Bertrand is crying real tears. The only change in his daily regimen has been the addition of a B-12 supplement.
We are using a transdermal B12 patch and oral B12 supplement.
Of course, I've been on a research binge for the past few days. Here are some bits and pieces floating through my head...
- B12 is stored in the liver. (Bertrand has liver damage.)
- B12 is water soluble. (An overdose on B12 is near impossible.)
- B12 is expressed in bile.
- Actigall (ursodiol) is a bile acid. (Bertrand's liver has improved on actigall.)
- B12 deficiency in infants causes movement disorder & developmental delay...
When Bertrand was a baby, we'd thought for certain that he was a case of B12 deficiency. His neurologists shot this theory down because of the important fact that Bertrand was/is not anemic. Folate can mask B12 deficiency, but he should still show some signs of anemia.
But this image is haunting me:
The MRI above is from THIS article, entitled "Involuntary Movements and Magnetic Resonance Imaging Findings in Infantile Cobalamine (Vitamine B12) Deficiency", published in PEDIATRICS: Official Journal of the American Academy of Pediatrics back in 2003.
The MRI above is from THIS article, entitled "Involuntary Movements and Magnetic Resonance Imaging Findings in Infantile Cobalamine (Vitamine B12) Deficiency", published in PEDIATRICS: Official Journal of the American Academy of Pediatrics back in 2003.Does "bilateral periventricular symmetric high-signal lesions in the white matter on T2-weighted images" sound familiar?
You can bet this will be discussed with Bertrand's pediatrician on Tuesday!
So...is this what caused his movement disorder? Is this a good thing to find out? (Totally not trying to be rude, just wondering - it sounds like this is a HUGE discovery.)
ReplyDeleteI hope you learn more at the ped on Tuesday!
If this were the case, it would be great news. But, I spoke with my dad (who is a neurologist) & he sticks with what the other neuros have told us about Bertrand not having anemia. Bertrand will probably just get another blood draw on Tuesday & I'll get a pat on the back. I'll lobby for a B12 shot, but all I expect in return is sad condescension. Eh. I have to try. It's my job. ;)
ReplyDeleteDon't give up! Fight for this! My neurologist gave me a peculiar look and said, "I didn't think b12 had anything to do with tear production." (by the way I have a few amazing articles I should email you) This is a clue! It may or may not be a reason but it is definitely a clue! I am so happy this is working for B. I think I might just cry myself!
ReplyDeleteoh yeah, and they said if she has a vitamin b disorder then blah blah blah, would be elevated. Do you know, being scientists. They are very sure of their theories until it is proven different. I even asked Ava's first neuro when she admitted not believing in something, I asked her if I had wanted to know about the keto diet 10 years earlier would she have believed in it. She admitted probably not. Doesn't give much confidence but it is too important to give up. :)
ReplyDeleteConditions like Bertrand's are seldom simple cause-effect. Even if you'd started B-12 way-back-when, the problem in his intestines that prevented absorption of B-12 would have manifested with different symptoms.
ReplyDeleteB's avalanche started with his strep infection in Florida, at six months of age. How high was his fever then?
There's nothing quite so powerful as a parent's intuition. We had to fight with Jade's doctors a couple of times. Eventually, they always acquiesced and we were always proven right. It's hard for many doctors, I think, to admit that their diagnosis and prescribed course of treatment might have missed the mark. Keep on fighting!
ReplyDeleteTo follow up on my last comment, here's a passage from The Web That Has No Weaver (pg 4):
ReplyDelete"The Chinese physician, in contrast, directs his or her attention to the complete physiological and psychological individual. All relevant information, including the symptom as well as the patient's other general characteristics, is gathered and woven together until it forms what Chinese medicine calls a “pattern of disharmony.”This pattern of disharmony describes a situation of “imbalance” in a patient's body. Oriental diagnostic technique does not turn up a specific disease entity or a precise cause, but renders an almost poetic, yet workable, description of a whole person. The question of cause and effect is always secondary to the overall pattern. One does not ask, “What X is causing Y?” bu rather, “What is the relationship between X and Y?” The Chinese are interested in discerning the relationships in human activities occurring at the same time. The logic of Chinese medicine is organismic or synthetic, attempting to organize symptoms and signs into understandable configurations. The total configurations, the patterns of disharmony, provide the framework for treatment. The therapy then attempts to bring the configuration into balance, to restore harmony to the individual."
The selection continues on to discuss how 6 patients diagnosed with the same condition by a Western doctor are found to have six different "patterns of disharmony" by an Eastern doctor.
The best results for people's conditions is frequently obtained by combining approaches.
HTH.
I'm completely out of my depth here but just wanted to say that I'm very glad to hear about the tears; if it doesn't mean everything it still means a lot and I'm really glad that you've had the chance to see this happen. Love to all of you from the PNW!
ReplyDelete