Brain inflammation

[fuelforall]

Silly, goofy, pleasure-driven, sloppy, difficulty learning, paying attention, focusing, controlling bodily functions, cognitive fog/unawareness. It's a diffuse, overall impairment.

 

 

 

Oh, quit talking about my ds10 already! Did we include regulatory issues? Tics? Throw THAT into the mix.

Oh, yeah, we get some couch potato thrown in too.

[justinekno]

I have been trying to link the febrile seizure my son had at 15 months (virus, high fever) to the simple partial seizures starting at 18 months (resembled a rapid eye blink although sometimes it was a tic and sometimes it was a seizure - you could only know the difference if he was on an EEG machine) to the now eye tic that our neurologist said is a common occurence after the seizures are no longer happening (he has had two overnight and 2 short EEGs showing no abnormal activity and has not been on medication for three years). The first high fever at 15 months set off a chain of high fevers from 15 months - 5 years old. Most times we were told it was just a virus (sometimes ear infections were diagnosed) but strep tests were never done until age 7 when one test was positive.

 

Two PANDAS drs think he has classic PANDAS symptoms (eye tic, increasing DNase B titer, short term memory problems, handwriting issues, some ocd, urinary accidents, camk 170) but what I struggle with is if all of this can be tied together or if it's separately occuring events. My gut says it's connected but this science is way over my head so it's hard to figure out how. Anyone have any thoughts or similiar experiences?

 

I wonder if there is ever involvement in other areas (such as abnormal synapse firing) without obvious inflammation.

[JAG10]

That's an interesting line of thought. My dd had one short febrile seizure at 16mos and that was it. But when she was 5 she started with these intense staring spells that two pandas docs have told me are a related symptom. She's had 3 normal EEGs at 5, 7, 10 to r/o seizures since then.

[justinekno]

It would be interesting to see if any other PANDAS kids have any similiar experiences.

 

That's an interesting line of thought. My dd had one short febrile seizure at 16mos and that was it. But when she was 5 she started with these intense staring spells that two pandas docs have told me are a related symptom. She's had 3 normal EEGs at 5, 7, 10 to r/o seizures since then.

[JAG10]

You know, Justine... if we don't ask, we'll never know. For example, my dd10 had/has livedo reticulitis which is a skin pattern on legs and arms that can mean nothing or can be related to autoimmune disorders. Dr. T identified it, but didn't think it was related; hadn't seen it (but may not if not looking for it) in other patients. I brought it to his attention and he identified what it was. There is another parent, with twins I think, whose children also have it. It "went away" with steroids and returned. It has been completely gone since ivig. How many minor symptoms/conditions are there out there like that? We may have a better chance of raising those possibilities than the overworked, undermanned physicians.

[justinekno]

Yes, it's like the positive p41 band on the Lyme test. Lots of PANDAS kids seem to have it but we don't really know what it means. What does the skin pattern look like?

 

You know, Justine... if we don't ask, we'll never know. For example, my dd10 had/has livedo reticulitis which is a skin pattern on legs and arms that can mean nothing or can be related to autoimmune disorders. Dr. T identified it, but didn't think it was related; hadn't seen it (but may not if not looking for it) in other patients. I brought it to his attention and he identified what it was. There is another parent, with twins I think, whose children also have it. It "went away" with steroids and returned. It has been completely gone since ivig. How many minor symptoms/conditions are there out there like that? We may have a better chance of raising those possibilities than the overworked, undermanned physicians.

[JAG10]

Yes, it's like the positive p41 band on the Lyme test. Lots of PANDAS kids seem to have it but we don't really know what it means. What does the skin pattern look like?

 

You know, Justine... if we don't ask, we'll never know. For example, my dd10 had/has livedo reticulitis which is a skin pattern on legs and arms that can mean nothing or can be related to autoimmune disorders. Dr. T identified it, but didn't think it was related; hadn't seen it (but may not if not looking for it) in other patients. I brought it to his attention and he identified what it was. There is another parent, with twins I think, whose children also have it. It "went away" with steroids and returned. It has been completely gone since ivig. How many minor symptoms/conditions are there out there like that? We may have a better chance of raising those possibilities than the overworked, undermanned physicians.

 

 

It's described as a "lace-like" pattern, but I think it kinda looks like large honeycomb veins beneath the skin. It's most pronounced when chilled, like when getting undressed when it's cold and more common in younger females (the benign version.) DD10 has many scars from picking at mosquito bites on her skin (ocd) and I'm amazed at how much healthier her skin appears post ivig; even her scars look such much better! The livido reticulitis was just one more little thing that added up to that something just isn't right here beyond mental health pre diagnosis.

 

Yes, that band 41 is a mystery. Must be some cross-activation that has not been determined yet.