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First off, I don't want to frighten anyone. My DS14 had an MRI referral when a traditional doc didn't know what to do(except wanted to mask symptoms with meds)when I told her of his symptoms- ocd, depression, tics, loss of math skills, emotional upset, and on. In the meantime, found a fabulous doctor in Columbus, Dr. Lewis, and started treating his infection(s), plus adding supplements for under-methylation (gene mutation), low D, Pyrroles, etc. He has had great results so far.

I still had the MRI scheduled (took 8 weeks)and thought what the heck, let's see what the MRI shows...a 7mm lesion on his basal ganglia. We are beside ourselves.

 

There is little, if any, research about long term damage caused by PANDAS/PANS. Anyone have any similar findings? Know of any new research?

 

We are taking this one day at a time. The Neurologist is stumped, his behavioral psych is stumped, his PC doc is clueless, and I am waiting patiently for follow-up with Dr. Lewis.

 

BTW, thru all of this the Neurologist had his Q10 levels tested and they were low. Started on a chain store brand (not the most potent, but are quite expensive) and we have seen a 3 fold improvement in all symptoms. Of the 29 blood, gene, urine, and stool tests given by Dr. Lewis, Q10 was not one of them. I wall ask on next visit why not- maybe another factor-key in the PANDAS/PANS protocol....or may just be an increase in his immune system.

 

 

To everyone who replied: Thank you so very much! Obviously, I haven't figured out to respond to individual posts. I WILL figure it out! In the mean time, I will look into all the great information and links suggested. I will also update with any new findings (positive or negative). Just know, without this website and your support my DS14 would be on multi anti-psychotic meds or institutionalized or worse- would have killed himself. Yes, it was that bad. Without the resources here, I would have never found out about PANDAS/PANS or Dr. Lewis (who was on the collective list). From August, when he couldn't make eye contact and needed a mouth guard to today, where he wants to paint his room and plan a vacation to Florida. There is hope and I thank this forum for that!

Edited by EpicHsupport
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Our integrative MD talked to me about CoQ10 for mitochondrial disease. DD tested negative so we have not pursued, and I know zero about it, but wondering if that could be at work here? She said she finds mitochondrial disease commonly at the route of PANDAS infections. Also I know that lesions can be found with chronic Lyme, but again I know little detail about this - DD had an MRI and it was thankfully negative so I never explored anymore about it. I am sure if you google brain lesions/Lyme you would get some information on that.

 

First off, I don't want to frighten anyone. My DS14 had an MRI referral when a traditional doc didn't know what to do(except wanted to mask symptoms with meds)when I told her of his symptoms- ocd, depression, tics, loss of math skills, emotional upset, and on. In the meantime, found a fabulous doctor in Columbus, Dr. Lewis, and started treating his infection(s), plus adding supplements for under-methylation (gene mutation), low D, Pyrroles, etc. He has had great results so far.

I still had the MRI scheduled (took 8 weeks)and thought what the heck, let's see what the MRI shows...a 7mm lesion on his basal ganglia. We are beside ourselves.

 

There is little, if any, research about long term damage caused by PANDAS/PANS. Anyone have any similar findings? Know of any new research?

 

We are taking this one day at a time. The Neurologist is stumped, his behavioral psych is stumped, his PC doc is clueless, and I am waiting patiently for follow-up with Dr. Lewis.

 

BTW, thru all of this the Neurologist had his Q10 levels tested and they were low. Started on a chain store brand (not the most potent, but are quite expensive) and we have seen a 3 fold improvement in all symptoms. Of the 29 blood, gene, urine, and stool tests given by Dr. Lewis, Q10 was not one of them. I wall ask on next visit why not- maybe another factor-key in the PANDAS/PANS protocol....or may just be an increase in his immune system.

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Just curious has anyone said if they think that the pandas caused the lesion, or the lesion caused the pandas. How do you plan to proceed? Are you continuing with the abx, and supplements? Sorry for all the questions and maybe you won't have any more info until you see your neuro. Just basically thinking out loud here. It must be very scary for you. I hope you find out more answers and get treatment.

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My son's MRI also revealed white matter lesions. I don't think it was in the basal ganglia area, but definite white matter disease. He has had 3 MRI's since this nightmare began. The first two showed the same lesions with no change, but the last one also showed total brain volume loss, so this is very concerning for us, as well. I read that severe depression and anxiety can cause brain volume loss. Please know my thoughts are with you. We are in a horrendous flare right now, and I'm beginning to feel less hopeful, as my son has been very severe for almost three years now. :-(

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Not sure if any of these will help, but here are some links that discuss basal ganglia lesions:

 

 

http://www.stritch.luc.edu/lumen/MedEd/neurology/Disorders%20of%20the%20Basal%20Ganglia.pdf (I had trouble with this one loading on my system, but you may not)

 

http://ivrylab.berkeley.edu/pdf/adi_05.pdf

 

http://www.rightdiagnosis.com/sym/basal_ganglia_lesion.htm

 

 

 

None of these may have anything to do with your situation, but maybe you can present them to whoever you feel is the best doc to think it over IF they are unclear on what could be causing these or how to treat them.

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I found this in regards to Lyme, it is just one of the things that should be evalauated for.

 

http://radiology.rsna.org/content/253/1/167.full.pdf

Methods:

Institutional review board approval was obtained and

HIPAA compliance was followed. This study retrospectively

reviewed the MR imaging findings of all patients seen

from 1993 to 2007 in whom neuro-Lyme disease was suspected

and who were referred for MR imaging of the brain

for the evaluation of neurologic symptoms.

Results: Of 392 patients suspected of having neuro-Lyme disease,

66 patients proved to have the disease on the basis of

clinical criteria, serologic results, and response to treatment.

Seven of these 66 patients showed foci of T2 prolongation

in the cerebral white matter, one had an enhancing

lesion with edema, and three demonstrated nerve-root or

meningeal enhancement. Of the seven patients with foci of

T2 prolongation in the white matter, three were an age at

which white matter findings due to small-vessel disease are

common.

Conclusion: In cases of nerve-root or meningeal enhancement, Lyme

disease should be considered in the differential diagnosis

in the proper clinical setting.

RSNA, 2009

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http://brain.oxfordjournals.org/content/135/11/3453.short?rss=1

 

Antibodies to surface dopamine-2 receptor in autoimmune movement and psychiatric disorders

Russell C. Dale1, Vera Merheb1, Sekhar Pillai1, Dongwei Wang2, Laurence Cantrill2, Tanya K. Murphy3, Hilla Ben-Pazi4, Sophia Varadkar5, Tim D. Aumann6, Malcolm K. Horne6,7, Andrew J. Church8, Thomas Fath9 and Fabienne Brilot1

 

excerpt

 

Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients.
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http://brain.oxfordjournals.org/content/135/11/3453.short?rss=1

 

Antibodies to surface dopamine-2 receptor in autoimmune movement and psychiatric disorders

Russell C. Dale1, Vera Merheb1, Sekhar Pillai1, Dongwei Wang2, Laurence Cantrill2, Tanya K. Murphy3, Hilla Ben-Pazi4, Sophia Varadkar5, Tim D. Aumann6, Malcolm K. Horne6,7, Andrew J. Church8, Thomas Fath9 and Fabienne Brilot1

 

excerpt

 

Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients.

Wow Kim. Just thought I would excerpt a little more from that paper:

"Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients. Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenhams chorea, 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection and 4/44 patients with Tourettes syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease or control groups. We conclude that assessment of dopamine-2 receptor antibodies can help define autoimmune movement and psychiatric disorders."

There is no mention of testing for lyme.

Edited by rowingmom
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http://brain.oxfordjournals.org/content/135/11/3453.short?rss=1

 

Antibodies to surface dopamine-2 receptor in autoimmune movement and psychiatric disorders

Russell C. Dale1, Vera Merheb1, Sekhar Pillai1, Dongwei Wang2, Laurence Cantrill2, Tanya K. Murphy3, Hilla Ben-Pazi4, Sophia Varadkar5, Tim D. Aumann6, Malcolm K. Horne6,7, Andrew J. Church8, Thomas Fath9 and Fabienne Brilot1

 

excerpt

 

Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients.

Just thought I would excerpt a little more from that paper:

"Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients. Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenham’s chorea, 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection and 4/44 patients with Tourette’s syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease or control groups. We conclude that assessment of dopamine-2 receptor antibodies can help define autoimmune movement and psychiatric disorders."

There is no mention of testing for lyme.

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What are the implications of a lesion on the basal ganglia?

 

 

This is where I am starting from. What ARE the implications? If I found out anything, I will be sure to follow up (after we rule out TB or other).

 

New to the forum. Sorry about the reply in the wrong place.

Edited by EpicHsupport
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