Increased flare when starting ABX?

[jennapow]

I am new to this PANDAS/PANS journey. My son is 10 and has autism. In addition he has a history of behavioral regressions about once a year. His mood has plummeted since about mid-October. In addition he is showing some other PANS characteristics including increased urinary frequency, fear of going to sleep, etc.

 

We were able to see Dr. K for an appointment on Friday. He prescribed a 14 day course of Augmentin and ordered lab work. DS has now had 3 doses of the antibiotic and it seems like he's getting worse! Last night it took him about 90 minutes to get to sleep. He kept saying he felt nervous and insisted that I stay with him. He woke up again at 3:30 screaming for me to come to his room and then asked that I stay in bed with him. Now he is pitching a huge fit about having to take a bath. He also doesn't want to be left alone in a room.

 

Just wondering if anyone else has seen an increase in agitation, fears, etc, when first starting an antibiotic. Is there such thing as a die-off reaction with the antibiotic? I'm not sure I'm going to make it through 2 more weeks of this!

 

His mood was so bad I kept him home from school all of last week. He's supposed to go back tomorrow but there's no way it's going to happen if he's still like this. Any insight would be appreciated. I of course have no idea if it really is PANS or his other autism issues.

 

Jenna

[qannie47]

Has he ever been on Augmenton before? Typically, you will either see a beneficial response/reduction of symptoms or no benefit, not an increase of symptoms. If he has never has Augmenton before, perhaps he can't tolerate it?

[ibcdbwc]

There could be die off or other reaction to that particular antibiotic. Does Motrin help reduce symptoms?

[MomWithOCDSon]

I don't know if this has any bearing on your situation, but below is a link to an older thread and some forum discussion on this topic, as well as an excerpt from a paper by Dr. Tanya Murphy on this topic.

 

http://latitudes.org/forums/index.php?showtopic=21349&hl=%2Bneed+%2Bhelp+%2Bunderstanding

[WorriedDADNMOM]

I would say for us, we did see an increase in some signs. Tics.....and.....letdown of mucous on previous asymptomatic infections.(other than behavior)

 

Are you on a DAN protocol???? There is a list of good practitioners......Here it is.

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/

 

We did talk to Dr K in Chicago upon learning about Pandas/Pans back in 2011. We did not want main stream medicine as we felt it was over their heads. We ended up finding a DAN doc for the behaviors..... the Doc in Gahanna(columbus area) OH whom we have been VERY pleased with.

 

If your child does not see one....I recommend seeing one that can:

 

1) debulk infections.

2) Chill immune system.

3) control inflammation.

4) Check for food allergies and others.

5) Supplement vitamins and minerals that are lacking.

6) Control and support future infections.

 

Finally, it really is a puzzle of many/various things that need looked at. It must be a comprehensive investigation into our kiddos to help them be the best.

 

PM me if you need anything else.

[emst]

Great advice above.

Also consider the full moon is often a culprit or at least part of the problem in the sense that a weakened immune system leaves kids open to infection and parasites

[jennapow]

Thank you so much for all of the resources. I am trying to read as much as I can. We used to see a DAN doctor, but it has been years since we have been in. I got overwhelmed with the whole process, especially with trying to get my kids to take so many supplements that they wouldn't take. We ended up just trying to work with diet and a few key supplements and we just stopped our follow up visits. Right now we are trying to manage this flare, which is so bad that school is ready to outplace my son. We also have an appointment with a psychiatrist for evaluation but I didn't want to start any other meds without looking into PANDAS first. We clearly need to do a lot more digging with his health.

 

We had another night where he wouldn't go to sleep on his own and wanted the lights in his room to be on. Managed to get him into school for a 2 hour window today. Hope willingly got dressed and went with me. There were essentially no demands placed on him and it was still hard for him. He just thinks the world is all wrong. Got blood work done today, which is also a victory, though it was a miserable experience.

 

Thank you again. It's helpful to see everyone's experiences.

[Sirena]

Jennapow,

Our DS7 (then 6) spiked a 104.5F fever one day after starting Augmentin. He was a mess but about 5 days later the fevers broke and it looks like an abscess broke free from one of his tonsils. That wasn't the end of it, but indicated deep tonsil infection. TSo maybe its a herx. reaction...Does he have an elevated temp? Have you tried a dose of ibuprophen to see if that helps with the behaviors? Ibuprophen isn't the cure, but it makes a huge difference and our kiddo probably wouldn't be able to attend school without it at this point.

[jennapow]

We have now completed 5 days of the antibiotic. DS has continued to show much more difficulty with being alone at night, and his urinary problems resurfaced last night (basically he goes to the bathroom urinates a normal amount, but then urine continues to spurt out for another 10 minutes or so). Behaviorally we have not seen much of a difference, other than Monday night. Monday he was cheerful, laughing, interacting with his brother, and not getting upset about things. Since then he is back to being irritable. He has not had a fever at all, but he did complain about a sore throat and a bit of a stuffy nose at bedtime last night. I am continuing to monitor and keep a journal.

 

Right now he is going to school 2 hours per day and they are basically letting him choose to stay in the resource room and do his own thing, or attend class. He has not gone into the classroom all week, but at least he is going into the building. We have his IEP meeting this morning and we will be discussing alternate placement for him because his school participation has deteriorated so much over last quarter. I just can't believe how far he has gone down.

 

I will try ibuprofen today to see if that makes a difference. Thanks.