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Author Topic: Mini update  (Read 62284 times)

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Offline minismom

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  • Quocumque jeceris stabit
Mini update
« on: January 06, 2009, 08:07:28 AM »
Some of you already know that December has been very rough for Mini healthwise.  Monday, December 8th, she woke up with 105 fever.  I took her in and she had double pneumonia (her 10th), strep throat, and a sinus infection.  Her O2-sturation was 85% and her respirations were 24 (high).  She was put on a host of meds and sent home. 

On Wednesday, 10th, I took her back for a scheduled follow-up.  She seemed to be doing much better.  Her O2-saturation was up to 98% and her respirations were down to 21.  It looked like she was bouncing back very well. 

After spending most of Thursday, 11th, in tears with an earache and me erroneously thinking it was from sinus pressure, we were back at the doctor on Friday, 12th.  She had a bulging ear infection - caught despite the fact she was on an antibiotic.  Her antibiotic was changed and, again, we were sent home.

Just before New Year's, she began complaining that she was dizzy and felt like she was going to fall over.  She wasn't running a fever and was eating fine, so again I figured it was sinus stuff.  However, on Monday, December 29th, she laid in bed saying that if she sat up she would get dizzy and sick to her stomach.  So, off we went again to the doctor.  This time, double ear infections - caught early.  She's now on her 3rd round of antibiotics due to end Thursday.

She's not had a bought like this since going undetectable.  She's had her share of runny noses and "normal" kid stuff, but not like this - constant and unrelenting.  I've called her PID to see about getting her labs done early (not scheduled until March) but she's yet to call back.  I'll not go into my shear aggrivation and frustration - you've all heard it before.

So, after 4 doctor's visits in 3wks, and explaining that Zerit is NOT a diabetic medicaion, here we are. If once off this round of antibiotics she gets another ear infection, I'll forego her PID and move straight to her ENT to talk about putting tubes back in. 

Mum
« Last Edit: January 06, 2009, 08:10:08 AM by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline cjc

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  • Posts: 1,011
  • Sweet Girl
Re: Mini update
« Reply #1 on: January 06, 2009, 08:16:30 AM »
 Bless her heart, I hope things get better for her soon. You take such good care of her, It must be really frustrating for her to be so sick despite all  care you give. I hate it when Robert has a ear infection, sometimes a warm washcloth applied to the ear helps ease it a little.  Hope this round of antibiotics helps. Best of luck to you all. Cristy

Offline Jody

  • Member
  • Posts: 1,829
Re: Mini update
« Reply #2 on: January 06, 2009, 08:26:29 AM »
I'll have fingers and toes crossed and sending all my blessings to Mini for a speedy recovery.  Get well soon Mini !!!

Jody :(
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline RAB

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  • Joined March 2003
Re: Mini update
« Reply #3 on: January 06, 2009, 08:33:38 AM »
Hey Mum

I'll do the same as Jody.  Tell the princess that we're all sending positive healthy vibes her way to aid her quick recovery.

RAB 

Offline RapidRod

  • Member
  • Posts: 15,288
Re: Mini update
« Reply #4 on: January 06, 2009, 08:43:21 AM »
Sorry to hear that Mini is having a tough time. I would have to agree with you on the tubes. Best thing I ever had done. Keep us updated.

Offline komnaes

  • Member
  • Posts: 1,893
Re: Mini update
« Reply #5 on: January 06, 2009, 08:49:40 AM »
Just accept a cyberhug Minimum, and a bigger one to Mini.

You both are in my thoughts..
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Mouse

  • Member
  • Posts: 1,463
  • Om nom nom.
Re: Mini update
« Reply #6 on: January 06, 2009, 10:02:09 AM »
Ugh, I can't imagine how frustrating this must be for you. Just reading about it gave me a headache.

Get well soon, Mini! Ear infections are the worst.  :[

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Mini update
« Reply #7 on: January 06, 2009, 10:19:29 AM »
Dear Mum, I'm so very sorry to hear that Mini is still dealing with these things after we talked about the first go around via PM's.  I think I would totally do the ENT route if it was me.  Please keep us posted and I'm wishing BOTH of you the best.

David
"I’ve slept with enough men to know that I’m not gay"

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Mini update
« Reply #8 on: January 06, 2009, 11:00:22 AM »
Dear Mum

Sorry to hear Mini is having such a hard time.  Is there any way to get the PID and the ENT to confer?

Hope things get better
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline YaKaMein

  • Member
  • Posts: 368
Re: Mini update
« Reply #9 on: January 06, 2009, 12:09:13 PM »
Hey Mom & Mini,
You're both in my thoughts right now. Maybe a big bowl of ice cream with a crumbled chocolate chip cookie on top will do some good. May not cure the ear infection or the pain ... but bring on a big smile. Hugs to you both right now. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline pozniceguy

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  • Posts: 1,181
  • Niceguy Dallas
Re: Mini update
« Reply #10 on: January 06, 2009, 03:19:47 PM »
So sorry for the problems princess is having...I wish there were a magic wand  or another tiara that would make her better...but for now just accept all the love, hugs and kisses from one of her "guys"......

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline minismom

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  • Posts: 2,608
  • Quocumque jeceris stabit
Re: Mini update
« Reply #11 on: January 06, 2009, 05:02:50 PM »
Thank you all so much for the kind words and well wishes.

Our youngest goes to the ENT the 13th of this month, and it will include a discussion about putting tubes back in Mim.  She had tubes put in Sept. 10th, 2001 (just after her 1st birthday) because of the same situation: ear infections, antibiotics, finish the round, another infection.  After 3mths of this, they put her on antibiotics until her surgery - 30 days. 

We've talked to her about tubes and she said as long as she's asleep, never has to eat yogurt again, and can get a kids' meal after, then it's fine with her. 

She'll finish this round on Thursday and we'll see what happens.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Robert

  • Member
  • Posts: 2,646
Re: Mini update
« Reply #12 on: January 07, 2009, 01:47:30 AM »

hi mini

hi mom.

I'm so sorry to hear this. Like I said before, it breaks my heart.  Go see the ENT guy and get this fixed.  My prayers are with you.

robert
..........

Offline Veritee

  • Member
  • Posts: 180
    • Post Natal Illness Support
Re: Mini update
« Reply #13 on: January 07, 2009, 07:16:56 AM »
So sorry mum - All I can say is I hope she is better soon and love and best wishes to you all from me

Veritee
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline Texan38

  • Member
  • Posts: 686
Re: Mini update
« Reply #14 on: January 07, 2009, 08:08:56 AM »
Hi Mum!

Well wishes and a Texas size hug is being sent to you, your family and precious mini.  :-*
In Hollywood an equitable divorce settlement means each party getting fifty per cent of publicity.
~ Lauren Bacall

Offline AlanBama

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  • Posts: 3,639
  • Alabama: the 'other' 3rd World Country!
Re: Mini update
« Reply #15 on: January 07, 2009, 04:53:42 PM »
My best wishes for a full and speedy recovery go out to our littlest angel.   Mini honey, I know what it's like when your ears make you dizzy.  I hate it.

It is so frustrating trying to get the help you need......hope things improve.

love & hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline franfrog

  • Member
  • Posts: 238
Re: Mini update
« Reply #16 on: January 07, 2009, 05:24:36 PM »
Minismom
I am wishing Mini a speedy recovery.  My daughter has had the tubes done 3 times now.  Luckily it is quick but she should wear earplugs anytime she hits water after it.  Good luck and watch with those antibiotics, they stained my daughters teeth. :-\
7/05 diagnosis cd4- 52 vl -?
08/05 cd4-299 vl-1900
10/05 cd4-249 vl-349
12/05 cd4-349 vl-52
03/06 cd4-454 vl-<50
06/06 cd4-508 vl-<50

Offline anniebc

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  • Posts: 5,942
  • AM member since 2003
Re: Mini update
« Reply #17 on: January 08, 2009, 01:49:03 AM »
Big hugs from Blackjack, King Elrond, Lady Lucy and their Mum...get well soon.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

tendai

  • Guest
Re: Mini update
« Reply #18 on: January 08, 2009, 05:13:22 AM »
Mum, i hope Mini gets well soon..

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Mini update
« Reply #19 on: January 08, 2009, 06:14:13 AM »
Tell her that if she doesn't want to eat her yogurt then I'll take it.

I hope she's feeling better soon.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Ric Wilke

  • Member
  • Posts: 573
  • I joined AIDSmed.com 10/2002.
Re: Mini update
« Reply #20 on: January 08, 2009, 10:23:07 AM »
Hi Mini,

We are sorry to hear what you are going through.  We know that you will listen to what your Mum tells you.  We also know that you are a true fighter.  If anyone can get the upper hand on this it's you, Little Princess.

All our love with lots of hugs and kisses, Ric & Thom

PS - Hang in there Mum.
« Last Edit: January 08, 2009, 10:27:37 AM by Ric Wilke »

Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Mini update
« Reply #21 on: January 08, 2009, 10:33:47 AM »
Hey Mum,

What a terrible time Mini has been having. I agree with you and the others, tubes should be considered.

Give Mini a great big hug from her bald uncle. Oh, and Mum, have a hug for yourself as well!

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Mini update
« Reply #22 on: January 09, 2009, 05:24:20 AM »
I'm so sorry to read about everything poor Mini and you are going through.   

Sounds like she is letting you off easy if all she wants is to be asleep and a kids meal.   She needs to work on her guilt skills.   :D

Mc Donald's parfait (fruit with yogurt) is pretty tasty.  Breyers (like the ice cream) yogurt is good too, and I'm not the worlds biggest fan of yogurt but eat because GI doc makes me. 

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: Mini update
« Reply #23 on: January 09, 2009, 09:01:08 AM »
You all are so sweet!  I read your posts to Mim yesterday and she said, "wow, I must have a lot of friends." :)

We had 3 inches of snow on the ground yesterday and we let her go outside.  It was her first venture in a month and cabin fever was setting in.  She had a great time, but paid the toll later.  She came in, took a bath, ate a bowl of cereal, and was sound asleep before 8pm.  Then, by 5:45am this morning, she was up and full of energy.  I'm bracing for crankipuss later.

Today is the 1st day off her antibiotics.  We'll be watching her closely for the next while (forever) to make sure she doesn't develope anything further.  I called the ENT and he said it was fine to bring her in when our yougest goes next Tuesday.  Not sure if he'll do tubes yet, but he'll be fore-warned that they are a big possibility.

Thank you all again for your prayers, warm wishes, thoughts, and encouragement.  It means a lot to us all.

Mum

Andy, she is a very practical child (mostly) and has learned to take everything in stride.  She doesn't fight us about going to the doctor, blood work (she LIKES it!).  She gets tired of all the "extra" meds which are liquid and nasty.  Can't blame her there.  Believe me, she doesn't have to play the guilt card -I feel guitly enough.
« Last Edit: January 09, 2009, 09:06:18 AM by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Mini update
« Reply #24 on: January 10, 2009, 03:12:13 PM »
I'm glad to hear see had a fun romp in the snow ... snowing like crazy here now Indiana (heading your way).

Practical and cute ... what more can you ask for! 

The Breyers yogurt is called Yocrunch and it has all different kinds of toppings from M&Ms to granola.  Yocrunch.com

Liquid medicine = nasty.   That was the only good thing about having a feeding tube I could just poor that stuff right in and avoid my taste buds altogether.

Good luck with next Tuesday,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline red_Dragon888

  • Member
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  • Love and Be Love in Return
Re: Mini update
« Reply #25 on: January 10, 2009, 10:22:45 PM »
Get well Soon Mini.



[attachment deleted by admin]
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: Mini update
« Reply #26 on: January 11, 2009, 06:10:41 AM »
Well, here's the latest in a nutshell:

Hubby: How are you feeling, sweetheart? 
Mim: Ok, I guess. Well, not really.
Hubby: Are you still dizzy?
Mim: yes.
Hubby: Does your throat still hurt?
Mim: yes.
Hubby: Do you need mum to take you to the doctor?
Mim: NO!

So, there you have it :P  We'll watch her close, but I'm going to hold off taking her in again until her ENT appointment. My mom said that they may have to do a culture of her ear to see what kind of infection she has and to determine the correct med to put her on.  I'm going to mention it to the ENT.

Of course, if she spikes a fever, she's going straight away - whether she wants to or not.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline red_Dragon888

  • Member
  • Posts: 2,811
  • Love and Be Love in Return
Re: Mini update
« Reply #27 on: January 11, 2009, 09:25:18 AM »
She is truly "Positively Beautiful."  Get well soon young one.
« Last Edit: January 11, 2009, 09:27:23 AM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: Mini update
« Reply #28 on: January 18, 2009, 06:25:42 AM »
Quick update.  Mim has been off of her last round of antibiotics for 10 days.  She complains that she's dizzy, but no more ear infections (yet)  The appointment at the ENT was miserable and unproductive.  He's on my replacement list.  Suffice it to say that he wouldn't even look at her and told us to take it up with Doc. >:(

When we go back to Doc in March, I'm going to request a re-referral to her neurologist.  She hasn't had an EEG in nearly 5 years (maybe 6?) and she needs one.  Some of her earlier ones showed deep brain seizures. We were told she'd outgrow them and there was nothing that could be done about them.  However, we have been noticing starring spells where she blanks out on us.  Coupled with the constant dizziness, that seems now unrelated to ear infections (or at least not 100% related), I'd feel better with an EEG.  I have called Doc to get the referral early, but of course, you all know how that goes.

She is a mystery and an anomoly, but one way or another, we're going to get this figured out.

Mum (who will be accompanied by Hubby in March to ensure that I'm not escorted out by security. 
          Especially after the incident involving the afore-mentioned ENT)
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Mini update
« Reply #29 on: January 18, 2009, 06:35:27 AM »
Thanks for the update and tell her we all are thinking about her and hoping she'll be better soon.

It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline next2u

  • Member
  • Posts: 1,762
Re: Mini update
« Reply #30 on: January 19, 2009, 12:37:34 AM »
definitely keep us updated. here is a big ol hug for you & mini : )
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Jeffreyj

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  • Posts: 1,403
Re: Mini update
« Reply #31 on: January 19, 2009, 02:18:14 AM »
I hope she is doing better the poor sweet thing! Did you say she was on ZERIT? Most of my Dr's are against that, they blame zerit and DDI for my bad case of neuropothy. I hate to cause you any more trouble , but I have heard nothing but bad things about zerit for the past 20 years or so. God bless. I hope she gets well already!
Positive since 1985

Seadickrun

  • Guest
Re: Mini update
« Reply #32 on: January 19, 2009, 03:53:41 AM »
I am very very sorry to hear about Mini's troubles and I feel guilty complaining about my life after hearing about her issues.  She's much tougher than I could hope to be and please tell her that I think she is very brave - I am scared of needles and hate to get blood draws.

Reading about her ear infections gave me a crazy thought.  My ex-wife's brother had the same chronic ear/sinus problems all through his childhood and went through so many antibiotics that he was running out of options.  When he got to college a dentist yanked out his wisdom teeth and all of his ear/sinus issues went away.  So he called my ex and told her to do the same (she had similar problems but not as bad) and had the same great results. 

Now, I am NOT suggesting that we yank a child's teeth to solve ear/sinus problems but I wonder if a dentist might think that some kind of mouthwash at night might have a similar beneficial value without the invasiveness of surgery.  Perhaps you can talk to a dentist or perhaps we have one here in the forums that could weigh in on my crazy thought. 

And as for that ENT, I would report that one to a department of health and immediately replace them with someone who has the slightest compassion for your child's serious health issues.  That one sounds too bothered to do their job.  It would have taken less time to look in Mini's ears than to discuss it and I would have wanted to cover my bases as a doctor just to make sure that I wasn't missing something. 

Offline minismom

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Re: Mini update
« Reply #33 on: January 19, 2009, 08:16:37 AM »
Sea, my child is wired crooked..lol.  She LOVES having her bloodwork done.  We have to go up to the doctor's office to get "pretty" bandaides, because the lab only has ugly ones.  Then, after a ride back down in the elevator,  she hands her papers to the lab receptionist, asks how everyone is doing, and sits down.  When they call her name, she goes in, without me :(, tells them which arm to take it out of, jumps down from the chair, tells everyone bye, and away we go.  I'm a different story.  I break out in sweats, my heart rate jumps, and I have to lay down because I gray out.  I'm a chicken when it comes to needles and avoid them at all costs.

Jeffery, you have no idea what great issues I have with Zerit.  I sent you a PM to explain our Zerit journey. 

She is brave, indeed, and had no problem expressing her feelings about the ENT who wouldn't even look in her ears.  But, she took in stride and was glad that she at least got a Happy Meal out of it (with apple slices - no carmel sauce - and 1% chocolate milk - no fries or pop)

Mum
*edited because I forgot my name..lol
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Offline minismom

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Re: Mini update
« Reply #34 on: January 25, 2009, 07:17:53 AM »
Just a real quick note.  Mini woke up this morning asking if I can take her to the doctor - her ears are hurting again.  I'll call the clinic today and see if they can get her in this afternoon.  If not, I know they can see her tomorrow at 7am.  the appointment will be followed by a VERY NASTY letter to the ENT and Doc.

I'll let you know what happens.

Mum
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Ann

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Re: Mini update
« Reply #35 on: January 25, 2009, 07:33:03 AM »
Oh Mum, that just sucks! 

I'm starting to think a few nasty letters to your state medical board wouldn't go amiss either.

Or at the very least, a few sticks of dynamite delivered to the ENT via FedEx.

Please give Mini a hug and a "hope you feel better soon" from me.

And a hug for you too.

Ann
xxx
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Offline red_Dragon888

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Re: Mini update
« Reply #36 on: January 25, 2009, 08:28:52 AM »
xoxoxoxo
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Offline minismom

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Re: Mini update
« Reply #37 on: January 26, 2009, 11:20:22 AM »
Just home from yet another visit to the clinic.  Same old story: double ear infections and strep'
(again >:()  The doctor talked with me for about 20 minutes and the office is going to make a referral to 2 different ENTs.  They should call by this afternoon to let me know when the appointments are.  2 referrals were made so that I could interview and choose which one I liked.  Yes, that is supposed to be explained to them.

The doctor did make an idiotic mistake for which she will be forgiven - this time only.  She gave Mim a Rx for a round of antibiotics with a refill.  I was told to finish this round, wait 5 days, then fill the next round and complete it.  This should keep her infection-free long enough for us to get into the ENT.  I SPECIFICALLY asked if each round was 10 days so that Mim would be on a 25 day round.  She said yes.  Well, she was wrong.  Each round is only 5 days, for a total of 15 days, not 25.  Also, this is the med that I told her I didn't want because 5 days doesn't work and usually allows something else to slip in underneath it (like the pneumonia in December).  If Mim does well, then all will be fine and forgiven.  If not, she'll be the next to get a nasty phone call. 

 On the way over, she asked if this time they would put tubes in her ears.  I told her not this time, just more medicine and yogurt.  She asked when someone was going to do something.  I had to tell her that I didn't know but I'd make sure they listened this time.  Next on the agenda, another call to Doc that I'm certain will go unanswered.

Mum
www.watoto.com
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline aztecan

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Re: Mini update
« Reply #38 on: January 26, 2009, 11:41:45 AM »
Mum,

That really sucks.  >:(

Let mini know that I am keeping her in my thoughts and will send lots of happy  - and healing - energy her way.

Give her a hug for me too.

BIG HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline pozniceguy

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Re: Mini update
« Reply #39 on: January 26, 2009, 12:14:42 PM »
so sorry to hear about the continuous issues with the ears..I really relate to that problem I have had ear problems since 5 yrs old.....been through the tubes..every possible med both oral and shots....to this day I use specially formulated drops that are prepared by a compounding pharmacy..  I hope she and you find some relief soon.....

all my best thought and well wishes to you both

Nick
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Offline PeteNYNJ

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Re: Mini update
« Reply #40 on: January 27, 2009, 10:49:15 AM »
give mini a big hug for me :)

Offline BT65

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Re: Mini update
« Reply #41 on: January 27, 2009, 01:58:21 PM »
Oh dear, mum.  I usually look for your posts in our women's forum and find out about Mini there.  I'm glad I clicked on your thread here.  Please give Mini a huge hug and kiss from me and tell her she's got something coming in the mail (I'm mailing it today). :)
  Luv, hugs and kisses,
Betty (and Poppy)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline minismom

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Re: Mini update
« Reply #42 on: January 28, 2009, 09:01:50 AM »
Headaches and ears still hurt.  I had to put numbing drops in her ears last night so she could sleep.  The tears were pouring and there was not much else I could do.  We have 6 inches of ice-covered snow and reports tell us to stay home.  I put in a call to see if they'd change her antibiotic to whatever it was that she had 2 times ago.  It's the only thing that seemed to work.  I also asked that a note be put in her file NOT to give her this antibiotic again - it never works.  Yes, I feel properly stupid for not recognizing the name of the med and insisting on a different one when we were there on Monday.  These tears could've been avoided.  (yep, Mikie, guilt)

Here we go...again (still, never ending  :-\)

Mum (who's just this side of discouraged)
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
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Offline minismom

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Re: Mini update
« Reply #43 on: January 30, 2009, 06:00:47 PM »
Ask me if I'm pissed >:(  Never mind, I'll just tell you - I'm thoroughly, totally, unequivocably PISSED OFF!

I called the clinic yesterday to see about changing Mini's antibiotic.  They called back today and are now REFUSING to write her another prescription.  The nurse said that they have written her 3 prescriptions for antibiotics in a month and won't write her any more.  I tried to explain that I'm not technically asking for a 4th round, I'm asking them to change her 3rd round because they gave her meds that WON'T WORK!  I don't understand why they won't switch it considering the doc wanted to put her on a 25 day round this time. >:( 

WOULD THE DECENT DOCTORS WHO DON'T HAVE A GOD COMPLEX AND WHO ARE WILLING TO LISTEN AND ACKNOWLEDGE THAT AS HER PARENT, I KNOW MIM BEST - PLEASE STEP FORWARD!!

Why is this so difficult?  Seriously, am I the one who's out of her mind here?  Am I being impossible to work with?  I truly don't get it.

On an upswing, I called the ENTs that got our referral Monday.  Guess what.  You got it - the lady said that she had a huge stack of referrals on her desk and hasn't gotten around to any of them.  I told her that this was her lucky day because she can pull Mim's referral and make the appointment right now.  That will leave her 10 whole seconds to do whatever she wants later.  The doctor is fitting us in at 1:30 on Monday (my birthday - maybe I'll get the gift of a decent doc).  But, I was warned that he has surgery in the morning and so I'll have to wait but "we close at 4, so he'll see you before then".  If he doesn't, at least I have one more ENT to interview. ;D

Other than that, not much more to report.  Her ears feel better, but her head has never stopped hurting.  We're giving her Ibuprofin but I'm afraid she has a sinus infection and nothing to give her until Monday.  This seriously sucks!!

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Robert

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Re: Mini update
« Reply #44 on: January 31, 2009, 02:15:05 AM »

...  Her ears feel better, but her head has never stopped hurting....   This seriously sucks!!
Mum

Aw mum...now my head hurts.

Not to put any more pressure on you or mini but once mini starts feeling better, I know all of us here on the boards will feel better too.

give her a kiss for me.

robert
..........

Offline minismom

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Re: Mini update
« Reply #45 on: February 03, 2009, 08:09:54 AM »
I wish I had better news.  We traversed through an ice / snow mix into town for Mim's appointment only to be told by the receptionist that the doctor was stuck in surgery and wouldn't be in the office for at least 2 more hours.  Needless to say, we left.  I was angry, at first, but I'd like to think that if he was in surgery with Mim, he'd take his time with her and not rush to get back to the office.

Anyway, we have another appointment for tomorrow afternoon.  Mim was upset because she REALLY wants to have surgery and feel better.  But, again, nothing I could do but drive home and promise we'd try again Wednesday.

Mum
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"Whichever way you throw me, i will stand"
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Offline pozguy75

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Re: Mini update
« Reply #46 on: February 03, 2009, 12:04:59 PM »
Wow, Mum, this sucks!!

Give Mini a big for me, ok??

Mini, get well soon honey!
Dx 2005
ATRIPLA

Offline minismom

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Re: Mini update
« Reply #47 on: February 04, 2009, 06:33:56 PM »
The good news is: WE LOVE DOCTOR DANIEL!!!!!!!!!!! ;D

Mini's tempanogram and hearing test came back normal.  So, no residual side-effects of the infections.  Her ear drums are healthy, so no problems there.  Her nasal passages are swollen, so we have Astepro spray to use 2x/day.

When I asked him about her constant headaches and dizziness, he did some testing to see if she had a form of vertigo.  He didn't seem to think she did, but noticed that she couldn't track his fingers with just her eyes.  His fingers went to the left, and her eyes went to the right.  Mini said she didn't know what was wrong with her eyes or why they weren't doing what she wanted them to do.  YIKES!

On the 17th, she goes back to have a VNC.  Basically, they put hot and cold water in her ear then make her dizzy.  We were warned about the possibility of projectile vomitting during the 90 minute test.  This is supposed to test her vestibular system and further test for vertigo.  She'll see Doc Daniel the 18th.

He listened, he responded, and he didn't treat me like I was an idiot.  I told him that as long as he remained on my good side, I'd have 5 other kids to add to his patient roster.

Thanks for your well wishes, positive thoughts, and support.
Mum
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline RapidRod

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Re: Mini update
« Reply #48 on: February 04, 2009, 06:39:25 PM »
Mum, does Mini have her eyes tested regularly? I go in once a year for them to check my eyes because of HIV. I don't have to have them to put cold in my ears to make me puke, just mention it and I can do it. As long as they have to clean it up it wouldn't bother me.  ;)

Offline minismom

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Re: Mini update
« Reply #49 on: February 05, 2009, 06:51:26 AM »
Rod, she goes to an eye specialist (who happens to be her PID's husband) every 6mths for an eye exam.  He dilates her eyes every visit to make sure they're healthy not only because of her HIV but because of her diabetes as well.  She goes back the end of June and I'll ask about her tracking.  He's never done the tracking test with her - but he's going to start ;).

We'll have the VNC results before she sees her PID on March 6th.  I'm still going to ask for a neuro referral for an updated EEG.  I'm still convinced that this is related to her 8+ years (and counting) on Zerit.

Mum
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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