My daughter has been treated for a mast cell disorder since. 2014. Systemic mastocytosis has been mentioned by Texas Children’s Hospital, where she’s treated, but I’m not sure that’s a settled specific diagnosis. She’s currently battling fatigue so bad that she can’t stay awake in her classes despite adequate sleep. The fatigue seems to be the only symptom we’re never able to get under control. Cromolyn, Tagamet, Cetirizine and a steroid cream helps control her other symptoms. She has some trouble with mild fatigue all the time, but when she’s in a flare the fatigue is severe. Is this common? What can be done about it? They’re wanting to do a sleep study for narcolepsy, but I’m not sure that’s the right route.
I can’t speak to mast cell disorder specifically. I personally struggle with a different condition, and fatigue is a big issue with it as well. You mentioned adequate sleep. Among other things, it’s possible that while she may be in bed and sleeping for an adequate period of time, that the sleep quality is not sufficient. I would probably consider the sleep study. It might provide some answers, it might simply rule out narcolepsy.
I remember when a sleep study was initially discussed for my teen daughter. The instructions seemed a bit overwhelming at the time. Little did I know at that moment that instead of the sleep study lasting one night, she would be hospitalized for five nights to diagnose and start treatment for epilepsy. Even though I wasn’t too sure that the sleep study was appropriate, we still did go ahead and schedule it at the moment.
Sharon from ModSupport
Thank you for your response! I hadn’t thought that there could be something besides narcolepsy, apnea or mast cell related, but there could be. Glad you were able to find out things and find treatment for your daughter.