Anonymous wrote:I think any kid who is having that amount of problems should have a complete medical workup including genetic testing and brain imaging. My kid turned out to have atypical zebra findings on both. And he does have some behavioral issues. And it was a study at NIH that found the results and got us going in the right direction.

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Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

DP. We participate in the NIH ADHD research studies. The brain MRIs they do are not experimental. The researchers are looking to see if there are differences between the ADHD and NT brains and the development trajectory - among other things.

When the neurologist who reads the brain MRI identifies something atypical they contact the participants. They have an ethical (if not legal) obligation to do so. This was how we learned my DS has a Chiari Malformation. They showed us on the scan, discussed it with us and suggested we follow up on it with our medical provider. They also sent the report to our doctors and gave us a copy of the MRI.

Of course, the study isn't for primary care but the NIH staff are incredible.

that’s what I said - the brain scans are experimental, ie, part of an experience. they are not meant to diagnose a separate neurological issue like a cyst or tumor (and they cannot diagnose ADHD either but that’s a separate question).

of course a brain MRI can turn up something else or something incidental. which is actually a reason to avoid them. I read a horrifying study about the number of kids subjected to uneccesary brain surgery due to “incedidentalomas”.

Incidental findings are NOT a reason to avoid a scan! Incidentals are a reason to make damn sure you have a good diagnostician. No good brain surgeon does an unnecessary surgery. Knowledge is power, and that girl might have something that a qualified doctor could help her get treated in a meaningful way. Sending that mama so much LOVE.

Incidental findings are absolutely a reason to avoid unnecessary imaging. If a neurologist recommends an MRI then sure.

“Unnecessary” is the key word there. No one is talking about unnecessary imagine. Get off your gatekeeping high horse. That poster’s child has all the symptoms of a brain cyst or worse.

Anonymous wrote:Could someone point me to the thread about the brain cyst? My child also has a brain cyst that may or may not be the source of concerning symptoms. Thank you.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

DP. We participate in the NIH ADHD research studies. The brain MRIs they do are not experimental. The researchers are looking to see if there are differences between the ADHD and NT brains and the development trajectory - among other things.

When the neurologist who reads the brain MRI identifies something atypical they contact the participants. They have an ethical (if not legal) obligation to do so. This was how we learned my DS has a Chiari Malformation. They showed us on the scan, discussed it with us and suggested we follow up on it with our medical provider. They also sent the report to our doctors and gave us a copy of the MRI.

Of course, the study isn't for primary care but the NIH staff are incredible.

that’s what I said - the brain scans are experimental, ie, part of an experience. they are not meant to diagnose a separate neurological issue like a cyst or tumor (and they cannot diagnose ADHD either but that’s a separate question).

of course a brain MRI can turn up something else or something incidental. which is actually a reason to avoid them. I read a horrifying study about the number of kids subjected to uneccesary brain surgery due to “incedidentalomas”.

Incidental findings are NOT a reason to avoid a scan! Incidentals are a reason to make damn sure you have a good diagnostician. No good brain surgeon does an unnecessary surgery. Knowledge is power, and that girl might have something that a qualified doctor could help her get treated in a meaningful way. Sending that mama so much LOVE.

Incidental findings are absolutely a reason to avoid unnecessary imaging. If a neurologist recommends an MRI then sure.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

DP. We participate in the NIH ADHD research studies. The brain MRIs they do are not experimental. The researchers are looking to see if there are differences between the ADHD and NT brains and the development trajectory - among other things.

When the neurologist who reads the brain MRI identifies something atypical they contact the participants. They have an ethical (if not legal) obligation to do so. This was how we learned my DS has a Chiari Malformation. They showed us on the scan, discussed it with us and suggested we follow up on it with our medical provider. They also sent the report to our doctors and gave us a copy of the MRI.

Of course, the study isn't for primary care but the NIH staff are incredible.

that’s what I said - the brain scans are experimental, ie, part of an experience. they are not meant to diagnose a separate neurological issue like a cyst or tumor (and they cannot diagnose ADHD either but that’s a separate question).

of course a brain MRI can turn up something else or something incidental. which is actually a reason to avoid them. I read a horrifying study about the number of kids subjected to uneccesary brain surgery due to “incedidentalomas”.

Incidental findings are NOT a reason to avoid a scan! Incidentals are a reason to make damn sure you have a good diagnostician. No good brain surgeon does an unnecessary surgery. Knowledge is power, and that girl might have something that a qualified doctor could help her get treated in a meaningful way. Sending that mama so much LOVE.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

DP. We participate in the NIH ADHD research studies. The brain MRIs they do are not experimental. The researchers are looking to see if there are differences between the ADHD and NT brains and the development trajectory - among other things.

When the neurologist who reads the brain MRI identifies something atypical they contact the participants. They have an ethical (if not legal) obligation to do so. This was how we learned my DS has a Chiari Malformation. They showed us on the scan, discussed it with us and suggested we follow up on it with our medical provider. They also sent the report to our doctors and gave us a copy of the MRI.

Of course, the study isn't for primary care but the NIH staff are incredible.

that’s what I said - the brain scans are experimental, ie, part of an experience. they are not meant to diagnose a separate neurological issue like a cyst or tumor (and they cannot diagnose ADHD either but that’s a separate question).

of course a brain MRI can turn up something else or something incidental. which is actually a reason to avoid them. I read a horrifying study about the number of kids subjected to uneccesary brain surgery due to “incedidentalomas”.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

DP. We participate in the NIH ADHD research studies. The brain MRIs they do are not experimental. The researchers are looking to see if there are differences between the ADHD and NT brains and the development trajectory - among other things.

When the neurologist who reads the brain MRI identifies something atypical they contact the participants. They have an ethical (if not legal) obligation to do so. This was how we learned my DS has a Chiari Malformation. They showed us on the scan, discussed it with us and suggested we follow up on it with our medical provider. They also sent the report to our doctors and gave us a copy of the MRI.

Of course, the study isn't for primary care but the NIH staff are incredible.

Anonymous wrote:

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).

But the purpose of those scans is not diagnostic, it’s experimental. If you think your kid has a neurological issue, see a neurologist, who will order the scans they think are necessary.

Anonymous wrote:There are some NIH studies on ADHD that have been recruiting lately - they all include brain scans (but also the commitment of the study itself).