PANDAS starting months after strep inf. ?

[ziva]

Ok, I have two PANDAS kids...DS7, and DD6.

 

They were both pretty easy to diagnose, as they both got strep and within 24 hours and then had HUGE behavior/pshyc changes. My pediatrician knew right away.

 

My DS4 also had strep (back in march/april), but seemed to get it under control with 2 rounds of abx. We did two rounds just to be sure, since we didn't want to re-infect my other two.

 

Since discovering PANDAS in my other two, he has been clingy, and more aggressive...but not too bad. He has always been a pretty mild mannered boy. Never really threw fits etc. But now when he gets upset, his first reaction is to kick/hit/throw/push/punch whatever or whoever is near him, or caused the drama...but I am usually able to calm him down. He is also scared going to bed, and often ending up in our room.

 

I assumed that it was because of all of the extra attention my other two were getting, and watching the other two with all of the rages/aggression.

 

The other day when we were out shopping, he threw a fit that lasted 45 minutes. He has NEVER thrown a fit like this one..ever. It was so like how my PANDAS kids rage. I was able to keep things ok for about 15 minutes until we had to check out. Then he just went crazy. Screaming at the top of his lungs..kicking, hitting, growling, not letting go of the "mini" cart...so we were dragging that along with us trying to leave. Of course we were blocking the entrance/and exit. It was horrible.

 

**But, on a side note I just have to say that a woman came up to me and said "ok where's your car, lets go, I'll push the cart (my DS7 and DS6 were in the cart). And while I was crying and carrying my screaming/kicking DS4, she pushed the cart and hung out there with me for 15 minutes until I could get my son buckled in. She talked to my kids in the cart, and was so happy and distracting for them. She was like and angel Then made sure I was ok, and could get my other two in the car, and told me to hang in there, things were ok and was just so sweet. And while this was happening 3 other people stopped to say encouraging words .... which meant the world to me.

I always feel so judged/like I am the worst parent ever when one of them rages. That pouring of support my way will definatly be in the back of my mind next time this happens So nice to know that there are some really great people out there!

 

When I spoke to my DS4 when we got home and asked him why he acted like that, he said sometimes his brain tells him to do things...sometimes he doesn't listen, but sometimes he does. He apologized, and has been ok the rest of the week.

 

So my big question is....could he have PANDAS and just be so mild at the moment that I wouldn't really know.

Has this happened to anyone else?

 

Thanks

Edited July 5, 2011 by ziva

[Tamistwins]

Ziva,

 

I'm sorry for that whole ordeal you were blessed to have such an empathetic woman there to offer assistance and a distraction. It's great that your other two kids were calm. Sometimes I have all 3 having a fit at same time it wears it's toll on me. Anyway it sounds likely that your 4 yr old also has pandas you should run some blood work to see what's going on with him. I have 8 yr old b/g twins who have pandas. My daughter also shows Lyme exposure on bloodwork. My two year old is such a good kid. He speaks

so well and explains what he feels and what he wants. He is also being treated fir pandas. For the most part he is a

pleasure to be around but he too gets his moments and

has a separation issue. I can't go into bathroom without him

screaming and kicking at the door. Every pandas child presents differently. All 3 of mine have high Cunningham scores but they act very differently.

Good luck I hope they all get well!

Tami

[Dedee]

Yep, I agree with the others. I say have him tested. Could be a couple different things. He could have a current strep infection and not be showing physical symptoms, or another infection sparked the PANDAS. My daughter only had strep once, and she was triggered by a flu mist. After some testing we found out she has myco p. My other PANDAS son is strictly strep triggered. I would get on this early if I were you. Take my word for it, having three with PANDAS is no fun. Get it under control as quick as you can. Best of Luck.

 

Dedee

[MomWithOCDSon]

One of the interesting things that Dr. Swedo has said in her presentations, and it stuck in my mind because of our own experiences, is that the temporal relationship between exposure and behavioral manifestations tends to change with subsequent exposures.

 

She has said that a 5- to 9-month lag may occur with the first exposure and presentation of PANDAS; however, with subsequent exposures, the temporal relationship tends to shrink to the point that, after 3 exposures or so, the child may actually present with PANDAS behaviors BEFORE a strep test will render a positive result!

 

The link to this video has been posted before, but I have found it very useful in terms of reminding me of some of the key findings and perspectives of Swedo and her team at NIMH.

 

Swedo Video at Mind Institute

[nicklemama]

I'd be testing him.

[ziva]

I just called and made an apt. for bloodwork. I made it for all three just to check and see how everything is going since my DS7 seems to be in a slight flare.

 

I just HATE having to take them in for bloodwork. Makes us all so sad. I wish they could have the laughing gas like they used to do at the dentist to take the edge off

 

Thanks again for the help and info!

[Stephanie2]

From what I hear, the first onset can happen weeks/months after a strep infection. I believe it happened that way with both of my boys (way back when...). The only other thing I can think of is that he developed a clostridia infection from the double antibiotics (did he receive probiotics?), but since you have two other pandas boys and he did have strep recently, I'm thinking pandas. Mabye the antibiotics didn't clear it, or he is just now reacting with high antibodies...?