Question

[browneyesmom]

Thanks for all the feedback... my heart sank as I read each story of new infections and exacerbations. I hope all are improved very soon!

 

My daughter is having an exacerbation right now. She's had two severe - the one last winter was horrific as some of you may recall. By end of summer/start of school year, I would estimate she was about 85% improved; however, she's been declining in recent weeks and I'd say she's maybe 65% now. We see Dr. L tomorrow, thankfully and prophylactic abx seem a likely topic of discussion... if not another IVIG infusion - she's had 6 and was improving - even her IgG labs came up to the normal range - just not so sure they are holding there.

[EAMom]

We see Dr. L tomorrow, thankfully and prophylactic abx seem a likely topic of discussion... if not another IVIG infusion - she's had 6 and was improving - even her IgG labs came up to the normal range - just not so sure they are holding there.

 

If you do Azith, I would start at 500mg/day given her age/size for the first couple of months. You can always go down to 250mg/day once her symtpoms subside.

 

You probably need to repeat the IVIG AND do long-term Azith (or other antibiotics). (I know some of the East Coast docs don't like Azith.)

[MMC]

Posting on this kind of late, sorry..

 

1. Is your child taking long term daily abx for PANDAS and if so, - yes

 

2. which abx and what dose and - Pen VK 500mg once a day for DD and Augmentin 500mg once a day for DS

 

3. what is your child's age, weight and - DD is 16 and 125 lbs, DS is 13 and 82 lbs

 

4. number of severe PANDAS exacerbations - AND, - Hard to answer, DD has had PANDAS since age 5, tics wax and wane, worse with stress, OCD and sensory issues are there but mostly mild...DS has had PANDAS since age 10, will flair with any infection or stress, or without warning...we are noticing decline in symptoms the older he gets...actually doing a lot better the past 2 months.

 

5. current status of remission at this point - not sure I would use the word remission, but DD is 75% better than her worse times. DS is 25 to 50% better than his worse...it varies for him, would have never used a high 50% better rating until recently.

[beeskneesmommy]

Ongoing, therapeutic dose of abx since Sept. 2010. Augmentin 9/10 - 1/11; Cefdinir 1/11-7/11. Occasional, intermittent z-pack (5 day doses) showed marked improvement in addition to these meds, then symptoms returned within 10 days after z-pack ceased. 7/11 combo of Augmentin and Azith, daily has been incredible. I attribute this treatment, in addition to my son no longer having tonsils, to his recovery. he is currently 100%. No gut problems, although we try to get in at least 1/2 dose of Yum Yum Dopholous per day (we manage to make that happen aroung 50% of the time).

Edited January 26, 2012 by Beeskneesmommy

[EAMom]

Thanks for all the feedback... my heart sank as I read each story of new infections and exacerbations. I hope all are improved very soon!

 

My daughter is having an exacerbation right now. She's had two severe - the one last winter was horrific as some of you may recall. By end of summer/start of school year, I would estimate she was about 85% improved; however, she's been declining in recent weeks and I'd say she's maybe 65% now. We see Dr. L tomorrow, thankfully and prophylactic abx seem a likely topic of discussion... if not another IVIG infusion - she's had 6 and was improving - even her IgG labs came up to the normal range - just not so sure they are holding there.

 

Okay, when things are better with your dd, you need to compile all this data (as well as the stuff from FB) into some kind of chart...

[EAMom]

Posting on this kind of late, sorry..

 

1. Is your child taking long term daily abx for PANDAS and if so, - yes

 

2. which abx and what dose and - Pen VK 500mg once a day for DD and Augmentin 500mg once a day for DS

 

3. what is your child's age, weight and - DD is 16 and 125 lbs, DS is 13 and 82 lbs

 

4. number of severe PANDAS exacerbations - AND, - Hard to answer, DD has had PANDAS since age 5, tics wax and wane, worse with stress, OCD and sensory issues are there but mostly mild...DS has had PANDAS since age 10, will flair with any infection or stress, or without warning...we are noticing decline in symptoms the older he gets...actually doing a lot better the past 2 months.

 

5. current status of remission at this point - not sure I would use the word remission, but DD is 75% better than her worse times. DS is 25 to 50% better than his worse...it varies for him, would have never used a high 50% better rating until recently.

 

Hmmm, I don't know your kids' whole story, but if your kids are only 25-75% better, it seems like reason enough to up the antibiotics for a few months, and give at least 2x daily, to see if that helps. Also, consider switching to "bigger guns" antibiotics (not Pen or amoxicillin).

 

Also, I question rx'ing of once a day Pen. In one of Swedo's lectures, she was VERY clear that Pen (b/c it has such a short half-life) MUST be given twice daily. She said if a dose is missed, your child is essentially unprotected for several days.

 

Your dd is adult-sized, so I think the max dose for Augentin XR would be 2000mg twice a day. I think Sammy (Saving Sammy) got 1000mg 2x daily for a couple of years (but he was smaller/younger).

Edited January 27, 2012 by EAMom