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High glutamine/very high lactic acid (alert), high pyruvic acid


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Anyone have experice with these kinds of results?

 

Dd12 had a high opening pressure on lumbar puncture. Pretty normal results except for that and very high glutamine, low aspartate.

 

More bloodwork showed high bun and high bun/creatinine level. Then ALERT level lactic acid and high pyruvic acid. Tested tpo in October. It was high, but all other thyroid levels are well within normal range.

 

Test rests back today on dd4 show high tpo/ low cd4/lymph.

 

We are doing an EEG today on dd12. Although our neuro is "convincable" of PANDAS in our case, he has mentioned mitochondrial disease more than once. I have read about that, see why he considers is a possibility, but I do not think it fits as well. OCD-induced by strep is how we started. She has almost every symptom on that list except tics.

 

I tend to think that she has had PANDAS/PANS so long that her brain is inflamed in more than just the basal ganglia, hence the increased opening pressure on lumbar puncture. Where tpo comes into that....

 

Any ideas here? I have an appt with the neuro in 2 weeks, and my plan was to ask him for a steroid burst because I believe she has some type of autoimmune encephalitis, but i don't know since seeing these new results.

 

Thanks.

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aealliance.org has just placed a slew of videos from the AE conference held at Duke this spring- on their blog. If you have time to watch them, or even skim, you may find some information that may be helpful.

 

I have not watched them all, but the information contained could be very helpful for so many of our kids.

just an idea....

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