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1267372 tn?1317831280

Help for my daughter

My 9yr old daughter started complaining of not feeling good on 2/22/10 - in the evening after homework you could tell all of a sudden she got sick was nauseated and tired.  Figured it was a bug or something she ate. Next 2 days she ran to the bathroom several times but never actually vomitted.  By Saturday pain in belly was so bad I took her to ER. They said she had a UTI and a little constipation.  Started antibiotics. Monday took her to follow up with pediatrician, he re-ran urinalysis and it was clear. Put her on miralax too. Still in major pain. Pain started in legs as well and was getting headaches and dizziness.  In her words pain is "like a ton of bricks with knives on the end." They've run blood tests, did and ultrasound and have found nothing. She did have some strep b and they put her on another round of antibiotics. A couple weeks later she started feeling like someone was electrocuting her. She sometimes feels her body is burning from the inside (no fever) and she takes off her socks and her feet are red and freezing to the touch. On Thursday night (4/1/10) we were eating dinner and when she finished and went to get up from the table, she couldn't. Said her legs felt wierd and hurt to put pressure on it. Gave her a bath to soak in. Next morning the same but eventually (while waiting for doctors to call back) she could put pressure on right leg and hop with help. Left knee swollen and big toe too, ice cold sometimes and it hurts to the touch sometimes.  
Docs say she has functional abdominal pain, but  shouldn't they do more tests (CT, or other) to determine anything else.  Also took her to dermatologist (long standing appointment for unrelated spider hemangiomas on cheeks). He actually listened to ALL her symptoms (pediactric GI only wanted to hear stomach complaints) and checked her over and saw/heard symptoms of lupus. She had malar rash in November before being diagnosed with mono.  ANA tests normal. Tylenol doesn't touch the pain and with stomach complaints can't give her ibuprofen. Oh she had been on zantac for a month - didn't help and now on prevacid.  She hasn't been to school since the day she got sick, nor has she been able to do gymnastics or dance. It hurts to sit too long and she's too dizzy.  She starts tutoring next week to catch her up (she goes to a small catholic school & they are providing a curriculum for her & she can attend school whenever she is up to even an hour - no pressure - she will make up her work in the summer).


This discussion is related to Having multiple problems at once, all connected maybe?.
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875426 tn?1325528416
Prozac for kids is a risky business.  The first so many weeks, it can actually worsen mood and they can even have suicidal thoughts... I believe they put the strongest black warning label because of this.  

If your child is feeling depressed, why not call the folks at Naturemade brand and ask if 200 mg of their Sam-E a day would be alright for someone of her age.  It's over the counter and something your body is already supposed to make anyway, but sometimes things get messed up and your body needs more than it's producing.  Also, foods that might help with her mood that have omega fatty acids might be something you want to try with her- for instance, macadamia nuts, walnuts, pumpkin seeds, freshwater fish, such as salmon and tuna and flaxseed (you can put this in pancakes with the flaxseed meal).  Omega fatty acids are also good for inflammation.
I have dysautonomia myself.  I have experienced in the past where my knees and feet will get red, but the knees felt like oven bricks.  I was told I had "episodic arthritis" and the rheumatologist felt it could be induced by stress.  His suggestion was ibuprofen but at least one of the times it happened, I was taking ibuprofen already.   But I have postural orthostatic tachycardia syndrome, irritable bowel syndrome, migraine headaches, etc..  I hope the autonomic clinic won't overlook other possibilities.  
Helpful - 0
1267372 tn?1317831280
They discovered the strep doing the standard test they do for strep throat - throat swab. Rapid was negative but it cultured beta strep. I am getting new doctors. I have found a neurologist in St. Louis who treats people with autonomic dysfunction and I emailed him with her symptoms and such and he believes I may be on the right track. He does not treat children but he is contacting a pediatric neurologist to coordinate diagnostic testing and consultation.
He doesn't think its in her head either...btw, I took her to her pediatrician yesterday and he wanted to put her on prozac to lift her mood. We refused...she needs something for the pain.
Helpful - 0
875426 tn?1325528416
So they messed up the sample in the first place and didn't have her do another then?  Because that's what happens when a sample sits that long outside a refrigerator, it's messed up.  If you ever get in that situation again, you got to fight for your loved one and make sure they pick up the sample within a half hour of it first being in the cup.  Go and hound them at the nursing desk.  You may sense I've been in ERs a lot.  Re: your first statement- so the culture came back of the crummy sample as negative, but they had her finish the antibiotic anyway?  If they re-tested two days into taking the antibiotic, that sample wouldn't have been any good either because the antibiotic was in her system to kill any bacteria they might have found.

How did they discover the strep?  I'd be doing research on better doctors, even if I had to travel a ways to get to them.  Obviously swelling in a leg and big toe at times ice cold to the touch are not just "in her head" and don't have to do with her gastrointestinal system.  
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1267372 tn?1317831280
The UTI was clear two days after the antibiotics were started. The sample sat with us in the ER for hours before they took it to the lab. I think it was contaminated because it didn't culture anything nor did subsequent tests.  I don't think they have checked blood iron or anything. They've done CBCs and metabolic panels and tested for celiac disease, stool samples for parasites, and all has come back normal. I don't think they have done IVP. They have not looked for a cause in her spine nor a brain scan and they haven't refered her to a neurologist.  No thyroid function tested or cortisol testing that I am aware of, but I haven't gotten my hands on the last round of blood tests they ran at pediatric gastroenterology.  But they say everything is normal so it must be functional abdominal pain and in her head, something must be causing depression and anxiety about going back to school.  I say bull..got that covered. She is being tutored privately the rest of the year...no worries.  ugh...somethiing is wrong and the doctors are too ignorant to help apparently.
Helpful - 0
875426 tn?1325528416
Did they ever follow up after the second round of antibiotics to see if she was clear of infection?  What blood tests other than ANA were run?  Have they checked blood iron and calculated GFR to see how the kidneys are functioning?  The ultrasound- was it of the kidneys?  Did they run an IVP?   Have they looked for a cause in her spine, since her legs were feeling weird to put pressure on it, she's having coldness to touch in lower extremity & it hurts her to sit too long?  What about a brain scan?  Have they bothered to refer her to a neurologist?  What about thyroid function testing and cortisol testing?
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