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Tooth infection causing setback post PEX


Alex
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Hi all,

 

My son had PEX 5 weeks ago. I did a post last week about how he was doing well and improving but still with some issues. That week he had been complaining of a tooth ache and that he thought he had a cavity. In hindsight his PANDAS recovery seemed to be stagnating about that same time, but we were reluctant to admit it to ourselves. We brought him to the dentist last Tuesday and turns out he had an infected tooth/ tooth abcess. The dentist put him on erythromycin to fight the infection on top of the 200mg of azith he has been taking as a strep prophylactic. The plan was to see him in 2 weeks to see if the infection was gone.

 

As the week went on his OCD increased signifcantly, urinary frequency increased and moods went down hill. On Fri, three days after he started the eryth, after a terrible morning, we had the tooth removed. The oral surgeion said that it was unlikely that the antibiotic would have been able to get all the infection considering the shape the tooth was in. (We think we do a good job on the kids teeth by the way!).

 

Today, Saturday, the day after the tooth was pulled, my son had a terrible day, good amount of OCD, terrible mood, withdrawn and a mega rage the likes of which we haven't seen since before we knew he had PANDAS and he got his first antibiotics.

 

We are hoping that his immuine system was struggling to fight the infection and caused a PANDAS flareup and that things will settle down over the next few days. Our big fear is that GABHS was the infecting bacteria(getting a throat culture tomorrow), or that a different strep strain, or other bacteria is causing his body to produce the same harmful antibodies that the PEX removed.

 

Just wondering if anybody has any knowledge on something like this?

 

Thanks, Alex

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Alex and D,

 

So sorry to hear that this is happening. Unfortunately, I can't give you any help. Have you emailed or called Dr. Latimer with the details? We are also seeing the tics again, but as with IVIG, I think we may see a see saw effect here as well. I hope this is the issue in your case and things resolve again.

I assume that during the tooth extraction, they used some kind of sedation, do you think this maybe caused the moods afterwards?

 

Linda

 

Hi all,

 

My son had PEX 5 weeks ago. I did a post last week about how he was doing well and improving but still with some issues. That week he had been complaining of a tooth ache and that he thought he had a cavity. In hindsight his PANDAS recovery seemed to be stagnating about that same time, but we were reluctant to admit it to ourselves. We brought him to the dentist last Tuesday and turns out he had an infected tooth/ tooth abcess. The dentist put him on erythromycin to fight the infection on top of the 200mg of azith he has been taking as a strep prophylactic. The plan was to see him in 2 weeks to see if the infection was gone.

 

As the week went on his OCD increased signifcantly, urinary frequency increased and moods went down hill. On Fri, three days after he started the eryth, after a terrible morning, we had the tooth removed. The oral surgeion said that it was unlikely that the antibiotic would have been able to get all the infection considering the shape the tooth was in. (We think we do a good job on the kids teeth by the way!).

 

Today, Saturday, the day after the tooth was pulled, my son had a terrible day, good amount of OCD, terrible mood, withdrawn and a mega rage the likes of which we haven't seen since before we knew he had PANDAS and he got his first antibiotics.

 

We are hoping that his immuine system was struggling to fight the infection and caused a PANDAS flareup and that things will settle down over the next few days. Our big fear is that GABHS was the infecting bacteria(getting a throat culture tomorrow), or that a different strep strain, or other bacteria is causing his body to produce the same harmful antibodies that the PEX removed.

 

Just wondering if anybody has any knowledge on something like this?

 

Thanks, Alex

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Alex,

I don't want to sound like I'm offering false hope. Obviously the one to ask is Dr Latimer. I just want to mention what we've seen.

We are 6 weeks post-pex. Weeks 2-3 were bad - tics were worse and the cognitive fog was way way worse than before pex. But during a regular Pandas episode, our symptoms would be a bell curve. Symptom 1 would show up, then symptom 2, 3 and 4. Then he'd heal in reverse and symptom 4 would disappear, then 3, 2 and finally 1 would go away or at least subside.

 

Post-pex, we didn't see the bell curve. We saw fireworks. We'd see symptom 1 get worse. Then a flash of symptom 3. Then a half day of quiet. Then a few flashes of symptom 2. It was the same symptoms, but not the same pattern. Now, 6 weeks out, we are on a fairly steady course, even after a viral infection that fortunately didn't trigger anything.

 

I don't know that anyone knows what to expect because there hasn't been adequate tracking. But it does seem that it's not uncommon for there to be two steps back during a part of the recovery process.

 

I'm not trying to say there isn't something going wrong. I'm just trying asking about the pattern of symptoms in the hopes it gives you something to consider until you're able to reach Dr Latimer. Your family will be in my thoughts,

Laura

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Dr. K was telling me one of the ways they treat if there is a reoccurrence post IVIG is to go at infection aggressively HIGH dose antibiotics for 14 days or symptoms subside. However, he was referring to patients that had been over one year post treatment. I would talk to Dr. Latimer but keep up the antibiotics for current infection.

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Alex,

If it's any consolation, after 2 1/2 weeks without any physical symptoms, my son just came home from the grocery store and has been humming intermittently for the past half hour. Also saw a flash of chorea. However, he continues to be very nice to his sister. So all I can do is wait and see. We are hoping it is just a blip as part of the healing process - another "firework" - tho admittedly it's always the tic that terrifies me, as it is always "symptom 1". Only time will tell. But please let us know what Dr Latimer has to say.

 

Laura

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Hi Alex,

 

Did your son have nitrous oxide as an anesthetic during the procdure? The reason I ask is that it can cause a vit B-12 defficiency that can result in behavioral regression. My son had a reaction like this after his colonoscopy. We gave him vitamin b-12 shots and he improved quickly.

 

Paula

 

 

 

 

Hi all,

 

My son had PEX 5 weeks ago. I did a post last week about how he was doing well and improving but still with some issues. That week he had been complaining of a tooth ache and that he thought he had a cavity. In hindsight his PANDAS recovery seemed to be stagnating about that same time, but we were reluctant to admit it to ourselves. We brought him to the dentist last Tuesday and turns out he had an infected tooth/ tooth abcess. The dentist put him on erythromycin to fight the infection on top of the 200mg of azith he has been taking as a strep prophylactic. The plan was to see him in 2 weeks to see if the infection was gone.

 

As the week went on his OCD increased signifcantly, urinary frequency increased and moods went down hill. On Fri, three days after he started the eryth, after a terrible morning, we had the tooth removed. The oral surgeion said that it was unlikely that the antibiotic would have been able to get all the infection considering the shape the tooth was in. (We think we do a good job on the kids teeth by the way!).

 

Today, Saturday, the day after the tooth was pulled, my son had a terrible day, good amount of OCD, terrible mood, withdrawn and a mega rage the likes of which we haven't seen since before we knew he had PANDAS and he got his first antibiotics.

 

We are hoping that his immuine system was struggling to fight the infection and caused a PANDAS flareup and that things will settle down over the next few days. Our big fear is that GABHS was the infecting bacteria(getting a throat culture tomorrow), or that a different strep strain, or other bacteria is causing his body to produce the same harmful antibodies that the PEX removed.

 

Just wondering if anybody has any knowledge on something like this?

 

Thanks, Alex

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Hi Alex,

 

Did your son have nitrous oxide as an anesthetic during the procdure? The reason I ask is that it can cause a vit B-12 defficiency that can result in behavioral regression. My son had a reaction like this after his colonoscopy. We gave him vitamin b-12 shots and he improved quickly.

 

Paula

 

 

 

 

Thanks Paula, and everyone else for that matter. He did have nitrous oxide. I went out and bought some B-12 losenges as soon as I read your post. Each one has 83,333% of the Recommended Daily Alowance, which is great beacuse he won't need another one until January of 2238. He had a little better day today so hopefully we are still on track for recovery. I'll make sure to keep everyone posted.

 

Alex

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