Thursday, June 25, 2009

Living with a Syndrome....

Today started as your average day, already planned out...Brook needed a quick hearing test (just procedural for the state to approve her final few SLP-speech language pathologist visits) and IF and only IF everyone behaved, we'd stop at the park. I needed a loaf of bread and we were gonna pass two small bread stores on the way so I asked Gage if he felt big enough to go in there alone? He very proudly said "sure, I can do that!" We pull into the parking lot and we both get out, I stand outside the car and he goes in (there's no other customers). He looks back and says maybe I can't do this, I can't see good. I smile and shoo him on in thinking he's making excuses, he's chickening out. He reluctantly goes in only to return with my money and his visual disturbance. We all go in to grab some bread (I grab Texas Toast by mistake) but I now have a potential "condition" on the horizon. This continues for ten minutes and the vision improves only to be followed by a severe headache. Brook had to go in the booth alone (thatagirl !) and now I'm back and forth between the room she's stationed at and the bathroom where Gage is stationed at as he now felt like he was going to throw up...but he doesn't. At least not until an hour later when we were finished and home and he does twice but luckily in the toilet. As I prepare for a virus (stocking the fridge w/Gatorade, checking for chicken noodle soup) the usual automatic mommy stuff, he goes to bed, demanding the light remain off along with his processors, and he goes to sleep...very unusual for him. An hour later he wakes and the ibuprofen helped (when Tylenol did nothing!) but didn't take the pain away but he was starving. He ate meal after meal and had not one stomach cramp/ache so at this point I'm concerned that it's not a virus. I even say to myself...I kinda wish I felt sick now. Though that doesn't happen, a quick phone call is made as my mind races who to call...pediatrician? or ci doctor?....Although I want to call the ci doc for everything I tell myself that this is really the ped's area and I know I can always call the ci surgeon if I feel unsure of the answers I get from other docs. Our pediatrician is out of town til next week but his nurse practitioner (who is GREAT!) calls me back, we discuss in detail the events and the previous events that occurred in Dec. (we stayed overnight for a similar episode w/out the visual impairment). We conclude that Gage is very likely having migraines. Makes a lot of sense! Last December (when he was having all the infection issues) he was fine one minute, then knocked off his feet (within minutes!!) literally, I had to carry him into the ER. He had numbness in his fingers, nearly hyperventilating, vomiting, but it started w/the headache. Anyway, so that's where we are. We assume he's having migraines, we'll watch for another episode, should one come soon, we take him to the nearest doc, should it come in six months, we're likely right about the migraines. If they start coming more often we'll take him to the pediatrician so they can check him. Six hours after the whole event started and he's outside in his cabin playing, as if it didn't happen. His processors are back on, he's just living with a syndrome.....
We never know what tomorrow will bring. Every time we turn around he has some type of new medical mystery but luckily we are surrounded by people who can figure things out and help me sleep at night! We never made it to the park today, I'll bribe them with that for Tuesday's visit w/the ci surgeon.....maybe they'll behave then.



6 comments:

Tiffany C. said...

Yall are so blessed to have such a great group of doctors surrounding you. I wish it was that way for us. That so quickly they can figure out what's going on with Gage. I hope he gets to feeling better and it stays away! We'll be praying for him!

Rachel @ Cochlear Implant Online said...

I get migraine headaches twice a year which lasts for a week. When I get them, I have to be in a room with complete darkness as I can have extreme sensitivity to light like what Gage was experiencing, and I never wear my CI when I get the migraine headaches. I also often feel the need to vomit, but most of the time I don't end up vomiting. It's not a fun thing to deal with!

Emily Whiteside said...

Val - your family is blessed by you!! At almost any juncture in the events you posted, I might have just raised the surrender flag. My hat is definitely off to you.

Shelleyrae33 said...

Very sorry to hear about his problems! Has he been tested for Usher's syndrome? I'm sure he has, but I know it is more common in children like ours. I hope the mirgrains are few and far between. Thank God for doctors!

K.L. said...

Just a question,has he had his vision checked lately? My daughter has a ci and a shunt, so when she started getting splitting headaches with light sensitivity, we thought of lots of things that could be horrible. Turns out, she needed glasses.

Anonymous said...

I tell ya Val...your kids aint lettin you have a dull moment. hope all turns out well....