Post Dr. B...

[eljomom]

dcmom...can you elaborate on "aggressive management?"

[JAG10]

I can only say that in exhausting many efforts, we have IVig on the table for our particular situation. I want to be careful not to mislead anyone and that is why I did not mention the doc's name in this post. I think the fact that my son has no other diagnosis and is otherwise clear and healthy in all levels of functioning allows for less difficult judgement calls/choices. My son has also been observed in person multiple times over the past year as we have made trips there every couple of months at my insistence. Therfor, he has been observed looking healthy and "normal" as well as presenting with PANDAS symptoms on many different occasions for each. I cannot speak for CHOP's position regarding IVig for anyone other than ourselves....

 

I remember when you first posted about seeing Elia on this board, there was no shortage of members posting of her refusal to help their children. Prior to this post, she has only offered short course abx or PEX for very new onset, so IVIG is new, hopefully progress. What may be difficult to appreciate from outside this area is that when you live in the backyard of a "leading children's hospital" and the policy stated to area pediatricians is "do nothing" for PANDAS outside protocol for typical OCD ect., that pretty much puts the kabash on getting any local help. Perhaps what you had going for you more than anything was that you were not local, who knows!

 

eljomom- I would think all treatment options are most effective the more recent the onset. Does IVIG work if not recent onset? Absolutely!!!! My dd is 11 with an initial onset 8 years ago and chronic/Wham episode in 2007. We didn't know what it was until 12/09, treatment beginning in 2/2010. At that time she was on 3 psych meds for misdiagnosed conditions, picking her skin until it ulcerated and barely, barely able to function well enough to attend school. She is sooo much better now and 90-95% recovered. Does 8 years of this take its toll? Do I wish my dd felt more confident minus the emotional and physical scars? Of course. But don't you let anyone, ANYONE tell you or imply it is too late for recovery because 8 months or 8 years has gone by since initial onset! That is the medical community's failure, not yours as a parent. Parents like you and I absolutely refuse to let our children be tossed aside as collateral damage because our local docs prefer to play it safe and avoid "hot issues." You have to see the emphasis on early detection, "classic presentation" and initial onset for what it is.... talking points. Many of the PANDAS organizations are working diligently to acquire credibility, they are only a few years old and therefore, much of the PANDAS press is focused on early detection, initial onset, recent onset, and so on. God bless them and more power to them! But there is a generation of kids,maybe two, who developed this illness before.....before this board was established, before the Saving Sammy book, before Lauren's sneezing, before the word was getting out as well as it is now. And there are doctors for those kids, brave physicians who value every child's wellness even when they don't fit neatly into the checklist or arrive on schedule.

Edited August 4, 2011 by JAG10

[kimballot]

eljomom- I would think all treatment options are most effective the more recent the onset. Does IVIG work if not recent onset? Absolutely!!!! My dd is 11 with an initial onset 8 years ago and chronic/Wham episode in 2007. We didn't know what it was until 12/09, treatment beginning in 2/2010. At that time she was on 3 psych meds for misdiagnosed conditions, picking her skin until it ulcerated and barely, barely able to function well enough to attend school. She is sooo much better now and 90-95% recovered. Does 8 years of this take its toll? Do I wish my dd felt more confident minus the emotional and physical scars? Of course. But don't you let anyone, ANYONE tell you or imply it is too late for recovery because 8 months or 8 years has gone by since initial onset! That is the medical community's failure, not yours as a parent. Parents like you and I absolutely refuse to let our children be tossed aside as collateral damage because our local docs prefer to play it safe and avoid "hot issues." You have to see the emphasis on early detection, "classic presentation" and initial onset for what it is.... talking points. Many of the PANDAS organizations are working diligently to acquire credibility, they are only a few years old and therefore, much of the PANDAS press is focused on early detection, initial onset, recent onset, and so on. God bless them and more power to them! But there is a generation of kids,maybe two, who developed this illness before.....before this board was established, before the Saving Sammy book, before Lauren's sneezing, before the word was getting out as well as it is now. And there are doctors for those kids, brave physicians who value every child's wellness even when they don't fit neatly into the checklist or arrive on schedule.

 

JAG— You go girl!

[airial95]

He confirmed what I already know - if just one of the 12 docs who saw my son during the first 6 months when he was diagnosed at age 2.5 had been on the ball and prescribed ongoing abx, we may have nailed this thing in its tracks.

 

While it really sucks that you had to search long and hard, these words gave me hope!

 

Our son had onset at 20 months, and was dx at 26 months (the delay was ours - everyone was trying to convince us it was the "terrible 2's). Fortunately, our pediatrician, when we finally came to him with our concerns that something was seriously wrong with our son, not only listened with an open mind - surprisingly had taken notes and kept records of our "passing" conversations and emails from previous appointments asking for behavior tips and techniques for our challenging boy. He was able to use that to pinpoint our first issue (which was biting) to an impetigo infection he had 6 months earlier (2 weeks later was our first email to him asking for advice on biting!)

 

He started our son immediately on abx - and kept him on almost consistently for over 15 months. Admittedly - we thought he was crazy if he thought abx was going to transform the spawn of satan back into our sweet little boy - glad we were wrong!!

 

I can't say we've ever gotten back to 100% - because with the younger kids, it is sometimes hard to tell what's PANDAS vs. developmentally appropriate. But we're in dcmom's camp, and I've used that same phrase "aggressive management". We still log his daily symptoms and activities so typically if we see any sort of even minor blip - we're tested for strep and back on abx (never less than 90 days - I LOVE my pediatrician!!).

 

I wish you the best on your new protocol, and hopefully you'll continue to have success!!