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Ped agreed to give us Augmentin 875 mg and I was praying the tics would get better and I could take him back in and say "see he doesn't need prozac!" , but no such luck. Tics are getting worse. I'm waiting for a call from Dr. Murphy's office to see if she will see us, have an appointment with Dr. Latimer is October, and emailed Dr. K to see if I can pay for a phone consult with him and my ped. You get so happy thinking your child is "healed" because the the PANDAS symptoms come and go, but this time I am reminded my baby is not healed and it makes me sad. I feel like I should have seeked out experts before he had gotten so bad again. I really thought our cure was penicillin for life! :) I have printed off studies, posts from here, and everything I can think of to show my ped that we need steroids and a higher dose of Augmentin, but until we see Dr. Latimer she won't change anything. I pray my sweet boy can make it mentally until then! Thank ALL of you who have been here from the beginning and supported us. One day I hope to do the same!

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Our personal experience is that tics were very hard to eliminate. My son was on daily abx and did a 4 week prednisone taper and tics remained (reduced, but enough to break my heart). Then we did a T&A, which eliminated the source of chronic infection. It was only then that tics started to subside (but over months - it wasn't instant). Finally, we did pex, and after a few weeks, the tics were finally gone.

 

So part of my message is to not get your hopes so high that you tie yourself up in knots when they don't subside quickly. It may take months and possibly more aggressive treatments. The other part of my message is to not give up hope. What you see today is not something you have to resign yourself to seeing 6 months from now. I know that feels like a lifetime, especially as the start of school looms on the horizon. Tics provide a constant, in-your-face reminder that something is wrong. But in our experience, the damage isn't permanent. Try your best to not despair. This is a marathon toward good health, not a sprint.

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Our personal experience is that tics were very hard to eliminate. My son was on daily abx and did a 4 week prednisone taper and tics remained (reduced, but enough to break my heart). Then we did a T&A, which eliminated the source of chronic infection. It was only then that tics started to subside (but over months - it wasn't instant). Finally, we did pex, and after a few weeks, the tics were finally gone.

 

So part of my message is to not get your hopes so high that you tie yourself up in knots when they don't subside quickly. It may take months and possibly more aggressive treatments. The other part of my message is to not give up hope. What you see today is not something you have to resign yourself to seeing 6 months from now. I know that feels like a lifetime, especially as the start of school looms on the horizon. Tics provide a constant, in-your-face reminder that something is wrong. But in our experience, the damage isn't permanent. Try your best to not despair. This is a marathon toward good health, not a sprint.

 

Thank you! As a parent you just want to fix things. 4 years ago his tics stopped after just a few days on antibiotic and I was just hoping it would happen again. We did the T&A, but what is pex? He started school today and his teacher said when the kid's asked why his moving so much he told them he got an infection from the pandas! Did you see a specialist that was helpful?

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He started school today and his teacher said when the kid's asked why his moving so much he told them he got an infection from the pandas

 

 

You are kidding me!!a TEACHER SAID THIS!!

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He started school today and his teacher said when the kid's asked why his moving so much he told them he got an infection from the pandas

 

 

You are kidding me!!a TEACHER SAID THIS!!

 

 

No sorry!! My son told his classmates this! :)

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4 years ago his tics stopped after just a few days on antibiotic and I was just hoping it would happen again. We did the T&A, but what is pex?

 

During his first "official" episode, he ticced for 3 days (a week after his first strep throat) then it went away (tho the severe anxiety did not). Later, they became one of our dominant issues. He even started "freezing" like a statute. So then every time tics flaired, I was petrified. We finally did pex - plasmapheresis - last August. And that helped immensely. Plasmapheresis is a kind of blood dialysis that removes the auto-antibodies thought to be causing the Pandas exacerbation.

 

Until this weekend, I was under the impression that you could only get pex from Georgetown Univ Hospital in DC, but someone else posted this weekend about a second place it may be available. It requires 3 days in the Pediatric ICU and is quite expensive if not covered by insurance.

 

But in the spirit of full disclosure, you will notice that I'm still on this forum, still fighting Pandas. So while pex helped a great deal and I have no regrets, it was not a cure. More like a very beneficial treatment.

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I would agree with LLM. For us, tics have always taken the longest to go away. Mood tends to improve first, then OCD, tics are last to improve. Tics took 6 weeks after our bad pandas episode in 2008 (we initially got pretty good remission with antibiotics). After IVIG #1 (Aug. 2009) they went away again...but returned when we relapsed in Feb. 2010. We had another IVIG in May 2010, and the tics aren't going away this time, although mood and other things are pretty good.

Edited by EAMom
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I would agree with LLM. For us, tics have always taken the longest to go away. Mood tends to improve first, then OCD, tics are last to improve. Tics took 6 weeks after our bad pandas episode in 2008 (we initially got pretty good remission with antibiotics). After IVIG #1 (Aug. 2009) they went away again...but returned when we relapsed in Feb. 2010. We had another IVIG in May 2010, and the tics aren't going away this time, although mood and other things are pretty good.

 

 

He was given Augmentin for 10 days and then told to start back on his PCN. Should he continue on Augmentin daily? As long as the tics and hallucinations do not get worse he should be able to function some-what normal. Yesterday was the first day of school and although kid's told him to stop moving a few times he seemed to be ok. I need to look back at his medical records. I wonder if they give him the same antibiotic they did last time if his tic will go away as fast. It was a shot in the leg, but I can't remember the name!

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IMO your son should stay on FULL-STRENGTH Augmentin long term (a few months at least, until you can get a handle on whether it is really helping or not). 10 days is not enough (and I wouldn't switch to once daily Augmentin either).

 

My dd has been on full-strength (250mg/day) Azith. for over 2 years, when we've tried to cut back, her symptoms have increased again. It took 6 weeks of full strength Azith. for her tics to go away with her first big PANDAS exacerbation.

 

I'd be curious to know what the shot in the leg was. However, just b/c he responded quickly the first time, doesn't mean he'll do it again. Many PANDAS parents find that subsequent exacerbations become more difficult to treat.

 

BTW...did you get recent throat cultures on all family members? If someone is positive in the family (even assymptomatic) your son will react.

Edited by EAMom
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Ped agreed to give us Augmentin 875 mg and I was praying the tics would get better and I could take him back in and say "see he doesn't need prozac!" , but no such luck. Tics are getting worse. I'm waiting for a call from Dr. Murphy's office to see if she will see us, have an appointment with Dr. Latimer is October, and emailed Dr. K to see if I can pay for a phone consult with him and my ped. You get so happy thinking your child is "healed" because the the PANDAS symptoms come and go, but this time I am reminded my baby is not healed and it makes me sad. I feel like I should have seeked out experts before he had gotten so bad again. I really thought our cure was penicillin for life! :) I have printed off studies, posts from here, and everything I can think of to show my ped that we need steroids and a higher dose of Augmentin, but until we see Dr. Latimer she won't change anything. I pray my sweet boy can make it mentally until then! Thank ALL of you who have been here from the beginning and supported us. One day I hope to do the same!

 

Were they going to give him prozac for tics? What are his other symptoms?

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Ped agreed to give us Augmentin 875 mg and I was praying the tics would get better and I could take him back in and say "see he doesn't need prozac!" , but no such luck. Tics are getting worse. I'm waiting for a call from Dr. Murphy's office to see if she will see us, have an appointment with Dr. Latimer is October, and emailed Dr. K to see if I can pay for a phone consult with him and my ped. You get so happy thinking your child is "healed" because the the PANDAS symptoms come and go, but this time I am reminded my baby is not healed and it makes me sad. I feel like I should have seeked out experts before he had gotten so bad again. I really thought our cure was penicillin for life! :) I have printed off studies, posts from here, and everything I can think of to show my ped that we need steroids and a higher dose of Augmentin, but until we see Dr. Latimer she won't change anything. I pray my sweet boy can make it mentally until then! Thank ALL of you who have been here from the beginning and supported us. One day I hope to do the same!

 

Were they going to give him prozac for tics? What are his other symptoms?

 

Ped said prozac for his OCD/emotional behaviors and I can't remember the name for the anti-tic meds, and then I think the other med was called clonadine. She acted like she was dying to say "told you so." She has never agreeded with our option to use more natural things. This is the 1st big flare up in 4 years, so I think the suppliments worked! We have all had negative throat cultures, but had a foster child staying with us back in April who had strep. I told the ped this, but she said it wasn't the cause. As for symptoms: hallucinations, freq urination, tics, clingy, and little warts popping up(not sure what that is about)

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