Cunningham test results

[AmberM]

I just received Cunningham results for my 3yr old dd and was hoping to get some advice. We have an appt with Dr Lin on friday morning and I don't want to waste too much time asking questions that I can figure out beforehand. My dd has never been tested for strep and has never shown any outward signs of strep. She has been in treatment for autism since 14mos of age but looking back, PANDAS symptoms came on really strong around 20mos of age. She did test positive for EBV virus so she may be more of a PITANDS gal. We did 4mos of zithro with little progress but every time we went off of it, we saw regression. Anyway, any help would be greatly appreciated. We're hoping to leave Dr. Lin's office on friday with a script for steroids. My dd has horrible gut inflammation so I'm hoping it will help with that as well. I wanted to see if a burst or taper tends to work better. The blood was drawn during a good period..... her symptoms were about a 2 out of 10. She's now closer to a 5 out of 10. Her main issues are anxiety, rigidity, rages, night terrors, and limited eating. It's heartbreaking to see her like this but I'm feeling so hopeful to find some answers finally. It never felt right when other dr's would blow the symptoms off as just "part of the autism". That's just an excuse to not help us.

 

Cam Kinase II 159

 

Anti-Lysoganglioside 160 (norm range.... 80-320)

 

Anti-Tubulin 250 (norm... 250- 1000)

 

Anti-Dopamine I 2000 (norm..... 500-2000)

 

Anti-Dopamine 2 2000 (norm...2000- 16000)

 

 

The lab was able to run the test off of just 2 mls of serum even though they asked for 10-20. My dd has horrible veins and we were lucky to get that much. I just thought I should let everyone know in case you are ever in that situation. Kathy and Dr. Cunningham were awesome to work with.

 

-Amber

[sf_mom]

Amber: My DD has identical results (CAM 159) and we have also identical symptom list. Last January she had one main word 'up' with a lot of pointing, grunting, crying and wiggling to communicate and was not linking words. She was consistently getting sick every 3 weeks prior to antibiotic treatment. Her other test results that were consistently abnormal are listed:

 

• Low RBC
  
• High Lymphocytes
  
• Low IgG 1: 200's
  
• Low IgG 3: 400's
  
• Deficient in 13 of 14 strep pneuo titers (we were tracking these numbers over time and they were dropping to <.03 on all serotypes)
  

We had her on Azithromycin 200 per day since last Jan. We did see improvement with antibiotic treatment from Jan to August and immediate regression when temporarily taken off antibiotics. In August we discovered her issues are related to having congenital Lyme Disease. Since being treatment for LD she is now talking in full sentences (little lisp still), anxiety is gone, night waking gone, reassurance hugging gone, weight has gone from the 7% to 20% (might be higher but haven't check recently), dark circles under eyes are resolving and remaining full body rashes are resolving. She is on IgG powder/hd probiotics to help with gut issues and absorb enzymes. Treatment for our daughter has been nothing short of a miracle and we hope to start her in pre-school next fall.

 

She also has a twin brother with identical set of symptoms and test results (CAM 148) with the exception of him having more OCD tendencies (hard to tell at 2 1/2). He too is seeing resolution to symptoms and has the same lingering issues of dark circles under eyes and full body rashes that are beginning to resolve. He is positive for Babesia/Bartonella and our Dr. attributes the rashes in both to Bartonella.

 

We have not used steroids due to diagnoses of LD and we hope not to treat with hdIVIG. Anyway, I wanted to share our story again with you because they seem so similar in symptoms, CAM results and age (twins are 3 1/2 years of age).

 

-Wendy

Edited January 5, 2011 by SF Mom