Back :( Is Cunningham Panel definite? Other labs out of whack and don

[momma2sethandjiji]

I have posted twice before. My son was clinically dx'ed with PANDAS by Dr. K. following his steroid burst/antibiotic trial even though his symptoms worsened with each of the meds. His primary symptoms following mystery illness were hoarding trash, muscle pains, headaches, palilia (repeat whispering tic) and lethargy. All disappeared completely eventually but the repeat whispering tic which continues frequently to this day. Now, with a slightly runny nose and improvements in diet (for entire family, nothing to do with any symptoms), he has started in with a grunting tic. It has, of course, got me concerned yet again. We have opted for no further treatments in the past, as he is not severe. However, we don't want to be overlooking something else considering he has other odd symptoms:

 

1. During this period of PANDAS symptoms following an extended undiagnosed sickness, he developed brown melanin spots in the white of his eyes. Dr K recommended local copper checks. Did that, and both his serum and urine copper were low. Ceruloplasmin was normal. Saw a neuro at Dr. K's recommendation who ruled out Wilson's disease and told us to see our pedi over copper concerns. Pedi is not concerned even though I read several articles on mineral deficiencies causing neuro issues. Eye doctor said half the population has these brown spots from sun exposure. My child is 7 and don't get in the sun that often. Pedi did run a battery of liver/kidney, CBC, c-reactive protein and allergy tests. All were normal, so he told me to just accept he has tics and quit worrying. No explanation as to why my child was normal before this sickness that made him start hoarding and hiding things in his underwear out of parking lots, having leg aches so bad in the days following he has to be packed, etc. Neuro says he has always had tics/OCD but I never noticed until the sickness and shouldn't worry. Grrrrr

2. Iron has been low on several occasions. Once very low. He is a green eater, beef eater AND takes a multivitamin with iron nightly since he was 2 years old. On recheck, upon my concern of some mineral issue, iron was way over normal with absolutely no changes in diet or vitamins only a few weeks following initial very low iron??? He refused to check copper saying he had never checked a child's copper in his years as a pedi (the previous coppers came from a walk in clinic and my begging since Dr. K recommened - seems they all have trouble doing what he asks of me)

 

 

So my questions:

Is the Cunningham Panel definitive? I don't want to be sitting back and ignoring something else that could possibly be going wrong causing issues with his minerals or the issues he is having a result of the mineral issues if that makes sense. If it could for certain rule it out or diagnose, I think I could sleep better.

 

If I paid a visit to Dr. K (whom I love and trust completely), is there any autoimmune testing etc outside of Cunningham he could order to ensure nothing else is plaguing my child. I do feel it is autoimmune in nature but don't want to ignore the minerals. Will he investigate triggers, etc? I would be willing to spend the week or whatever it took.

 

Also are there any lab type places where I do not have to have any sort of orders from a physician. If so, are there any tests anyone could recommend me doing to get some clarity or rule anything else out? I have thrown so much money away locally and feel defeated and made to feel like I am being a hyperchondriac. Thanks in advance for reading.

 

 

[Mayzoo]

I have posted twice before. My son was clinically dx'ed with PANDAS by Dr. K. following his steroid burst/antibiotic trial even though his symptoms worsened with each of the meds. His primary symptoms following mystery illness were hoarding trash, muscle pains, headaches, palilia (repeat whispering tic) and lethargy. All disappeared completely eventually but the repeat whispering tic which continues frequently to this day. Now, with a slightly runny nose and improvements in diet (for entire family, nothing to do with any symptoms), he has started in with a grunting tic. It has, of course, got me concerned yet again. We have opted for no further treatments in the past, as he is not severe. However, we don't want to be overlooking something else considering he has other odd symptoms:

 

1. During this period of PANDAS symptoms following an extended undiagnosed sickness, he developed brown melanin spots in the white of his eyes. Dr K recommended local copper checks. Did that, and both his serum and urine copper were low. Ceruloplasmin was normal. Saw a neuro at Dr. K's recommendation who ruled out Wilson's disease and told us to see our pedi over copper concerns. Pedi is not concerned even though I read several articles on mineral deficiencies causing neuro issues. Eye doctor said half the population has these brown spots from sun exposure. My child is 7 and don't get in the sun that often. Pedi did run a battery of liver/kidney, CBC, c-reactive protein and allergy tests. All were normal, so he told me to just accept he has tics and quit worrying. No explanation as to why my child was normal before this sickness that made him start hoarding and hiding things in his underwear out of parking lots, having leg aches so bad in the days following he has to be packed, etc. Neuro says he has always had tics/OCD but I never noticed until the sickness and shouldn't worry. Grrrrr

2. Iron has been low on several occasions. Once very low. He is a green eater, beef eater AND takes a multivitamin with iron nightly since he was 2 years old. On recheck, upon my concern of some mineral issue, iron was way over normal with absolutely no changes in diet or vitamins only a few weeks following initial very low iron??? He refused to check copper saying he had never checked a child's copper in his years as a pedi (the previous coppers came from a walk in clinic and my begging since Dr. K recommened - seems they all have trouble doing what he asks of me)

 

 

So my questions:

Is the Cunningham Panel definitive? I don't want to be sitting back and ignoring something else that could possibly be going wrong causing issues with his minerals or the issues he is having a result of the mineral issues if that makes sense. If it could for certain rule it out or diagnose, I think I could sleep better.

 

If I paid a visit to Dr. K (whom I love and trust completely), is there any autoimmune testing etc outside of Cunningham he could order to ensure nothing else is plaguing my child. I do feel it is autoimmune in nature but don't want to ignore the minerals. Will he investigate triggers, etc? I would be willing to spend the week or whatever it took.

 

Also are there any lab type places where I do not have to have any sort of orders from a physician. If so, are there any tests anyone could recommend me doing to get some clarity or rule anything else out? I have thrown so much money away locally and feel defeated and made to feel like I am being a hyperchondriac. Thanks in advance for reading.

 

Here is what the site says about the test results:

 

The values from these five assays performed in duplicate and triplicate, are reported in the Patient Profile Report compared with a normal control range. Assay test values above the normal range are reported. An integrated summary of the results is reported as a relative “risk” of PANDAS/PANS scale based on the group of test values compared to normal ranges and means. The relative risk scale includes the designation of:

1. PANDAS/PANS NOT LIKELY
2. PANDAS/PANS LIKELY
3. PANDAS/PANS HIGHLY LIKELY

PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment.

 

http://www.moleculera.com/testing/

[JuliaFaith]

We did 'hair testing' (covered by insur.) and found that vit./minerals were not being absorbed adequately. After worm and parasite treatment there was marked improvement in hair testing 3 months later.

 

Have you treated for these?

[Mayzoo]

We saw a PANDAS expert who is an immunologist and he ran a battery of blood and urine tests so we could know if we were missing anything. In our case, we were missing quite a few things. I will list her tests run in case you we want to research them and push for any of them. Keep in mind our daughter also has autism, so some of the tests are to keep us informed about her status there, but they seem to cross over well for PANDAS. All the tests were beneficial to me anyway. If I am reading her results right, I learned her immune system was fine up until 18 mo but it tanked before 6 years old.

 

 

Blood tests

 

TSH + Free T4

CBC with differential/platelet

Complete Metabolic Panel

Iron and TIBC

Immunoglobulins A/E/G/M

Chlamydia pneumonia IgG/M (not the STD chlamydia)

MTHFR mutation

Mycoplasma Pneu IgG/IgM

Rubella Antibodies

Cytomegalovirus

Calcitriol

Vitamin D level

Varicella-zoster IgG

EBV Ab VCA

Anti-Dnase

Mumps antibodies

Rubeola antibodies

Poliovirus antibodies

HHV 6

Herpes Simplesx Virus

Tetanus Antitoxoid

Diptheria Antitoxoid

Celiac Ped screen

Homocysteine

Magnesium

Ceruplasmin

Copper

Zinc

Ferritin

Lactic Acid, Plasma

Streptozyme

Antistreptolysin

Ammonia

Triiodothyronine

Selenium

Coxsackie virus A/B (he forgot this one, but he meant to test for it)

 

Urine tests

 

OATS test (an accurate evaluation of intestinal yeast and bacteria)

Casien/Gluten tolerance test

Neurotransmitter test

Porphyrins tests (help identify the severity of heavy metal toxicity or organic chemical exposure in patients)

 

And we decided to perform the 23andme test for our kiddo since I feel like I am being blind sided by diagnosis that are critical to her health and life; for example, we learned she has kidney disease with this battery of tests, and I was completely unaware up until now. I am hoping this test will help us if we need watch for possible other diagnosis', to be alert for symptoms I may have otherwise missed (IE she has been pale for a year and I was not sure why), and it will help to get a handle on her supplements (I hope).

 

Good luck and keep researching and pushing until your gut tells you that you have a handle on the situation. My gut told me something else was still going on, and I am very glad I listened to it.

Edited May 6, 2013 by Mayzoo

[rowingmom]

Your mention of low iron levels twigged something for me - it can be associated with babesia infection. I also found this:

 

Symptoms Onset: Starts one to 3 months following the tick bite and are gradual and nonspecific. Malaria-like.

• Shaking chills, Fever – This may be sustained or intermittent, and temperatures may be as high as 40°C
• Loss of appetite Nausea,vomiting Abdominal pain, weight loss, diarrhea
• Reddish or bloodshot eyes, sore eyes, sensitivity to light
• Headache, Neck stiffness, (Sore throat or cough sometimes)pallor
• enlarged spleen, enlarged liver
• Malaise,Sweating, Fever and chills
• Pain in muscles and joints, weakness
• Depression, excessive emotional reactions, frequent mood changes.
• Hallucinatory and confusional states, delirium, coma and sleep.
• Shortness of breath
• Fatigue
• Dark urine

Complications from the excessive breakdown of red blood cells may include:

• Retinal problems
• Rupture of spleen,Risk of kidney,liver or heart failure
• Relapse, Shock, Coma and even death
• Acute respiratory failure,
• Jaundice,petechiae
• Presence of hemoglobin in urine

From this site:

http://www.lyme-symptoms.com/CoInfections.html

 

Have you also tested for the lyme co-infections?

[momma2sethandjiji]

Thanks for all responses.

 

No we have not tested for anything other than the usual things Dr. K orders in the beginning. Don't quote me, but I believe a anti-strep titer, streptozyme, Anti DNAse. Then, the regular pedi did a CMP with a c-reactive protein that he said would identify inflammation.

 

We also have never been tested or treated for parasites.

Edited May 6, 2013 by momma2sethandjiji

[norcalmom]

 

I have posted twice before. My son was clinically dx'ed with PANDAS by Dr. K. following his steroid burst/antibiotic trial even though his symptoms worsened with each of the meds. His primary symptoms following mystery illness were hoarding trash, muscle pains, headaches, palilia (repeat whispering tic) and lethargy. All disappeared completely eventually but the repeat whispering tic which continues frequently to this day. Now, with a slightly runny nose and improvements in diet (for entire family, nothing to do with any symptoms), he has started in with a grunting tic. It has, of course, got me concerned yet again. We have opted for no further treatments in the past, as he is not severe. However, we don't want to be overlooking something else considering he has other odd symptoms:

 

1. During this period of PANDAS symptoms following an extended undiagnosed sickness, he developed brown melanin spots in the white of his eyes. Dr K recommended local copper checks. Did that, and both his serum and urine copper were low. Ceruloplasmin was normal. Saw a neuro at Dr. K's recommendation who ruled out Wilson's disease and told us to see our pedi over copper concerns. Pedi is not concerned even though I read several articles on mineral deficiencies causing neuro issues. Eye doctor said half the population has these brown spots from sun exposure. My child is 7 and don't get in the sun that often. Pedi did run a battery of liver/kidney, CBC, c-reactive protein and allergy tests. All were normal, so he told me to just accept he has tics and quit worrying. No explanation as to why my child was normal before this sickness that made him start hoarding and hiding things in his underwear out of parking lots, having leg aches so bad in the days following he has to be packed, etc. Neuro says he has always had tics/OCD but I never noticed until the sickness and shouldn't worry. Grrrrr

2. Iron has been low on several occasions. Once very low. He is a green eater, beef eater AND takes a multivitamin with iron nightly since he was 2 years old. On recheck, upon my concern of some mineral issue, iron was way over normal with absolutely no changes in diet or vitamins only a few weeks following initial very low iron??? He refused to check copper saying he had never checked a child's copper in his years as a pedi (the previous coppers came from a walk in clinic and my begging since Dr. K recommened - seems they all have trouble doing what he asks of me)

 

 

So my questions:

Is the Cunningham Panel definitive? I don't want to be sitting back and ignoring something else that could possibly be going wrong causing issues with his minerals or the issues he is having a result of the mineral issues if that makes sense. If it could for certain rule it out or diagnose, I think I could sleep better.

 

If I paid a visit to Dr. K (whom I love and trust completely), is there any autoimmune testing etc outside of Cunningham he could order to ensure nothing else is plaguing my child. I do feel it is autoimmune in nature but don't want to ignore the minerals. Will he investigate triggers, etc? I would be willing to spend the week or whatever it took.

 

Also are there any lab type places where I do not have to have any sort of orders from a physician. If so, are there any tests anyone could recommend me doing to get some clarity or rule anything else out? I have thrown so much money away locally and feel defeated and made to feel like I am being a hyperchondriac. Thanks in advance for reading.

 

Here is what the site says about the test results:

 

The values from these five assays performed in duplicate and triplicate, are reported in the Patient Profile Report compared with a normal control range. Assay test values above the normal range are reported. An integrated summary of the results is reported as a relative “risk” of PANDAS/PANS scale based on the group of test values compared to normal ranges and means. The relative risk scale includes the designation of:

1. PANDAS/PANS NOT LIKELY
2. PANDAS/PANS LIKELY
3. PANDAS/PANS HIGHLY LIKELY

PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment.

 

http://www.moleculera.com/testing/

Does anyone know what the break points are for the 3 categories?

 

Also - with the result, what else do they say - like does it say that there may be other conditions that are know to raise the numbers? (Lyme)? Active Strep infection ?

[Mayzoo]

Norcalmom

 

"Does anyone know what the break points are for the 3 categories?

 

Also - with the result, what else do they say - like does it say that there may be other conditions that are know to raise the numbers? (Lyme)? Active Strep infection ?"

 

 

 

 

Results example with ranges (http://www.moleculera.com/testing/):

 

 

Dopamine D1 Dopamine D2 Lysoganglioside Tubulin CaM KinaseII

Patient Result 1:4,000 1:20,000 1:1,000 1:10,000 65

Controls 0 to 1:2,000 0 to 1:8,000 0 to 1:200 0 to 1:1,000 1-35

Here is a sample report, and there is no mention of other conditions that I saw:

http://www.moleculera.com/wp-content/uploads/2013/03/Moleculera-Report_Version-04.11.131.pdf

Edited May 6, 2013 by Mayzoo

[momma2sethandjiji]

Do they have to be actively having symptoms for anything to be abnormal?

[nicklemama]

I would recommend finding someone who will test for Lyme and coinfections. After 2.5 yrs of treating PANDAS, including IVIG twice with Dr K, we found our son has ehrlichia, anaplasma, and babesia. He has very low ferritin levels. No one ever felt this was problematic. New doctor we are seeing told me babesia uses iron and we are treating for low iron and will commence with babesia treatment after treating ehrlichia and anaplasma, which we are currently doing.

 

My son had terrible pains in his feet, was easily fatigued, could no longer go hiking. We would end up having to carry him. His head would sweat terribly during the night. I mean his hair was soaked.

 

Most of these symptoms went away after abx and IVIG but the low ferritin and sometimes fatigue has always been there since he got sick with PANDAS.

 

He is now 9. This all started when he was 5 and he was diagnosed at 6.

 

He had the Cunningham test about 6 weeks after diagnosis, when he was being treated and doing much better. He was within the PANDAS range. This was in 2010, when it was still an investigative study.

 

Some of the values of normal vs PANDAS seem to have changed but the CaM values appear to be the same, if you drop 100 from your score.

Edited May 6, 2013 by nicklemama

[Mayzoo]

I did find this blurb on another web site, so maybe the results can be extrapolated into other diagnosis. It is late and I am tired, sorry. I will have to do more research later when the fog of this day clears:

 

"“The collective results of the panel of 5 tests will provide an assessment as to the anti-neuronal and autoimmune state of the patient at the time of testing. The physician is provided a composite report containing the 5 assay results, each compared to normal controls. The collective results can aid the physician in determining a proper diagnosis and support the appropriate treatment decision.”

 

http://pandasnetwork.org/2013/04/moleculera-labs-opens/

[norcalmom]

Saw the sample page - thanks!