TinyTreasures Posted July 1, 2013 Report Share Posted July 1, 2013 My son was diagnosed with PANS over 3 months ago and we are 90+ days on antibiotics. Only the last 30+ have been working (Augmentin) - before that Zithromax & Keflex didn't work at all. He is only 3.5 years old but PANS has affected him badly. Thank God this past month he has had so many 95% back to normal days. He got his first cold since starting antibiotics about a week ago and things started resurfacing a bit, but for the most part he got through it great...his first illness without things becoming horrible again. Right now he is about 85% himself but I think his body is still fighting off the cold. That is our VERY brief history, now my question.... Back 7 MONTHS ago when I first thought this was PANDAS/PANS and his pediatrician sent him for bloodwork, it came back negative for strep and she said everything else looked normal. Just elevated Segmented Neutrophils (52 when the range is 25-50). I just tonight found his paperwork while going through my office though and decided to look at it again, and I saw that he also had elevated AST - 59!!! The normal says 10-50. Nearly all the rest of his bloodwork is on the low end. His ALT is 19 (range 2-41). Am I wrong for thinking she should have been concerned about a AST blood level of 59? From what I just read: AST Levels: normally found in a diversity of tissues including liver, heart, muscle, kidney, and brain. It is released into serum when any one of these tissues is damaged. Makes a lot of sense to me that it was showing inflammation in his brain from PANS, but she said his levels were normal and refused to put him on antibiotics. It took another month and 2 more illnesses before she would prescribe an antibiotic, and he was back to himself in 5 days. Now we are under the care of a PANDAS Neurologist, but still waiting to receive our bloodwork results in person (although the nurse said they looked normal). Link to comment Share on other sites More sharing options...
T_Anna Posted July 1, 2013 Report Share Posted July 1, 2013 Just keep in mind that PANDAS is a clinical diagnoses. Did they test for multiple infections? T.Anna DS15 Link to comment Share on other sites More sharing options...
Hopeny Posted July 1, 2013 Report Share Posted July 1, 2013 As far as I know ast is typically used to assess liver. 59 on a top range of 50 is not considered very elevated. Best to retest, my experience has been that test fluctuates. Also recheck neutrophils. Numbers close to the range can be rechecked Link to comment Share on other sites More sharing options...
JAG10 Posted July 1, 2013 Report Share Posted July 1, 2013 I'll briefly share my dd13 always had normal AST/ALT. Her abx was changed to Bactrim and within 3 weeks both levels shot up to hepatitis range, like 700 and 350 range. She has a sulfa intolerance which is what caused the liver enzymes to spike. She was taken off Bactrim immediately, and her AST/ALT levels returned to normal where they have stayed despite years of Zithromax and many supplements. Her symptoms during those 3 weeks were purely physical, nothing behavioral. She had headaches and nausea. It doesn't hurt to have them checked periodically. Link to comment Share on other sites More sharing options...
TinyTreasures Posted July 2, 2013 Author Report Share Posted July 2, 2013 Thx everyone! From what I was reading on the Internet 59 sounded very high...maybe not? I will call the Neurologist & see if the number was lower on his last test. He was tested for Mycoplasma & MTHFR but the lab messed those up & we are going to redo Mycolasma & rely on the 23andme I just ordered for the MTHFR result. I don't think she tested for any other infections but I'm going to request Lyme...anything else to look for? Link to comment Share on other sites More sharing options...
rowingmom Posted July 2, 2013 Report Share Posted July 2, 2013 DD11 also had increased alt/ast upon starting bactrim, although significantly higher than you are reporting. She had an allergic reaction to it and we ended up switching to biaxin. With the addition on milk thistle her alt/ast numbers decreased to normal within a month. Your ast number is a little out of range, but not significantly. I wouldn't panic, but keep an eye. We tested liver enzymes every month while on abx. Now every 2-3 months on her new herbal protocol. If I am not mistaken, a babesia infection can be responsible for increased liver enzymes. Link to comment Share on other sites More sharing options...
cobygurl Posted July 3, 2013 Report Share Posted July 3, 2013 Hi, My 4 year old son had the same levels. Nobody made a big deal out of it but his accompanied by elevated alk phosphatase of 2029, normal is under 380. Interesting that it can be inflammation associated with brain. It took 6 months for us to get medication for PANS after the first bloodraw that indicated abnormal readings for his liver. It has dropped back to normal, both his alk phosphatase and ast and on the Acyclovir we are about 65% back to normal although we are in a flare up right now Link to comment Share on other sites More sharing options...
Kathy4Him Posted July 3, 2013 Report Share Posted July 3, 2013 Our son who is now 24 had high AST and ALT triple what they should be for over 2 years. He had two liver biopsies done during this time. Dr. put him on 60 mg steroids for 1 week 40mg for 2nd week and enzymes had cut in half. After 4 weeks they were normal. Dr felt there was inflammation in liver. Both biopsies did show dialated sinusoids. (cause unknown) We saw the chief of hepatology at Tulane Medical Center who told me liver enzymes can go up in the thousands and liver is still ok. He said sometimes meds can cause the increase. He was really not overly concerned. Link to comment Share on other sites More sharing options...
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