It is definitely related.
1. With EHK, the moisture barrier is impaired by the shedding skin.
2. As you lose water from evaporation, you take heat away with it. You also reduce blood volume.
3. In order to maintain body temperature and blood volume, the body's first response is to constrict the blood vessels in the extremities, which makes the blood stay in the torso, where keeping the organs warm and hydrated is crucial, where extremities are not.
4. You have probably noticed that she drinks a lot more fluids than normal people do. My husband can drink an entire pitcher of juice in one sitting. My 4yo drinks at least 40 ounces a day. The baby does about the same. This is because of the reduced blood volume, which changes blood chemistry (pH and respiratory rate and osmolarity of the blood, among other things). It ultimately makes you thirsty until all those levels are restored.
What to do about it? Keep her hydrated and dress her warmly. I doubt that there's any underlying problem. Although she may end up with some contractures as she ages if she is keeping them balled in fists all the time. Encourage her to use them as much as possible.
Reticular Ichthyosiform Erythroderma with white spots.
Husband, Nathan - 4, Elliot - 1, all affected.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"