Could my younger child have PANDAS too?

[riffleshell]

My older son was diagnosed with PANDAS almost a year ago. Pretty "classic" case, he had strep and then a week later his behavior deteriorated dramatically. We got a diagnosis immediately and he is doing well.

 

Now I'm wondering about my younger son (age 5)....could he have it too?

• He pees frequently and seems to have sudden urges. He is also not dry at night but he is a bit young for that to be a big deal.
• He frequently has a hard time falling asleep.
• He needs to have things "just right." He's can be controlling of his family's behavior and he wants us to do things just the way he desires, like that we walk up a certain side of the steps or do things in a certain order. He can get angry when these desires are not met. This is frustrating for us but does not seem at a clinical level.
• He is a very picky eater and is germaphobic.
• He has some separation anxiety, not awful, but more than most kids his age.

However, he's pretty much always been this way. My husband has jokingly described him as "OCD" for years. Definitely no sudden onset and I don't see a connection to strep or other illnesses. Also, on some level, he's clearly fine. He behaves well in preschool, he is outgoing, he has friends, he's a sweet kid, etc.

 

Here are my questions:

1) Am I crazy to think he could have PANDAS too?

2) How do you get a doctor to even consider this with no strep connection, no sudden onset and no truly problematic degree of OCD?

[pr40]

our ds has similar symptoms.

• He needs to have things "just right." He's can be controlling of his family's behavior and he wants us to do things just the way he desires, like that we walk up a certain side of the steps or do things in a certain order. He can get angry when these desires are not met. This is frustrating for us but does not seem at a clinical levels
• He has some separation anxiety, not awful, but more than most kids his age.

he also hoards things, has some repetitive arm movement, and changes voice all the time.

we consider that our child has PANS. he tested positive to myco and was given long term abx.

he also has some IGG lyme bends positive. btw myco and lyme, we have long term abx.

after a year and a half on abx, he had two great three month spells and we took him of the abx. at that point, he had a cold and symptoms returned with fury. we put him back on abx but symptoms are very much with us.

I hope others chime in and help explain if the symptoms you mention add up to PANS or not.

[Wombat140]

Hmm, how difficult was it to convince whoever gave your older son the diagnosis? If they were fairly open to the idea then, then I'd have thought that since your younger son has some OCD symptoms, and there is a test they can do, they'd consider it worthwhile just doing the test to see. At least, I would if I was the doctor. Good luck.

[airial95]

I hate to say it, but yes - not only is it possible, it's also likely. For a few reasons. First of, Dr. Murphy at Rothman has done research that has indicated a high incidence in siblings where there is a family history of autoimmune disease, rheumatic fever, or chronic strep. The correlation increases when the family history is on the side of the mother. So that makes it not only possible, but likely if you have any of those past issues.

 

One of the other prevailing theories of "classic" PANDAS is that it can be caused by a particularly virulent strain of strep, which is why you may see "clusters" of new cases in certain areas (ie Leroy, NY). If that is the case, unfortunately that also makes it more than possible to have more than one PANDA because let's face it - if one kid gets sick, the other likely has it too.

 

So there is the theory behind more than one - from a classic PANDAS standpoint (folks who deal with Lyme might chime in about congenital Lyme also being a possibility - but I'm not a Lyme expert so I'll let them handle that).

 

Now - for my personal experience. My youngest was the first diagnosed, he had very sudden onset at 19 months old. Unfortunately, while onset was so sudden that we all joked "someone must have slipped him the memo while he napped" - his behavior for months was chalked up to the "terrible twos". Everything he was doing could be explained as age appropriate - frequent urination (he was potty training, liked the attention), OCD tendencies (toddlers trying to control their environment, perfectly normal), picky eating (he's 2, what else is new), rages (not being able to communicate his needs). Well, after 6 months of the most epic terrible 2's ever, we noticed that he lost almost all language, his rages were so beyond control we couldn't leave the house, and even our day care agreed that something was seriously wrong. All his teachers, and even some of our close friends who work with special needs kids automatically thought autism. They were wrong. It was PANDAS. 3 weeks before he "got the memo" during nap - he had a strep infection. Our doc gave us 30 days of abx, and we were on our way down a much different path than autism.

 

As part of our treatment plan, whenever we saw a rise in symptoms or he got strep, we would automatically get the whole family swabbed to make sure no one had strep without knowing. His older sister often was positive. Almost 2 years after my son was diagnosed, we started to notice my daughter getting extremely moody - like she was going through PMS, but at 5 years old. She would cry over nothing, hide in corners and just be very sensitive to everything around her. We started to notice that these "episodes" always coincided with her brother's flares, and subsequently one or both of them having strep. Our doctor would always write her 30 days of abx when she was positive as a precaution (for her brother's sake), and these mood swings would always be over by the time she finished abx. It was difficult to determine if it was really PANDAS related, or just attention seeking behavior because her brother would be in a bat- crazy flare at the same time, drawing most of our attention. Our doctor didn't believe she could have it too at first, agreeing that it was just attention seeking behavior and somewhat PTSD on my part - always waiting for the other shoe to drop and looking for PANDAS everywhere.

 

Just as she started K, my son got strep - again (he got it ALOT the first 3 years), because of school starting chaos, we didn't get our daughter in to get swabbed right away. Over the weekend, her moodiness exploded into outright full blown OCD - no denying it. That Monday, we took her into the ped, she was + for strep, and he was convinced. For almost 2 years - every flare she ever had cleared with 30 days of abx, until last year, she got a bad case and we had to pull out big guns.

 

But it is very possible. My advice to you - keep a detailed log or journal for each child. Document behaviors, moods, meds, foods, etc... We used a numerical scale to try to keep emotion out of it (when I was stressed it always seemed rages were worse, but when I had to empirically rate them, I would realize that it was only 30 minutes this time, vs. 2 hours last time, so it really wasn't that bad). We also tracked when others around them were sick to look for patterns. It was extremely useful and helpful to see exactly what might be going on.

[WorriedDADNMOM]

Rifleshell----cool name!!!!

 

No not crazy. I have three kiddos....all Pandas/Pans. One with known strep and EBV-----debilitating anxiety. One with adverse reactions to vaccine MMR(worst kiddo by far) the whole gammut...never a strep infection, but had impetigo.......everything you listed pretty much...tics, chorea, tremors and all the psych stuff. 3rd kiddo had reactions to MMR with explosive anger at 2-3 years old....then again after 5yr MMR.

She started slight tic and we stopped it in it's tracks. With 3 kiddos, they all had variances and similarities.

 

Same thing with their milk allergies......1) severe eczema 1) with projectile vomiting and 1) SEVERE colic.

 

Different people, similar genetics, different immune reactions.

 

Agreed, your doc that diagnosed and treated Pandas should be able to confirm.....also, by worst dd was totally asymptomatic for strep....no known infections. Slightest exposure.....tics can come back immediately.