Movement and handwriting

[faith]

mrigsby,

see you are having the experience I wish I had (positive strep results regardless of symptoms) so that I could also go "ahHA!".... If your child shows strep again despite being on 10 day course of antibiotics, obviously it was not eradicated, so longterm should be indicated at least. However, you say you saw no improvement in any behaviors or issues? (the laughing, etc?) maybe a different antibiotic or higher dosage? what are his symptoms again? any tics or obvious ocd? you are going to do the 5 day steroid? the effects of this may be temporarty, however, so just be prepared for that.

 

keep us posted.

 

Faith

[peglem]

My daughter's pediatrician was kind of skeptical with PANDAS at 1st. He'd just never seen it before. But, after seeing the pattern of me repeatedly being able to know just from behavior that my daughter was positive for strep, he has become a believer and our biggest supporter. Sadly, he's not getting much help with this from the specialists he's sent us to. That pattern is important! That is exactly what happened with my daughter. She'd get a course of antibiotics, then 3-5 days after finishing, behaviors would flare and she'd test positive again.

I hope you have a good experience with the ENT. The one we saw was the biggest j***a** about PANDAS. He was adamant that strep CANNOT cause behavior problems.

Does your son have any "real" strep symptoms? Forgive me if you've already answered that question- I scanned the thread for it and didn't find it.

 

We'll finally be seeing Dr. Latimer next week. We are praying that this will be the beginning of the home stretch for us!

[Allison]

Hi, Mrigsby,

You have my support as well -- I really feel for you!

 

Here's some more free advice:

 

1. ENT specialist helped my dd with her sinus infection by prescribing steroid nose spray at same time as the 5 day steroid course and antibiotics her pediatrician prescribed for PANDAS. The ENT didn't know anything about the weird-sounding stuff, but just thought the spray would help at the same time as the other meds.

 

2. Tell us about your support system for YOU. Took me 5 years to figure out how to get my "oxygen mask" on me first, but now that I am, it's helping dd and the whole family way more than before. I see a great therapist weekly, and I'll be starting group therapy soon. Turns out my daughter's episodes triggered PTSD (post-traumatic stress disordor) in me because my mom had a mental breakdown when I was a kid. Go figure -- I fall apart when people I love are falling apart! Hmmm....

 

3. Take advantage of this next round of meds to take time to find a new Dr and new medical guidance to treat your son for PANDAS. Call everyone you can, email the other mom in Kentucky, find out about your insurance coverage limits, etc. Clearly your son is not perfectly healthy, and that Dr. should know better than to tell your son he'd do the test to "humor" you. Not good psychology, let alone bedside manner. Ditch him and move on!

 

4. Start a new thread for others to support you better. Call it, "Need Support and Info" or "Need to Ditch my Dr." or something like that. I didn't read this thread for days because of the topic title.

 

5. As you face the new year, please know that we are all with you, because we've all been there, and we all continue to move forward through this experience; together.

 

Allison

[mrigsby]

To faith and Peglem

 

Harley shows no signs whatsoever of strep, however we finished a 10 day course of Augmentin, 1500mg a day on the 27. I saw no improvement while he was on the antibiotics but everyday since he has been off of them he has became more fidgity and hyper. His emotional lability is driving us all insane. He acts like he needs constant attention from us, yelling and talking loudly constantly. His tics have been flaring up again and he has this kicking thing going on. He can't walk by any of us without kicking at us. If he gets up and walks across the floor he will do a high kick 3 or 4 times. He's picking fights with his little brother and threatening him every time he turns around. I'm starting to fear that he might actually hurt him. He takes his fist and knocks on the walls constantly and hollows "someones at the door." Then he will laugh a goofy laugh that goes on forever. Even though we have been getting on to him and telling him we know that no one is at the door, he still continues to do it constantly. I have noticed that at least for the last couple of days, his eyes are dialated for a couple hours after it gets up of the mornings. Anyways, I took him back to his doctor today and he tested positive again for strep. So, today we started another 10 round of Augmentin, 1500mg a day. He also gave Harley a 5 day prescription for steroids. I hope and pray that they will kick in and give us a sign of improvement.

[momofgirls]

So your sons throat culture was still positive? That is very upsetting and I hope other parents here chime in on this but I don't know if steroids are a good idea if he still has an active infection. I am NO expert so talk to some other parents but I am so glad you got another script for antibiotics! Stay on your pediatrician about continuing the script and even consider augmentin extended release. High dose if the regular stuff doesn't help. You are on the right path now and don't back down. Your gut was right all this time.

[peglem]

So your sons throat culture was still positive? That is very upsetting and I hope other parents here chime in on this but I don't know if steroids are a good idea if he still has an active infection. I am NO expert so talk to some other parents but I am so glad you got another script for antibiotics! Stay on your pediatrician about continuing the script and even consider augmentin extended release. High dose if the regular stuff doesn't help. You are on the right path now and don't back down. Your gut was right all this time.

 

As a carrier, my daughter tested positive for strep w/o having an active infection. It really confuses doctors when that happens. A 5 day steroid burst improved things for as long as it lasted. She got sick immediately after the 5 days though. She did not test positive for strep at that time (she was on full strength abx), but the burst coincided with cutting molars and dental work and her first period...so I'm not sure what caused what.

[momofgirls]

Peglem

So what if the child is a carrier then? I guess that confuses me too.

 

 

 

So your sons throat culture was still positive? That is very upsetting and I hope other parents here chime in on this but I don't know if steroids are a good idea if he still has an active infection. I am NO expert so talk to some other parents but I am so glad you got another script for antibiotics! Stay on your pediatrician about continuing the script and even consider augmentin extended release. High dose if the regular stuff doesn't help. You are on the right path now and don't back down. Your gut was right all this time.

 

As a carrier, my daughter tested positive for strep w/o having an active infection. It really confuses doctors when that happens. A 5 day steroid burst improved things for as long as it lasted. She got sick immediately after the 5 days though. She did not test positive for strep at that time (she was on full strength abx), but the burst coincided with cutting molars and dental work and her first period...so I'm not sure what caused what.

[EAMom]

I think you should wait on the steroids if the strep test was still positive. I have a concern that your Harley's strep is intracellular.

 

Azithromycin is going to be better at clearing intracellular strep than augmentin. Clindamycin would be another option.

 

Personally, I would rec. a month of full-strength Azith first...and then consider adding on the steroids.

 

It doesn't matter much if your child is a carrier. It basically means he's not going to have obvious symptoms when he does get strep and he will be harder to clear. Our assymptomatic (hopefully non-pandas) younger dd is a carrier. We were not able to clear her with Augmentin but have sucessfully cleared her several times with a regular 5 day course of Azith.

[momofgirls]

EAMom

Ok, I really want to understand this...if a child is a carrier, can they be cleared of strep? Or does it just keep coming back? How does that affect your pandas child...being around a carrier?

Kim

I think you should wait on the steroids if the strep test was still positive. I have a concern that your Harley's strep is intracellular.

 

Azithromycin is going to be better at clearing intracellular strep than augmentin. Clindamycin would be another option.

 

Personally, I would rec. a month of full-strength Azith first...and then consider adding on the steroids.

 

It doesn't matter much if your child is a carrier. It basically means he's not going to have obvious symptoms when he does get strep and he will be harder to clear. Our assymptomatic (hopefully non-pandas) younger dd is a carrier. We were not able to clear her with Augmentin but have sucessfully cleared her several times with a regular 5 day course of Azith.

[EAMom]

We are always able to clear our carrier dd with Azith.

 

Our carrier has been GABHS positive 4x since we first learned of PANDAS in March 08 (neither child had ever had a strep culture b-4 that since they don't get classic red sore throats with strep and all fevers were presumed viral by docs).

 

#1 In March 08 carrier dd was positive on the rapid (and PANDAS dd was also positive culture, this was 2mo. after FEVER/onset of behavior change when PANDAS dd was in the hospital severe full-blown PANDAS anorexia). Both girls were placed on Augmentin.

 

#2 When carrier dd was tested 2 weeks after stopping Augmentin, she was positive again...so it never cleared. We then tried 5 days of Azith...and she was strep negative 2 weeks after that last dose (so she really cleared).

 

She stayed clear all summer.

 

#3 In Oct 08 (we got a strep notice from her school, and PANDAS dd's behavior was deteriorating) carrier dd was positive again. She cleared again with 5 days of Azith. (we re-culture 2 weeks after last antibiotic dose).

 

#4 In late December 08 we had another positive culture in our carrier dd (after another strep notice). PANDAS dd also had some behavior changes and re-occurance of tics/movements. Carrier dd cleared again with 5 days of Azith. (tested neg. 2 weeks after last dose.)

 

Ironically, I got strep in April 09...and our carrier did NOT get infected. Go figure. PANDAS dd has severe handwriting deterioration which improved once I started abs.

 

So far (we check periodically) carrier dd has not had strep yet this school year. We also haven't gotten any strep notices from school.

 

 

 

EAMom

Ok, I really want to understand this...if a child is a carrier, can they be cleared of strep? Or does it just keep coming back? How does that affect your pandas child...being around a carrier?

Kim

I think you should wait on the steroids if the strep test was still positive. I have a concern that your Harley's strep is intracellular.

 

Azithromycin is going to be better at clearing intracellular strep than augmentin. Clindamycin would be another option.

 

Personally, I would rec. a month of full-strength Azith first...and then consider adding on the steroids.

 

It doesn't matter much if your child is a carrier. It basically means he's not going to have obvious symptoms when he does get strep and he will be harder to clear. Our assymptomatic (hopefully non-pandas) younger dd is a carrier. We were not able to clear her with Augmentin but have sucessfully cleared her several times with a regular 5 day course of Azith.