Although you may have completely forgotten by now, I left you hanging on the results of Braden's MRI. Turns out that his brain overfloweth and is herniating into his spinal area- Chiari 1 Malformation. I know, that sounds awful and it can be... but not in Braden's case. As long as it doesn't progress, he'll be fine.
Ask me why I'm not more worried. Is it because my neurologist said so? Well, he did... but that's not why I'm confident that it's nothing to worry about. Somebody else told me that it wasn't anything to worry about "as is". A new doctor did. This makes doctor #6 in 6 months.
Although I'd been happier with our last neurologist, he still had the same faults as most doctors. He had a lot better bedside manner and much more open to looking at other causes... but I think it ended there. I think he is a great guy that talks a good game but in the end, he's just another doctor with hundreds of patients that grossly generalizes diagnosis without looking at the individual. I've learned that if a doctor says "I saw 10 more just like him yesterday", that may not be a good sign. At that point you really need to question their diagnostic abilities.
We've been to 2 pedi's, 2 neurologists, 1 immunologist. I would have loved to have complete trust and confidence with one of them- but alas, I did not. I never witnessed any of them use any critical thinking in association to Braden. They didn't look at the pages of notes I provided or do any real tests- everything was clinical. Looking back, I think it may have been that, for them, less information to analyze made their jobs easier. When I volunteered suggestions on things I'd like to rule out I'd get "the look". The look they give that says "I know what I'm doing, you don't". I even got into very heated arguments with doctors only to hit a wall. But I knew that there was something else going on- I wanted root cause! Within my pages of notes (or this blog for that matter) there were red flags that didn't make sense- and I always thought back to the book that motivated me in the first place which continually reassured you that "mom's know". The book that was suggested by another food allergy mom... where I found a lot more than food allergies- I found Braden. It was a divine twist of fate.
Another twist of fate came after being compelled to invite an old co-worker friend to lunch. I hadn't talked to her in years. I never make lunch dates. I did. It changed everything. We talked about Braden and my frustration with doctors. She mentioned her doctor and told me stories of the amazing work he'd done with her, her family & friends. He was an alternative doctor. I was open to it. I scheduled an appointment immediately- one that week for Trace (who had been in a lot of pain recently) in the morning and for Braden in the afternoon.
I'll have to write about the experience for both Trace & Braden. It was unreal. I'd never experienced a doctor that was so prepared. So engaged and just so plain smart. He showed me things about Braden that I had never realized. He helped me understand so much about him and who he is with medical evidence as to why. He also had suspicions of the very illness I had tried to shove down other doctors throats. He was the one doctor I had never mentioned it to. He suspected PANDAS- Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep.
The test, along with his previous diagnoses, was easy. The results were clear.
Braden has a huge festering strep infection (4.5 x's the normal high- not simply "elevated") that is very likely causing all kinds of neurological issues- in his case Tourettes. Keep in mind that this is not strep throat which is typically an illness of milk drinkers- and we are not (although he has had it before as a baby). He is not "sick" (like you or I think of being sick) at this time nor was he when the blood was taken. This is an infection that is deep in his body somewhere- and it is a bad one. He has probably had it for years. Maybe his leg infection was a big clue.
You'll also see that his Serum Ferritin is low. It is an indicator for "hemolytic anemia" and a bio marker for iron storage in his body. The bacteria in his body are using all of his iron and tie up its availability.
There was smoke and we found a big huge fire. Now we can focus on putting out the fire. I pray that his neurological issues will go away with it... and the meds shortly after. Strangely enough there does seem to be some evidence of genetic predisposition- wouldn't surprise me since I had to quit dance team as a high school senior due to a strep infection that had moved to my joints.
We are elated, amazed and fascinated. There's a direct tie between Tourettes and PANDAS. I can't wait to cut it!
Posted at Tuesday, March 11, 2008 by sjd
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