Which came First???
I find myself constantly trying to figure out which of Bugs medical issues is the root problem, and which ones are fallout from that. Currently we are dealing with headaches and sore throats again, which could be from the following:
Acid Reflux. Burns the throat and can cause headaches in some people. On meds, but maybe they aren't working?
Allergies. Boogers. Goo. Drainage. Yum... But wait! She's already on meds and nasal spray... Hummmm....
Sinus Infection. Same as above, but she just finished antibiotics for it, so is it still there or is this something different????
Virus. Can mimic colds and sinus infections and what not.
Something else. I'm sure there are more options out there - but let's hope we don't need to look at them.
Maybe this doesn't seem like a big deal, but the fact of the matter is that Bug has had headaches and sore throats (and fatigue) off and on for a couple of months now. The first time it was also with a cough and stomach ache, and she was diagnosed with laryngitis and bronchitis. She took antibiotics, felt better, then got sick again about 10 days after finishing the meds. She had almost identical symptoms this time around. (note to self, her voice never sounded affected, just sore throat and neck soreness on the outside too) About 15 days after finishing that round of antibiotics she wasn't feeling well again. This time it was headaches, seeing "spots" (she says she sees these on a regular basis - need to ask again when she's feeling well), and sore throat. New DX - a sinus infection. More antibiotics. Now only 1 day after stopping them she's complaining again.
Who has the answer? What is the answer? Is she just having bad luck this year? Are her meds for the reflux or allergies no longer working? How is it all tied together? It is even tied together? Oh, and then there is the fatigue. She's been really worn down. Is it from this stuff, or is it from starting back to recess/PE?
I call this the Chicken and the Egg Syndrome. In my mind when I think of not knowing which came first I always hear the background music to "which came first, the chicken or the egg" from Sesame Street. So, tonight while I was sitting here pondering how to handle my daughter's ailments, I decided to see if I could find that song online. I did! So, for your enjoyment, I present the really old grainy Sesame Street clip of the chicken and the egg. I hope you enjoy it some too - and maybe next time you can't figure out which of your child's symptoms is the most important or the cause of another one, you too will think of this silly tune!
Wednesday, April 29, 2009
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4 comments:
I've been following your blog for a while and having grown up with EDS myself, I really sympathize with everything you guys are going through in a daily basis.
As for the chicken-and-egg-game, good luck with figuring that one out. :) I find it to be a perpetually changing and unsolvable puzzle and as long as the serious stuff is ruled out, I'm content with the answer that the possible cause could be any or all of the above.
It's a silly merry-go-round that we're on and I wish you infinite motherly wisdom as you try to figure it out.
I don't know about sinus stuff, but fatigue and seeing spots could be POTS or other autonomic sysfunction. POTS is common in us EDS-ers.
Has Bug had a tilt-table test? They are often reluctant to do this test on kids (because some of "them" think POTS can only effect adults), but I know of at least one EDS child who was DX-ed with it.
Good luck and I hope this helps.
OSM
I can't remember whether she also has [known Chiari] or not, but, in my case (EDS, somewhat atypical Chiari), my Chiari malformation was mostly made symptomatic by osseous malformations (bony growths) on C1 and C2, which were really difficult to see on MRI (one actually wasn't seen until they had gone in to take out the other).
Interestingly enough, I had also always suffered from frequent sinus infections. As in, I was on antibiotics for at least one week a month. I didn't have a chronic infection; the sinus infections would mostly get better and then just kept recurring. I would clear one out and then get another one. Wash, rinse, repeat. I did have a constant sinus headache to go along with it, but the actual infections were clearly delineated. Again, I'd had several sinus x-rays that revealed little, as this wasn't technically a chronic infection.
Finally, a CT scan and a good ENT discovered . . . an osseous malformation that formed what was basically an extra sinus (I think it must have just divided one sinus into two). He said he hadn't seen anything like it before but speculated it made me prone to reinfection and suggested sinus surgery. It was an easy day surgery (this was while we were still trying to figure out the Chiari and EDS stuff out, too, so this was without what probably should have been additional precautions but fortunately worked out well), and, besides finding things completely blocked off, he also found a significant-sized polyp that had evaded detection on all imaging studies (story of my life. I always have various lumps and bumps that don't show up on films of any sort that suddenly appear when I'm cut open!).
Within 15 minutes post-op, I was already in less sinus pain than I had ever remembered being in (so, people who complain that sinus surgery is so bad, whatever; that surgery was nothing!), and, while I still got maybe one or two sinus infections a year, I had a good five or six years of what seems like "normal" sinus illness rather than the constant thing of before. (I am now getting the frequent--though still less so--infections like before and am wondering if I have some new bone or some weirdness).
Is this at all related? I have no idea. I do know that I have random "bony things" like this in other parts, as well, and I have to wonder if it's not all related. Point being: I have had many other surgeries, complications, problems, pain, etc. due to Chiari and EDS, and the fatigue is an ongoing debilitating thing for me, but the sinus surgery has been the one thing in my life was completely complication-free and had such a clear-cut problem-solution-result that it is definitely up there on my list of "best things that ever happened to me"! When we have so many different, questionably related or unrelated issues, it's easy to either over- or under-connect things. If Bug hasn't had a thorough work-up by a GOOD sinus-based ENT, maybe it would be a good place to start? (If you're in the NY area, let me know if you'd like my guy's name. At a time when I couldn't find a single doctor to take me seriously about any of the other stuff, this man was a godsend in this arena and was just wonderful. I only wish he were in neuro or rheum instead! Alas, I'm not in NY anymore anyway).
The only drawback from the surgery? Before it, I had never had runny nose. I had absolutely no idea that that was how that all was supposed to work. I didn't realize that my nose didn't run, until after the surgery and I suddenly understood why people liked to have tissues. I guess mine just always ran into my sinuses!
Anyway, I'm rambling, but if this sounds at all familiar, I guess it's worth it. Take care.
I wrote a lovely and long comment, and just as i hit the post button, it *poofed* out of existence, and my internet went down... so I'm just going to leave a link to one of my chicken-or-egg type posts, so you can read my experience at your leisure.
http://b-u-b-b-l-e-girl.blogspot.com/2009/04/ummm.html
The toughest question with EDS is "Is this anything to do with EDS?" It's hard to know considering how little is known about EDS, and throgh the blogging-EDSers I find you get the most helpful information, such as the "joint problems change throughout the month along with womanly cycles" that I read on a blog recently. It's something I had never heard from a medical professional, but it was explained that different hormones released at different levels throughout your cycle effect joint laxity.
So keep that in mind as Bug gets older... one more thing to watch for. And I don't know if it's an EDS thing, but I personally hit puberty at 8 years of age, so it might be a good idea to prepare yourself, and Bug for that one a bit before the grade 5 class on the subject.
Hoping all goes well in your world,
BubbleGirl.
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