Re: Re: What is your PANDAS treatment protocol? Do I have to do

[Guest guest]

I see.My DAN! said there was probably a major PANDAS or PITAND element in my case,if not entirely the cause.He said there was nobody else in New Mexico who believes PANDAS exists,so it wasn't worth looking into any further.I wrote Dr.Swedo,and asked what to do.I never heard back.

To: mb12 valtrex Sent: Fri, January 15, 2010 11:26:41 AMSubject: Re: Re: What is your PANDAS treatment protocol? Do I have to do

I had to ask our DAN to test for it. His staff completely over looked the signs in tests and the changes in behavior. We ran a PANDAS profile through Neuroscience (no longer available sadly) and it was confirmed. We then went to see Dr. Sudhir Gupta at UC Irvine and he confirmed and prescribed IVIG. Our DAN at the time refused to prescribe it, and told me it would be worth it to fly from NY to CA to see Dr. Gupta because Dr. Gupta could get it covered for us. Sadly, he couldn't. We changed DANs and then didn't want to fly back to CA after 1 year just to get a refill on a prescription, which would have been necessary. Our new DAN agree with the PANDAS diagnosis, gave my son one IVIG treatment in his office then signed off on us continuing IVIG at home. We ended up doing 16 treatments, all paid for out of pocket. Still paying.....

Kerrie

In a message dated 1/15/2010 12:27:55 P.M. Eastern Standard Time, thorenstd124@ yahoo.com writes:

How did you find a doctor willing to diagnose PANDAS and get you IVIG?

[Guest guest]



i agree roger you sound SOOOO much like my aspie friend who is also high functioning and 33 and HER issues are PANDAS related and treatment makes her life so much better

Re: Re: What is your PANDAS treatment protocol? Do I have to do

I had to ask our DAN to test for it. His staff completely over looked the signs in tests and the changes in behavior. We ran a PANDAS profile through Neuroscience (no longer available sadly) and it was confirmed. We then went to see Dr. Sudhir Gupta at UC Irvine and he confirmed and prescribed IVIG. Our DAN at the time refused to prescribe it, and told me it would be worth it to fly from NY to CA to see Dr. Gupta because Dr. Gupta could get it covered for us. Sadly, he couldn't. We changed DANs and then didn't want to fly back to CA after 1 year just to get a refill on a prescription, which would have been necessary. Our new DAN agree with the PANDAS diagnosis, gave my son one IVIG treatment in his office then signed off on us continuing IVIG at home. We ended up doing 16 treatments, all paid for out of pocket. Still paying.....

Kerrie

In a message dated 1/15/2010 12:27:55 P.M. Eastern Standard Time, thorenstd124@ yahoo.com writes:

How did you find a doctor willing to diagnose PANDAS and get you IVIG?

[Guest guest]

My GI problems are too severe for steroids.

To: mb12 valtrex Sent: Sat, January 16, 2010 12:53:12 PMSubject: Re: What is your PANDAS treatment protocol? Do I have to do

, has your DAN tried steroids for pandas/pitands (especially pitands since antibiotics won't help)? This is my son's major issues as well. We recentlytried steroids for the first time and I would say his pandas symptoms are 80-90% better. Some doctors will prescribe it in conjunction with antibiotics or alone (if it's viral). This is tough to manage, especially since antib/steroids cause such gut issues. We are still trying to find the right balance...>> i agree roger you sound SOOOO much like my aspie friend who is also high functioning and 33 and HER issues are PANDAS related and treatment makes her life so much better> > Re: Re: What is your PANDAS treatment protocol? Do I have to do> > > > I had to ask our DAN to test for it. His staff completely over looked the signs in tests and the changes in behavior. We ran a PANDAS profile through Neuroscience (no longer available sadly) and it was confirmed. We then went to see Dr. Sudhir Gupta at UC Irvine and he confirmed and prescribed IVIG. Our DAN at the time refused to prescribe it, and told me it would be worth it to fly from NY to CA to see Dr. Gupta because Dr. Gupta could get it covered for us. Sadly, he couldn't. We changed DANs and then didn't want to fly back to CA after 1 year just to get a refill on a prescription, which would have been necessary. Our new DAN agree with the PANDAS diagnosis, gave my son one IVIG treatment in his

office then signed off on us continuing IVIG at home. We ended up doing 16 treatments, all paid for out of pocket. Still paying.....> > Kerrie> > In a message dated 1/15/2010 12:27:55 P.M. Eastern Standard Time, thorenstd124@ yahoo.com writes:> > > > How did you find a doctor willing to diagnose PANDAS and get you IVIG?> > >

[Guest guest]

My GI problems are too severe for steroids.

To: mb12 valtrex Sent: Sat, January 16, 2010 12:53:12 PMSubject: Re: What is your PANDAS treatment protocol? Do I have to do

, has your DAN tried steroids for pandas/pitands (especially pitands since antibiotics won't help)? This is my son's major issues as well. We recentlytried steroids for the first time and I would say his pandas symptoms are 80-90% better. Some doctors will prescribe it in conjunction with antibiotics or alone (if it's viral). This is tough to manage, especially since antib/steroids cause such gut issues. We are still trying to find the right balance...>> i agree roger you sound SOOOO much like my aspie friend who is also high functioning and 33 and HER issues are PANDAS related and treatment makes her life so much better> > Re: Re: What is your PANDAS treatment protocol? Do I have to do> > > > I had to ask our DAN to test for it. His staff completely over looked the signs in tests and the changes in behavior. We ran a PANDAS profile through Neuroscience (no longer available sadly) and it was confirmed. We then went to see Dr. Sudhir Gupta at UC Irvine and he confirmed and prescribed IVIG. Our DAN at the time refused to prescribe it, and told me it would be worth it to fly from NY to CA to see Dr. Gupta because Dr. Gupta could get it covered for us. Sadly, he couldn't. We changed DANs and then didn't want to fly back to CA after 1 year just to get a refill on a prescription, which would have been necessary. Our new DAN agree with the PANDAS diagnosis, gave my son one IVIG treatment in his

office then signed off on us continuing IVIG at home. We ended up doing 16 treatments, all paid for out of pocket. Still paying.....> > Kerrie> > In a message dated 1/15/2010 12:27:55 P.M. Eastern Standard Time, thorenstd124@ yahoo.com writes:> > > > How did you find a doctor willing to diagnose PANDAS and get you IVIG?> > >

[Guest guest]

My GI problems are too severe for steroids.

To: mb12 valtrex Sent: Sat, January 16, 2010 12:53:12 PMSubject: Re: What is your PANDAS treatment protocol? Do I have to do

, has your DAN tried steroids for pandas/pitands (especially pitands since antibiotics won't help)? This is my son's major issues as well. We recentlytried steroids for the first time and I would say his pandas symptoms are 80-90% better. Some doctors will prescribe it in conjunction with antibiotics or alone (if it's viral). This is tough to manage, especially since antib/steroids cause such gut issues. We are still trying to find the right balance...>> i agree roger you sound SOOOO much like my aspie friend who is also high functioning and 33 and HER issues are PANDAS related and treatment makes her life so much better> > Re: Re: What is your PANDAS treatment protocol? Do I have to do> > > > I had to ask our DAN to test for it. His staff completely over looked the signs in tests and the changes in behavior. We ran a PANDAS profile through Neuroscience (no longer available sadly) and it was confirmed. We then went to see Dr. Sudhir Gupta at UC Irvine and he confirmed and prescribed IVIG. Our DAN at the time refused to prescribe it, and told me it would be worth it to fly from NY to CA to see Dr. Gupta because Dr. Gupta could get it covered for us. Sadly, he couldn't. We changed DANs and then didn't want to fly back to CA after 1 year just to get a refill on a prescription, which would have been necessary. Our new DAN agree with the PANDAS diagnosis, gave my son one IVIG treatment in his

office then signed off on us continuing IVIG at home. We ended up doing 16 treatments, all paid for out of pocket. Still paying.....> > Kerrie> > In a message dated 1/15/2010 12:27:55 P.M. Eastern Standard Time, thorenstd124@ yahoo.com writes:> > > > How did you find a doctor willing to diagnose PANDAS and get you IVIG?> > >