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Ugh...in a fix!


peglem
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So, for the last 4 days Allie has been very sleepy all day long despite getting a full night's sleep every night- and I'm thinking something's up, but just can't put my finger on it. So this morning when I got her up for school, she was just laying around whimpering and I'm thinking she has a headache- give her AM dose of naproxen, and she does not get better. This progresses to out and out screaming and writhing in pain with a migrain. So I give her a dose of imitrex nasal spray and wait 1/2 an hour while she continues to writhe and scream in pain, w/ a side of uncontrollable aggression. Second dose of imitrex, finally gets her calmed...for about 15 minutes. Then she starts whimpering in pain again. But, while she was screaming, I got a look at her throat and it looks swollen. So, waited until 8 when her doc opens and called them- her doctor is not in today and has nothing available for tomorrow- and they lied and said he won't be in Friday (I know somebody with an appointment on Friday afternoon), but whatever... I was offered appointments with other docs in the practice- but that never works so I declined. The nurse triage (who sets up appointments) told me with her symptoms, she should be seen somewhere today. So, I decided to take her to the emergency room at the local children's hospital.

 

I explain about her autoimmune disorders, I explain about her migraines, I explain her lifetime history of chronic strep that is very difficult to eradicate, I give them a blow by blow synopsis of all the meds I tried to relieve her pain and that I saw her throat was swollen. So they run a rapid swab and it comes up positive. So the doctor says we'll treat the strep and follow up w/ ped. By this time, Allie is really beginning to show signs that the pain is ramping up, so I ask what I'm supposed to do about her pain- I only have one more dose of imitrex until the 10th. So, she says she can give some IV pain meds through her port, and do some bloodwork to see if she has infection elsewhere as well. So we consent to that (I've never seen anyone so incompetent w/ accessing her port) and they give IV morphine that really, really helps, then run a saline drip. Like an hour later- pain starts coming back. The doc is busy w/ other patients (understandable), but when she comes back, says she'll rx amox. I explain, once again that she has a history of chronic strep that is very difficult to treat and tell her that our experience w/ amox is that the only thing it does is cause really bad vaginal yeast. She states very emphatically that amox is the abx of choice for strep infections and walks out of the room. When my husband asked about pain medication- she very quickly agreed to rx that. But....

When I went to the pharmacy to fill the scripts, she hadn't supplied the proper code (or something) for the pain med (vicoden) and the pharmacy tried calling 3x but could not get ahold of her. So, we're stuck here with ineffective abx (I am though, giving her daily azith instead of her regular every other day) and no pain meds- and she's just laying on the couch holding her head and whimpering. I decided to go see a nurse practitioner at her peds office on Friday morning who has been pretty decent with us in the past and hope for the best. This really sucks!

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I am so sorry. I'm not sure how things work at your pediatrician, or what your relationship is with him/her, but could you contact the on call pediatrician at your practice and explain the situation? I would imagine her file would clearly state what kind of abx she needs to be on for her condition. I never deal with the other docs in our practice either because they don't appreciate our history. The one time I did have to talk to one over the phone when we were out of town she ended up prescribing the wrong antibiotic even after I told her it was not effective for us. I talked to the head nurse and she got it all straightened out--but I had our pediatrician flag our file that he should always be called if there was a strep issue. They should be able to track down your doctor!

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Of course they can track down my doc- but there's a history of them being at odds w/ him over treatment of my daughter. I really don't want to cause any trouble for him because he has gone way beyond ordinary care for my daughter. Shame on these other docs for trying to interfere w/ him treating children that they do not wish to treat.

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Well, I called the emergency room myself and talked to the charge nurse who heard my daughter crying and whining in the background. She called the pharmacy and we should be getting what we need soon. This is godawful seeing my child in so much pain. I think this is more than a simple strep infection- so much pain that will not go away!

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She did finally calm and go to sleep last night. Looking for the silver lining- does it mean anything that she actually had bona fide strep symptoms? I mean, is this a sign that her immune system is working better?

 

One of the labs ran at the hospital was procalcitonin, which was elevated. Anybody know anything about that? Near as I can tell, its an indicator of sepsis. Could this be related to the tooth pulpectomy that was done at the beginning of November? Dental work always seems to kick off some kind of crap for her.

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Believe it or not Peg, I had Calcitonin on my list to ask the doctor to check on our next blood draw. Not because I have any idea what it means, but more because I keep going back to the high Camkinase II and the fact that it pulls Calcium. So I was thinking if my daughter had high Camkinase II, then she should have a high Calcium (her blood doesn't show this but her hair analysis does) , and a high Calcitonin (which works to lower Calcium) might give more proof of it.

 

What all this would mean, I don't know. But I was just hoping we could get a clearer picture of the mechanism going wrong in the body. If there truly is a misregulation of Calcium (I don't know that there is, I just suspect that there must be because of the Camkinase), then that could definitely be an area to isolate and aim treatment.

 

I hope I was expressing myself clearly on all that mechanism stuff and not being confusing.

 

I had no idea Calcitonin could indicate Sepsis. That's scary. I will definitely go back and research this to get a better picture of what's going on.

 

And lastly, I'm so happy to hear that Allie is doing better!!!!!

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Well, I called the emergency room myself and talked to the charge nurse who heard my daughter crying and whining in the background. She called the pharmacy and we should be getting what we need soon. This is godawful seeing my child in so much pain. I think this is more than a simple strep infection- so much pain that will not go away!

 

 

Just a thought...what if you were to tell them that she's allergic to amox in the future (if it ever happens again.) They won't argue with "allergies," and it's probably a whole lot easier than explaining in vain about ineffective abx. Again...just a thought.

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Just a thought...what if you were to tell them that she's allergic to amox in the future (if it ever happens again.) They won't argue with "allergies," and it's probably a whole lot easier than explaining in vain about ineffective abx. Again...just a thought.

 

Duh! Why didn't I think of that? I talked to her "person in charge" from school today, who said the same thing! You guys are geniuses!

 

We see the nurse practitioner tomorrow morning. I think this is more than just strep throat. I don't think I've ever seen this child so ill or in so much pain. Vicoden and NSAIDS all day, she either slept or held her head and moaned all day. When awake, she doesn't open her eyes- just a slit to barely see something. Was able to get some food into her so the meds wouldn't hurt her tummy.

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I agree Peg. Docs are so quick to call a penicillin allergy. When my girl was a baby she happen to get diaper rash while on amox and the doc said allergic. She totally isn't allergic. I forgot about it and she was on amox several times before someone brought it up again and said ..,..huh....I guess she isn't.

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Peg- Just wondering how Allie's night went and how you are doing as well. Hope you get some answers today!

Thank you for your concern!

 

We just got back from the NP. It was nice to hear the voice of sanity. She had reviewed Allie's chart before seeing us and has ordered a second procalcitonin measure, which is supposed to be done 24-30 hours after the 1st one to see if it is rising. Her concern is that Allie may have a port infection so we need to get a port culture, which we will do once the office calls back to tell us where we can get that done. She was surprised the ER doc had not done that. She did find that Allie has a sinus infection.

 

If the port is infected, we'll have to go inpatient and have the port surgically removed and get IV abx. If it is not infected then we'll switch from amox to clindamycin.

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So, it turns out that the ER doc did order a port culture, but it had been listed as a peripheral blood draw. As of today, that is negative (48 hours out) but they are doing the full 72 hour culture, so not for sure negative until tomorrow. Went to a regular lab for a procalcitonin draw (not through the port). Started the clindamycin today, and she started doing MUCH better this afternoon- eating like crazy and not so much pain.

 

We are supposed to give the clindamycin every 6 hours. Does that mean wake her in the middle of the night? And how do I get the probiotics into her w/ school? I guess I can use boulardii and give at the same time as the abx.

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Peg--

So sorry you and Allie have been going through this! My ds is on Clinda-- he has to have it as his primary/ongoing abx for now b/c it is the only thing that's kept his recurrent strep rash at bay. Our PANDAS doc has adjusted the dose and has him take it only 3 x a day instead of the recommended 4-- but he's also past the acute infection phase now. We've done the 4x/day abx with various family members in the past-- bit of a pain but you've gotta do what's you've gotta, right? As you mentioned, we can give the S. Boulardi at the same time as the Clinda, since it's a yeast not a probio. The probio is trickier when you have a 3-4 x/day abx regimen-- but we homeschool so have more flexibility on that front. What does she have for snack or lunch at school? Any chance you could mix probio into something she'll be having-- if that would be the appropriate timing and there's something she'll eat it can be mixed into? I'll sometimes stir it into applesauce, yogurts, smoothies, etc. Even being at home I time the kids doses around feeding if possible because I find it easier to manage with things combined on our schedule--fewer interruptions to our day and less likely to miss doses if given around feedings b/c no matter what we're doing in a day the kids still need to eat.

Sorry to report that when we did the 4x/day abxs in the past the docs did want us to wake for dosing sad.gif

Good luck and please keep us posted. Hope Allie continues to improve!

TH

Edited by thenmama
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