September 3, 2011

Vitamin A Deficiency

Everyday since beginning supplementation, it has become crystal clear to us that Bertrand was extremely deficient in vitamin A.

We have seen a lot of changes in Bertrand and, almost every time we google, it turns out that vitamin A is involved.

Vitamin A is important for more than just tears. Pretty much every moisture producing gland in your body (and there are LOTS) uses vitamin A.

So what are some of the changes we see in Bertrand? (Beware, there may be TMI for some.)
  • Tears - Self explanatory.
  • Styes - These are blocked oil glands in the eye lid. Now that the oil glands in his eye are coming back on-line, he has had at least 10 of these bad boys. I have to scrub his eyelids twice daily so they pop on their own. Lovely, right?
  • Cradle cap - Also known as seborrhoeic dermatitis, this is caused by overactive oil glands in the scalp. It has gotten better after using Head & Shoulders shampoo, but there are still plenty patches left to pick off. Double lovely.
  • Cough - Turns out that the lung has moisture glands that help with respiration. If they are going into overdrive like all his other glands, I can imagine it's uncomfortable. He is coughing a LOT. Maybe all the productive hacking will FINALLY get rid of that patch in his lung from pneumonia over a year ago. I can hope, right? (Coincidentally, his oxygenation high value rose from 95% to 100% for the first time. This may also be B12.)
  • Snot - Oh. My. Goodness. There are rivers flowing from this child's nose for the first time EVER. I wipe his nose, turn my back for 2 seconds, & turn back to see his face covered again. Every tissue box in the house is depleted. Moving on...
  • Bowel movements - He is having at least one every day--no miralax needed. They seem to have a coating?! Google... yup, your intestines all have mucous glands. I'll stop here.
I didn't even realize how weird (and time consuming) it was to slather my child in Cetaphil and Aquaphor multiple times a day, shove Ayr up his nose nightly, add Miralax to his drinks, set-up the humidifier in his room, put drops or ointment in his eyes every 2 hours... until now.

And, to be honest, I am angry. Furious, even.

It's more than the scar on the cornea of his right eye. It is every strained bowel movement he suffered. Every time we had to pin him down, screaming, to put drops in his eye, or dig un-yielding snot rocks from his nose. Every cold he couldn't shake. Every hospitalization. Every tear he couldn't shed.

All the pieces of the puzzle were there. So why did I have to be the one to put it together?! We've paid "experts" hundreds of thousands of dollars to poke & prod my poor child. And, at least for these symptoms, a simple vitamin supplement was what he needed all along?!

I am horrified. And, not just for Bertrand, but for all the other children and their parents, who are also overwhelmed, but lack the energy, stubbornness or chutzpah necessary to second guess the experts.


  1. It is so sad. Doctors are all hacks.

  2. I think you would be abnormal if you were NOT angry at this point. It's part of grieving, and I think you are grieving.

    B has such a bright future ahead of him. What a miracle.

  3. I came across your blog a while ago and am in complete amazement regarding your findings/results after the supplementation. It gives me renewed hope and energy to figure out my sweet puzzle. You are incredible.

  4. Cristina,

    You are an inspiration to me! It has been amazing to read about your research and the results it is yielding. I can't remember how I first discovered your blog but I can relate to your experiences (my daughter has a genetic disorder and also attends special education classes at Ensign -- unfortunately she hasn't been with Bertrand). Reading about your journey reminds me not to forget that I am the expert in all things related to my daughter. Thank you so much for sharing.

    (mom to Siena)

  5. I'm angry for you too! On one hand, I hope you're right so B can get better. On the other hand, if you are right, I will have lost a lot of faith in medical practitioners for not catching something so 'simple' earlier on.

    You are in my thoughts! I hope B continues to get better!


  6. Thanks, all.

    Katie, you come really close to capturing our conflicting feelings. While we want Bertrand to get better more than anything, if he was "simply" B12 deficient (and this should become evident within the next 2 months), that is almost as horrific as it is wonderful. SO we'll see... and hope my therapist offers some kind of frequent flier discount. ;)

  7. You guys have always done such a great job of being proactive and probing while being utterly graceful. I know you will continue with that.

    And yes, I think your therapist should offer a quantity discount. I would have already been in the loony bin for sure. :)

  8. Finding the right doctor is probably the most important thing. Although these procedures have become more common, they are no less serious than a regular surgery, and a choice of doctor is just as important.