The doctor at UCSF said that we would see immediate and dramatic results. The truth…?
They had asked us if she had diarrhea – another sign of a zinc deficiency that contributes to the failure to thrive. At that point we had noted none, however within a half hour of leaving the office she started. 3 more times that day she had diarrhea. Obviously it was moving into the next phase but we’d caught it in time. As soon as we had the prescription in hand, we gave her a dose. She scrunched up her little face and pursed her lips. Had I been thinking, I would have taken a photo, but honestly, I just wanted her to get better. If I thought that giving her the whole bottle would have helped… I bet I would have given it all to her that day.
That was the last time we saw diarrhea.
Within a day, the sores on Maisie’s face began to flake off and they were not replaced with new ones. We could see healthy pink skin beneath. Every time she spit up and we dabbed at her chin, the skin on her chin would come off with on the spit-up cloth leaving what looked like scratches behind. Her lips have not cracked and bled even once more since that first dose. It has been like magic.
All Hail The Amazing Dermatologists at UCSF!
KC’s RESEARCH ALERT: on Zinc deficiency.
They do not believe that Maisie has the hereditary disease, Acrodermatitis Enteropathica, which is due to the malabsorption of zinc through the intestinal wall (an autosomal recessive disorder). In this case both parents need to be carriers and there is likely to have been someone in the family who presented with this disease. While information on Maisie’s background is sketchy, at this point we have no reason to believe this is the case. She has the markers of Transient Acquired [Symptomatic] Zinc Deficiency. However it will not truly be known until we wean her off of the zinc supplements. If she begins to show signs of zinc deficiency, even with a healthy diet, it would be likely hereditary. The treatment for that is relatively simple:
Zinc supplements daily for the rest of her life.
And while slightly annoying, easily remedied.
I have found some great studies that have been done and while I don’t have time to read the full paper, I’ve now read a lot of abstracts. Ironically however, one of the best resources has been “Primary Care of the Premature Infant“. There is a lot of information in there but I zeroed in on the section about zinc deficiency. It explains that zinc stores build up in the 3rd trimester. Maisie missed 2 months of the 3rd trimester so it stands to reason that she didn’t start out with much of a storage. It also says that between birth and 3 months there is a drop in the zinc levels in maternal breast milk. Since I did not give birth and already had an established supply, there was no ‘higher to lower’ levels of zinc in those first few months. There was only the baseline of an established milk supply (which is approximately 22 umol/L). So, not only did Maisie miss out on those very important months in the womb, she also missed out on colostrum (very high in zinc) as well as the higher levels of zinc in lactationally age appropriate milk. I wish that we had had a very candid discussion with the neonatologist in the hospital – all of this might have been avoided. However, it is more likely that he did not know that this was a possibility. It is still relatively unheard of. Additionally, most preemie babies go home on a mixture of breast milk and formula. Maisie did too, however it was for the extra calories and when it was clear that she was growing well, the formula was discontinued rather early on. “Primary Care of the Premature Infant” suggests that now that many more preemie infants are being exclusively breastfed that we are likely to see more cases of zinc deficiency.
It’s also possible that I have low levels of zinc in my breast milk. It is now being tested. It is rarely done and I wonder if they even really knew how to do it – but we are waiting for the results. It’s possible that I have low levels of zinc in my milk, but unlikely, as Eamonn did not have any signs of having a zinc deficiency at any point.
KC’s RESEARCH ALERT OVER
Back to the sweet baby who is affected by all of this… She’s back to being a happy baby. She’s sleeping better, eating better, gaining weight finally and all around healthy and happy.
And so are we.