Newbie with questions - DD diagnosed with PANS

[SpenceOhana]

So hopefully there won't be. When your children take it for 30 days, do their symptoms ever return after the 30 days?

 

Also a lot of you are mentioning getting a PANDAS specialist? By specialist do you mean a neurologist? psychiatrist? or other type of doctor?

 

1) yes symptoms may return after 30 days

2) where do you live?--depends more on the individual doc. My dd's main PANDAS doc is her psychiatrist. However, other top PANDAS docs are immunologists, neurologists, rheumatologists, integretative docs, even peds...

 

But, be careful of neurologists in general, many of them are big PANDAS naysayers.

 

PS...I now see you are in Texas. Lots of PANDAS folk in Texas see Dr. Rao. Here's a link: http://www.latitudes.org/forums/index.php?showtopic=18094

 

You can also google "Dr. Rao PANDAS"

 

Also, contact the support groups in Texas, they may have more info on docs http://pandasnetwork.org/resources-new-research/support-groups/

 

So when your children's symptoms would return after the 30 dose, how much longer would you continue antibiotics?

 

We live in the Austin, TX area. We have an appointment with a neurologist group at Dell's in May. They scheduled us with one that see's PANDAS patients. So hopefully that's good?

[airial95]

I have 2 PANDAS kids - and the answer to the question about their symptoms returning is different for each child.

 

My daughter is a more mild case, caught quickly because her early asymptomatic strep infections were caught and treated b/c of her brother's PANDAS dx. Our ped always put her on at least 2 rounds of back to back abx (min 20 days) initally for her brother's sake. Because of that - after a single 30 day dose of abx, her symptoms do not return. We usually see her back to 100% about 2 weeks into the 30 day course. Our theory is that because she was treated immediately at first onset (although unknowingly b/c it took us 3 infections before we connected her symptoms to the strep) she's an easy case.

 

Our son - not so much. Yes, his symptoms return after a 30 day course of abx. Our ped initially had us returning every 30 days for a ck in to see if we needed to renew. Each time we tried to discontinue abx, symptoms returned within 3 days. As such, he has been on abx almost continuously since January 2010. Unfortuntetly, it has not prevented him from getting multiple strep infections (positive cultures) while on abx. He has gotten to about 85-90% back to normal with abx alone, reached 100% after T&A (still on abx), until 6 weeks post op when he got strep again. YAY!! After 3 years, he is now heading to IVIG the first week in April. With him, it was about 9 months between the infection that triggered onset and his dx. The infection was treated at the time with a standard course of abx, and the behavior changes triggered suddenly one day about a week or two after he finished abx. Because he was so young (only 20 months at the time), we initially attributed his behavior change to the "terrible twos" - but as things progressed and escalated, it was obvious something else was wrong. We got him dx after his day care suggested that we take him to get evaluated b/c something was not right (the directors exact words were "this is not your son - I don't know who he is, but he's not your kid.") Luckily for us, our ped knew about PANDAS, saw that the timeline fit from our initial reports to him about behavior escalating (fortunately I had emailed him within days of his behavior changes asking for tips so he had the date of the sudden onset and could trace it back to a confirmed infection).

 

Now, we see two PANDAS docs - one a neuropsych here in Florida Dr. M (she's more of a researcher, but an expert none the less), and we travel to CT to see an immunologist - Dr. B (that's who will be doing the IVIG). Our ped is still our lifeline, and our rx for abx usually have 3 refills, but he will often refill by phone with just an email or phone call touching base on progress. Honestly - I'm usually in his office before the refills are up anyway for a strep check on one or both of the kids, my son just gets it so often. (Although the T&A has helped)

 

Unfortunately, with PANDAS, it's not one size fits all. Also, something to note, is that some kids respond differently to different abx. For some, azith has been all they need, others cycle through various abx before they find the one that works.

 

As for the neurologist you're seeing, I would ck the thread pinned at the top of this forum for helpful docs to see if they're on that list, also look at the PANDAS Resource Network and Saving Sammy websites to see if that doc is listed there. Many folks often are told that the doc they are schedule with sees PANDAS patients - only to find out that the doc sees PANDAS patients simply to tell them that they don't believe in PANDAS and push another dx. We've been fortunate to not have that experience, Dr. M is local to us and is affliated with the major university in our area, so there seem to be more docs familiar with it than most in my area.

[airial95]

A side note - what helped us determine we needed long term abx for my son was a detailed log that we kept. About 2 weeks after dx, when we started to see significant gains, we started logging his symptoms on a scale of 0-9. We graphed his progress, and while it was clear there were good days and bad days, there was a steady trend towards improvement. When ever we tried to take him off the abx, he was exposed to strep, or he got a new infection, there was a clear - double digit - increase in his symptom scores. This information really helped our ped maintain the abx, and it helped other specialists we saw understand what was happening. I suggest you start keeping a log or journal of some sort. We used a numerical scale because it was more objective and took the emotion out of it.

[SpenceOhana]

A side note - what helped us determine we needed long term abx for my son was a detailed log that we kept. About 2 weeks after dx, when we started to see significant gains, we started logging his symptoms on a scale of 0-9. We graphed his progress, and while it was clear there were good days and bad days, there was a steady trend towards improvement. When ever we tried to take him off the abx, he was exposed to strep, or he got a new infection, there was a clear - double digit - increase in his symptom scores. This information really helped our ped maintain the abx, and it helped other specialists we saw understand what was happening. I suggest you start keeping a log or journal of some sort. We used a numerical scale because it was more objective and took the emotion out of it.

 

Thanks! I have been keeping a daily journal log of her behaviors. Dropping that off at the ped tomorrow to try to get her on board to do a longer prescription of zith.

[Mayzoo]

The Saving Sammy website has a provider list. Here is the saving Sammy provider list: http://www.savingsammy.net/providers.php

 

Here is the thread on ACN for PANDAS providers: http://www.latitudes.org/forums/index.php?showtopic=5023

 

There is also a PANDAS network site with some provider lists as well.

[EAMom]

The Saving Sammy website has a provider list. Here is the saving Sammy provider list: http://www.savingsammy.net/providers.php

 

Here is the thread on ACN for PANDAS providers: http://www.latitudes.org/forums/index.php?showtopic=5023

 

There is also a PANDAS network site with some provider lists as well.

 

Here's PANDAS network's list. It's in 2 sections, 1 short section of "leading physicians" and another where you can click on each state.

There are 2 "leading physicians" listed in Texas (Dr. Rao and Dr. Russell).

 

http://pandasnetwork.org/resources-new-research/providers/

 

I would also be a little cautious about Beth Maloney's list (Saving Sammy) as I have heard of parents having problems with a few of the docs. They aren't as well screened as the PANDAS network list.

Edited March 12, 2013 by EAMom