PET Scan...has anyone had one?

[michiganpandas]

Hi...I am waiting approval to get a PET scan for my daughter to see if there is inflammation of the basal ganglia....if so, then we will do the ivig.....just curious if anyone has had one done? (i know the michigan group has had a few of us). If you have had one for your child did it show inflammation?

[sebrown1126]

If you're in MI, no reason to wait for approval for a PET. Contact Children's Hospital. Dr. C at Children's does research on this topic and Children's will most likely do a serotonin PET-CT at no charge.

Edited July 27, 2011 by sebrown1126

[michiganpandas]

Hi...we can't get in until sept. with dr. c.

[Worried_Dad]

If you're in MI, no reason to wait for approval for a PET. Contact Children's Hospital (Cathy at cgermain@pet.wayne.edu). Dr. Harry Chugani at Children's does research on this topic and Children's will most likely do a serotonin PET-CT at no charge.

 

Yep - we did this back in March 2008 and it confirmed inflammation in the basal ganglia. Dr. C was wonderful: he personally intervened to get us an appt with our local ped neuro clinic after they'd been rejecting us for almost a year.

 

Was nice to have that extra corroboration... even though most of our local docs ultimately ignored it. (Sigh)

[wornoutmom]

Yes and yes... But u already knew that. Call dr c again if u can. He has been good about getting pandas kids in asap if they are in distress. Or contact Cathy at the above email and she will likely get your appointment moved up

[T_Mom]

We were all ready to do Dr C's research scan but then decided that the symptoms our child was having merited at least TRYING IVIG regardless of what might show up on the scan results--(remember it is research and the PET scan radiation is present -- for a small child it is more noteable.) Due to the radiation issues we decided to go ahead and do IVIG, as that question of IF IVIG might help would have otherwise always been there in our case, in our minds.

 

For us, IVIG has been a wonderful, amazing thing-- recovery clearly there, 11 weeks and I cannot tell you enough that it was the best thing we did all year, dramatic differences.

[sebrown1126]

I had originally posted about Dr. C. I would email Cathy because I don't think you have to have a consult appointment with him before you could get the PET-CT. Plus, he is VERY research oriented, and so more brains to scan means that he gets to continue his research and his funding. So it behooves him to make sure you get the PET.

 

We did not participate in the research study but he did offer it to us. My son's issues started because of anesthesia so it was too big a risk for us to take. I do understand "the greater good" and that his research would potentially help others, but I just couldn't do it.

 

So we did other things to know if IVIG would work. We did a rule out MRI (no sedation), an EEG (to rule out seizures), and a prednisone burst. All combined, along with his very dramatic clinical symptoms was enough for us to decide to do the IVIG and actually get it covered with a special appeal to our insurance carrier.

 

We are three months out from IVIG, and although we had an extremely difficult time after the infusion, our son is doing amazing now and we are so glad we did IVIG. Not just to keep those nasty strep infections away!

[cynditk]

So doing a PET scan helps convince insurers that there is a reason to cover hd IVIG? I'd never heard this before. Is this something Dr.B recommends doing, or do you have to go through the research guy? How would one get considered for this? We live in Seattle and are flying in to see Dr.B end of August.

[nicklemama]

You must now see Dr C before you are accepted for the PET scan. My DS was scheduled for the PET scan in April w/out seeing Dr C. Dr K had set it up. We got a call the day before cancelling it and telling us we must see Dr C first. The wait for the appt was more than I wanted, at that point, considering my DS went a year w/out a proper diagnosis and treatment. We opted to go ahead and go w/ IVIG w/ Dr K and not wait. Dr C lost his funding for the PET scans, at least at that time and started requiring an appt first for him to decide if he thought the child had PANDAS or not.

[Mary M]

You already know my dd had the PET Scan with Dr C but I thought it might help someone who reads this to know...

my dd received the PET Scan and it clearly depicted "activation" (inflammation) in the basal ganglia.

Mary

from Michigan