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So, I took Patrick to the ped's office yesterday (gave the Dr. a piece of my mind too after his nurse was really rude)...
The nurse refused to give Patrick the rapid strep test stating "it would be negative anyway because he's on an antibiotic, so what's the point?"
The point? How about following the after hours doc's orders? How about looking at why we were at the appiontment (to check to see if the meds were working)? The doctor came in, noting that Patrick's running a low-grade fever (thanks Nurse for not telling me that!). Dr. W was upset when he learned his nurse didn't give the rapid test...so he ordered her to do both that test, and the cultured one and 2 day test. He also extended the Z-pack for another 3 days to get us through the weekend after the rapid test was positive .
I let Dr. W know how frutrated I am...we've been dealing with this since February 14th...we've ruled out that Patrick is a strep carrier since he's had negative tests in the past (most recently in November when he was diagnosed with infected lymph nodes). I requested a blood test because I'm worried something else is going on... but Dr. W. said that all it would show was an elevated white count, and we already know he's got a strep infection. So...now we play the waiting game. Waiting to see if he has a strain that is antibiotic resistant (we'll know that result sometime Monday), and if he gets a sixth positive test, will an ENT see him? I asked for a referral, but Dr. W said that "typical" practice is a referral after 6 seperate instances in a 12 month period, with at least one in an atypical time period (like summer). Meanwhile, my little guy is down to 24 pounds because he's not eating enough and he's always tired (again, not eating enough). The lovely nurse suggested protein shakes, but I've yet to come across any that are dairy free (milk allergy), so we're sticking with Rice milk, posicles, lots of applesauce...soft foods that he seems okay with eating.
We are going to be switching doctor's, but the new doctor won't allow a sick visit until a well visit has been established, and Patrick's next well - visit can't happen until after his fifth b-day in October.
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The Fun, Old-Fashioned Family Vacation, 3.0 http://www.passporterboards.com/foru...ml#post4472933
Ch-Ch-Changes July 2015
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Oh man, I am so sorry for what you are going through. Great idea switching doctors, btw. I remember when my DD was little, I knew she had strep. Went to the ped and the cover dr. (mine was on vacay) said "No, it's not strep she's too young (3) they don't usually get strep until after 4. Low & behold the test was positive, duh. Anyway, all I can say is please follow your gut and don't take what a dr. tells you if something doesn't seem right. I have been through a lot with both my DD and DS, medically and developmentally, and I have to be their biggest advocate. Thankfully I have had wonderful docs along the way but there have been a few nurses & radiation techs who have felt my wrath . I would look into your insurance and if there's a way around waiting until Oct. Also, if you really think push is coming to shove with figuring this out (WHY has it lasted for 2 months) I would take your DS to the emergency room at the nearest childrens hospital. At least if he's there, they would be more willing to run a battery of tests. Especially if he's not eating/drinking and losing wieght. Good luck and listen to that voice in your head, it's right
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Has he had negative cultures in between positive strep cultures? For instance, was he rapid strep +, tx with antibiotics, had a neg culture and then shortly after gotten strep again? Or, has he been strep + since the 14th? Have they run full cultures (ID and sensitivites) before this? I too would insist on a CBC with Manual Diff as well as a Blood culture (he could have a low level septicemia and that's why it keeps coming back, it would mean possibly needing IV antibiotics to wipe out). If this has been going on for 2 months and you are not getting the results you want, you need to take him to whatever Children's Hospital is closest and tell them the whole story. He may need some inpatient nutrition if he's lost that much weight and as said above, a more comprehensive battery of lab tests.
ETA: Have your other boys been ruled out as strep carriers? They may not be sick, but if one of them is a carrier they may just keep re-infecting Patrick.
Has he had negative cultures in between positive strep cultures? For instance, was he rapid strep +, tx with antibiotics, had a neg culture and then shortly after gotten strep again? Or, has he been strep + since the 14th? Have they run full cultures (ID and sensitivites) before this? I too would insist on a CBC with Manual Diff as well as a Blood culture (he could have a low level septicemia and that's why it keeps coming back, it would mean possibly needing IV antibiotics to wipe out). If this has been going on for 2 months and you are not getting the results you want, you need to take him to whatever Children's Hospital is closest and tell them the whole story. He may need some inpatient nutrition if he's lost that much weight and as said above, a more comprehensive battery of lab tests.
ETA: Have your other boys been ruled out as strep carriers? They may not be sick, but if one of them is a carrier they may just keep re-infecting Patrick.
A simple "thank you" does not even cover how awesome this post was! My husband kept this in front of him when we contacted our insurance company...they reviewed Patrick's file and found that the doctor's office hasn't ever gone beyond the rapid strep test . The insurance company nurse (Mandy - wonderful woman) was HORRIFIED. She had us take him to the After Hours Care (it's run by the hospital our doctor is affiliated with) and had us specifically request the full culture + sensitivities in addition to a rapid. The rapid was positive, and we're still waiting on the cultures...won't hear back on those until late Monday, but more likely Tuesday. They did a CBC and his white count was elevated, he was also really anemic (no surprise there). For now, they're keeping him on the Z-pack antibiotic, but that may change when we get the results from the culture back. In the meantime, if his symptoms worsen, or his fever returns, we're to take him to Dayton Children's ER (and if that happens, you can bet I'll be taking the list of suggestions you have made with us).
So far, he's been on amoxicylin, augmentin, c-cylin (can't spell that one, but it's the really nasty smelling antibiotic - smells like rotten garabge), rocephin shots and three doses of the Z-pack. They wouldn't discuss "next step" until they get the further results in. I'm so glad you posted those specific steps because maybe NOW we might have some answers?
My other two, as well as my husband and I have been tested (all negative). We don't know if this is a long, continuous case or a reinfection because he's never been retested to see if the medicines have cleared the infection. Additionally, I've been giving him a new toothbrush each day, laundering his bed stuff every other day, and he's been eating/drinking from disposable cups/plates/silverware since the second positive test. We don't have a dishwasher and I was afraid that I was getting things sterile enough to kill germs.
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Ch-Ch-Changes July 2015
[URL="http://www.passporterboards.com/forums/sharing-adventure-disney-world-trip-reports/288847-ch-ch-changes-ptr-july-16-24-a.html"]
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So sorry to hear this. I can only imagine how skinny he must be as Dylan is about the same age and is around 30 pounds and is a bean pole. I hope they figure something out or I too would end up going to a children's hospital just to be safe.
How frustrating!! I hope that the doctors can figure out soon what is going on and then get Patrick on the road to wellness!
Thank you!
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Originally Posted by notjustamom
Oh man, I am so sorry for what you are going through. Great idea switching doctors, btw. I remember when my DD was little, I knew she had strep. Went to the ped and the cover dr. (mine was on vacay) said "No, it's not strep she's too young (3) they don't usually get strep until after 4. Low & behold the test was positive, duh. Anyway, all I can say is please follow your gut and don't take what a dr. tells you if something doesn't seem right. I have been through a lot with both my DD and DS, medically and developmentally, and I have to be their biggest advocate. Thankfully I have had wonderful docs along the way but there have been a few nurses & radiation techs who have felt my wrath . I would look into your insurance and if there's a way around waiting until Oct. Also, if you really think push is coming to shove with figuring this out (WHY has it lasted for 2 months) I would take your DS to the emergency room at the nearest childrens hospital. At least if he's there, they would be more willing to run a battery of tests. Especially if he's not eating/drinking and losing wieght. Good luck and listen to that voice in your head, it's right
Thank you! My husband actually called the insurance last night...more on that in a minute.
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Originally Posted by jimmymac
Thank you!
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Originally Posted by OhToodles!
So sorry to hear this. I can only imagine how skinny he must be as Dylan is about the same age and is around 30 pounds and is a bean pole. I hope they figure something out or I too would end up going to a children's hospital just to be safe.
Thank you! It's pretty scary because he now weight less than his younger brother...and neither are giants for their age. If he runs a fever between now and Monday, it's off the Dayton Children's ER for us...
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Originally Posted by chezp
How frustrating.
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Originally Posted by HiddenMickey
My heart goes out to you and him.
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Originally Posted by mcc0313
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Originally Posted by lazanya
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Originally Posted by Carousel96
How frustrating this must be.
Thank you! I'm kind of "at that point" with doctors if you know what I mean...
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The Fun, Old-Fashioned Family Vacation, 3.0 http://www.passporterboards.com/foru...ml#post4472933
Ch-Ch-Changes July 2015
[URL="http://www.passporterboards.com/forums/sharing-adventure-disney-world-trip-reports/288847-ch-ch-changes-ptr-july-16-24-a.html"]
I'm so sorry you are having to deal with this!! I'm afraid that I would tell Dr. W that I don't give a horse's patootie what "typical" practice is, and that I wanted an ENT referral before I left the office. I cannot believe he will not give you one. SIX seperate instances?!?! That is terrible. I can't believe things have changed so much. I realize it was 20 yrs ago, but all my mom did was tell my ped dr. that I was snoring and I got sent to an ENT who figured out that my adenoids were gigantic and removed them. (Kept the tonsils, they are tiny strangely enough and I've never had strep) I just cannot understand how they can make a child suffer through that 6 seperate (and for your poor son, very long) times before they get to someone that actually can do something besides just throw more antibiotics at them that clearly aren't working. I hope you are able to get someone with their head on straight to help you and your son soon!
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. I would look into your insurance and if there's a way around waiting until Oct. Also, if you really think push is coming to shove with figuring this out (WHY has it lasted for 2 months) I would take your DS to the emergency room at the nearest childrens hospital. At least if he's there, they would be more willing to run a battery of tests. Especially if he's not eating/drinking and losing wieght. Good luck and listen to that voice in your head, it's right 
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