Baxter interested in funding PANDAS IVIG research

[tpotter]

Fantastic. I would also contact Dr. Leckman at Yale, and Dr. K. Also, Dr. Swedo would be a good contact, as well.

 

BTW, another response was that Dr. L. is a proponent of LD IVIG more often, but actually she does HD (we've had it from her.) She, though prefers PEX. Actually, Dr. J. prefers LD.

 

This is really exciting. It's about time that something specific like this happens.

[tpotter]

Dr. L. has started a review of what appears to be working in her patients. I received a phone call from someone assisting her, asking what my children are currently taking, what treatments they have had (IVIG, PEX, steroids, abx, etc.), what results we had with each, etc. My understanding is that she is planning to present that at the OCD conference.

[7upMom]

Also- this is prob a dumb ? but since PANDAS isn't an "on the books" disorder how is it Canada has it as something they pay for then? Does Canada have a protocol for what they consider PANDAS and we just don't here- how confusing and strange

 

As a Canadian I don't get it either. I don't get why it is even listed as treatment for PANDAS here in Canada because my son's neurologist has been trying for a very long time to find someone in Canada with some experience using IVIG for PANDAS or post-strep problems (Sydenham's etc.). VERY FRUSTRATING!!!!!!!! So, it is listed here in Canada as a treatment option for PANDAS but apparently there are no Canadian doctors actually using it!!!!!!!!!!!!!!!!

 

(Sorry - just venting a little!) But if anyone in the USA thinks Canadian kids are actually getting IVIG treatment for PANDAS - it seems that this is not the case. In fact we just got back from a medical trip to Calgary (that Manitoba Health sent us on) only to be told that no one in Canada has PANDAS etc as an area of expertise - that my son would have to go to the USA or to London, England to be seen and treated.

 

PKM

 

WOW this is really disappointing and I bet highly frustrating for you, to know its covered there but it doesn't mean squat if noone will treat it. Wouldn't they consider coordinating care with a docotr from here , phone or email for a protocol so you could get your child treated? very interesting and sad ) :

[PKM]

 

WOW this is really disappointing and I bet highly frustrating for you, to know its covered there but it doesn't mean squat if noone will treat it. Wouldn't they consider coordinating care with a docotr from here , phone or email for a protocol so you could get your child treated? very interesting and sad ) :

 

It is indeed very frustrating and confusing (how is it that it is covered but no one is using it??? - seems so odd to me). I am trying very hard to get care for him but it is very difficult. It seems that the old NIMH guidelines are standing in my way most of the time. I really wish they would update their recommendations - soon!!!!!!! I will keep trying though - can't give up!

 

PKM

[momto2pandas]

This appears to be the guideline for Canadian coverage of IVIG for PANDAS:

http://www.bloodmed.com/contentimage/guidelines/2854.pdf

 

If I were you, I would look up the authors, and figure out which one is the neuro person, or contact Heather Hume directly (her email address is on the paper). This is the group that made the recommendation that IVIG should be covered by the Canadian Health Ministry - hopefully at least one of them contributed to that recommendation and could direct you to someone who would implement it, or at the least, they obviously communicate with the ministry and could make a recommendation that Canada cover treatment administered in the US - my understanding is that this does happen in some cases (not necc for PANDAS but for other things).

[PKM]

This appears to be the guideline for Canadian coverage of IVIG for PANDAS:

http://www.bloodmed.com/contentimage/guidelines/2854.pdf

 

If I were you, I would look up the authors, and figure out which one is the neuro person, or contact Heather Hume directly (her email address is on the paper). This is the group that made the recommendation that IVIG should be covered by the Canadian Health Ministry - hopefully at least one of them contributed to that recommendation and could direct you to someone who would implement it, or at the least, they obviously communicate with the ministry and could make a recommendation that Canada cover treatment administered in the US - my understanding is that this does happen in some cases (not necc for PANDAS but for other things).

 

I hadn't thought of contacting the authors directly myself - that is certainly a great idea and I will give it a try. My son's neurologist was trying to get him to the US but Manitoba Health was really pushing her to find someone in Canada - then when we got to Calgary, the neurologist there said she was not an expert in this area and she had nothing to offer. What a waste of Manitoba Health resources and our own! (Manitoba Health paid for our flight and the dr's appointment but we were expected to pay for our hotel, car rental, incidentals, etc.)

 

Perhaps now that this did not work out they will be more willing to send him to the US.

 

I noticed that in order for the IVIG to be covered in Canada for PANDAS, the diagnosis has to be made by an "expert". I would really like to know where these so-called Canadian "experts" are. Hopefully one of the authors will be able to help with that.

 

Thanks for your thoughts and input!

 

PKM

[EAMom]

BTW, another response was that Dr. L. is a proponent of LD IVIG more often, but actually she does HD (we've had it from her.) She, though prefers PEX. Actually, Dr. J. prefers LD.

 

Who is Dr. J.?