Teeth and flares

[cara615]

Ds still has all his baby teeth. Does every PANDAS kid flare when teeth fall out? Any kids that don't? I'm scared.

[Mommy2MCL]

I am frightened too! We have at least 10 baby teeth... I don't know the answer to that as I am just coming off a flare caused by teeth. But our doctor said increased precaution should be taken anytime you take them to the dentist. Since my daughter is on Zithromax he wants her to take several rounds of Augmnetin before we have a cleaning. I will now also know to call ASAP when it starts again, hopefully it won't I would think as you build immunity the flares should not be as bad... And I really hope that teeth are not always related to a flare.

 

 

Our Doc suggested NAC to help with inflammation... Any good or bad stories?

[Hrosenkrantz]

If it makes you feel better, my child flared when he lost a tooth in November. He lost a tooth the other night and no flare.

[cara615]

We take NAC to help detox. I think it works! Not sure about it helping with inflammation.

[JoyBop]

I think it really depends on the amount of inflammation.

[airial95]

mommy2mcl - I'm confused by your statement " I would think that as you build immunity the flares should not be as bad." It is not the strep itself that causes problems, but the immune systems response that is the issue, so that statement confuses me.

 

The basic function in PANDAS is that the body mistakes the brain as being strep - building an immunity to strep requires exposure - which triggers the attack on the basal ganglia, causing the flares. Flares can last long after the infection itself is gone because the bacteria itself is not the issue. There are some kids who have reported significant improvements at puberty, as well as in early adolescence/adulthood - but that has more to do with the changes within the immune system itself vs. built up immunity.

 

We have found after 4 years that interventions have helped reduce severity in flares (long term abx, T&A, IVIG), however without those interventions, flares have gotten worse with each subsequent exposure/infection. In my daughter's case, her flares were fairly stable with each new infection (my kids have had chronic strep problems), and after 2 years, she entered the worst flare we had ever seen - we still have not recovered her 100% from that flare 9 months later.

 

As for teeth - it's really hit or miss for us with them causing flares. Sometimes they just cause minor dust ups - but I've found it really depends on how long the tooth has been loose (longer = worse flare).

[Mommy2MCL]

I just meant that through healing I would hope to see less of a flare as we go through this. We are two months into diagnosis so I may have some misunderstanding or not come across the way I meant it so I apologize.

 

We have had two MAJOR flares due to teeth, so I am preparing for a long road ahead of us...

[cara615]

I also want to be clear by what I mean as a flare. To me a flare is different then an episode. We have had 2 episodes and they were both major. My ds could not stop ticcing for a second. he was screaming on the top of his lungs 80 times a minute. Jerking his head to the point where we thought he would injure himself. He did bang his head on the wall and got a black and blue. He was flapping his arms forcefully. he would have not been able to function in school.

 

Flares on the other hand is where his tics become slightly elevated from baseline. We have only had one flare so far since diagnosis so I can't say how severe they will ever become. The one we just went through was not that bad. Although it took about three weeks to resolve and we are still not 100% resolved. We are pretty close to baselone though.

 

I have even experienced what I have heard described as a "popcorn" flare. This happened the other night and lasted about 30 minutes where he developed a brand new tic (turning his head to the left) every 30 seconds or so. It was weird but only lasted 30 minutes and has not returned. Ugh.

 

So am I right in saying there is a difference between a full blown episode and a flare? Or do y'all use these terms interchangeably?

[JoyBop]

I think its all relative and we all have our own pet words for symptoms. I also call a flare any upheaval of pandas symptoms. I use the teen popcorn flare the same way you do as well, a period of less than a day, but typically minutes to hours of symptoms and then they are gone. There are different degrees of flares so I might refer to one as a major or minor flare. But I'm sure we all have our own terminology. I call the serious overnight onset a crisis!!

[chubbermommy]

cara615, I'm glad you mentioned that about your DS - the flapping arms. I was wondering if that could still be qualified as a tic. My DS is having a flare, it's been almost a week since he developed this new tic where he's punching/windmilling/flapping his arms and kicking his legs. Sometimes he's banging into walls and furniture. Other times, he spins and jumps and comes at you like he's itching for a fight but it's all involuntary. Bizarre. Sometimes we all have a laugh because it does look like he's doing some interpretive dance moves. Just happy he is able to laugh at the situation.

[cara615]

Yes, my ds's flaps were more like typical ASD flapping except he only would do one flap at a time, therefore I assumed it was a tic. he hasn't done it in ages. His 2 main tics right now are a a very low and quiet grunt and a slight head movement. he alternates but as time goes on they get less and less.

 

Ds also grinds teeth from time to time as well. He has worn away a portion of his top two teeth! yikes.