PANDAS/PITANDS?

[greenmommy]

About 2 years ago my son started acting totally different. It came out of nowhere. Major separation anxiety, scared of everything, counting on his fingers, etc. Every day it got worse. I did some internet research - what could this be...to change into a different kid overnight. I found strep in the results. Took him to the dr and demanded they do a strep test - they did and it was positive. Took him 4 rounds of antibiotics and the one that finally beat it was omniceft. After we beat the strep - took about 2 weeks and he was back to normal.

 

Last week he started acting really anxious and scared. Saying things that are very extreme and stopped eating. He is not as bad as last time but totally different - very hyper too when playing with friends. He has been complaining of a stomach ache and head ache and then he got a very sore throat - said it felt like a dagger was in there. I just knew it was strep. Took him in and the test is negative. She put him on an antibiotic since he had been complaining on stomach ache and she thought the throat looked just like strep. After they sent the strep test off to the lab it was still negative. He is on clyndamyacin. He is acting a little better but not really.

 

What is going on - could it be PITANDS - does PANDAS ever turn into that? What should I do? Please help.

 

Alicia

[Suzan]

Hi, from what I've been told, once you have PANDAS you can react to other bacterial or viral infections in the same way. I would think either your son has strep and it just didn't show up on the test or he's having a reaction to something else. How long did they culture the swab? I've heard it should be 72 hours which may be longer than some dr's offices do it. My daughter's usually get strep in other areas of their body other than their throat. Our doc wrote on our last negative throat culture that it didn't mean she doesn't have strep.

 

Hugs to you!

[greenmommy]

Thank you for responding. If it is a virus that is making him act this way - do they still do antibiotics to make him come back to normal?

[Suzan]

Thank you for responding. If it is a virus that is making him act this way - do they still do antibiotics to make him come back to normal?

 

I think so. I'm still so new to all of this, but I understand that any episode now would be treated with antibiotics. After time, I'm told the antibiotics would stop working or not work as well. Then I guess IVIG would be the thing to try. I'm going to talk to our Ped. about IVIG this week. I don't know if he knows anything about it but it's a start.

 

Susan

[thereishope]

If the behavior is being caused by a virus, then antibiotics won't help. When me son gets a cold or allergies, I just have to deal w/ the increase in behavior until the virus goes away. I did give him Ibruprofen at the time of the cold and it helped. When the behavior is being cauased by something other than strep, the behavior changes is slightly increased, not to the extreme as it is w/ strep.

 

Clyndamyacin is used w/ strep carriers so if he has strep, thet should kill it.

 

Each time my son had strep, the behaviors associated w/ PANDAS varied. Ex. frist time heavy heavy OCD, second time, no eating, horrible rages.

[greenmommy]

If the behavior is being caused by a virus, then antibiotics won't help. When me son gets a cold or allergies, I just have to deal w/ the increase in behavior until the virus goes away. I did give him Ibruprofen at the time of the cold and it helped. When the behavior is being cauased by something other than strep, the behavior changes is slightly increased, not to the extreme as it is w/ strep.

 

Clyndamyacin is used w/ strep carriers so if he has strep, thet should kill it.

 

Each time my son had strep, the behaviors associated w/ PANDAS varied. Ex. frist time heavy heavy OCD, second time, no eating, horrible rages.

 

Thanks everyone! He is getting better (I think) and hopefully the symptoms will go away!

 

A

[EAMom]

Hi Alicia,

 

I'm glad your son is improving. Some thoughts I have:

 

1) the one antibiotic that could help if the PANDAS/PITAND trigger was viral would be Azithromycin since it is also anti-inflammatory and immune-modulating. Our immunologist thinks the anti-inflammatory effects of Azith. may be more significant for our dd (at this point) than it's antibiotic effects.

2) it is possible that your son has/had strep hiding out in the sinuses (or another location) that wasn't cultured

3) it wouldn't hurt to culture other family members to make sure there isn't an assymptomatic carrier in the household. We have this problem with our (non-pandas) younger dd who gets strep without symptoms (no fever, no sore throat). My PANDAS dd will react to the strep in the environment. She doesn't become full-blown since she is on Azith. but she does react.

4) according to Dr. Madeleine Cunningham (immunlogist Univ. of Oklahoma) any illness can cause PANDAS symptoms. If I remember correctly, this is due to breakdown of the bloodbrain barrier.

5) like Vickie already said...many find that Ibuprofen helps with PANDAS symptoms (decreases brain inflammation?). Our immunlogist has our dd on 200mg/ daily.