The question posted earlier about seizures in a breastfed infant prompts me to 
share the story that one mother told me about her struggle to get a proper 
diagnosis for her child who turned out to have Vitamin B-12 deficiency. This 
baby did not exhibit seizures to my knowledge, but it is certainly possible for 
vitamin deficiencies (particularly deficiencies of B vitamins) to cause seizures. 
The take home lesson, I suppose, is to "leave no stone unturned".

Below are the questions I asked with her unedited answers. 

Carolyn Donohoe Mather, MAS, RD, CLEC
Breastfeeding and Outreach Coordinator
WIC Services Branch
Honolulu, Hawaii
[log in to unmask]
 


Here are the answers to your question.
 
1) What was the first symptom you noticed with regard to your baby's health?
 
We became concerned at 9 months. He had previously eaten but he was 
refusing food and only nursed. Food would come to the front of his mouth and 
be on his lips and he would cry. We have since learned that refusal of solid 
food is a symptom of B12 deficiency in an infant along with tongue thrusting. 
Our daughters had taken well to eating at 6 months of age so this was 
unusual. 
   
We wanted to add formula and were told by our pediatrician it was 
developmentally inappropriate and that breast-milk was a complete source of 
nutrition until 18 months of age. He was the Head of Pediatrics at Saint 
Vincent's Hospital and we followed his advice. He was diagnosed with iron 
deficiency anemia at 12 months. This was based solely on a CBC. No further 
test were ordered. We were told the anemia was resolved at fifteen months. 
The hematologist who later treated our son said the B12 deficiency first 
presented by nine months. His growth curve flat-lined from nine months to 27 
months when B12 injections were started.
 
2)  How was it determined that vitamin B12 deficiency was the problem? (were 
tests done?)
 
     Tests done and results as follows:
 
     Serum b12 -------------------------------130pg/ml------------------ref 
range  211-911
     Homocysteine --------------------------89.2mcmol/L------------ref 
range  5.0-15.0    Plasma / Serum
     Methylmalonic Acid, U --------------268.4mcmol/L----------ref range  
1.6-29 .7
     MMA - Normalized --------------------28.9 *--------------------- ref 
range  4-2.5 
     Folates ( folic acid) -------------------13.9 ------------------------ref 
range  normal: greater than 2.6
    
We were referred to a neurologist at 21 months and told he had a lysosomal 
storage. He also had an MRI that showed global brain atrophy which we now 
know was consistent with a B12 deficiency. The neurologist had narrowed it 
down to five lysosomal diseases. I have a friend who is a doctor in research 
and he told me to get the medical records and he would find the best people 
to help us. When I got them I realized his blood had been abnormal for over a 
year and called the neurologist and asked her to order a B12 test. I had 
already asked the pediatrician on three office visit if it could be B12 and was 
told "Nobody gets a B12 deficiency. He is getting enough from your milk." That 
is why I asked the neurologist for the test. At this point his MCV was 122 and 
had been climbing steadily for 9 months based on lab reports. We did not know 
the CBCs had always been abnormal. We thought they were okay and then 
got worse again until reading the lab reports. My concern about B12 was 
based solely on an AMA Family medical guide. I unfortunately did no further 
research since we were assured he did not have a B12 deficiency. The AMA 
book listed abnormal red blood cells in addition to pale skin, difficulty walking, 
tingling in fingers all of which our son had. The tingling in fingers we had 
brought up to the doctor because he would pull on them. He dismissed it as 
behavioral.
 
3)  Did you have your breast-milk tested?
 
No. I went to the lactation consultant Glenda Dickerson and she told me the 
only place she knew of was possibly at The University of Mississippi where 
they had someone who tested cow's milk and they might be able to do a test. 
I did not pursue it because shortly thereafter we realized it was a B12 
deficiency. That was in 2001. If you know of anywhere to have breast-milk 
tested I am sure she would welcome the information. She wrote up a case 
study and presented it to local lactation consultants. Her email is 
[log in to unmask] Glenda told me about Dr. Peter Hartmann 
and the work he is doing with regard to the science of human lactation. You 
can google him if you would like.
 
4) Was there anything that put you at risk for low vitamin B12 levels? (e.g. 
stomach surgery, low intake due to vegan diet,etc.)
 
Yes. I have been a lacto-ova vegetarian for 34 years, 25 years at the time I 
gave birth and was nursing. Our older daughters who both nursed were born 
when I was 24 and then 34. I was almost 43 when our son was born. I have 
had fibroid tumors for almost twenty years and have a history of extremely 
heavy blood loss. I am not sure what effect this may have had. My B12 when 
tested was 330 and fell to 300 in a few months even on 10,000 time the RDA. 
This was in the form of cyanocobalamin tablets. The hematologist said my B12 
wasn't low enough to explain why our son's was so low. He and I both were 
later diagnosed with wheat allergies. His allergist said he was getting the 
allergen in my milk. He did have loose stools and his diapers would leak. We 
attributed this to breastfeeding. We now know that a wheat allergy diminishes 
your body's ability to absorb B12. He is also allergic to eggs. I was drinking Silk 
soy milk and eating dairy and eggs. (dairy and Silk on a daily basis)
    
5) How do you make sure that your baby and family gets enough B12 now?
 
We take Methyl-B12 5000 mcg made by Jarrow Formulas. We might miss a day 
or so if we run out before buying a new bottle. My son and I are the only ones 
who have been B12 deficient although we are all lacto -ova vegetarians. My 
mother who passed away in 2007 had always eaten meat. When this 
happened with our son and I read reports B12 and learned how anyone over 
60 is at high risk I had her levels tested. She was 85 at the time and she did 
have a deficiency and remained on the prescription called Foltex.
 
There is a mom in Australia that I made contact with through Sally and all five 
of her children were breastfeed and had B12 deficiencies. One has an injury 
worse than my son's from what I understand. They are not vegetarians. They 
are of Estonian decent. We are also of northern European decent. My son has 
very blonde hair and blue eyes. He favors my mother. 
 
Sally tested 10 children with the diagnosed with Autism and found 7 or 8 to be 
B12 deficient. I think many cases are going undiagnosed and the doctors who 
see these patients are looking at other more complex diseases and never 
suspect something as simple and easily treated as a vitamin B12 deficiency. 
We are hoping that through people like you and the lives that you touch more 
injuries can be prevented. Anything that you are able to do will be appreciated 
more than you know.
 
This is so much information. I do hope to not overwhelm you. When you have 
a chance I would love to hear back. Please feel free to share our story if you 
think it could help someone in anyway.
 
Sincerely,
Melinda

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