New to group, PANDAS, Brain Lesion, Valtrex, IG, Help

[Guest guest]

Hi, Im new to the group.. can you tell me more about this? How did you get it,

do you administer or does a dr do it? Did a DAN prescribe? My son is 7, PANDAS

and brain lesion (believe viral injury), during flares found high Mycoplasma..

and just recently had titers tested and came back high for HHV6 and sackie

B2. Treatments include biomed, MB12 injections, VitC/Glutathione IV,

Biofeedback, 8 months straigh of high dose abx, now on profilatic dose of

Azithro, Vancomycin, Ketoconazole, 100 bill probiotics and now im researching

Valtrex before our next appt. Immunologist wont prescribe it and wont do IVIG.

DAN is likely to prescribe the valtrex. PANDAS Neuro will send out for IVIG but

after several reminders, phone calls and emails he has yet to send paperwork to

the center so appears to be a lost cause. Also had very high Cunningham Test

for PANDAS results.

Son changed at 15 months old after MMR vaccine followed by Roseolla virus..

which conviently is caused by HHV6..which could also cause the lesion. Tired at

aggrevated. he has chronic low WBC counts, chronic anemia, and his platelets are

trending downwards.. I have to treat this virus(s) and get his body out of this

diseased state. So a few questions to all of you as I research:

1. Any must do's Im not already doing?

2. Can you tell me more about oral IG and SB IG? How to get it, how its working

for you?

3. Valtrex.. whats its correlation with MB12, what is typical dosage and

timeline for treatment (DAN is likely to ask me this if he doesnt know)? Is this

a 10 day thing or long term?

4. Any one else here with similar situation (issues and child with brain lesion

possibly viral induced)?

Im going to start doing some searches now in the group..but those are my main

questions right now.

Thanks!!

Tina

> >

> >

> >

> > Has anyone used IVIG orally with their child to treat PANDAS? We just got

> > an order through Dr. Megson b/c symptoms kept coming back on azithromax.

> >

> > Any good or bad experiences w/ taking IVIG orally?

> >

> > Thanks,

> > Soraya

> >

> >

> >

> >

>

[Guest guest]

I also forgot to mention..intensive immune workup showed inflammation and a very

overactive immune system...in particular his TNF, T cells and cytokines were all

abnormal.

Thanks

Tina!

>

>

> Hi, Im new to the group.. can you tell me more about this? How did you get it,

do you administer or does a dr do it? Did a DAN prescribe? My son is 7, PANDAS

and brain lesion (believe viral injury), during flares found high Mycoplasma..

and just recently had titers tested and came back high for HHV6 and sackie

B2. Treatments include biomed, MB12 injections, VitC/Glutathione IV,

Biofeedback, 8 months straigh of high dose abx, now on profilatic dose of

Azithro, Vancomycin, Ketoconazole, 100 bill probiotics and now im researching

Valtrex before our next appt. Immunologist wont prescribe it and wont do IVIG.

DAN is likely to prescribe the valtrex. PANDAS Neuro will send out for IVIG but

after several reminders, phone calls and emails he has yet to send paperwork to

the center so appears to be a lost cause. Also had very high Cunningham Test

for PANDAS results.

>

> Son changed at 15 months old after MMR vaccine followed by Roseolla virus..

which conviently is caused by HHV6..which could also cause the lesion. Tired at

aggrevated. he has chronic low WBC counts, chronic anemia, and his platelets are

trending downwards.. I have to treat this virus(s) and get his body out of this

diseased state. So a few questions to all of you as I research:

>

> 1. Any must do's Im not already doing?

> 2. Can you tell me more about oral IG and SB IG? How to get it, how its

working for you?

> 3. Valtrex.. whats its correlation with MB12, what is typical dosage and

timeline for treatment (DAN is likely to ask me this if he doesnt know)? Is this

a 10 day thing or long term?

> 4. Any one else here with similar situation (issues and child with brain

lesion possibly viral induced)?

>

> Im going to start doing some searches now in the group..but those are my main

questions right now.

>

> Thanks!!

> Tina

>

[Guest guest]

Hi Tina,I'm very new to IVIG and only started researching a few days ago when our DAN suggested it when I told her repeated bouts of azithro weren't working for my son's PANDAS. She suggested oral IG, brand name Gamastan, said she's had good success w/ other patients of hers and only has to be given once a week. I've heard that IVIG is often prescribed for PANDAS when all else fails. We'll give it a shot. Are you happy with your DAN? Dr. Megson can get you started right away on IVIG if it's appropriate for your situation, no run-around at all. It's just expensive. Soraya

Hi, Im new to the group.. can you tell me more about this? How did you get it, do you administer or does a dr do it? Did a DAN prescribe? My son is 7, PANDAS and brain lesion (believe viral injury), during flares found high Mycoplasma.. and just recently had titers tested and came back high for HHV6 and sackie B2. Treatments include biomed, MB12 injections, VitC/Glutathione IV, Biofeedback, 8 months straigh of high dose abx, now on profilatic dose of Azithro, Vancomycin, Ketoconazole, 100 bill probiotics and now im researching Valtrex before our next appt. Immunologist wont prescribe it and wont do IVIG. DAN is likely to prescribe the valtrex. PANDAS Neuro will send out for IVIG but after several reminders, phone calls and emails he has yet to send paperwork to the center so appears to be a lost cause. Also had very high Cunningham Test for PANDAS results.

Son changed at 15 months old after MMR vaccine followed by Roseolla virus.. which conviently is caused by HHV6..which could also cause the lesion. Tired at aggrevated. he has chronic low WBC counts, chronic anemia, and his platelets are trending downwards.. I have to treat this virus(s) and get his body out of this diseased state. So a few questions to all of you as I research:

1. Any must do's Im not already doing?

2. Can you tell me more about oral IG and SB IG? How to get it, how its working for you?

3. Valtrex.. whats its correlation with MB12, what is typical dosage and timeline for treatment (DAN is likely to ask me this if he doesnt know)? Is this a 10 day thing or long term?

4. Any one else here with similar situation (issues and child with brain lesion possibly viral induced)?

Im going to start doing some searches now in the group..but those are my main questions right now.

Thanks!!

Tina

> >

> >

> >

> > Has anyone used IVIG orally with their child to treat PANDAS? We just got

> > an order through Dr. Megson b/c symptoms kept coming back on azithromax.

> >

> > Any good or bad experiences w/ taking IVIG orally?

> >

> > Thanks,

> > Soraya

> >

> >

> >

> >

>