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dsmom

Cunningham Panel results help? Anti Tubulin means....?

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I've not been on the forum for a while but when I need help this is where I turn. I am wondering if anyone knows what this might indicate:

 

DS15 came down w/ PANDAS in 2011, has been throught the ringer and is doing better than he's ever done, but he's not all better by a long shot, so I thought I would have the Cunningham Panel done again to see what it's showing ...

So literally 2 years to the day we have the new test results...and I have to say I'm at a loss because it's not exactly what I was expecting (now, to be honest I'm not sure what THAT was).

 

Ok, I know the DRD1 and 2 are shocking from 2013, but note the Tubulin numbers....

 

His 2013 results were:

DS Normal mean

DRD1 16,000 1056

DRD2 16,000 6000

LYSO-GM1 160 147

TUB 500 609

CaM KII 111 95

 

His 2015 results are:

 

DRD1 2000 1056

DRD2 16,000 6000

LYSO-GM1 80 147

TUB 8000 609

CaM KII 126 95

 

Does anyone have a glimmer as to what the Tubulin might signify? I mean, geez, it's way WAY up from the 2013 results and he was such a mess back then.

 

I know his dopamine auto-antibodies are still out of whack on DRD2, big time, but the PEX in 2013 took the DRD1 back down into reality, thank gosh, and is THE reason he's back out in the world today....he's currently being treated by a Naturopath for Bart but it's a slow road because he feels absolutely awful when he takes the Malerone, and he's only at 1/6 of the dose. His doc says Its Not a Race, but to be honest I kind of feel like it is.

 

If anyone has any insights or understands the significance of the individual titers I would love some feedback. I do have an appt w/ his neuro, who is a PANDAS-believer, this Friday, but I'm not sure he even knows what these mean, and there are some very educated parents on this panel whose insights I value greatly who just might, so feel free to share if so!

 

Thank you so much,

DsMom Erin

 

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It's All way over my head: http://www.jimmunol.org/content/178/11/7412.full

 

Home WHAT DOES THE CUNNINGHAM…

 

The Cunningham Panel™ is comprised of five (5) different tests. Four of these clinical tests include enzyme-linked immunosorbent assays (ELISAs) to measure antibody titers against four neuronal antigens present in the brain; these neuronal antigens include:

1. Anti-Dopamine Receptor D1

2. Anti-Dopamine Receptor D2L

3. Anti-Lysoganglioside GM1

4. Anti-Tubulin

Each of these neuronal antigen targets were chosen because of a correlation with symptoms of neuropsychiatric behavior. Many targets were originally screened and tested, and did, or did not, show significance. The tests we selected include the four (4) autoimmune neurologic targets (anti-dopamine D1, anti-dopamine D2L, anti-tubulin and anti-lysoganglioside) which are highly concentrated in neuronal cells in the brain and have involvement in neuropsychiatric and/or motor movement activity.

Anti-Dopamine Receptors

Dopamine D1 receptors are highly concentrated on post-synaptic neurons in the brain whereas Dopamine D2L receptors are highly concentrated on pre and post-synaptic neurons. Normal functioning of dopamine receptors are responsible for many neurologic processes such as fine motor control, cognition and other forms of behavior.

Anti-Lysoganglioside

Lysoganglioside GM1 is a concentrated in the central nervous system and associated with membranes of nerve cells. Autoantibodies directed against lysoganglioside may interfere with normal neurologic activity and have also been associated with degenerative neurologic conditions such as Gillian-Barre syndrome and other neurologic disorders.

Anti-Tubulin

Tubulin is an intracellular scaffolding protein located in all cells but in high concentrations within the cells of the brain. Anti-tubulin antibodies may interfere with normal neuronal cell function and have been associated with other autoimmune related conditions such as Hashimoto’s Thyroiditis and other autoimmune thyroid conditions.

CaMKII

The fifth test, CaMKII (Calcium-dependent Calmodulin Protein Kinase II) is a cell stimulation assay in which human serum is incubated on human neuronal cells. CaMKII is involved in the up-regulation of many neurotransmitters in the brain. The increase or stimulation of CaMKII activity by serum antibodies is measured compared to a baseline control and elevated activity may be associated with an infection-triggered autoimmune condition.

Reference Normal Ranges

Each of the five tests include a “Normal Range” which is a range of values ascertained by testing an appropriately identified normal pediatric population for this type of panel. The normal ranges are listed in a table under each of the five test headings.

PANDAS and PANS diagnoses are based upon defined clinical characteristics. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS and PANS. Because these are metabolic tests, laboratory values can change over time and certain immune modulatory treatments may affect the laboratory results. These treatments include intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. Therefore, we recommend taking specimens prior to these treatments or waiting 6-8 weeks after treatment.

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I don't know specifically what a high anti tubulin means but my sons was high as well. It was the highest of the 4. I was interested to read what was posted from the Cunningham website. I've never read that before. My son was in the research study and had the panel in 2010, just after starting treatment.

 

You can google anti tubulin. There are several papers on it. It's thought to be linked to movement disorders. My son had chorea like movements rather than severe tics. He was primarily OCD, anger and emotional lability before treatment.

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As always my people (you all) come through for me!

 

Thank you for the info, I hadn't thought to re-visit the Cunningham website, I was using the debrief that comes w/ the test results, duh, I should look at the website for more detail!

 

4Nikki THANK YOU for the link, I am going to pore over that as well pre-Neuro visit, which is tomorrow, so I can assail him w/ questions as usual.

:)

If anything of note is discussed at the appointment I will post, just in case there are others like me that would appreciate more in depth understanding.

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