ChristusG Posted August 19, 2009 Share Posted August 19, 2009 I had been praying for ma23peas daughter after I read her post months ago about all the strange symptoms her daughter was having and the doctors could not figure it out. Here's the original thread, followed by two updates, for those who do not remember - http://www.welltrainedmind.com/forums/showthread.php?t=75707 http://www.welltrainedmind.com/forums/showthread.php?t=79938 http://www.welltrainedmind.com/forums/showthread.php?t=86354 I know some of you have probably been praying as well. I got a recent update from her and she gave me permission to update you guys as well. Here's what she wrote: We are scheduled to go to the Mayo Clinic in October, we went to Vanderbilt last week and I wanted to shoot the immunologist with anything...water gun would have worked. Eliza had her tonsils out in June after failing on 6 antibiotics for strep...I'm not sure when I last wrote on WTM..but she had her first positive strep March 1..she failed on omnicef, clindamycin, amoxil, zithrom..etc. We went to an ENT but he said her tonsils were fine....6 more weeks of strep and her tonsils were puss filled and huge...ENT said out they come and it will end our strep saga. We're now 8 weeks post op and she's tested positive for strep 3x...we've had penicillin shots, rocephin shots, and more amoxicillin...I begged the immunologist to just give her a round of IV antibiotics..she REFUSED saying she thinks that my daughter is a carrier...that's the phrase I get now, the problem is she is SYMPTOMATIC and ALL this stems from her infxn at Christmas...how in the world did her tonsils go from grade 1 to grade 4 in 10 weeks??? Since her tonsillectomy she has had daily abdominal pains, makes sense to me that with her tonsils gone, the strep is being swallowed down to her GI...she was scoped yesterday and he wants to put her on proton-pump inhibitors..also ignoring the positive streps..they ignore it because her fevers don't go over 100...ever since March they've been 99.1-99.9...she complains of sore throat, lethary, her pallor is pale with circles under her eyes, muscle weakness, muscle spasms, knee pain, chest pain..the ped/cards refuse to diagnose rheumatic fever b/c her migratory arthralgia in Jan/Feb never resulted in swollen/red joints...finally, I found a ped/card at Lebonheur who says 40% of his patients do not present with redness/swelling...so we see him in 2 weeks...it's just time for her to be well and live the life of a 10 year old. The Vanderbilt doc suggested that she was feigning it and/or needed a child psychologist to teach her how to handle the pain...I about flipped! Pain is a gift from God to let us know something is WRONG!! This child does not even flinch while being given penicillin/rocephin shots/IV's/having blood drawn, she took a bad fall off a horse a few years ago and her helmet CRACKED, she never cried but had a concussion! So when she is woken in the middle of the night with horrible abdominal cramping/muscle spasms in her legs, there is no amt of 'therapy' that can stop her pain...they need to find out what is CAUSING IT!! I so hope our experience is not repeated with other children...if it were only mandatory that they do a strep test on children who complain of sore throats before giving steroid only therapy...this all could have been prevented in my mind. God is good, we take each day as it comes and welcome the little blessings..He is going to use this somehow in her life...she is so empathetic and concerned about those who suffer...just wish she didn't have to! Quote Link to comment Share on other sites More sharing options...
Pink Fairy Posted August 19, 2009 Share Posted August 19, 2009 Thank you for sharing the update. I think about her every time I read one of those "diagnose this" threads. I will continue praying for her dd! Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted August 19, 2009 Share Posted August 19, 2009 Thanks for sharing. Please let her know that she is in our thoughts and prayers. How that poor little girl is suffering! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted August 19, 2009 Share Posted August 19, 2009 I hope that they can get a good caring doctor who will be able to help her NOW. :grouphug: Quote Link to comment Share on other sites More sharing options...
Sparkle Posted August 19, 2009 Share Posted August 19, 2009 Poor baby! How awful! I will be praying for her. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted August 19, 2009 Share Posted August 19, 2009 Thanks for the update. Prayers that Mayo gives some answers that makes more sense than Vandy did. That is a great hospital, but seriously bad advice! Prayers for complete recovery. Quote Link to comment Share on other sites More sharing options...
newlifemom Posted August 19, 2009 Share Posted August 19, 2009 Thanks. I was wondering how she had been. Will ramp up the prayers for her again. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted August 20, 2009 Share Posted August 20, 2009 Thanks for posting this for me! Have been unable to post for awhile and did not know when I could update....we see 2 docs in the next week and are hopeful one of them will have some answers...we are thankful for each and every prayer and just sitting with her on the bad days and telling her how many are going up for this to be resolved, makes her smile the most precious smile!! I will keep you informed!! Tara Quote Link to comment Share on other sites More sharing options...
Pink Fairy Posted August 20, 2009 Share Posted August 20, 2009 It's terrible that everything has to be so darn hard. Keep up the good fight, and force those docs to figure out what's going on. :grouphug:'s to you and your dd! Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted August 20, 2009 Share Posted August 20, 2009 I cannot believe you are still fighting with the doctors! I am so sorry for you and your DD. If you get desperate try this list of doctors. They are trained to listen to symptoms and listen to patients!! They also know how things can be sneaky and cause overall ill health symptoms. They test for parasites and mycoplasm. That is usually hard to get. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted August 20, 2009 Share Posted August 20, 2009 Thank you for updating. I've been wondering about your dd. Will continue to keep her in prayers. I hope she gets relief soon!! Quote Link to comment Share on other sites More sharing options...
ma23peas Posted August 21, 2009 Share Posted August 21, 2009 The ENT did another strep test and sensitivity test to see if we can pinpoint the best antibiotic for her...when he did a look see again at her throat he pointed out that some people have tonsular growths that actually reside at the back of the throat not on the sides...and that these tonsular growths can harbor strep..that they may have to be surgically removed...I was a bit upset at this, thinking he should have looked for those the FIRST time!! Now he's saying she may need more surgery??? What?? I just want the strep treated effectively...pray that this last test will reveal a good course of action! Thanks!! Tara Quote Link to comment Share on other sites More sharing options...
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