IVIG Recommendations?

[Joan Pandas Mom]

For those who have had IVIG's would you highly recommend it for others considering it?

[melanie]

For those who have had IVIG's would you highly recommend it for others considering it?

 

 

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice.

Oh we do the IVs at home

 

Melanie

[Joan Pandas Mom]

My son is 15 too. Is it the older they get the harder it is to get rid of the antibodies? You do the IVs at home? Do you see Dr. K?

 

For those who have had IVIG's would you highly recommend it for others considering it?

 

 

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice.

Oh we do the IVs at home

 

Melanie

[melanie]

My son is 15 too. Is it the older they get the harder it is to get rid of the antibodies? You do the IVs at home? Do you see Dr. K?

 

For those who have had IVIG's would you highly recommend it for others considering it?

 

 

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice.

Oh we do the IVs at home

 

Melanie

 

No I see Dr Jynouchi in Newark NJ .She doed modt of her patients at home.The Nurses are great .weve been very happy.The 1st IV we did we were in the hospital 3 days !! This is working out well about 4 hrs each IV.

 

Melanie

[brittanys mom]

For those who have had IVIG's would you highly recommend it for others considering it?

 

 

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice.

Oh we do the IVs at home

 

Melanie

 

What is the reasoning for monthly. I thought the IVIG treatments are recommended to be 90 days apart. What is the dosage he is getting? How many IVIG's has he had? Thanks for the info. We are going to need to get my 14 year old in for IVIG so I want all the info. I can get. She had 2 round back in 2006 30 days apart and had a bad reaction to the 2nd dose. The Dr. we had never followed through w/ antibiotics after the IVIG, so here we are. The second IVIG she had did help w/ her painful tics but all her other symptoms still persisted. Thank you and good luck.

[melanie]

For those who have had IVIG's would you highly recommend it for others considering it?

 

 

We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice.

Oh we do the IVs at home

 

Melanie

 

What is the reasoning for monthly. I thought the IVIG treatments are recommended to be 90 days apart. What is the dosage he is getting? How many IVIG's has he had? Thanks for the info. We are going to need to get my 14 year old in for IVIG so I want all the info. I can get. She had 2 round back in 2006 30 days apart and had a bad reaction to the 2nd dose. The Dr. we had never followed through w/ antibiotics after the IVIG, so here we are. The second IVIG she had did help w/ her painful tics but all her other symptoms still persisted. Thank you and good luck.

What kind of reaction?

[greeneyes48072]

I highly recommend the IVIG. We did it twice, June 09 and Nov 09. He is still in the healing process, but he actually has near symtptom free days. We never had that prior to the IVIG. In the last two months, only one tic flare up. All other behaivoral and developmental issues subsided after round one, round two was for the continuing tics....and let me say, it was very night and day before/after treatment. We didn't even realize how many behavioral things were linked to the PANDAS until they subsided.

[Alex]

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

[sf_mom]

Our experience has been very similar!!!! It worked in ways we could not have imagined... our child is a happy kid.

 

I highly recommend the IVIG. We did it twice, June 09 and Nov 09. He is still in the healing process, but he actually has near symtptom free days. We never had that prior to the IVIG. In the last two months, only one tic flare up. All other behaivoral and developmental issues subsided after round one, round two was for the continuing tics....and let me say, it was very night and day before/after treatment. We didn't even realize how many behavioral things were linked to the PANDAS until they subsided.

[melanie]

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

 

 

I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B?

[mama2alex]

Our son had IVIG (2g/kg) 9 weeks ago and we are very happy so far. The healing is going slower than I'd like, but we are hopeful. We are working with Dr. Kovacevic by phone (Stanford gave us the one IVIG but is no longer helping us) and he said full healing takes about a year. He is adamant that IVIG be given at a high dose (at least 1.5mg) to bring the child into remission.

 

If a child has an immune deficiency, then monthly lower dose IVIGs (after the first high dose round) make sense of course.

 

IVIG is considered aggressive, but in mind it's the best option. Definitely check out www.pandasnetwork.org if you haven't already.

 

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

[Alex]

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

 

 

I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B?

 

Melanie,

The reason we changed course from monthly was we talked to a group of parents who were doing monthly without positive results, and I talked to Dr. K who explanied why it doesn't work. Also, after talking to Dr. K, Dr. Bouboulis changed his protocol, and to my understanding, doesn't do monthly IVIG for PANDAS anymore because he now believes it is not the right approach.

 

Alex

[melanie]

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

 

 

I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B?

 

Melanie,

The reason we changed course from monthly was we talked to a group of parents who were doing monthly without positive results, and I talked to Dr. K who explanied why it doesn't work. Also, after talking to Dr. K, Dr. Bouboulis changed his protocol, and to my understanding, doesn't do monthly IVIG for PANDAS anymore because he now believes it is not the right approach.

 

Alex

 

aLEX,

 

Have you completed a high dose of IV ? I will speak with the md Dr K will speak with our Md Or do I have to pay his fee first?

 

Melanie

[Alex]

For those who have had IVIG's would you highly recommend it for others considering it?

 

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach.

 

Alex

 

 

I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B?

 

Melanie,

The reason we changed course from monthly was we talked to a group of parents who were doing monthly without positive results, and I talked to Dr. K who explanied why it doesn't work. Also, after talking to Dr. K, Dr. Bouboulis changed his protocol, and to my understanding, doesn't do monthly IVIG for PANDAS anymore because he now believes it is not the right approach.

 

Alex

 

aLEX,

 

Have you completed a high dose of IV ? I will speak with the md Dr K will speak with our Md Or do I have to pay his fee first?

 

Melanie

 

Melanie,

 

We did the high dose a week and a half ago. We plan on waiting at least 3 months before we consider another one. I don't know if you will have to pay Dr. K's fee, maybe not if the contact is between your MD and his. Our pediatrician wrote him an email and he wrote her right back. We didn't pay any additional fees but we had recently paid for a 1/2 hour phone consult. The explanation I got for why low dose monthly doesn't work for PANDAS is that one, it isn't enough to turn off the immune system for a while which is necessary to change the autoimmune process, two, doing it too often is like aggravating a wound that is in the process of healing, and three, some of the antiboidies that get introduced through IVIG are the very ones that are causing the problem. That is why kids often flare initially before the improvements start. I do not want to present myself as some IVIG expert. But when it comes to PANDAS, I believe strongly after flailing around for a year that Dr K. is the undisputed PANDAS expert. Certainly possible that your MD, who I'm sure is fantastic, my hear his explanation and disagree. Most of alll, good luck and there is nothing I want more then for all our kids to get better.

 

Alex

[melanie]

Danny does have a immune defiency,What if you have both PANDAS and ID?

Sorry Imsuch a pain

 

Melanie