Dr. K appt/WHITE PAPER

[Megs_Mom]

I would guess that Dr. K was talking about the kids who are on a certain abx, and then later that abx seems to fail for that child. I can understand that concern, but given the incredible success we have had on azith, and the fact that a lower dose means a return of OCD, not having access to that abx is huge.

 

After our very first exacerbation, we did not have abx, and had a 3 year remission. Perhaps if caught quickly, abx for short term is enough. But after untreated exacerbations for over a year, a quick treatment was no longer enough. We clearly fall into the camp where the abx is doing something else for us.

 

Hope somebody smart figures it out soon.

[Megs_Mom]

Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle

 

Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....

 

 

These are my two great fears as well. Until we know more, I have to make the choice that keeps her healthy. Every time I hear someone use the term "long-term damage" of neurons or whatever, I lock down a little more on both maintanance and prevention. As for many others, our exacerbations are so severe and in the end, were so frequent, that we simply cannot take the risk.

[norcalmom]

i haven't read every post in this thread so forgive me if this is redundant. While we all owe a huge dept of gratitude for Dr K - without whom I don't think there would be any pandas awareness at all. Over a decade ago, he used a very old, obscure study published by Swedo, to treat a friends child who had pandas, with ivig. He took a huge risk in doing this. It worked, and word spread, and he kept training it and telling people about it. (thank God we live int he time of the internet!) He is not an immunologist, he is a pediatrician with a thriving pediatric practice...I think of him as a bit of a cowboy. And I think with out him, pandas might still be some obscure study.

 

And with ALL due respect ( he changed our families life) his meathods of follow up aren't exactly...shall we say... specific. I would venture to say that there are plenty of kids with Lyme he doesn't know about, plenty following a different anitbiotic regime prescribed by another doctor too. I'm one of them. He may even have patients that got ivig locally months or years later which he doesn't know about. So, his statistics are probably off. BUT he still has the best gut feel - becasue he actually has hundreds of pandas patents, so his numbers may be more based on instict, or partial follow up. He relies on patients to contact him after they leave to tell him what is going on...and I don't know how many patents actually get back to him, or if they get translated from some long email into a database...I dont' know...they could be.. But either way, if some patents don't get back to him, I think he assumes they are all better, while infact they may be pursuing a different treatment with different doctor.

 

The Lyme link is newer?...at least it seems to me...I wan't around 3 years ago, and in looking at older threads and the info I got when I started researching it was strep, strep, strep...and I found one small mention of mycoplasma in a swedo article. So, how would he know to even ask about Lyme..not hat he asked, he had to rely on patients to contact him...patients that may not know there is any relationship between lyme and pandas/pitand.

 

Fo me the link really came when I saw that Cunnningham said that Lyme can also cause elevated Cam K and anti- neuronal antibodies. She hasn't published anything that I know of the subject, but she was the keynote speaker at a recent national Lyme conference...so she's studying some link she has discovered, and as a scientist, I'm sure she is isolating the lyme kids from strep kids. Her numbers I'd buy! And am chomping at bit for something to come out of her lab.

 

While I hope that the white paper raises awareness, validates the diagnosis, gives peds everwhere tools for screeening (questions and baisc tests) I really hope that it recommends referring cases that do not remit 100%, or that recur, to a specialist. The same way we all recommend new members of this board to get to a specialist if they can. And ways for doctors to become "specialist" - how do they get some training and information.

 

In an ideal world there would be a specialist in every state, that knows the all the screening, tests, and treatment options. I think the DAN folks have done this well. Maybe we should be using that as an operational model for information and treatment. I think that this will have to happen first to get to where we want to be - which would be all doctors able to identify and treat pandas.

[norcalmom]

PS - Thank you for posting this discussion on white paper - and thank you for using your precious time alone with Dr K to discuss this topic!!

[Kayanne]

I have to admit, that I have only been skimming this thread. However, something is jumping out at me.

 

I have been searching for previous posts from patients of Dr. K who have said that he told them that he has been following his patients for 6 or 10 years (or something like that). Please if anyone finds anything please post the link to that thread.

 

I don't know what is the truth, but it has been reported in the past that he told people that he has followed up with his patients.

 

There have been a few times (maybe the same posts), where he told patients that he was close to publishing a paper.

 

I can't find any of it...does anyone else remember this, or am I crazy?

[norcalmom]

I can only speak from personal experience, he may be following up with a certain group. I would not call what he asked of us follow up because it relies on the patient to submit the follow up. And he doen't ask them if they had lyme, or survey them. It is self prompted. At least mine was.

 

He asked us to follow up at 2 weeks, (3 months?,) and a year --- I'm not even sure because I lost the paper he gave us at the ivig with what he asked for. He wanted a description of whats going on, and a drawing done by your child of a picture of their house with name and address written next to it. to use as comparison. I think he wanted that submitted at 3 mos. and one year mark. Its also somewhat buried in other important information on the sheet as I recall - like list and doesing of recommended foods, supplements, what do to is migrain after ivig fluids..etc..

 

He may have another smaller group that he contacts and surveys and tracks more carefully that he is using. I hope so .

 

since, I am now using a local doctor for lyme and myco P testing, antibiotics and because, well, I've lost that piece of paper...we haven't sent anything. I kinda forgot about it until this tread. Also, I sent him some antibiotic questions when my sone got a cold at 7 weeks post ivig, and I didn't get a response, so I think I kinda felt he was jsut too busy, and if he's too busy for that, probably isn't doing anything with the write up on my son...so it got put in the very low priory stack...so I'd be int he group that invalidates his numbers because we stopped getting back to him!

 

Perhaps he started this when he was following that group and now just hands the paper out to everyone. Who knows.

[Worried_Dad]

He asked us to follow up at 2 weeks, (3 months?,) and a year --- I'm not even sure because I lost the paper he gave us at the ivig with what he asked for. He wanted a description of whats going on, and a drawing done by your child of a picture of their house with name and address written next to it. to use as comparison. I think he wanted that submitted at 3 mos. and one year mark.

 

He asked us to send him status updates via e-mail at 1 month, 3 months, 6 months, and 1 year post-IVIG. We actually sent updates more frequently because things were not going well at all for 4 months following IVIG rounds 2 and 3. Of course, he always told us to contact him immediately if something serious developed and always responded quickly when we were in crisis.

 

Also wanted to clarify something: although Dr. K was not a fan of higher-dose, longer-term abx, he did agree to prescribe the "Saving Sammy" dose for our son when the expected progress did not occur after IVIG. And - when we started seeing dramatic improvement - he kept refilling the scripts for us. Dr. K told us several times, "I learn something new from every patient." So I have great faith in Dr. K as an individual practitioner to keep trying different treatments if the standard ones aren't working.

 

What I worry about is a white paper coming out "by committee" that over-simplifies the treatment options, and which is then used by local docs to completely dismiss long-term abx. That's exactly what we (and many others) experienced due to the old, inaccurate, and over-simplified info that for years graced the PANDAS page of the NIMH web site. That one web page was used like a club to beat us down again and again for almost 3 years. Can't begin to guess how much harm it did for many, many desperately ill PANDAS kids.

 

Sorry to keep harping on this. But past experience makes me paranoid!

[cobbiemommy]

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’m struggling with this a bit also, as my husband had lyme in 1988, and took a long time to get well. He’s been well for 20+ years, but is now ill again and revisiting lyme treatment. I do wonder if there is any chance that lyme could be passed congenitally from the father, but it seems rare and unlikely. My son’s symptoms seem classic PANDAS, and we have seen quick reactions to impetigo in him.

 

I finding this information very interesting, because my son is diagnosed with Lyme, Babesia, Bartonella, and Rocky Mountain Spotted Fever after originally being diagnosed with PANDAs. I have kept updating Dr. K. about DS's status, because I think these statistics are important for his work. I know of at least two other children that had Pandas diagnosis and later Lyme. We were all seen by Dr. K. I think Dr. K. is a wonderful doctor and IVIg did help my son, but Pandas was not the only problem that my son had. Since there is some history of Lyme in the family, don't rule it out completely.

[EmersonAilidh]

I hate it when I stumble onto an interesting topic when it's already three pages in. :/

 

I don't think that the White Paper will be GUIDELINES for P.A.N.D.A.S. treatment/diagnosis so much as suggestions. What I'm trying to say, & granted this really is just what I think, is that I don't believe it's going to make anything more difficult, like the Dearborn Criteria or something. I think for the most part it will just be setting a standard of treatment & diagnosis pursuit. I'm sure there are far too many pediatricians, neurologists, & whateverelseists out there who still have no idea that strep can cause these things, much less how to treat it even if they do make the connection. I'm HOPING (& as someone with Lyme I know hoping is a dangerous thing) that this white paper will make P.A.N.D.A.S. easier to diagnose (which it sounds like it will), antibiotics/steroids easier to get, & IVIG easier to get covered by insurance. I don't think they would be including Dr. K, Swedo, & Leckman if they were trying to make this more difficult for us. After the Tel Aviv study (not to mention everything else accomplished in this past year & even before then) anti-P.A.N.D.A.S. doctors are going to have a harder time making their case than we will ours.

 

One of the first things you learn when reading up on P.A.N.D.A.S. treatment is that every kid requires a unique treatment. With P.A.N.D.A.S. savvy doctors working on it I find it hard to imagine that these guidelines/suggestions/whatever-they-are will be too terribly rigid. Trying to stay optimistic over here. Now, it would be AWESOME if they were required to check for Lyme before starting any Prednisone or other steroid treatments, but I think I'm getting a little ahead of myself with that one. :3

[EAMom]

Oh my gosh...I am a dork and accidentally deleted my own post! Ughh.

 

I'll try to rewrite:

 

It doesn't matter if it is a suggestion or a guideline. Peds are very fearful of antibiotics and very afraid to "step outside of the box".

 

Just think of how much damage the NIMH website has done...recommending abs only if throat cultures are positive (not as prophylaxis or even if titers are elevated.) http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml and only recommending treating PANDAS like any other case of OCD (no abs, psych. drugs, and cbt)

 

Should an elevated strep. titer be treated with antibiotics?

No. Elevated titers indicate that a patient has had a past strep. exposure but the titers can not tell you precisely when the strep. infection occurred. Children may have "positive" titers for many months after one infection. Since these elevated titers are merely a marker of a prior infection and not proof of an ongoing infection it is not appropriate to give antibiotics for elevated titers. Antibiotics are recommended only when a child has a positive rapid strep. test or positive strep. throat culture.

 

What are the treatment options for children with PANDAS?

The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.

 

Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child's primary physician can help you decide which type of specialist your child may need to see to receive these treatments.

 

Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics.

Edited December 6, 2010 by EAMom

[colleenrn]

EAmom-

That is my biggest fear and has been all along. My oldest was diagnosed by Dr.Swedo 9 1/2 years ago. I emailed Dr. Swedo almost two years ago and asked her WHEN the NIMH was going to update their website as to the need for antibiotics. I told her docs were handing out psych meds like candy, but refusing antibiotics. She agreed and said that they were "in the process" of updating the NIMH site and I got the impression that the need for antibiotics would be included. IF this white paper comes out discouraging antibiotic use, I feel we are going to suffer. Everytime I get really excited about a new PANDAS article that I can print and show to physicians (including the recent Leckman/Murphy article) I find that they all discourage the use of antibiotics.

 

I want to know from all of these physicians, how would they treat their own child if that child had a history of rheumatic fever. How they would treat their own child, not a patient, is most likely with longterm antibiotics. It has been proven for a long time that you do not just wait to see if a child with rheumatic fever happens to contract strep. It seems so simple. I think the push to minimize any use of antibiotics to prevent "super bugs" needs to be closely watched. I fear we will get to the point where it will be near impossible to get them if it continues the way it has been, not just with PANDAS, but with Lyme, etc...

 

I just don't want to panic every few months, trying to figure out how I will get antibiotics for all of my children. All four have proven over and over that they regress without them.

Colleen

[Stephanie2]

Regarding his comments on Lyme, how can he definitively that only 2 of his patients had lyme? Does he routinely run an igenex test on each child coming through the door? You don't know you have lyme unless you test for it, and even then...the false negatives.

 

Secondly, as a mother of 2 previously severely affected pandas boys who are now symptom free, it is very hard for me to hear that we should wait until the child is debilitated before stepping up treatment. I understand where he is coming from with the abx resistence. I get that. But what about thinking outside the box here. I mean we have 3 standard treatments: abx, steroids, ivig. There are so many more options out there. As many of you know my boys are maintained on Spironolactone, LDN and OLE. This has prevented the need for further IVIG, steroids and antibiotics (knock on wood).

 

So much more research is needed...

[peglem]

Oh my gosh...I am a dork and accidentally deleted my own post! Ughh.

 

I'll try to rewrite:

 

It doesn't matter if it is a suggestion or a guideline. Peds are very fearful of antibiotics and very afraid to "step outside of the box".

 

Just think of how much damage the NIMH website has done...recommending abs only if throat cultures are positive (not as prophylaxis or even if titers are elevated.) http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml and only recommending treating PANDAS like any other case of OCD (no abs, psych. drugs, and cbt)

 

Should an elevated strep. titer be treated with antibiotics?

No. Elevated titers indicate that a patient has had a past strep. exposure but the titers can not tell you precisely when the strep. infection occurred. Children may have "positive" titers for many months after one infection. Since these elevated titers are merely a marker of a prior infection and not proof of an ongoing infection it is not appropriate to give antibiotics for elevated titers. Antibiotics are recommended only when a child has a positive rapid strep. test or positive strep. throat culture.

 

What are the treatment options for children with PANDAS?

The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.

 

Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child's primary physician can help you decide which type of specialist your child may need to see to receive these treatments.

 

Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics.

I very much agree. I'm actually afraid of a set protocol. Too much, physicians are trying to practice medicine w/ a cookbook! Just look how much variation there is in how our kids respond to treatment! While I think it would be wonderful for all physicians to accept and acknowledge the existence of PANDAS, I'm afraid the paper may have the effect of limiting treatment options. The NIH will not sanction or recommend any treatment that may come back to bite them- I think recommendations will be conservative.

[T_Mom]

In light of your point Peglem, I want to pick up on the rheumatic fever issue which Colleenrn brought forward--

 

More then once have I heard that when a child has RF they are subsequently kept on antibiotics into their late teens-early twenties. THIS is important for PANDAS.

 

There is a reason Swedo's work included prophylaxis antibiotics. There is a direct connection with this illness--and for some abx appear to have a regulatory effect (on something!) -- fulfilling a role of more then just "preventative" in nature.

 

We had a well known neurologist in our area tell us that, "no one is perfect" when I told him we just wanted to get our oldest d back to 100%. He thought she had come a long way (and she had, from doctors wanting to admit her to the Hopkins psych. unit, anorexia, etc.)...BUT she was not 100%...We left that doctor and thankfully found someone who said, "We are going to get you back to 100% again." THAT is what a parent needs. Antibiotics appeared to play a critical role in our case, and in the case of many others--

 

Am I afraid of long term issues, sure.

 

But-- until someone comes up with a better solution there is no other option that will "hold" my d at a functioning level.

 

Clearly this is an issue for us all-- After a year in which we had 4 exacerbations, each time affecting her w/moderate OCD/mild ticcing/ and school failure and with each time antibiotics "took it away"...well, we decided to keep her on full strength antibiotics. She had a wonderful year--until I tried to cut the amount to half and she was (at the same time) exposed to strep. THAT was August and we are still trying to get her back to where she was. This is important.

Edited December 6, 2010 by T.Mom

[3boysmom]

TMom, I agree 100%!