3-D brain scan results

[Pudgeo]

Hello, We went to the Amen Clinic for our results...my son's scans were consistent with a PANDAS diagnosis and the Dr said when they compared them to their database they were the same as 6 other children who had encephalitiis....this is good info for me to take back to Kaiser...

THe meds we are going to try are...amantidine, geodon, neurontin,dextrostant...he wants us to do trials of each one and see if it helps.He said the amantidine should help the most,,it is a med for PArkinsons.

I am very happy to have some direction here...ALso he felt HBOT was necessary, so I will start that.He felt the HBOT was more important than the IVIG. He felt since we had done 3 and not seen any improvement that we should try the HBOT.

I am very please with clinic and happy to have more information to help treat my son.

Thanks for everyones helpful comments...Sarah

[EAMom]

Sarah,

 

Thanks for the update...you are making me curious:

 

1) So did he think it was encephalitis or PANDAS? ....or is he calling PANDAS a type of encephalitis?

 

2) If it's PANDAS did he explain why IVIG wasn't working? Did he not think IVIG would work b/c you already has so many and it didn't help?

(Maybe the IVIG didn't work b/c it was the wrong type?...I know some folks on this forum are starting to discuss the different types of IVIG.)

 

3) What's HBOT?

 

4) I'll have to look up those drugs...is he wanting to give anything specifically for inflamation?

 

5) Did he think your son's prognosis was good?

[Pudgeo]

Hi EAMOM ..

I think the answers to 1 & 2 are my son went way to long misdiagnosed. Kaiser thought he was having seizures and we messed around for 8 months on sez meds...He then became much worse last summer. I think he's had it for too long. A theory I have is that IVIG may work if caught early? not sure..

HBOT is hyperbaric oxygen therapy...

It helps repair brain cells and inflammation...

4 I'm not sure if any of those are an anti-inflammatory...they would help cool down the over active parts of my sons brain..so he can think again..

After I saw the scans it made me realize why my son can't think & remember...his brain is on fire and needs to be cooled down..

Sarah

[EllTeeDee]

Hello, We went to the Amen Clinic for our results...my son's scans were consistent with a PANDAS diagnosis and the Dr said when they compared them to their database they were the same as 6 other children who had encephalitiis....this is good info for me to take back to Kaiser...

THe meds we are going to try are...amantidine, geodon, neurontin,dextrostant...he wants us to do trials of each one and see if it helps.He said the amantidine should help the most,,it is a med for PArkinsons.

I am very happy to have some direction here...ALso he felt HBOT was necessary, so I will start that.He felt the HBOT was more important than the IVIG. He felt since we had done 3 and not seen any improvement that we should try the HBOT.

I am very please with clinic and happy to have more information to help treat my son.

Thanks for everyones helpful comments...Sarah

 

Hi Sarah,

So glad you found a good clinic. I'm going to give them a call. Thanks for all the good information.