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Post by hoodieprincess on Jul 30, 2008 11:05:10 GMT -5
So, it's been a year since his surgery to take out his tonsils. We haven't had any major complications since. Two nights ago, he was terribly crabby and I couldn't figure out at all what his problem was. I ended up just having to send him to bed. Well, yesterday, he proceeded to tell me that his ear hurt while he was at daycare. So, I turned to really look at him for the first time since I'd picked him up and the whole side of his jaw was swollen again. I don't know how many of you remember this...It was a HUGE ordeal for him last year. Really, it's something we've been dealing with for the last 4 years. But, until last year it was more manageable as he only got like this every 3-6 months. Last year it was pretty much steady every two weeks (as soon as he'd come off antibiotics). For a 90 day stretch, he'd been on antibiotics for over 75 days. The doctors don't know what is wrong and it was a last ditch effort to try and remove his tonsils. There were other conditions that had us leaning for having it done anyway so it was worth a shot. It seemed to work...Until last night.
I am so stressed out right now. Before, when he was sick all the time, I kind of was like a robot in dealing with it. I knew the drill, I knew the routine. I couldn't stress as I didn't have time. But, now that it's been so long, I am finding myself totally stressed again. I mean, this is something that each and every time, if the infection spreads too far, could potentially be life threatening! I have a doctor's appointment for him this afternoon and am trying to not freak out but it's so hard. It's like I am back to square 1 with this! Aaaaahhhhh... I hate this helpless feeling!
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Post by sheyd on Jul 30, 2008 11:13:57 GMT -5
My daughter got to the point where she had strep throat the same way he gets swollen - as soon as the antibiotics stopped. We got her tonsils out. She HAS had strep since, but only once, and it cleared up right away on antibiotics. My guess is your son will just have this every now and then, but maybe the worst is still over?
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Post by shattered on Jul 30, 2008 13:17:44 GMT -5
hoodie -- I am so sorry to read this.
You and your son are in my thoughts.
Please let us know how the doctor's appointment this afternoon goes.
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Post by goods on Jul 30, 2008 13:48:56 GMT -5
Sorry to hear this, hopefully they will be able to clear it up quickly.
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Post by hoodieprincess on Jul 31, 2008 10:26:42 GMT -5
Shey, it isn't strep. They wonder that every time and every time it's negative. It's not his lymph nodes either. Here's how I explain it to everyone...Find the back part of your jaw where it comes to an angle down twords your chin. Now move your finger back to the soft spot just behind that and under your ear. That's where it comes from and the swelling comes out around that part of the jaw and into the side of his face as well as back behind the ear and down the neck. Please let us know how the doctor's appointment this afternoon goes. Well, for starters, it is time to find a new doctor. I was so totally livid by the time I left I really wanted to just hit the doc he currently has. He proceeded to tell me yesterday that this isn't the same thing they've been seeing him for. He decided yesterday was finally the time to worry about it and say about 10 times how bad what T has actually is and how he's very concerned!! Now, after 4 years!!! I actually talked back and all hopes of staying sweet and polite went out the window and I didn't care if there was a med student in there or not. I didn't yell but I did end up asking him when he quit paying attention to his patients for the sake of getting them out the door. I did also tell him if he payed any attention at all, I wouldn't have had to speak up in previous appointments to ask him to not just make a verbal assesment of what was going on and to actually put his hands on my son and feel the swelling. I explained that he's gotten so far from being a doctor who is there to treat his patients that I was eternally greatfull for the referral to the ENT last time because then when T was sick, I knew I would take him somewhere that cared about his well being. I'd completely had it with that man. So, here's where we are on things... They sent T over for bloodwork last night. The results are supposed to be in today. The doctor also called in a referral to the same ENT we saw last year. The bad news is, I know someone else who was just referred to that office and they are telling her she can't get in until Aug 21st and T's doc wants him seen by the end of the week. So, I can hope for 1 of 2 things. One, because T isn't a new patient and is a repeat, they can get him in sooner. Or two, at the end of T's treatment last year, the doc said if this came back, he was going to refer us to the Children's Hospital in Denver for an exam. Honestly, I love that doc to death...He is the one who even offered to treat my son at his expense if we'd lost our insurance last year. He's amazing. Now, it's just figuring out where to go from here. I should know a little more once blood work is back today and I get the ENT called in about 5 minutes...Cross your fingers for me!
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Post by hoodieprincess on Jul 31, 2008 10:38:33 GMT -5
So, his next apointment is tomorrow morning with the ENT. My boss is mad. Ugh.
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Post by redskyatnight on Jul 31, 2008 11:18:11 GMT -5
So, his next apointment is tomorrow morning with the ENT. My boss is mad. Ugh. Tomorrow is great! Glad they could see him so early. Hopefully, this will be the start of the last time you have to deal with this. If he gets into Children's hospital, maybe they know what is going on. BTW-That first doc does, indeed, sound horrible.
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Post by sheyd on Jul 31, 2008 11:29:31 GMT -5
I'm so glad you got him in right away - and to a doc that cares! Let us know how it goes!
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Post by Dave on Jul 31, 2008 19:26:17 GMT -5
You and yours are in our prayers.
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Post by shattered on Aug 1, 2008 11:16:05 GMT -5
hoodie,
What a horrible experience with that doctor. And your boss sounds like a jerk, too, I'm sorry.
Thank goodness you have another doctor who is so wonderful.
How did the appointment today go?
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Post by jules on Aug 1, 2008 11:22:13 GMT -5
I'm glad that you're (hopefully) getting better treatment. The antibiotics for 75 days raised a major red flag for me. That's how I became immune to penicillin (after the doc prescribed it to me too often as a young child.)
Thank goodness for GOOD doctors who have expertise as well as compassion. Good luck...
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Post by shattered on Aug 1, 2008 11:31:06 GMT -5
jules -- I'm immune to penicillin, too! Same reason -- docs kept prescibing it when I was a child.
I was super healthy, excpet that I had constant ear infections -- hence the penicillin.
Not sure what else they should have done at the time to get rid of the infections, however.
It's well-known that while antibiotics can be life-savers they should be used sparingly, yet American doctors have prescribed them like candy for decades -- when they're not necessary, just as a precaution, etc. etc. So, hoodie, be careful and asks lots of questions about the antibiotics!
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Post by hoodieprincess on Aug 1, 2008 13:08:19 GMT -5
Well, back from the doctor...
I certainly understand the concern about antibiotics. I expressed the same one myself. The doctor did assure me that to try and help prevent such an issue, they were alternating between two different kinds. But also, the infection tended to be pretty severe and given the location, there was a concern of it spreading to the mastoid bone which in a child his age/size, could be severe if not possibly life threatening. So, they did what they felt best and I won't second guess that.
Now, as far as today, they are trying antibiotics and a steroid again. They don't want to do much more than that at this point hoping it is an isolated incident. They are still looking into some things as the few diagnosis that would typically cover this sort of occurrence, well, T doesn't really fall totally into any of it. The doctor reassured me that should this come back at all, I can come direct to their office and bybass the pediatrician. (THANK GOODNESS!) He's also made sure I know that if it comes back or a pattern is starting, they will go ahead and refer me to a specialist at Children's Hospital.
**Thank you so much for your support everyone. It can always be pretty stressful as we wait and see if we can manage the infection from spreading, keep swelling from increasing, wait each time to see how sick he'll get and how much impact it will or will not have on his day-to-day life for a while. Though dealing with it through my work sucks, it's just a part of life I suppose and I worry more about the effects of things on T than me. It's what mommys do! *wink*
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Post by whalecounter on Aug 1, 2008 19:19:56 GMT -5
I am so glad that they got you into see the ENT right away! I hope the new treatment works well. It must be so scary to deal with all of this. My heart goes out to you.
Screw your boss by the way - if he/she has absolutely no compassion for a sick child, then he/she's just not human!!
Sounds like you're being an awesome mom, and one day your son will look back on his childhood and truly understand what an awesome person you are for doing absolutely everything necessary to get him well.
HUGS
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Post by Kim Possible on Aug 3, 2008 11:15:56 GMT -5
I really hate to suggest this , but having been a nurse in this field (but certainly not a diagnostician), I can't help but wonder: has anyone suggested an oncologist? Certain malignancies often present themselves as infections that cannot resolve themselves.
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