Did anyone else get the Pandasnetwork email?

[tpotter]

I will 2nd, 3rd, 4th and 5th BeesKneesMommy. Personally, I think there are a few individual personal opinions when choosing to leave Dr. B. off that list, which really makes me extremely upset. Putting out that list should have nothing to do with personal opinion. And, for the record, I also noticed his name was not on that list, and sent a request as to why. I didn't even get an answer. Dr. B. along with the rest of our team saved my childrens' lives! He is a very caring and intelligent immunologist and person. Furthermore, there is no specific NIH/NIMH protocol for treating PANS, as anyone who has been around awhile will attest to...particularly since we still aren't even positive of everything that causes it. If there was a specific protocol, all our children would be cured!

[Hopeny]

I completely agree. I think Dr. B. is an amazing doctor, I was sort of worried from the posting that perhaps he is not treating PANDAS anymore but that would be hard to imagine. He has never brought up IVIG for my DD9, although our LLMD threw it out there. Dr. B. brought my daughter back. I also bring my 3 yo to him as an immunologist because she has an immune problem and recent Lyme too. His knowledge and understanding of immune processes and antibiotics is extensive and I can't imagine not having him on our team.

[ptcgirl]

Well, I'm glad I'm not the only one thinking that it was odd for him to be left off of the list. It appears to me to be a personal situation between whomever owns the website and Dr B. This situation hasn't made me upset with Dr B. Truly I'm more concerned with now being able to believe anything that Pandas Network is putting out. What else is being left off because of their own agenda? I know how much Dr B has helped my child. To the bottom of my soul I'm thankful that we were blessed to be able to see him and receive his treatment. It just hurts to see someone specifically set out to lessen him and his worth to this community. Unless there is a reason of course. But it surely isn't what was written to me by them. Very odd behavior from this organization.

[jtp]

I was very confused as well as to why he would be omitted from the list. My son has come very far and is doing pretty good too. We are very happy with him.I knew his practice was very busy but I had no idea that families were now on a wait list.

 

thanks for posting.

Jeannie

[landamom]

Just wondering but does anyone know for sure that he isn't on the list due to personal reasons from those who run the website? Maybe he didn't want to be on the list anymore? He's a very good doctor but I can understand not wanting to put yourself on a list if you can't actually see any of those new patients.

[3boysmom]

Isn't PANAS Network. Beth M's site or is that another one?

[Hayley]

PANDAS Network is run by Diana Pohlman and a small group of other VERY dedicated parent volunteers. Doctors at the frontline (including most of the top docs cited frequently on this forum) are working with the PANDAS Network's leaders providing advice and guidance on an ongoing basis.

 

My experience with PANDAS Network and the folks who operate it is that they are doing their best, with limited financial resources, to support families and advance understanding and treatment of PANS in the broader medical community. This is no easy task with all the skepticism out there and they are -- very smartly -- drawing lines to keep the message simple and straightforward and to avoid the pitfalls of any unnecessary murkiness that could impede any effort to gain acceptance of PANDAS and the treatments that are working for our kids. This is absolutely necessary if we are to get to a point where the masses of pediatricians, educators, parents, insurance companies etc. accept PANDAS as a real and actual thing that CAN be treated. The organization is completely volunteer-run by parents who have taken on this tremendous challenge.

 

Re: the recommended doctors list, the Network decided they had to have some criteria for inclusion and decided, as has been discussed here, to use the NIMH's recommended protocol for IVIG as that criteria. While awareness and parent support overall are central to their mission, they are also taking on the very difficult task of advocating for treatment and coverage options for PANDAS families that include IVIG. Whether you agree or not with the criteria they set, you have to respect their right to draw a line for logistical and legal reasons if nothing else.

 

I don't know Dr. B, and have not had my child treated by him -- not because I think there is anything wrong with him, but because we happen to have another PANDAS doctor and immunologist here in our back yard who we found first. I'm thrilled for all of those families who have been helped by Dr. B. Clearly what he's doing is working for some children and I don't think anybody is trying to dismiss that. His approach to IVIG, by all accounts I've heard at least, does differ somewhat from that which most of the other big PANDAS docs are using. As such, it does not seem surprising that he might be an outlier from a list of doctors who are more conservatively adhering to the closest thing we have to a standard in this field right now. Given how complex all PANDAS cases are, of course, this is an area where a "standard" isn't exactly practical. But if we're trying to gain acceptance (and insurance coverage) so that our kids can get the treatment they need, I would argue that as a "movement" of sorts, the PANDAS community can benefit from creating some parameters in our messaging so that the general public can wrap their heads around our case. We as parents aren't held to such parameters in seeking solutions for our kids and neither are the doctors in their individual work (which is great...that's how innovation happens!), but from an organizational perspective, PANDAS Network HAS TO DO THIS.

 

When my DD was diagnosed with PANDAS, I was amazed to find this forum and the wonderful resource that is the collective parent community's knowledge and experience. This is incredibly powerful, but it doesn't replace the need for a structured, organized non-profit entity that can work on the advocacy/PR/research front. I believe that PANDAS Network is the closest thing we have to such an entity. I, for one, feel an obligation to support and promote their work which, ultimately, I think will benefit all of our children.

[airial95]

Hayley,

 

Thanks for your clarification - I have heard about the "NIMH IVIG standards" protocol criteria for inclusion as well. And I think that's why I was so confused. However, when I look at that list - I do see other docs who DO NOT follow that protocol strictly but are still included.

 

I also questioned the * criteria for "more experienced" and how that was vetted.

 

Our pediatrician is on the list - and by comparison from discussion from all other parents on every forum I've been invloved on (as well as the opinion of 2 of the PANDAS "experts") he's one of the only pediatricians they've encountered that "get it" - to the point where one of the experts after confirming the dx in my daughter actually said they didn't need to see her again unless our doc hit a road bump because he's "got it down". He sees several PANDAS patients - and has had several prior to my kids (he will admit my son is his most challenging one though!!!) And was the one to dx PANDAS in both kids - my son at 26 months old (when at that time all other "experts" would've ruled it out b/c the age didn't fit the NIMH criteria at the time - there is now a case study written about my son by Dr. M citing the youngest documented case at that time.)

 

I may be biased - but I would think my doc would have a GIANT * by his name!

[airial95]

And is the Pandas Resource Network also a well organized non-profit for PANDAS? I believe they also have a medical advisory board in place as well - which I think adds legitimacy beyond a parents group (however - both are needed!!! The more the merrier!)

[Hayley]

And is the Pandas Resource Network also a well organized non-profit for PANDAS? I believe they also have a medical advisory board in place as well - which I think adds legitimacy beyond a parents group (however - both are needed!!! The more the merrier!)

 

They are a very organized group with 501c3 status pending and expected soon. They do have a (very impressive) Scientific Advisory Board as well: http://pandasnetwork.org/2010/12/scientific-advisory-board-members/

[nojo]

Our family has been helped so much by finding this message board. We have seen many of the Doctors in our area and out of our area already on the suggested Dr. list. We have been helped greatly by Dr. L, Dr. B and the Cunningham test. The information on the both the Pandas Network and Pandas Resource network has given us help and hope. Many parents have offered us guidance. There are so many smart, caring resourceful Doctors, researchers and parents that have become involved in this crazy journey. My hope is that they can all come together to figure this out so we can heal our children.

[beeskneesmommy]

PANDAS Network has also been helpful in our journey. Again, I state that a multidisciplinary approach may be beneficial, as not one entity or specialist has all of the answers for each individual child. I also seek resources and information from several different sources in order to gain as much knowledge as possible. This includes the organization discussed.

[tpotter]

Those running PANDASNetwork have been a huge help to me when I couldn't find help elsewhere (I've been around since before PANDASnetwork was created.) I thank my lucky stars every day for that help.

 

But, I look over the list, and I know that we have been to many of these doctors, and I have spoken to others who have been to other doctors on both lists.

 

I will tell you that there are doctors on that list who do not follow the standards, either. Dr. B. prescribes what he, as a licensed, certified IMMUNOLOGIST recommends for the person's diagnosis. He looks for immunodeficiencies in these children, and if he finds them, he treats per the guidelines for the type of immunodeficiency that the child has. If Dr. B. had not joined our team, I fear that my children might not be alive today! Dr. B. got treatment for my children when other doctors on that list either couldn't or wouldn't.

 

The fact that the children Dr. B. treats, as most (if not all) of the children with PANS have an autoimmune condition, means that we need to be open to what is going on with these kids. Treating strep is not the only issue with these kids, and Dr. B. is open to that. He recognizes that there may be multiple infections. He treats with antibiotics and with IVIG. And, he refers to other specialists if he feels it is needed.

 

As I said, I am very disappointed that this stand has been taken by pandasnetwork. Dr. B. is one of the best PANS doctors out there no holds barred. The IVIG standards that you mention are not set in stone; they are not even based on a completed study. So, to eliminate someone because of arbitrary "standards" is not acceptable. In fact, it is no more acceptable than doctors who say that they can only treat strep if the child tests positive, and then only for a 10 day period!

 

You know I have been one of pandasnetwork's biggest supporters, and I appreciate all the hard work that the volunteers are doing but, I cannot support it on this one. I truly believe that this decision is extremely harmful to incoming parents.