Sunday, January 27, 2013

where have I been?

I thought about starting back up here without any explanation. Lots of people take a few months off when they get overwhelmed by life offline. But I think I will write about it here. I have done so much googling over the past year, maybe this could help another parent with a not-thriving little one. In late August, I consulted a dietician about my youngest's still-poor health. In July he fell and hit his head, appeared to have a seizure and went unconscious. I called 911 believing my baby to be dead, but I figured I'd go through the motions so the paramedics could tell me. By the time we got to the hospital, he was fine, and the pediatrician we eventually saw said he had had a breath holding spell. When I got home, I consulted Dr. Google, and discovered that breath holding spells are correlated with low iron. Given that my kid had a lousy appetite and refused to eat any kind of meat or other iron-rich food, and we were eliminating all the fortified grains, I figured we should check that out.

In late August, at the suggestion of an amazing dietician, we ran bloodwork that showed my youngest was SEVERELY anemic due to both iron and B12 deficiencies. His hemoglobin, which should have been at least 120, was only 106. His serum ferritin, his body's total iron stores, which should have been at least 10, was 2. His UIBC, which is, as I understand it, is the number of iron receptors on his red blood cells that don't actually have iron, was the highest the dietician has ever seen at greater than 178. He had both microcytosis and macrocytosis, which means he had red blood cells that were both too small and too big. Iron deficiency causes red blood cells to shrink and B12 deficiency causes them to grow. (Folate deficiency also causes red blood cells to grow but with all the fortification now it's quite difficult to develop a folate deficiency.) (I also want to note here, that although I asked the ER doctor if Youngest's bloodwork was normal and he said it was, we have since requested that bloodwork, and it turns out he was even more anemic then -- his hemoglobin was only 101 and he had several other markers of severe anemia -- but I guess nobody looked at that or thought it was worth mentioning to me. WTF?)

We've put the kid on a million supplements that all have to be administered at different times so as not to counteract each other and it's taken a long time to find a new normal. My youngest now gets liquid iron, B12 lozenges, zinc and probiotics. He's also supposed to get Halibut liver oil for the vitamin A, but I can't figure out how to get it into him. If I try adding it to food, he just stops eating that food. And he won't eat the the little capsule. We've also got him on 2000 IU of vitamin D. He is low in vitamin D, although there isn't actually a pediatric reference number, but more importantly, we're testing him over the next month to see if we're dealing with malabsorption.

If your child is not thriving, I highly recommend seeing a good dietician and getting bloodwork done.  Having said that, our particular dietician is amazing. She is commended by several organizations and has a PhD in iron and zinc in pediatric immunity, so her specialization is exactly suited to us. It's possible that the common or garden variety dietician may not be as helpful as ours.

It's also worth noting that different labs use different reference numbers and they may also differ from generally accepted reference numbers from the pediatric medicine folks. So the lab may not flag a deficiency, when you actually have one and would benefit from supplementation. For example, the lab said my serum ferritin should be a minimum of 10 but the dietician uses 80 as a reference based on research that shows symptoms, like depression, below 80. The lab said my B12 was fine but the dietician's reference numbers said borderline. I was also having mild neurological symptoms and there is no known toxicity associated with B12. To complicate matters, serum B12 (i.e. B12 in your blood) does not correlate well with the amount of B12 in your nervous system, where you really need it. So if you're having symptoms of B12 deficiency, it's probably worth chewing on the lozenges.

What the dietician initially suspected has since been borne out by multiple blood tests. In November 2011, at five months old, my youngest got his third dose of Rotateq, a live, oral vaccine against rotavirus. Within days he developed horrible diarrhea. After a few weeks the frequency subsided, but his stools remained pale green and slimy until I went on the elimination diet in February 2012. My wee baby never did have one of those yellow, seedy, breastfed-baby poops ever again. The dietician figured he had some underlying deficiency, perhaps an immunoglobulin deficiency or low iron, which caused him to get sick with rotavirus instead of mount an appropriate immune response. This stripped his gut of its protective lining, so he stopped absorbing zinc first, then iron and B12. These three deficiencies cause loss of appetite, which means he gets fewer nutrients going through the poor, damaged gut and creates a vicious circle.

To add insult to injury, he received his third DTAP vaccine at six months, even though I expressed concern to the pediatrician that he was sick and not doing well (he had already dropped from the 90th percentile for weight to the 75th percentile since his last weighing a month before). She said it wasn't serious because Look at him! He's smiling! He's met all his developmental milestones and then some! He's thriving! I've since found out that the World Health Organization mandates that only well children receive vaccines. (Of course, the problem is in defining what wellness is.)

Within three weeks of receiving the third DTAP vaccine, my youngest developed pertussis, which although I suggested it as a possible diagnosis to the pediatrician pretty much weekly (thanks to youtube videos of all kinds of different coughs, I knew his coughing spasms were textbook whooping cough but of course they only happened in the middle of the night when you think your baby's going to die because his lips turn blue from the coughing and not at the doctor's office) and he was a freaking textbook case with all the coughing until he vomited, and both Eldest and my husband were having massive coughing spasms and both developed pneumonia too, she denied as even a possibility until after we were all better when she suggested the possibility. Ya think? (We no longer see that pediatrician.)

I avoided doctors for a few months around the baby's first birthday in late May, because my gut told me not to vaccinate him any further until we had a better handle on what was going on with him. I only went to our family doctor after my first consultation with the dietician. I figured it was worth getting bloodwork done to confirm her thoughts, and as described above, they totally did. Luckily, our doctor is ok with not vaccinating until Si he's better, since at the very least, he's clearly not mounting the appropriate immune response.

Perhaps it goes without saying that it was a total shock to discover that our baby was so very, very sick. I knew he wasn't well, but for how awful his bloodwork was, he was actually amazing. His development remains ahead of schedule on all fronts: gross motor, fine motor, language. I fell into a bit of a depression with the news of his shocking health status, although I think it might be better described as simple grief and overwhelmedness and adopting yet more changes to our diet and daily life. I will never again see that chubby baby with the perfect yellow, seedy, breastfed poops. (It occurs to me as I type this that every parent of a toddler can say this, but I mean it a bit differently.)

By the time we saw the dietician, my youngest had fallen to the 12th percentile for weight. That's from the 90th less than a year earlier. When we first started with the dietician, he moved up to the 25th but he's starting to fall off that again. Unfortunately, although his iron and B12 status has improved, he's still not really thriving. We have just discovered that he is also deficient in Immunoglobulin A, which is a relatively common immunodeficiency. Immunoglobulin A is the immunoglobulin that protects the gut and other mucus membranes. It turns out that live vaccines generally, and particularly the rotavirus vaccine that the baby received, are specifically contraindicated in people with a deficiency in Immunoglobulin A because they can develop chronic rotavirus infections. We still need to discuss this all with our doctor, and hopefully get referred to an immunologist, because his other immunoglobulins are in the low end of normal despite the fact that he's still breastfeeding on demand. But from my reading, low Immunoglobulin A is permament, untreatable, and correlated with Celiac disease and other autoimmune diseases.

I have always been sympathetic to people who suspect vaccines are not the public health panacea they're toted as. I tried to do research on the subject when I was pregnant with Eldest, but found I couldn't find reliable data on either side of the debate. The anti-vax side has very emotional and anecdotal arguments and the government side just does a whole lot of head patting and There, There. I wanted to see the studies myself and compare the risks of each disease with the risks of each vaccine, but you can't actually find that. Or rather, I couldn't. So in the absence of real data, we decided to trust our pediatrician. With Eldest, it seems to have worked out fine. But the rotavirus vaccine was new since his infancy.

I know some people denounce anti-vaxers as anti-science and logic. Perhaps some of them are, but I don't believe they all are. I know of three people, including my own youngest and an adult, who have been injured by vaccines. Perhaps you can see it as collateral damage in the war against horrible illnesses, but when it's yourself or your own child, it's pretty fucking catastrophic. I'm not saying vaccination is wrong at all, but I think it's not a bad thing to use it sparingly, to save it for the really awful diseases and well-tested vaccines. The fact is that a body needs to mount the appropriate response for the things to work, and clearly, that doesn't always happen. And that IS science.

The thing is, parenting is HARD. Making decisions for our kids is HARD. We just have to do our best, use the information we have, and make the decisions we can live with. And, perhaps I could add, be compassionate to other people trying to do the same thing, and who may come to different conclusions than we did. That doesn't make our own decisions wrong. It only makes them different.

mentioned before that the changes I was trying to document here felt fragile and in need of protection. It's really hard to do things differently from convention. It takes a lot of energy to be ok with other people's unsolicited opinions and judgments, especially if they're coming from friends and family, and toremain comfortable with the grand experiment we're undertaking. For the last several months, I felt far too vulnerable to write here. But I think I'm back now, and more comfortable with our choices than ever.

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