A lovely family have agreed to share their story as it gives such an important message. This is the email I received from Anna…
Dear Tracey I hope this email finds you well. I just wanted to say thank you so much for your work and your fantastic website.
My son has been under investigation with the pediatrician since he was 8 weeks old. He’s had hundred of blood tests, MRI scans, 24 hour urine and no one has ever been able to identify the cause of all his issues. He had physiotherapy for his hypotonia and developmental delay. As well as speech and language therapy to help him learn how to eat solid food as he could only consume puree.
He is now a year old. And a day before his birthday we finally got a call. A metabolic specialist found he has a B12 deficiency along with high homocysteine and MMA. He also has elevated creatine kinase.
His treatment started immediately, the next day. But, my partner and I were completely in the dark. We didn’t know what B12 deficiency meant. We didn’t know if it was just something they happened to find or if it was possibly the cause of all his issues. The doctors gave us no information.
I tried researching for a while. Only finding information on adults or teens with the deficiency. I couldn’t find anything that could relate to a baby. Until I came across your website. What an eye opener. We noticed our son had every single sign and symptom listed for children with B12 deficiency.
Unfortunately we don’t know what the future holds for our son. But I thank you for educating me and my partner when even the doctors couldn’t.
We have shared your page with the nurses in the childrens unit at our local hospital as well as with the health visitors. In hope they can potentially save a child from life long struggles. None of them even knew about B12 deficiency in kids, which shocked me.
We are so greatful to have come across this information when we need it most. If only we knew about the symptoms of paediatric B12 deficiency before hand, we could have pushed for tests long ago.
You’ll notice there is both sadness and kindness in Anna’s communication. There is no anger and blame about the waste of time or about the fact they were still left in the dark even after their son was diagnosed.
They are still having to do all the research and in turn help to educate the health professionals involved in their son’s care.
I know many who will read this will probably feel anger about the unnecessary pain and worry this family have experienced and may even have similar stories. My hope is that the work this loving couple have done in researching vitamin B12 deficiency for their son is not in vain. That the delay in his diagnosis touches some of the health professionals who have been given links to the site. That they can educate themselves and make a difference to others who find themselves in this situation.
My heart goes out to this family and to all who have struggled in this way.
Lessons from Anna’s message
Anna’s moving email details the enormous gaping hole which remains in the medical system. This will continue to lead to the potential for permanent harm of children (and adults) whilst health professionals are not educated properly, if at all, about vitamin B12 deficiency.
The idea that vitamin B12 deficiency only affects women over 60 still persists today within many disciplines of medicine. This fundamental misconception needs to be addressed. If you’re a doctor and you’re not looking for something, then how will you find it?
Even though I knew my grandma had B12 injections when I was young, I had no idea about what B12 deficiency was and how it occurred.
If thorough education of nutrition started in school – (not just learning about scurvy in history through explorers journeys at sea) – we’d all be in a much better position. There are plenty of subjects in school curriculums which are never used. I can’t recall needing sines, cosigns and tangents at all. I would have loved to have learned about the fibonacci sequence at school but I didn’t find out about that until I was in my twenties.
In my humble opinion, much of what we are taught at school could and should be replaced with information that really matters in life. The kind of learning that keeps us well and understanding how the mind and body thrives. Wouldn’t that make sense?
New B12 courses
We know that education of vitamin B12 deficiency is vital for everyone. I have taught health professionals and lay people about B12 and in response to Anna’s email I have finally got my act together to run regular Zoom courses in understanding vitamin B12 deficiency both as a patient and as a practitioner.
To find out more, please visit our courses page.