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Requesting Prayers


peglem

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Thank you all for your prayers. Her ped and I want the sores (head injury from banging?) biopsied because we're wondering if the banging comes from "something" in/under the skin or if the banging is just causing the sores and preventing healing. So...she's off abx in preparation for that (if there is something there, we want the stuff growing!). Anyway, her migraine's went away with clindamycin, but now w/ no abx they are coming back and she's having a very tough time. I just don't know how we're going to get her into that hospital to get the imaging done. She feels so lousy. I feel lousy too. What kind of a mommy withholds treatment that will make her child feel better so that doctors can collect evidence? I know this ultimately may bear some important fruit, but it sure is hard watching your child suffer in the interim. I'm also going to have to nix the ibuprofen the night before because one of the things being checked is basal ganglia inflammation.

I watch for your posts because you are one of the most amazing moms that I have ever met. I know you'd do anything to keep her feeling well, and I know what courage it takes to keep looking for answers. Will be thinking of you - and hope whatever you find, helps her feel better in the end. I have always wondered about the head banging in a lot of kids. What could motivate that? It's such a common symptom, so it must be motivated by something - or relieve something. Good luck!

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Thanks again for all the prayers and support. But, let me just scream in utter frustration here...AAAAAARRRRRRGGGGHH!!

Everything went well- got Allie ready to go (which is so smooth when you don't need to feed her!). Only took 20 minutes or so to get her into the building and back to waiting room #1. We checked in and allowed her to exhaust freak-out #1. Then called back to waiting room #2- working our way through freakout #2, and the "take you back to the next area" lady asked if she needed to be sedated...uh, yeah! So, anesthesia was not on the MRI order, and the anesthesiologist is booked solid and will not be able to fit us in. Not only that, none of the specialists had ordered their parts of the tests-so only the MRI had been ordered. So we rescheduled for Friday and I get to spend the rest of the day making calls to make sure that Friday is set up properly. On the bright side...maybe Friday will go smoother now that we've practiced!

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Thanks again for all the prayers and support. But, let me just scream in utter frustration here...AAAAAARRRRRRGGGGHH!!

Everything went well- got Allie ready to go (which is so smooth when you don't need to feed her!). Only took 20 minutes or so to get her into the building and back to waiting room #1. We checked in and allowed her to exhaust freak-out #1. Then called back to waiting room #2- working our way through freakout #2, and the "take you back to the next area" lady asked if she needed to be sedated...uh, yeah! So, anesthesia was not on the MRI order, and the anesthesiologist is booked solid and will not be able to fit us in. Not only that, none of the specialists had ordered their parts of the tests-so only the MRI had been ordered. So we rescheduled for Friday and I get to spend the rest of the day making calls to make sure that Friday is set up properly. On the bright side...maybe Friday will go smoother now that we've practiced!

 

My daughter is scheduled for an MRI on the 23rd (if we can rid of the active strep inf), so I will make sure they have her down for general at the MRI dept too (thanks for the reminder, sorry it was such a pain for you guys).

 

I will keep you in my thoughts and prayers for Friday.

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  • 2 weeks later...

Well, got her through the MRI. Dermdoc did the biopsy on her sores- she thought it would turn up something because it turns out there was some pus in there, but so far the culture for bacteria/fungal is negative. They did not do contrast like they were supposed to for the MRI, but found an "inflammatory polyp" in her left maxillary sinus. Her ped says this is very likely the cause of her photophobia and pressing on her eyes when she gets a headache. So we're off to the ENT this Friday.

So, I did what turned out to be a stupid thing. We stopped abx for 11 days prior to the procedure because we didn't want it to interfere w/ wound culture growth. Well, Allie seemed to be doing okay, so I decided to see how she'd do off abx and did not start them back up again. Allie started a bad flair on Wednesday- the demon possessed kind. So now we're back on rifampin/omnicef and prednisone. Just started yesterday evening, and actually she's much better this AM. Yesterday afternoon, it took @ 20 minutes to get her from her doc's waiting room to the exam room- all the while she's pushing back and slugging, biting, trying to flee.

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Peg- y'know I think the jury is still out on whether these kids really need to be on daily abx- so I wouldn't say you did a stupid thing. She could have flared while on the abx- who knows- I assume it has happened before. I currently wonder, are we better off the abx, and then using them for flare ups. When they are on the abx daily- does their body get used to them, and do they not work then for a flare up?

 

This is not scientific, just my thoughts, for what they are worth. However, we have had a MUCH better year this year off, or only 2x/week, antibiotics (daily during a rough patch)- than the previous two years on daily abx.

 

Anyway Peg- at least you are ruling in/out things, and moving forward.....

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Well, got her through the MRI. Dermdoc did the biopsy on her sores- she thought it would turn up something because it turns out there was some pus in there, but so far the culture for bacteria/fungal is negative. They did not do contrast like they were supposed to for the MRI, but found an "inflammatory polyp" in her left maxillary sinus. Her ped says this is very likely the cause of her photophobia and pressing on her eyes when she gets a headache. So we're off to the ENT this Friday.

So, I did what turned out to be a stupid thing. We stopped abx for 11 days prior to the procedure because we didn't want it to interfere w/ wound culture growth. Well, Allie seemed to be doing okay, so I decided to see how she'd do off abx and did not start them back up again. Allie started a bad flair on Wednesday- the demon possessed kind. So now we're back on rifampin/omnicef and prednisone. Just started yesterday evening, and actually she's much better this AM. Yesterday afternoon, it took @ 20 minutes to get her from her doc's waiting room to the exam room- all the while she's pushing back and slugging, biting, trying to flee.

 

It was not a stupid thing in my opinion Peg. Isn't the goal to get her off all the meds you possibly can in the future? You cannot predict how she will react as you attempt to remove a med from her therapy, you simply must try and see what happens.

 

If you never try, she will never get off any meds, and since you do not have a magic crystal ball to inform you of the outcome without the risk--you just have to go with your gut; HOWEVER, if you find a magic crystal ball that lets you know the outcomes, please do let me know where you got it or better yet just buy two and I will gladly and expediently repay you any cost you incur to get it--I promise :lol: !!!! And see, now you have it writing, that is a contract is it not?

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Thank you all for your prayers. Her ped and I want the sores (head injury from banging?) biopsied because we're wondering if the banging comes from "something" in/under the skin or if the banging is just causing the sores and preventing healing. So...she's off abx in preparation for that (if there is something there, we want the stuff growing!). Anyway, her migraine's went away with clindamycin, but now w/ no abx they are coming back and she's having a very tough time. I just don't know how we're going to get her into that hospital to get the imaging done. She feels so lousy. I feel lousy too. What kind of a mommy withholds treatment that will make her child feel better so that doctors can collect evidence? I know this ultimately may bear some important fruit, but it sure is hard watching your child suffer in the interim. I'm also going to have to nix the ibuprofen the night before because one of the things being checked is basal ganglia inflammation.

 

oh, can she take something like imitrex for migraines? (maybe not enough time to try, if the tests are Monday)

 

Sending good thoughts to you and your dd!

I've used it the last few days as migraine rescue, but she has been on naproxen/ibuprofen when the migraine's hit. I'll bring some to the hospital for after. We have very limited supplies of imitrex nasal spray. I think I can dope her up on valium the morning of (again, feeling like a bad mommy) so at least she will respond less aggressively to the pain.

 

Have you tried the imitrex pills? that's what I have, they work well.

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Mayzoo, did you end up getting the MRI on Thurs, and how'd that go?

We've actually gotten Allie off all psych meds. Maybe I'll try going off abx again after this polyp/cyst thing in her sinuses is taken care of. Its just that when she flares, its really, really bad- she and her family get pretty beat up, and I'm not just talking emotionally beat up.

 

Eamom- the only imitrex we have is the nasal spray cartridge. When it does work, it does so very quickly.

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