forum or the right doctor/professional to help their young child whom they know is not well. -Dawn

[AmySLP]

Back some time ago I remember responding to a post asking about children with early and chronic dx. of strep from infancy. When we are all talking about sudden onset and normal developmental behaviors, how do you weed these out in a very young child. My daughter (5), dx. PANDAS at age 4, had several episodes of diagnosed strep before age 3. Her first dx.-- at 8 WEEKS old, again at 4 months old and so on through age 3.

 

She had some quirky behaviors, primarily hypersensitivity to sounds and some other of what we all joked to be "type A" personality traits even as a two year old. I have always considered her a sudden onset case, b/c I can pinpoint the third week of July 2008 as the point where she exhibited habitual and OCD behaviors that I had never seen before, but in hindsight I wonder if those things that we thought were her "personality" developing as a toddler, were a result of this really early onset and chronic strep pattern since infancy. It is not typical for pediatrician's to test for strep at early ages-I was fortunate to have a doctor who did. We treated those infections (I do wonder if any were missed) but my daughter still developed PANDAS at age 4. So now it makes me wonder-Was my daughter's case a sudden onset or was all this brewing until she had an exacerbation in July 2008 at nearly age 4, when new symptoms that were too obvious to ignore or call "personality" issues arose.