Greetings, I am new to the group. I have just been diagnosed with B12 and D3 deficiencies. My 21yo daughter also has low D3, protein, iron and probably B12, results are not in yet.
We are both vegetarian and gluten free and she was vegan the past two years with no refined sugar and limited fruit to only berries and granny smith apples. She has had a pale face for months but I just passed it off to being tired.
About a month and a half ago something happened. Her personality changed, no emotion, flat look to her face, voice is monotone, she started to stare into space, stutter her words. She could not concentrate and dropped both of her college classes. About a week ago she had what we thought was a seizure. We did video the episode and showed it to our naturopathic doctor. She said this did not look like an epileptic seizure and more stress seizure. We did the wait and see and last Thursday while we were at a theater, she fell over the seats in front of us, landed on the floor and started with seizure like activity. We waited 20 minutes for this to pass but it continued and an ambulance was called. They injected with meds but they didn't work which confirmed a non-epileptic event.
In the ER they gave her an anti-seizure med via IV. Nothing stopped the episodes from happening. After 2 nights and 3 days in the hospital all tests CT Scan, MRI and EEG all came back negative. Her magnesium was very low so they did give her an IV of magnesium and fluids.
She would answer questions given by the doctors or nurses. She now tells us all and the staff that she is Peter Pan, her friends are the lost boys.
She has a very vivid imagination and has always read the classics and loves mythology. She told us her parents are Athena and Poseidon.
My husband took her for a psych intake yesterday and she filled out the forms as Peter Pan.
We have her on a B-Complex, 10,000IU of D3 2x a day for 2 weeks and then we will decrease to 1x per day. SAMe to help with any associated depression and OMEGA's from fish and hemp.
We started methylcobalamin sublingual, 10,000 2 times a day. First dose this afternoon.
She has been on the floor for over 3 hours and will not move or communicate. She got angry when asked to eat and started to cry and then fell to the floor.
Help! Resources! Support! Ready to lose my mind.
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I am no help but know it was difficult not to cry reading your post.
I can't imagine what all of you are going through and I am so very sorry. And as parents how helpless you must feel. Love sent from a stranger, to you all.
Haven't read this one completely. But linking because there are a few medical articles that discuss non-epileptic seizures and b12 deficiency online.
It is horrifying to think what she is going through, what you all are going through.
One thing I want to add is I personally would be very careful with all the supplementing, because of masking results. Or two things interacting poorly.
I am reading correctly that you are waiting on the results of a b12 test that was taken before the b12 supplements , yes? Hoping I have that right.
there are a number of things other than B12 that could becausing the problems you mention and it can be quite difficult waiting whilst things are narrowed down and it is absolutely horrendous to see something like this happening to someone you love.
I don’t know whether or not this would be appropriate and you would know best but I wonder if help from someone specialising in eating disorders could help? That’s a very restricted and controlled diet that your daughters been eating and also, you mention her reaction when being asked to eat.
It certainly sounds as though her issues might be linked to deficiencies in her diet. If she presented with low magnesium, there is every chance her B12 will be low too. Does she have weakness in her muscles, poor balance, any numbness or pins and needles?
I really feel for you in this situation, and hope and pray that the medical experts will find out what is going on.
Yes, she has muscle cramps everyday for years even as a child. She now does a thing with her fingers and the only way I can explain it is it is some sort of code or she is communicating with herself or something else. Her eyesight has gotten worse over the last year. She has an unexplained dry cough. Her ear presents with ringing sometimes and feels blocked. Her belly has always been distended no matter what she eats. She takes probiotics and nothing helps.
I really don't know if this is relevant for your daughter, but as MMA (methylmalonic acid) is produced when certain amino acids are metabolised, it could actually make sense to avoid any extra protein as long as b12 is low. Of course vegans need b12 from somewhere, and adequate amounts of protein, but if someone is deficient because of absorption problem (PA) it may not be good to start eating a lot of meat, because you wouldn't get enough b12 anyway, only a lot of extra protein that breaks down to MMA. (Four aminoacids - methionine, treonine, valine and isoleucine - gives MMA when metabolised.)
I really hope the doctors will find out what the problem is. I wish you the best. Very moved by your post.
I'm so sorry to read about what your daughter is going through.
Mental health is mentioned in following books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I wrote a detailed reply with lots of B12 deficiency info eg symptoms, causes of b12 deficiency, books, B12 websites, UK B12 documents plus more in next link.
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