Help me help my daughter!

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ma23peas
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/7/2009 11:55 PM (GMT -7)   
We've been dealing with this since before Christmas...she is 9 years old and has been 'sick' for the past 6 weeks..pediatricians tried to write it off as post-viral and to 'wait it out'...I can't stand to see her weak and suffering any longer!

Started with a very bad sore throat...that night she woke up petrified b/c her throat had closed off....she was prone to croup as a youngster but had no episodes in the past 4 years. I took her outdoors to let the cool air help her breathe...all was well and she went back to bed...she woke up in the morning even more scared and her throat closing off more severely, I took her immediately to her pediatrician..I told him I thought it was odd for her to get croup at age 9..he did not test her for anything, just gave her a breathing treatment and an rx for prednisolone....ALL croup cases in the past get BETTER on steroids, not this infection..her throat closed off AGAIN 3 days later and it scared her and me...we went to ER...they did not test for Strep or anything else and just gave her MORE steroids (decadron)..she continued this way for 10 days...she could not play, she was wiped out (Christmas mind you) and she lost her voice, could not speak at all for about 6 days....finally, on about the 10th day it seems as though she's regaining her voice/energy..she has one day where she tries to get up and about and try out her new Christmas toys that she never had the energy to play with..she was scootering for about 30 minutes and just was weak...the next day she started complaining of fleeting pains..she said her legs felt like toothpicks and she could not stand up on them..she would just collapse...

I felt she must have overdone it on the scooter...but then the pains would be jumping...from her arm, to the side of her hand, to her foot, now after 6 weeks of this there is no part of her body they do not jump to other than her rear...no pains there...they last maybe 5-10 seconds and feel like a 'migraine' in that spot then move on...we've been to the cardiologist (she is extremely fatigued and her heart races when she tries to run..she feels like she can't catch her breath)..rheumatologist (he says since there is no redness or swelling it's not arthralgia)...neurologist (he says since they are fleeting pains they're not neuropathies)....now they're wanting to send us BACK to the rheumatologist to do a nerve conduction study (painful!)

ALL CBC's and Sed rates have come back normal, thyroid/diabetes/chem panel have come back normal...she had one ASO test (to test for previous strep infxn) that had values of <200...I argue this test b/c I've read the fact she was on steroids for so long would prevent her body from producing antibodies to the strep...also 1/2 the kids that DO have a positive culture show no values greater than 200 on their ASO 4 weeks later...they're running a lyme disease test/dnase B test for strep and 2 others that we won't know the answer to until Monday/Tuesday.

She ran a 102 fever this past Sunday and yesterday when they were pulling up her sleeve to draw the blood for the glucose testing we realized she had a bright red mini-red dot rash ALL over her arms/body/back/legs! It was hot to the touch but she didn't even know it was there that morning when seh dressed...her doctor is running an IGE test or something to test for Parvovirus antibodies...I do not think it is parvo (slap face) b/c she has no rash on her face at all...I firmly believe her body is fighting something and they've never once given her an antibiotic...I have had to fight for every test b/c they say it'll get better..she's suffering everyday with these pains 80-120 a day! Her eyes always look droopy, her coloring is pale and she just has 'sick eyes'...I'm her mother I KNOW she is battling something..

Please anyone who can help, please let me know what I need to ask them to run...her pediatrician said he would not mind admitting her to the children's hospital in B'ham to have a set of doctors review her case...but the infectious dis. docs are saying she probably needs to go to a pain clinic..huh? She has something that is CAUSING this, I am not going to dope my child up and have this not go away and just mask the symptoms...please anyone??

Perksie
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/8/2009 7:11 AM (GMT -7)   
It sounds like a virus has attacked her immune system. I think if you can successfully eliminate the virus, the pains will go.

Post Edited By Moderator (Ides) : 2/8/2009 6:27:44 PM (GMT-7)


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 2/8/2009 9:11 AM (GMT -7)   
I am soo sorry to hear of your daughters pain. I totally understand how hard it is to watch your little girl hurt soo badly and not be able to do anything to help or to take away her pain.  Sounds like she has a strong mom, one willing to fight for her though.  I am sorry Ido not have any answers for you....but know people here send ourprayers to your daughter.  Keep insisting on the doctors to actively work on your daughters case.  There is something obviously not right....did she maybe get bitten by something?  I think you said Lyme disease test? if not...maybe get one of those done too.
((gentle hugs)) I hope you get some  help in here, and by your doctors verysoon!  There are many people in this forum, with lots of knowledge...I hope someone can help.  Maybe post your thread in Chronic Pain....only because maybe someone there has felt the "jumping" pain there?

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 2/11/2009 7:47 AM (GMT -7)   
In addition to Lyme, she should be tested for Bartonella and the other tick borne coinfections. Also with a Lyme test, it is not accurate. Many MANY false negatives. You really have to go to a Lyme Literate medical dr (LLMD) to be sure. The Lyme forum can point you to someone in your area.

colleenrn
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/19/2009 9:45 AM (GMT -7)   
I am sorry to hear what you and your daughter are going through. I would say you have "waited it out" as the doctors termed it. I would insist they do a throat culture today (48-72 hour culture- not rapid) and begin antibiotics today, regardless of the culture results. What you have described (migratory pain, sore throat, lack of energy, etc..) sounds exactly like my daughter when she was younger and had prolonged, untreated strep (it went untreated b/c she would not get physical symptoms). Regardless of what a physician may tell you, you DO NOT need an elevated titer to diagnose strep throat. In fact, some people can have raging strep and a NORMAL titer (my daughter and many other kids I know). Doing a thoat culture with your daughter's symptoms is the first thing they should have done. The rash you described sounds like a scarlet fever rash, which would make perfect sense if she had strep. You can also have strep while showing normal CBC and sed rates.Anyway, good luck!
Colleen

bad genes
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 9:32 PM (GMT -7)   
TO LADY WITH THE 9  YEAR OLD.
WOW WE HAVE SO MUCH IN COMMON I TOO HAVE A VERY VERY SICK NINE YEAR  OLD DAUGHTER AND IT IS JUST KILLING ME WAITING FOR DIAGNOISES.  I EVEN HAD A DOCTOR SAY INGNORE IT. SHE HAS SUCH SEVER PAIN SHE SCREAMS AND SHAKES.  YOU CAN JUST SEE THE PAIN IN HER EYES AND THIS TOO ALL STARTED WITH A VIRIS.  AND SHE ALSO HAS HAD  3 WEEKS OF UNABLE TO HOLD HER OWN WEIGHT AND SHE NOW  SEVERAL TIMES A WEEK COLLASPES. I CANT HARDLY GET THROUGH A DAY SHE BREAKS MY HEART I FEEL SO HELPLESS
FROM DOCTOR TO DOCTOR AND LITTLE ANSWERS HERE AND THERE AND THEY BLOW IT OFF. HER WHOLE LIFE HAS STOPPED AS SHE ONCE KNEW IT. MAYBE OUR DAUGHTERS COULD BECOME EMAIL BUDDIES.  SOMETHING IN COMMON AND BEING SICK SO LONG SHE FEALS NO ONE UNDERSTANDS AND IF SHE GOT TO TALK TO SOMEONE HER AGE THAT WAS SICK GOING THROUGH SOME OF THE SAMETHING IT MIGHT HELP IT HAS BEEN  ALMOST FIVE MONTHS MY DAUGHTER HAS BEEN SICK AND STILL NO BREAK FROM THE PAIN.  ALSO FROM MY OWN EXPERIENCE AND MY DAUGHTERS,  THINK about THIS STERIODS CAUSES POTASIUM DEFICIENCY AND THAT CAUSES LEG PAIN AND LEG WEAKNESS AND STERIODS DUE HORRIABLE THINGS MY DAUGHTER HAS CUSHING SYNDROM THAT WE DO KNOW FROM STERIODS. AND THAT IS A NIGHTMARE.  ALSO.  THE THROAT CLOSEING MINE GETS THAT WAY IF I HAVE AN ALERGIAC REACTION TO SOMETHING AND BENADRAL IS MY LIFE LINE.  IT HAS SAVED MY LIFE.  PEOPLE CAN GET ALLERGIC TO THINGS AND IT CAN CAUSE YOUR THROAT TO CLOSE AND CAUSE A RASH AND CAN CAUSE MOUTH SORES OR CANKER SORES.  YOU CAN GET ONE OR ALL THESE THINGS WHEN ALLERGIC TO SOMETHING.  I CAN WALK BY SOMETHING I AM ALLERGIC TO AND MY THROAT WILL CLOSE.  IT TOOK ME THIRTY YEARS TO FIGURE OUT I WAS ALLERGIC TO TAP WATER DUE TO THE CHOLORINE IN IT.   IF YOU WANT TO EMAIL ME AND WE CAN TALK MORE AND MABE OUR DAUGHTERS COULD TALK AND WHILE THE WONDERFULL WORLD OF DOCTORS ARE TRYING TO FIGURE OUT WHAT IS WRONG WITH OUR SICK CHILDREN AND AS WE WATCH FEELING HOPELESSLY BY WE WILL BE ABLE TO HAVE SOMEONE WHO WE CAN RELATE TO.
HOW IRONIC THEY BOTH ARE NINE AND BOTH HAVE PAIN AND DOCTORS CANT FIGURE.   I DO KNOW MY DAUGHTER IS REALY HURTING AND REALY SICK AND I KNOW IT WOULD BE NEGLECT AND TOTALY IMPOSSIBLE TO IGNOR. HOW CRAZY IS THAT.  THIS WORLD IS MESSED UP MY DAUGHTES NEXT TEST IS GOING TO BE AN EMG. AND A TWENTY FOUR HOUR URINE AND A MRI ON HER UPPER BACK THE LOWER ONE CAME OUT IMFLAMATION IN HER SACROILIAC JOINT OF HER SPINE  AND DR. KNOWING  I HAVE ARTHRITIS AND LUPUS AND FATHER HAS ARTHRITIS AND TWO OF MY OTHER DAUGHTERS HAVE ARTHRITS THIS DOCTOR BLOWS OFF THE INFLAMATION BUT WERE GOING TO SEE A REME. SOON
SO IF INTERESTED AND WE CAN TALK FURTHER BECAUSE I HAVE SOME INFORMATION about YOUR DAUGHTER SYMPTOMS THAT MIGHT BE ABLE TO GER HER SOME RELIEF.
PLEASE EMAIL ME AT bcos7@comcast.net
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