As I discussed in the previous post, our son’s symptoms greatly improved on the Mayo protocol & we were extremely happy with his progress. He even started attending ¾ day of school in Sept 2015 (we attempted full day, but didn’t make it). He was still far from his “normal” self and had symptoms that were affecting his ability to function normally, including low ferritin levels, exercise/activity intolerance, & fatigue. With the exercise intolerance, he would still “crash” after too much activity (or too much activity intensity). Crashes would include low-grade fever, increased fatigue, loss of appetite, & pallor. These crashes usually lagged the activity by 12-24 hours (usually closer to 24 hours). Over several months, these crashes lessened in severity and length, but were still a part of our lives and limited his “normal” life functionality.
Due to our son’s low white blood cell count (neutropenia) & low ferritin (iron) levels, we ended up seeing a hematologist near our home. Turns out that this doctor had treated other POTS patients over the years. After attempting to increase our son’s ferritin levels with over-the-counter & then prescription iron without much success (for some reason his body just won’t absorb it well orally), we decided to start IV iron treatments with an iron sucrose called Venofer.
Why are adequate ferritin levels important for the body? Ferritin serves to store iron in a non-toxic form, to deposit it in a safe form, and to transport it to areas where it is required in the body. Iron is essential for proper oxygenation of the body. Low ferritin levels cause increased fatigue and other problems.
When we initially tested our son’s ferritin in March 2015, it was 19. His low ferritin level was definitely contributing to his fatigue. Using over-the-counter & prescription iron supplements from March to September, Jack’s ferritin increased to 30. Once we started the Venofer infusions (he had 4 infusions from Sept – Dec 2015), his ferritin levels jumped way up and amazing things happened! He had increased energy & stamina (much less fatigue!) and he was able to increase his exercise and activity levels. His appetite and taste for food also improved. Over several months, his low white blood count normalized (less inflammation with proper oxygenation of the body). Amazingly, he was even able to start attending some hockey practices and games. However, he still experienced some exercise intolerance with overexertion, but these crashes were even less severe.
Here’s the catch … our son’s body cannot maintain the ferritin levels on it’s own and his levels decay over time (usually within the month), which requires him to continue the IV iron infusions – approximately monthly – we are still working out the decay rate and regular infusion schedule. We hope that, down the road, we will eventually be able to maintain his iron levels with food & oral supplements.