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Does initial PANDAS episode gradually go away?


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All his tests have come back fine (except Cunningham). Now a rash on hands, knees, feet, elbows is sending us in the direction of a rheumatologist. It seems we are looking for something else besides PANDAS to justify IVIG.

 

His symptoms are headache, stomach ache (extra painful after eating), muscle aches, and some fatigue. He thinks that he will never get better. One test did show that his small intestine is inflamed which confirms the stomach ache. He is already on a gluten-free diet for stomache aches that appeared before this all started.

 

I'm just looking at these symptoms and they are not yelling "classic PANDAS" to me. Has he been checked for Lyme (Igenexx?) So, he had tics, but they went away with the antibiotics? How about OCD, urinary issues, handwriting, learning issues (math spelling), ADHD, rages, tantrums, anxiety....those are typical PANDAS symptoms to me. I know some PANDAS kids get migraines (mine did), but the rest (stomach aches, muscles aches, fatigue) just aren't the typical PANDAS symptoms (esp. without the other common PANDAS symptoms)...so I wonder if there is something else (or in addition to) the PANDAS. Maybe a rheumatologist, or immunologist, (or even a LLD???)...

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I'm just looking at these symptoms and they are not yelling "classic PANDAS" to me. Has he been checked for Lyme (Igenexx?) So, he had tics, but they went away with the antibiotics? How about OCD, urinary issues, handwriting, learning issues (math spelling), ADHD, rages, tantrums, anxiety....those are typical PANDAS symptoms to me. I know some PANDAS kids get migraines (mine did), but the rest (stomach aches, muscles aches, fatigue) just aren't the typical PANDAS symptoms (esp. without the other common PANDAS symptoms)...so I wonder if there is something else (or in addition to) the PANDAS. Maybe a rheumatologist, or immunologist, (or even a LLD???)...

This is probably what his dr. is thinking at this point. His handwriting/spelling is not so good and OCD may be there a bit and he does still have a slight tic with his throat. So these sound like PANDAS.

 

Have just ordered the Igenx kit and we have rheumatologist appt. in about 3 weeks. So it looks like we have to just keep testing and hope to find something that tells us what is going on, in addition to PANDAS.

 

All this waiting makes me want to do something. Thank you for your input EAMom and best wishes for you and your family.

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You might post on the Lyme forum...I don't know if there are certain rules about being off antibiotics for a period of time b-4 the Igenex test. There are also other tic born Lyme co-infections...I don't know if the Igenexx test automatically includes those (like bartonella, babesia) or if they need to be ordered separately. I think the Lyme forum folks would know more (than I certainly).

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Just want to chime in, stomach aches are DEFINATELY a pandas symptom. Read Dr K's adolescent onset. My dd has stomach aches as her first and one her her major pandas symptoms. This I think was caused by heightened sensory, and resolved with antibiotics and steroids. I am not saying that it is or isn't pandas- just want the fact that stomachaches are a symptom of pandas out there...

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Just want to chime in, stomach aches are DEFINATELY a pandas symptom. Read Dr K's adolescent onset. My dd has stomach aches as her first and one her her major pandas symptoms. This I think was caused by heightened sensory, and resolved with antibiotics and steroids. I am not saying that it is or isn't pandas- just want the fact that stomachaches are a symptom of pandas out there...

 

Yes..that's true. I never knew if the PANDAS stomach aches more "real" or related to anxiety or something else. Sometimes when my PANDAS dd was not wanting to eat, she would say "my stomach hurts", but I always thought of it as a secondary to the anorexia/anxiety/looking for a way to get our of eating something, as opposed to a real GI pain.

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Just want to chime in, stomach aches are DEFINATELY a pandas symptom. Read Dr K's adolescent onset. My dd has stomach aches as her first and one her her major pandas symptoms. This I think was caused by heightened sensory, and resolved with antibiotics and steroids. I am not saying that it is or isn't pandas- just want the fact that stomachaches are a symptom of pandas out there...

 

We have ulcers. Had to do an endoscope to find. Was looking for Celiac at the time - to find an autoimmune disease. All docs think related.

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