4 years Post - IVIG- Meeting with Dr. K

[Pandas_chicago]

Good morning...

 

Today I meet with Dr. K to discuss my son, who is 4 years post IVIG and symptom free...I want to share with all and say things will get better.....I am very interested to find out who the manufacturer was of the IVIG that was used on my son...we need to target these specific companies - to get them to donate money to the foundations....to use as grant money for families that need financial aide and if the companies do not want to donate money...can they donate product for the treatment, etc.

 

I know that Talecris has been a supporter of the research but that is just one of many manufacturers...I am going to be working on getting dollars for the foundation - I have set aside work hours to do so...also we do need to start to target the Insurance companies...does anyone know if this is going on? Perhaps one function of the foundation should be someone to help with Insurance disputes, I know that when I was going through this - last thing I wanted to worry about was processing paperwork - back and forth to try and get my medical bills paid -

 

What about a fundraiser - currently I sit on the committee for Cystic Fibrosis - I was asked to do this prior to my son becoming ill...I have worked the last 3 years on the annual fundraiser in Chicago which on an average has raised $150,000.00 in a one night event....profit being about 70% = $105,000.00 ...the organization has regional fundraisers ....I know many of you are "in' the disease right now and don't have time for any of these ...I remember as if it were yesterday ..just an update

[bmom]

Sounds like you have some good ideas. We are not symptom free, but better and I feel like I should be helping do something. Let me know if I can help. You can pm me and I will give email and phone if I can help.

[Doug]

WOW 4 years!!!

I can only pray we have the same thing

Dr K is the best

we would love to help if we can

so let us know

Doug&Tracie

[thereishope]

Congratulations on reaching 4 years!

 

Which foundation are you involved with that you will be trying to raise money for research?

[Pandas_chicago]

Congratulations on reaching 4 years!

 

Which foundation are you involved with that you will be trying to raise money for research?

 

 

Good question - looks like there are two foundations currently - Pandas Foundation and Pandas Resource Network - I will talk to both and Dr. K - as well as some of my peers ...I've looked at both sites - PF and PRN - I will then contact both foundations and learn more about what their plans are for the funds donated...

 

Currently I know that PF has the "Got Strep" campaign and has begun distributing 50,000 informational cards to doctors offices and clinics regarding Pandas - the object is to "inform" and children diagnosed sooner ...this was PF's first task which is already underway.

 

I've read that PRN - donations with be linked intially to research projects - for the study of Pandas

 

both would be good - I am personally interested in seeing the foundations - help the families that are active in the disease - relief efforts

[7upMom]

Congratulations on reaching 4 years!

 

Which foundation are you involved with that you will be trying to raise money for research?

 

 

Good question - looks like there are two foundations currently - Pandas Foundation and Pandas Resource Network - I will talk to both and Dr. K - as well as some of my peers ...I've looked at both sites - PF and PRN - I will then contact both foundations and learn more about what their plans are for the funds donated...

 

Currently I know that PF has the "Got Strep" campaign and has begun distributing 50,000 informational cards to doctors offices and clinics regarding Pandas - the object is to "inform" and children diagnosed sooner ...this was PF's first task which is already underway.

 

I've read that PRN - donations with be linked intially to research projects - for the study of Pandas

 

both would be good - I am personally interested in seeing the foundations - help the families that are active in the disease - relief efforts

 

I like this!!! I have wondered what would we have done had we not been able to refinance? I would be very interested in helping to raise money for families that don't have those things available to them for whatever reason. Count me in, pm me anytime with anything I can do , I know my 17 y/o daughter has been designing some t-shirt designs for locally here just to get the word out and she was thinking about selling them to help raise money for families that couldn't afford treatments. So maybe we could go forward with that if we could find a place to put that money and someone to coordinate that?? I just can't do that part of it right now. Even if we all did small efforts like that, I think it would really add up!!

[P_Mom]

Great ideas!!!

 

So...how is your son according to Dr.K ...what is the plan? How do you know things will get better for our kids?? Only with IVIG??

 

Please elaborate with what Dr.K had to say!!'

 

Thanks!!!!!

[Pandas_chicago]

Great ideas!!!

 

So...how is your son according to Dr.K ...what is the plan? How do you know things will get better for our kids?? Only with IVIG??

 

Please elaborate with what Dr.K had to say!!'

 

Thanks!!!!!

 

 

My son according to Dr. K is "cured" - I really don't like throwing out that word - Dr. K is his primary physician now. I'm not a doctor and I can only share my story - but if you have a true Pandas child - it is a treatable disease...and you can get better.

 

Dr. K doesn't use IVIG for all cases - I would just like to point that out as well - but in the cases that he has used IVIG he has had huge success...

 

I'll follow up tonight!

[pixiesmommy]

Oh I wish I had known you were meeting with him today; maybe we could have met. We were there at 10:30am ourselves for a follow-up since Pixie's had strep post-IVIG. The word he used for Pixie is "recovered!" I was shocked that he was using even THAT word for her already!

 

I'm in Elgin, but we will be relocating in the next year (closer to Chicago) and as long as our recovery lasts, I am absolutely willing to help. I have a connection to a large downtown law firm that might like to have their name associated with fundraising too, which could be beneficial.

 

I will PM you with my contact info also.

 

-Manda

[thereishope]

Manda,

 

I'll be the first to ask. How was Pixie after she caught strep? Any blips in behavior? I am so glad she is doing well!

 

Vickie

[pixiesmommy]

will s/o so I don't hijack the thread

[Joan Pandas Mom]

Count me in too. I am in the mist of this, and have been for the past 6 years, but now on track. We are meeting with Dr. T. this week and phone consult with Dr. K next month. I would love to help raise money/fundraise for PANDAS parents too. Please let me know how I can be of some help. I'm not good at organizing a plan but am good at implementing one!

 

Great ideas!!!

 

So...how is your son according to Dr.K ...what is the plan? How do you know things will get better for our kids?? Only with IVIG??

 

Please elaborate with what Dr.K had to say!!'

 

Thanks!!!!!

 

 

My son according to Dr. K is "cured" - I really don't like throwing out that word - Dr. K is his primary physician now. I'm not a doctor and I can only share my story - but if you have a true Pandas child - it is a treatable disease...and you can get better.

 

Dr. K doesn't use IVIG for all cases - I would just like to point that out as well - but in the cases that he has used IVIG he has had huge success...

 

I'll follow up tonight!

[MomWithOCDSon]

Please count me in, as well. I'm in the Chicago area, too, and am ready and willing to go! Thanks for the great ideas; just let me know what I can add to implementation!