IVIG in northern california, any docs recommended or stanford?

[anonymous0121]

hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept?

 

thank you

deborah

[sf_mom]

There are not many that have had success getting IVIG via Stanford... only a few exceptions. Who are you seeing in a few days and I can probably give you some perspective. Unless Stanford has really changed their perspective or your child has serious immune deficiencies I highly doubt they will offer IVIG. There is one immunologist that might prescribe IVIG but I understand he is currently out for an extended period.

 

See below: Your best bet for IVIG is Dr. Julie Griffith and Dr. Schweig. Dr. Griffith has an in-depth understanding of ASD/PANS while Dr. Schweig probably see more PANS children and not as many ASD.

 

All the Dr.'s below understand PANS, some work more with ASD community ( * ), some will provide IVIG if needed ( # )

Dr. Lynn Mielke in Pleasanton: http://www.developmentalspectrums.com * #

Dr. Julie Griffith in San Rafael: http://www.mybrainhealth.org * #

Dr. Raj Patel in Redwood City: http://www.drrajpatel.net/ *

Whole Child Wellness: Belmont: http://www.wholefamilywellness.org *

Dr. Sunjya Schweig: Petalume: http://hillparkmedicalcenter.com #

Edited November 13, 2013 by SF Mom

[anonymous0121]

There are not many that have had success getting IVIG via Stanford... only a few exceptions. Who are you seeing in a few days and I can probably give you some perspective. Unless Stanford has really changed their perspective or your child has serious immune deficiencies I highly doubt they will offer IVIG. There is one immunologist that might prescribe IVIG but I understand he is currently out for an extended period.

 

See below: Your best bet for IVIG is Dr. Julie Griffith and Dr. Schweig. Dr. Griffith has an in-depth understanding of ASD/PANS while Dr. Schweig probably see more PANS children and not as many ASD.

 

All the Dr.'s below understand PANS, some work more with ASD community ( * ), some will provide IVIG if needed ( # )

Dr. Lynn Mielke in Pleasanton: http://www.developmentalspectrums.com * #

Dr. Julie Griffith in San Rafael: http://www.mybrainhealth.org * #

Dr. Raj Patel in Redwood City: http://www.drrajpatel.net/ *

Whole Child Wellness: Belmont: http://www.wholefamilywellness.org *

Dr. Sunjya Schweig: Petalume: http://hillparkmedicalcenter.com #

my son has IgG and IgA def, he received IVIG from dr gupta in Irvine 10 years ago but had a bad 6th infusion, crapy nurse jabbed him bad multiple times and had to bring in two anestesiologists to hold him down and poke more, he developed severe PTSD to needles, but now he is begging for IVIG or something to help, the rages have been severe as well as the tics and OCD. Dr Griffith was the one that sent us to Stanford in 2006 when my son developed tics after having tonsils out, Dr lewis there recommended IVIG but we didn't do it because of his PTSD to needles. I tried to call dr lewis but didn't get return call (immunology), so we have apt Thursday with a new immunologist in ped immunology, praying they will do ivig.... we just cant keep watching him live like this, he begged me last week to die and go to heaven, breaking my heart. I had no luck with dr schweig last year and whole child wellness couldn't help either. thanks for all the names.

[momofadult]

Have you considered neurologist Dr. Michael Chez in Sacramento? He follows children under 18. He has done IVIG, PEX and immune modulators.

[sf_mom]

If Stanford doesn't work out definitely reconsider Dr. Griffith as will now prescribe in home services for IVIG.

Our son is also IgA deficient and we are currently using IV nutrients over IVIG to support his immune system and it's been as helpful. Dr. Mielke is good for providing that kind of service if you are unable to find IVIG quickly.

 

Edit: If you need an LLMD to investigate Lyme, Bartonella, Babesia and other TBI you are welcome to PM. Dr. Mielke can also help with testing for those infections. We found our kids gestational Lyme looked like ASD and treatment has been extremely helpful to them. That had all three of the infections I listed and rage was one of our son main symptoms.

Edited November 13, 2013 by SF Mom

[anonymous0121]

If Stanford doesn't work out definitely reconsider Dr. Griffith as will now prescribe in home services for IVIG.

 

Our son is also IgA deficient and we are currently using IV nutrients over IVIG to support his immune system and it's been as helpful. Dr. Mielke is good for providing that kind of service if you are unable to find IVIG quickly.

 

Edit: If you need an LLMD to investigate Lyme, Bartonella, Babesia and other TBI you are welcome to PM. Dr. Mielke can also help with testing for those infections. We found our kids gestational Lyme looked like ASD and treatment has been extremely helpful to them. That had all three of the infections I listed and rage was one of our son main symptoms.

how do I PM you? I would love to talk more with you.....deborah

[PowPow]

Deborah, please contact pandasnetwork.org

 

They may have a stanford pans parent who can help you.

[sf_mom]

I PM'd you back. Check the upper right hand corner of your computer.