Dr. K appt/WHITE PAPER

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Fixit]

 

Another interesting thing he said is that PANDAS patients should be evaluated on functioning in three ways: family, school, and social life. If one of those gets very debilitated, then it is time to advance the treatment to the next level. In our case, we will try abx again first, and if this is not sufficient, we will go for IVIG.

 

 

this statement kinda concerns me....as we are the cusp of all this learning...

and who is to deem what is acceptable for the childs future life other than 100% recovery....

that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being...

 

i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery.....

yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses....

 

 

sorry ....just being a little defensive!!!!!

[SarahJane]

Wow! Great info! He talked about the family, school, and social life issues in our phone call. (Family..said we wouldn't be calling him if this wasn't affecting our family; school...we are already homeschooling & weren't able to do that during this exacerbation; social...he said he didn't think we were doing Little League on the weekends---nope.) Dr. K is just great!

 

That would be nervewracking just waiting. BUT you know what to look for & what signs to watch for in your son, so you're one step ahead from where you were when this initially hit. You can do this! I'm glad you had a good appt.

 

SJ

[SarahJane]

 

Another interesting thing he said is that PANDAS patients should be evaluated on functioning in three ways: family, school, and social life. If one of those gets very debilitated, then it is time to advance the treatment to the next level. In our case, we will try abx again first, and if this is not sufficient, we will go for IVIG.

 

 

this statement kinda concerns me....as we are the cusp of all this learning...

and who is to deem what is acceptable for the childs future life other than 100% recovery....

that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being...

 

i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery.....

yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses....

 

 

sorry ....just being a little defensive!!!!!

 

 

Oh...I really don't think that's what he meant. PANDAS is very likely to hit all of those areas & hit them hard...just maybe not at the same time or gradually enough that you make unknown accomodations until suddenly those don't work either. When he talked to us about it, he said a person can be debilitated but still be able to walk. That's when he talked about the 3 areas & how they are affected. Dr. K really does get what PANDAS does to a kid, to a family, to everything. I'd speculate that he only means that you would use the medical interventions in steps/stages...pretty much like what happens now (abx, steroids, IVIG). I'm confident that full recovery would always be the mission.

[colleenrn]

Thanking you for sharing what Dr. K had to say! I have been waiting and wondering when we will see the white paper and praying it calls for antibiotics.

 

I know all children are different and none of my children have had IVIG, but they need antibiotics and it scares me to my core to think of what would happen without them. I have done the wait and see with my oldest and it was not good. She had a major excacerbation when she was 11 (6 years into her PANDAS)b/c we decided to stop antibiotics and see what happened. It is 3 1/2 years later and she has never returned to her baseline. I am never willing to do it again and will find antibiotics from someone. I know Dr. K is a wonderful and skilled physician, but I honestly have never understood his stance on antibiotics. I am not saying he is wrong, but it does not make sense to me. PANDAS is rheumatic fever of the brain and requires the prevention of strep in that person. It seems like other PANDAS physicians (Dr. T, Dr. L, Dr. Murphy) are all more aggressive with antibiotics and I wish they had input into the white paper. I just feel like it this white paper comes out and discourages the use of antibiotics, we may have an even harder time getting them.

 

Colleen

[thereishope]

Not sure what to take from this. I am fully aware you are just relaying what you were told and it's not the actual white paper.

 

re:long term antibiotics....I wonder if he means low dose, full strength, etc.

 

I wonder when steroids would be introduced. Hopefully, before being debilitated. I know he claims it's just another diagnostic tool, but there are parents on here (including me) who know it is part of treatment and helped their child overall.

 

As for a watch and wait plan, yes, one can do that, but even if you play that game, catching super fast doesn't mean it shortens/weakens an exacerbation.This part sickens my stomach since this is what we did with my son and some of exacerbations were really bad even though they were catch within a day. Perhaps there needs to be a rule put into place where the child remains on abs for a year to try to ward off another exacerbation and give the body and brain time to heal. But, for goodness sake, after a very bad exacerbation or multiple exacerbations, I think at least a low dose proph antibiotic is justified.

 

What I find interesting is from following so many parents who have seen Dr K, I know if my son had saw him, I would have been told he needed IVIG. My son ended up recovering without. Does that mean kids will be referred to IVIG even though they not need it? I wonder what timeline they will follow.

 

Oh my....it is still a long road ahead of us for everyone, including doctors, to figure out what is the right plan to put into place for local docs to follow. We all know not every child is the same. I pray for divine intervention that the right protocal comes of this.

 

Something else I've worried about is, as Dr K menitoned, many of his patients are long term sufferers. Has this panel talked to enough parents who have lived the opposite? Who have caught it early and gotten better before....and followed their long term outcome? They could learn from them.

Edited December 4, 2010 by Vickie

[KaraM]

Dr. K explained that he believes staying on abx long-term actually makes the patient relapse, or break-through faster..."

 

This confuses me a bit. Did he mean that for some, long-term abx will cause the patient to relapse and that for others, long term abx will help cure them faster? So each child's response may be different and fall into one of these two camps?

 

My child is on long term abx, so I want to know whether I should be worrying that, in the long run, they could make things worse. Or if I can relax because she is in the group that is being cured faster (fingers crossed).

 

Thanks for passing all this info from your appointment on to us. I love hearing the different doctors' perspectives.

 

Kara

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Fixit]

THanks!!! I needed to hear that.

[Suzan]

When we asked about Lyme, he said he doesn’t see it as a common factor, and that only two of his hundreds of patients have contracted lyme. He said one patient had lyme first, then developed PANDAS, and the other had PANDAS first and then contracted lyme. He mentioned the big meeting this summer and said two lyme experts were there. He said they discussed a lot, and that there are very specific/typical characteristics of PANDAS symptoms that do not occur in lyme, and he believes they are two distinct illnesses.

 

I am curious to know what the symptoms are that are JUST PANDAS and the ones that are JUST LYME. My LLMD said something similar when I asked her if she thought my dd's pandas would be gone after her lyme treatment. She looks at the symptoms that are generally seen with lyme and expects those to resolve with lyme treatment but those symptoms that are generally seen with pandas (I think it was OCD) we would have to wait and see. When I look at the lyme symptoms, they seem to cover the pandas symptoms pretty well. Maybe the sudden onset and strep connection??

 

I don't know how many families on this board are now dealing with lyme now but it sort of surprised me that he has only seen 2 paitents with both pandas and lyme. We didn't have sudden onset since my girls have been affected since they were babies so maybe that is a difference. I don't know, just thinking aloud.

 

Susan

[thereishope]

The problem with posting on this is we can't pick the brain of the original speaker (in this case Dr K). We can hypothesis his theories, but really don't know. It makes me wonder if those who need antibiotics to maintain a form of remission, still have a lingering infection somewhere that's being kept under control by the abs. By already having a lingering infection, they are going to more prone to a faster, full blown exacerbation. So, that makes it look like kids on long term full stregth abs are more prone to a relapse. So, we need to find out why those kids need thsoe full strength abs to maintain remission.

 

Does that make sense? You then have a separate group of kids (like mine) that can maintain remission without antibiotics but have had so many assaults on his brain that I cannot sit here and just wait for him to get sick again and perhaps have it be the time when I can't get him back. For those kids, a low dose antibiotic may be okay. Again, every child and their reason for needing/wanting antibiotics varies. There's no cookie cutter answer.

 

 

N

ot sure what to take from this. I am fully aware you are just relaying what you were told and it's not the actual white paper.

 

re:long term antibiotics....I wonder if he means low dose, full strength, etc.

 

 

Vicki, Dr. K meant, as stated on his website that long-term, full strength antibiotics have not proven to be helpful in his practice for PANDAS patients. He is very confident of his protocol and experience, and he said he believes that patients relapse faster if they are left on antibiotics constantly. This is scary to me also, based on reports from this forum, and a friend I have whose child has done great over a year on abx. I also hate to have my son dependent on them, or developing yeast infections, super gut infections because of abx, so I am a bit interested in trying. This is easier for me right now b/c my son is still functioning well in school, and his worst problems during exacerbation were tics/adventitious mvts/hyperactivity, which quickly resolved .. . . . .we have not had the exorcist syndrome yet. I may change my mind if things get that bad for us soon.

 

I really appreciate everyone's comments, and I knew there would be some debate about the abx issue. I do not know what the White Paper will advise in that regard. . . .he did not say.

 

Keep the lively discussion coming, and friendly as always!

Edited December 4, 2010 by Vickie

[butterflymom]

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Edited February 3, 2016 by butterflymom

[JAG10]

I am surprised he is still sharing that statistic of 87% only need 1 IVIG or 12-13% need more than one.

 

As others have said, he may be erroneously counting folks as "in remission or cured" who he doesn't hear from anymore. There could be several reasons why those folks need to move on to other docs for further treatment including location to him, his success acquiring insurance approval, families financial experiences with his treatment facility OBSC, and possibly other reasons.

 

While I have tremendous respect and admiration for Dr. K (I think he is a hero), I don't believe this number reflects what is implied. I don't think he's being dishonest, I just think he should say "87% of my patients see me for 1 IVIG and I do not know of that number who seek additional IVIG elsewhere and who acquire an asymptomatic state with my one treatment."

[SarahJane]

The Lyme parallels I saw (& I just bought Osler's Web so I'm sure they'll be the same with Chronic Fatigue Syndrome...plan to reread "And the Band Played On") were more in the politics of it all vs. symptoms. That it doesn't exist in chronic form. That doctors treat patients like they're crazy. That it's hard to get treatment or treatment given isn't enough but is deemed enough by the pros. I didn't get thru the entire book yet (too much going on), but I was able to sit thru "Under Our Skin," which was very enlightening. I don't wanna make this all about Lyme (I'm still basking in the white paper news!), but I highly recommend that movie. I'm not sure that it's intentional the way these diseases get brushed off as much as there are so many minds trying to do so much work without total understanding it all or access to all the other info. I'm not an optimist, so I do have theories...one being the mass hysteria would be rampant if everyone knew what we PANDAS parents know & what Lyme patients know & what CFS patients know & autism parents, etc.... Plus, how do you boil it down to a neat 2-3 minute news story that will keep someone's attention while the crawl below it has breaking news about a celebrity scandal? How do you tell people that down is up & up is down? Takes a lot of getting used to the new gravity even when you're experiencing it...let alone those unaffected & living a good life.

 

To the abx/IVIG stuff, I'd say that if protocol is that IVIG is an official step & recognized PANDAS treatment, then insurance companies will have to start covering it. That seems to be a BIG impediment to that option right now...and finding someone to do it. If you look at exacerbations with varying levels, then yes, IVIG may be too much for 3 days of frequent urination...especially if strep's detected & treated/eradicated. To me the long-term abx is to keep infections at bay so that the kids don't get sick & have another exacerbation vs. remission. (And you are on abx for a year after IVIG to ward off infections.)

 

It's definitely hard to speculate. My take on the white paper is that it will make some happy, some mad, and some will have mixed feelings about it...just like anything else in life. BUT we should all take heart in that so much great press & research has happened. (Vickie--kudos again on that slideshow!) This will sound weird, but I'm glad we have PANDAS now vs. a few years ago (even tho' we likely did have it a few years ago & didn't know it--grrr. AND I wish we didn't have it at all...duh!). ANYWAY...being able to talk to others that are going thru the same things...visit web sites devoted to PANDAS...sharing info thru social media...all this wasn't here say 4 years ago, right? (Maybe the forum was.) I think I've made my point. The white paper, no matter what it says, will only be another check in the column of VERY GOOD things that have happened in the history of PANDAS. And while we're on the forefront of all this, think about when our kids have kids, and the pediatricians don't give a 2nd thought to strep causing any strange behavior & just treat it. Heck, with the way our kids are in dr's offices, it's likely many of them will be doctor's in the future. And maybe that's not an accident. (Not gonna go all spiritual, but it's weird the connections that happen. And I'm gonna leave it at that.)

Edited December 4, 2010 by SarahJane

[butterflymom]

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Edited February 3, 2016 by butterflymom