Has anyone had a CT scan on their child?

[tpotter]

Yes. My son has had a CT scan, MRI and 6 separate eeg's (so many eeg's, because he does actually have some problems in the fronto-temporal lobes, and is also being treated for seizures.) One of the other two showed somethings questionable, but neither showed the basal ganglia (if it's not done by someone who really knows what they're doing, it doesn't tend to show the basal ganglia.) That being said, a PET scan, I have been told does show the basal ganglia much better.

 

What doctor are you using? Have you considered getting Dr. Cunningham's test done? There is a fee, but we felt it was VERY well worth it, because it confirmed the diagnosis for one of my boys (he really had pretty classic symptoms, but wasn't being diagnosed or treated properly up to that point), and the other one, it REALLY confirmed the dx (he has very different symptoms, and looks bipolar.) We treated him with abx, and literally overnight the really bad depressive symptoms he was having went away (he has since had PEX.)

 

If there is any question in your mind that something else might be going on, then do consider asking your ped. neurologist about doing a CT, MRI or PET scan...just to rule other stuff out. I am grateful that we did the CT and MRI, because it ruled out that something else was possibly going on.

 

Good luck.

 

 

 

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

[Charlotte Mom]

Yes. My son has had a CT scan, MRI and 6 separate eeg's (so many eeg's, because he does actually have some problems in the fronto-temporal lobes, and is also being treated for seizures.) One of the other two showed somethings questionable, but neither showed the basal ganglia (if it's not done by someone who really knows what they're doing, it doesn't tend to show the basal ganglia.) That being said, a PET scan, I have been told does show the basal ganglia much better.

 

What doctor are you using? Have you considered getting Dr. Cunningham's test done? There is a fee, but we felt it was VERY well worth it, because it confirmed the diagnosis for one of my boys (he really had pretty classic symptoms, but wasn't being diagnosed or treated properly up to that point), and the other one, it REALLY confirmed the dx (he has very different symptoms, and looks bipolar.) We treated him with abx, and literally overnight the really bad depressive symptoms he was having went away (he has since had PEX.)

 

If there is any question in your mind that something else might be going on, then do consider asking your ped. neurologist about doing a CT, MRI or PET scan...just to rule other stuff out. I am grateful that we did the CT and MRI, because it ruled out that something else was possibly going on.

 

Good luck.

 

 

Tpotter, I would love to learn more about your PEX. We have tried IVIG (although only 1) and I am seriously thinking of pursuing the PEX. Did you try IVIG first or go right to the PEX? Will you PM me your doctors name?

[faith]

Charlotte mom,

did you mean your child had PEX or IVIG (you said pex in your post).

 

If you are persuing PEX, are you saying IVIG has not helped? Where did you do it?

 

 

thanks

Faith

[amy s]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

 

 

My dd had 2 EEGs, showed nothing, 2 MRIs (showed nothing) and a "SPECT scan" which DID show inflammation in the basal ganglia "indicative of severe OCD" which we already knew she had. I paid out of pocket for that. It helped us to substantiate our case to the pediatrician about IVIg (didn't go through insurance so I don't know if that helps for insurance or not). But it helped in putting all the pieces together for our pediatrician. We did not try a PET scan or a CT.

[trggirl]

Hi Charlotte Mom,

 

I was also hoping you would post about your IVIG experience if you had the time.

[3boysmom]

Hi Charlotte Mom,

 

I was also hoping you would post about your IVIG experience if you had the time.

 

 

 

PEX? Is that the steroid burst? So much to learn!

[michele]

We had the PET today with Dr. Chugani. We go tomorrow for follow up with the Dr. C. I am nervous to know if it shows inflamation but also hope we find something out. It has been a long time coming and it is time to get some answers. I just hope it tells us something and we can find a way to treat it! We have had so many dead ends.

 

Michele

Hi Charlotte Mom,

 

I was also hoping you would post about your IVIG experience if you had the time.