A new diagnosis for Jayden, although I did not catch us by surprise. This summer, we noticed that he did not tolerate the heat/sunlight well at all. My mom was saying that it must be due to this being his 1st summer in Louisiana, but the summers in MS were not much different at all and he did just fine last summer. Jayden avoided playing outside at all costs which made it a particularly long summer for us. The Disney World trip was extremely hard for him and he had multiple seizures and complained about the heat all day. When he went back to school in August, the teacher and her aides noticed the same issue and said that they would start keeping him indoors for recess until the weather cooled. Well, it's cooler now, but the sun still shines so he was still having issues. We ended up changing his schedule at school so he comes home right after lunch. No recess for him :( One of the aides told me that she noticed he doesn't sweat. She was right! I haven't seen Jayden sweat in a LONG time. I know he used to sweat. I immediately went home a goggled it and came up with anhidrosis. But it's a rare condition, so what are the odds that Jayden had it? We started looking in to the medications he was on but the Drs couldn't find anhidrosis as a side effect, although one of his neurologists did raise an eyebrow to the Topamax. However, he has been weaned off of Topamax and still has the issue with the sun.
So today was his dermatology appointment. The nurse did the initial screening and I told her that he doesn't sweat and literally acts like a vampire in the sun, clawing at his skin and screaming. We waited a while for the Dr. He came in and said he looked at the chart and immediately was shocked at the complaint and had to go to his computer to do a little research, but he is certain that Jayden has partial anhidrosis. Partial, because Jayden's feet sweat really bad, but no other part of his body does. He said that Jayden's sweat glands in his feet are over active due to the rest of his sweat glands shutting down. Unfortunately, there is no treatment for anhidrosis. There's no way to MAKE him sweat. The only way to overcome anhidrosis is to figure out WHY the patient has anhidrosis. There are several factors in Jayden's situation: uncontrolled epilepsy, epilepsy meds, and his chromosome deletion. The Dr thinks that if we can get his epilepsy controlled and wean him off of all epilepsy medications then the anhidrosis should go away. The only problem with that is that it will be YEARS before Jayden is in any condition to be completely off of his seizure medications. Before that can happen, he has to be seizure free for 2 yrs and he is no where near that point right now, unfortunately. There is also a small chance that the anhidrosis is a result of the genetic disorder, but that chance is very small b/c Jayden was born with the genetic disorder yet the anhidrosis is fairly new.
The dermatologist is intrigued by Jayden's case and also concerned b/c Jayden is so young. He said that it puts Jayden at an extremely high risk for heat stroke so we have to be very cautious with him. He doesn't want Jayden outside at recess and even wrote a note for school. No prolonged playing outside. Close supervision when playing hard inside (Jayden stops after a few minutes of playing inside and runs to the fan to cool off so he feels when he gets too hot), a ceiling fan in his room (which he already has), keeping him hydrated, and carrying a reliable thermometer at all times. It's an additional risk b/c once his body temperature goes up, his seizure threshold goes down. So the anhidrosis has definitely played a part in making his epilepsy worse. It makes me extremely sad to know that my baby cannot play outside. He got a bike for his birthday last year and didn't get a chance to really even learn to ride it. We tried riding it Saturday but the sun peeked out from behind the clouds and he started screaming :( I feel like he is being cheated out of his childhood and it's not fair.
Today has been a particularly rough day for us. Jayden has been going through some obvious withdrawal issues from the medication we had to stop b/c of the rash. His sensory issues have returned with a vengeance and we are having a very hard time controlling him. Please keep him (and us!) in your prayers. He has a followup with the genetics Dr on tomorrow and I will update if anything comes from that. Until then, I'm off to sit in the middle of my bed and eat a big bowl of popcorn. I think I deserve that much!
1 week ago