ma23peas Posted February 2, 2009 Share Posted February 2, 2009 I'm bordering on losing my cool with doctors and screaming for someone to help...I'm so tired of researching the possibilities, isn't that the doctors' job? I wrote about 4 weeks ago, my daughter came down with an unusual infection that was very similar to croup...her throat closed off and she couldn't get air/swallow..her ped treated it as if it were croup and the inhaled steroid seemed to get her out of their office able to breathe again (all is good, we've had many cases of croup with her, but all between the ages of 6 weeks and 5 years, she's 9 now, thought she had outgrown it)...well, by the 3rd day of steroids her throat closed AGAIN this time to the ER...they AGAIN treated it as croup (no tests for strep/other) and gave her decadron on top of the prednisolone (not to mention the steroid they put in her inhaler in day one)...and it enabled her to speak again (she'd lost her voice)...but for the remaining 5 days she consistently had throat tightening and had NO energy (mind you this is Christmas and you can't keep this active child down on a rainy day!)...her throat never completely closed off but it continued to give her trouble and scared her and me a few times..to me, this was NOT croup...or if it was something else was going on...she could not speak for the last 5 days of the 10 day ordeal...FINALLY, that seemed to clear up and she had 1/2 a day of energy..she really wanted to play with her Christmas toys (never had) and that wore her out..the next day, she complained of pains here and there...then they started coming more often and jumping...wrist/arm/knee/foot..sometimes in joints, sometimes on the back of her hand or on her thigh...just all over... FAST FORWARD 5 weeks.. 1. Mono test, negative 2. ASO Strep, <200 (I contest this b/c due to the steroids she was on if she did have strep her antibodies would be low, further studies show that 40% of kids with strep never have antibodies over 200 therefore they would all fail the strep test although they had it) 3. Pediatric Rheumatologist ruled out rheumatoid arthritis, agrees the steroids could have covered up what really was affecting her..inhibiting her body to fight it...now we may have peripheral nerve damage...did a chest x-ray, 4 throat x-rays, no anomalies...and more blood work (2nd round of CBC/sed rate) 4. Pediatric Cardiologist..ruled out rheumatic fever, ekg/ultrasound all good 5. Her pediatrician (1 of 5 in the group) said it's probably viral and to call him in 4 weeks...yeah, right, he doesn't see my 9 yold fading before my eyes! The pain, the crying "I hate my life".."Make it stop"..mind you the pains are not debilitating, just about 80-100 per day and a 4 on a scale of 1-10..just annoying as all get out and she can't run 10 yards without stopping for breath, her heart jumps out of her chest if she tries to run...I'm just not seeing the link b/w neuropathy and the lethargy...one doctor tried to assert that it was anxiety causing her not to be able to breathe from the endless pain...I may not have completed medical school, but I think I can confidently say it is physiological not anxiety...she will be completely happy and want to play and she physically can't. I've tried the "wait and see" approach..nothing has changed..in fact she's more sick 'looking' and tired...I took her with me to a horse show in TN today, thinking the distraction would serve her well..she clung to me and I sat there and rubbed her 'pains' for about 3 hours...they jump constantly. Last week, about to lose my cool, I called back to the ped and said this 'wait and see' thing was no good, I wanted her medical test results and I wanted a second opinion...they had another of the 5 docs call me back and he wants her to see a pediatric neurologist...(mind you, the other doc who keeps telling me she looks 'fine' had already consulted with the ped neuro and she told him there was nothing they could do for her and to give her neurontin...sorry, no neurontin to mask what's going on with her...we need to find out the cause and help her!) So I told doc #2 what doc #1 had told me and he said that particular neuro only treated seizure patients and he wants me to see another one in the group...I consented and they sent all our files over last Wednesday, I called the group hoping we could get in by Friday, but they said they had to review the tests and get back to me..no call. Tonight she's running her first fever in all this (101.6) and it's scaring me...who the heck do I call? A pediatric immunologist? Her pediatricians have pretty much written her off as a 'she stumped me case' and say we need to see docs who see the weird stuff....I don't think it's all that weird, I think she either had strep/mono/some strong virus that attacks the throat and the steroids kept her body from being able to fight it...NO ANTIBIOTICS through any of this (mind you, my kids between all three have had less than 5 antibiotics in all their lives combined!) I can not seem to find a pediatric immunologist in Huntsville..I will drive to Nashville/B'ham or even Memphis (Dad is having surgery in Memphis..figured we could try to get into St. Jude with someone) but with her fever I'm scared now.... Sorry, guys, I have exhausted all my searches of what it could be and no they've never tested her for tick fever although I told them she had a bite on her knee that itched badly for a day..no discoloration or rings though...I've read about an ELISA test that will test for a variety of antibodies present in the system..I'm just not sure what else to request! Thanks so much! Tara Quote Link to comment Share on other sites More sharing options...
sweetsouthern Posted February 2, 2009 Share Posted February 2, 2009 aww i have no idea... but i did have a sort of similar health situation with my oldest dd when she was bewteen 1 and 5 :( all i can say is docs dont know everything... but keep trying and searching cause one of them finally will! (took me 4 years!) if it worries you in any way, i would take her to er and demand they admit her... all these tests and blood work and docs can be called in there... and at least they can monitor her for 2 days while this happens! hugs and prayers! Quote Link to comment Share on other sites More sharing options...
teamturner Posted February 2, 2009 Share Posted February 2, 2009 This is just off the top of my head, but did anyone check to see if this is asthma related? Some of the symptoms you describe are some that a friend of mine's had and her dd as related to their asthma. Also, perhaps she had a bad reaction to the steroids?? I'm just guessing here and I have NO medical background. I pray that someone finds out what it is and can help your dd. :grouphug: for you and your dd. I'm so sorry! Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 2, 2009 Author Share Posted February 2, 2009 I'm going to be up awhile trying to find docs/answers...I'll check in to see if something clicks with one of you savvy moms! She has a history of asthma...we have our own nebulizer and have dealt with more serious asthma with my son, her asthma was all related to colds...never on sustained preventative medicine, just acute incidents...no asthma for her the past 2 years, even with this case, they said her lungs were clear and open... They had checked her 02 stats and she's always at 98%..very good...they haven't checked in the past 2 weeks b/c I've been on a run around with wait and see and scheduling the neuro visit...but with my experience with asthma, it's not the same thing..she feels as if she just can't get air through her throat as if it's closing off again...the rheumatoid doc thought she might have some structural anomaly to explain the number of croup (probably 10 between 6 weeks and 5) cases she had....but nothing showed up according to him but her docs have not seen the x-rays... Trying to find similar cases online...still looking... Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted February 2, 2009 Share Posted February 2, 2009 Personally I would find a children's hospital and take her to the ER. A children's hospital is more likely to be able to pinpoint what is going on. I will pm you. Quote Link to comment Share on other sites More sharing options...
elise1mds Posted February 2, 2009 Share Posted February 2, 2009 I'd check with either an immunologist or a hematologist. Somebody has to have an answer somewhere, and I hope they find it soon because if I was in your shoes, I'd be scared to death. One of my friends has an autoimmune disorder that has gone undiagnosed until just this year - she's 27 - because every doctor had always assumed she just had horrible allergies. I hope you're able to get answers soon. :grouphug: Quote Link to comment Share on other sites More sharing options...
Laurie Posted February 2, 2009 Share Posted February 2, 2009 No medical background here, so FWIW: Why haven't the doctors tested her for Lyme Disease? It seems to me that it shouldn't be so difficult to test for it, especially given all the other tests they've been willing to put her through. I'm so sorry your dd is having such a hard time, and I know how painful this is for you as her mom. I'll be praying for you and your dd, and for a doctor who can figure out what's going on ASAP! :grouphug: Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 2, 2009 Author Share Posted February 2, 2009 I am frustrated with them on several levels...opinion and "in our experience"... the reason they haven't tested for lyme is because they say her symptoms are not in line with a lyme infection...or what is typically seen...so they won't do it.. The ER doc also told me definitively that an ASO test of <200 means no strep of ANY kind could have caused this...took me less than 2 hours to find out that the ASO only tests for Strep A and that with children, some can have 4x the number of antibodies and still have a value of under 200...and that if the child had been on steroids that would have inhibited their values...so no, a value of <200 does not definitively mean no strep. Then I was told that strep rarely if ever occurs with croup...well, duh...took me less time to find the contrary...I'm trying my best to haul in my antipathy to their answers right now while trying to deal with my daughter's suffering...I look at them and ask with questioning eyes "What virus lasts 7 weeks?"....I've been around 100's of children (nanny, youth volunteer etc.) and never have I seen a virus last 7 weeks...they just tell me she'll get better on her own. AAGH! Tara Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted February 2, 2009 Share Posted February 2, 2009 I have no idea how to deal with whatever it is that your daughter has. BUT you need to find a doctor who will listen to you. Call any Mommy friends you have and get names of their children's doctors. Then call them and see if they can give you a second (or third or fourth!) opinion. You are absolutely right that this is going on too long and is too strange. Your daughter and you are worth figuring out what is going on. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 2, 2009 Author Share Posted February 2, 2009 I have found a pediatric-virologist-immunologist in B'ham that I'm going to call tomorrow..please pray they can see her asap! Thanks! Tara Quote Link to comment Share on other sites More sharing options...
joannqn Posted February 2, 2009 Share Posted February 2, 2009 It sounds like you are going through a horrible ordeal. I really feel for you. I'm sorry it is happening. I know how hard it is to watch a child suffer with a possible life-threatening illness. I have no ideas about what could be causing it. If it was my child and I thought _________ was a possibility, I would demand, not request, demand the test. Period. I'm not leaving until I get this test. If it's negative, no harm done. If it's positive, then she benefits. If you refuse to do nothing and there's temporary or permanent damage because something goes undiagnosed and untreated, you WILL be held responsible. Then keep a record of every appt, every discussion, every refused test/treatment, every result. I would flat out tell them that I know they are full of it about the <200 means it can't be any kind of strep because I researched it myself and found that to be untrue. If I thought that it was a definite possibility that antibiotics might help, I would make them convince me that they would be harmful before I left without the prescription. I wouldn't yell or curse but I'd be firm and stubborn and even angry, if I needed to be. Get second opinions. Go over their head to supervisors. Do what you need to do to get your daughter cared for. Just ask the respiratory therapists and nurses at our local children's hospital about their experience with my son as a patient. I really do insist my opinion and parental authority be respected...and I tell you they heard about it when I wasn't pleased with their mistakes. Quote Link to comment Share on other sites More sharing options...
newlifemom Posted February 2, 2009 Share Posted February 2, 2009 Tara, My family and I have been thinking and praying for you and your daughter. I was kind of hoping no news is good news. We will ramp up our prayers for you. I wish I could offer more substantive help, but I can't. I wish you well. My daughter in particular has been very concerned. Keep fighting. Have you thought about non-traditional approaches? I don't know much, just a thought. Take care and try to get some rest. Quote Link to comment Share on other sites More sharing options...
Aggie Posted February 2, 2009 Share Posted February 2, 2009 Oh, Tara...this sounds horrible! I just can't imagine going this long without a dx. Do you think it *might* be a food allergy? Or any other allergy....did you get a new plant? New pet? I would push for the Lyme's titer and consider taking her to St Jude's. Y'all are still in my prayers. Keep us posted.:grouphug: Quote Link to comment Share on other sites More sharing options...
PollyOR Posted February 2, 2009 Share Posted February 2, 2009 In your research, you may have already read this http://en.wikipedia.org/wiki/Lyme_disease . I would push for the test for Lyme disease to rule it out. If it is Lyme disease the sooner they treat her the better. I hope you get some answers tomorrow, or at least feel that they are on your side! Quote Link to comment Share on other sites More sharing options...
LNC Posted February 2, 2009 Share Posted February 2, 2009 (edited) From your original post I would go to a children's hospital and insist on a bronchoscopy to find the structural issue causing the severe croup. With her losing her voice, I'm guessing laryngomalacia (usually found when a baby but still worth a look)- which decadron helps during a crisis. For the neuropathic pain I would insist on a brain mri to look for a post viral neurological problem like ADEM. I'm not trying to diagnose or worry you, but there is more to look for. I'll pray for you! Edited February 3, 2009 by LNC Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted February 2, 2009 Share Posted February 2, 2009 As the Mom of a 12 year old with year long mystery symptoms, I understand your frustration and the same words keep coming out of my dd's mouth. It is horrid and I have no words of wisdom except to keep trying. We are finally going to a pediatric immunology, pulmonary and asthma center on the 13th after dealing with this for almost a year with our own Dr. It is so hard. Hang in there and keep us posted. We will be praying for you. Did anyone wonder if the throat thing was perhaps angioedema? And did they check her IGE while she was symptomatic? Not that it would help perhaps, but it might help rule more things out. Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted February 2, 2009 Share Posted February 2, 2009 that I am so sorry that you all are dealing with this, and assure you that we are praying for you. Especially that God will direct you to the right doctors and give them wisdom as they work with her. :grouphug: Quote Link to comment Share on other sites More sharing options...
JudoMom Posted February 2, 2009 Share Posted February 2, 2009 I'm bordering on losing my cool with doctors and screaming for someone to help...I'm so tired of researching the possibilities, isn't that the doctors' job? I wrote about 4 weeks ago, my daughter came down with an unusual infection that was very similar to croup...her throat closed off and she couldn't get air/swallow..her ped treated it as if it were croup and the inhaled steroid seemed to get her out of their office able to breathe again (all is good, we've had many cases of croup with her, but all between the ages of 6 weeks and 5 years, she's 9 now, thought she had outgrown it)...well, by the 3rd day of steroids her throat closed AGAIN this time to the ER...they AGAIN treated it as croup (no tests for strep/other) and gave her decadron on top of the prednisolone (not to mention the steroid they put in her inhaler in day one)...and it enabled her to speak again (she'd lost her voice)...but for the remaining 5 days she consistently had throat tightening and had NO energy (mind you this is Christmas and you can't keep this active child down on a rainy day!)...her throat never completely closed off but it continued to give her trouble and scared her and me a few times..to me, this was NOT croup...or if it was something else was going on...she could not speak for the last 5 days of the 10 day ordeal...FINALLY, that seemed to clear up and she had 1/2 a day of energy..she really wanted to play with her Christmas toys (never had) and that wore her out..the next day, she complained of pains here and there...then they started coming more often and jumping...wrist/arm/knee/foot..sometimes in joints, sometimes on the back of her hand or on her thigh...just all over... FAST FORWARD 5 weeks.. 1. Mono test, negative 2. ASO Strep, <200 (I contest this b/c due to the steroids she was on if she did have strep her antibodies would be low, further studies show that 40% of kids with strep never have antibodies over 200 therefore they would all fail the strep test although they had it) 3. Pediatric Rheumatologist ruled out rheumatoid arthritis, agrees the steroids could have covered up what really was affecting her..inhibiting her body to fight it...now we may have peripheral nerve damage...did a chest x-ray, 4 throat x-rays, no anomalies...and more blood work (2nd round of CBC/sed rate) 4. Pediatric Cardiologist..ruled out rheumatic fever, ekg/ultrasound all good 5. Her pediatrician (1 of 5 in the group) said it's probably viral and to call him in 4 weeks...yeah, right, he doesn't see my 9 yold fading before my eyes! The pain, the crying "I hate my life".."Make it stop"..mind you the pains are not debilitating, just about 80-100 per day and a 4 on a scale of 1-10..just annoying as all get out and she can't run 10 yards without stopping for breath, her heart jumps out of her chest if she tries to run...I'm just not seeing the link b/w neuropathy and the lethargy...one doctor tried to assert that it was anxiety causing her not to be able to breathe from the endless pain...I may not have completed medical school, but I think I can confidently say it is physiological not anxiety...she will be completely happy and want to play and she physically can't. I've tried the "wait and see" approach..nothing has changed..in fact she's more sick 'looking' and tired...I took her with me to a horse show in TN today, thinking the distraction would serve her well..she clung to me and I sat there and rubbed her 'pains' for about 3 hours...they jump constantly. Last week, about to lose my cool, I called back to the ped and said this 'wait and see' thing was no good, I wanted her medical test results and I wanted a second opinion...they had another of the 5 docs call me back and he wants her to see a pediatric neurologist...(mind you, the other doc who keeps telling me she looks 'fine' had already consulted with the ped neuro and she told him there was nothing they could do for her and to give her neurontin...sorry, no neurontin to mask what's going on with her...we need to find out the cause and help her!) So I told doc #2 what doc #1 had told me and he said that particular neuro only treated seizure patients and he wants me to see another one in the group...I consented and they sent all our files over last Wednesday, I called the group hoping we could get in by Friday, but they said they had to review the tests and get back to me..no call. Tonight she's running her first fever in all this (101.6) and it's scaring me...who the heck do I call? A pediatric immunologist? Her pediatricians have pretty much written her off as a 'she stumped me case' and say we need to see docs who see the weird stuff....I don't think it's all that weird, I think she either had strep/mono/some strong virus that attacks the throat and the steroids kept her body from being able to fight it...NO ANTIBIOTICS through any of this (mind you, my kids between all three have had less than 5 antibiotics in all their lives combined!) I can not seem to find a pediatric immunologist in Huntsville..I will drive to Nashville/B'ham or even Memphis (Dad is having surgery in Memphis..figured we could try to get into St. Jude with someone) but with her fever I'm scared now.... Sorry, guys, I have exhausted all my searches of what it could be and no they've never tested her for tick fever although I told them she had a bite on her knee that itched badly for a day..no discoloration or rings though...I've read about an ELISA test that will test for a variety of antibodies present in the system..I'm just not sure what else to request! Thanks so much! Tara :grouphug::grouphug::grouphug: I've been in a similar situation with ds6 (it took us 2 years to get a dx) and it is so very scary and exhausting (and we had fabulous doctors on our side). I would demand she get a test for Lymes. They can also run a test for Epstein Barr Virus (which is the virus that causes mono). I would also strongly consider asking for a (possibly extended) course of antibiotics, since this is not going away on it's own. :grouphug::grouphug::grouphug: I pray you get answers soon, or at the very least a doctor who will advcate for your dd. I'm so sorry. 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jplain Posted February 2, 2009 Share Posted February 2, 2009 Yep, Lyme testing asap, because of the migrating pains and fever. I'd insist that they add other tick-borne pathogens as well, because some of the others have very similar symptoms. Contrary to popular belief, a bullseye rash is NOT required for Lyme disease, and in children the rash is very often absent. It can be hard to convince a doctor to do testing in an area not known for Lyme disease. But that doesn't mean people aren't acquiring it. It just means it isn't being diagnosed. :glare: Quote Link to comment Share on other sites More sharing options...
unsinkable Posted February 2, 2009 Share Posted February 2, 2009 I have no answers but I'll pray for you all. I'm really sorry. Quote Link to comment Share on other sites More sharing options...
lmrich Posted February 2, 2009 Share Posted February 2, 2009 We will be praying for you as well. In my situation (not so scary only lasted a week), I found that being calm in the doctor's office worked the best. I also asked if we could go into the doctor's office not the patient exam room to talk about treatment/test options. I prayed before talking to the doctor to help me get centered and to help me listen better. I wrote down everything the doctor said and even asked her to spell certain tests. When we were in the hospital, I found that the pediatric nurse was incredibly helpful, she could describe each test with remarkable details. Good luck and know that you are not alone. Quote Link to comment Share on other sites More sharing options...
KristenS Posted February 2, 2009 Share Posted February 2, 2009 Tara, is she seeing a pulmonologist for the asthma? There are pediatric pulmonologists in Huntsville. They seem pretty good, though my sister had some issues with their treatment of her daughter (whose asthma was FAR more severe than anyone ever caught on, till the family moved and had to get a new doctor who figured out the problem). I do hope you find out what's going on! That sounds horribly scary. If you need the pulmonologist group, send me a PM and I'll find their information for you. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted February 2, 2009 Share Posted February 2, 2009 I'd check for Lymes too or EBV and the full strep. Poor kiddo, and you...prayers.:grouphug: :grouphug::grouphug::grouphug: I've been in a similar situation with ds6 (it took us 2 years to get a dx) and it is so very scary and exhausting (and we had fabulous doctors on our side). I would demand she get a test for Lymes. They can also run a test for Epstein Barr Virus (which is the virus that causes mono). I would also strongly consider asking for a (possibly extended) course of antibiotics, since this is not going away on it's own. :grouphug::grouphug::grouphug: I pray you get answers soon, or at the very least a doctor who will advcate for your dd. I'm so sorry. Quote Link to comment Share on other sites More sharing options...
5knights3maidens Posted February 2, 2009 Share Posted February 2, 2009 Call your children's hospital pronto. I just did this for my older dd and we are going Wednesday. I'm tired of going to drs. back and forth and they don't know what to do. I called the children's hospital and they gave me an appointment right away. My dd is actually excited because she knows they will not give up on her. Quote Link to comment Share on other sites More sharing options...
Cindy in the NH Woods Posted February 2, 2009 Share Posted February 2, 2009 Your dd's symptoms sound like fibromyalgia, or a related disorder. This is a "mom diagnosis", and by no means professional. I know someone who finally got a good diagnosis from a specialist in Charlotte, NC. I'm not sure how scholarly this website is, but its list of symptoms seemed to fit many of your poor little girl's. http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html I am asking the Lord for mercy, healing, and peace for your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted February 3, 2009 Share Posted February 3, 2009 I'm just going to second keeping the lyme idea in the back of your head in case nothing else pans out. Lyme is known to cause a variety of weird symptoms. The joint pains are particularly common. If you do investigate this, make sure you get a lyme-literate doctor. Lisa Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted February 3, 2009 Share Posted February 3, 2009 :grouphug::grouphug::grouphug: I couldn't read and not post. My ds has had something like this for a VERY long time. He's been tested for everything - mono, lymes, cancer, etc, etc, etc. Still nothing. And, just to confuse all of us even more, he'll get better!!! I start to get comfortable again. Then, the aches and pains and fevers start to return. It's awful. My ds has been well for about 8 months now. I'm watching this thread . . . Quote Link to comment Share on other sites More sharing options...
woolybear Posted February 3, 2009 Share Posted February 3, 2009 I' m sure this could be something else, but I would second, third, or fourth or whatever, the suggestion for testing for Lyme disease. The Elisa test, however, is not always conclusive (though most doctors will tell you otherwise). A negative Elisa test does not mean there is no Lyme. There is a test called the Western Blot, which is more sensitive and accurate. Especially since you know she had a tick bite, I would check it out. I am not sure about Lyme doctors where you are, but we are up in Ct. and there is a good Lyme pediatric dr. here. While in his office, we have met people from Tennesee, North Carolina and other places around the country. My point is that these people have felt the need to travel to find help. I hope, first of all, that it is not Lyme, but if it is,I hope you can find someone local. If you do get a positive result, even from an Elisa test, you need someone who knows how to treat this. Most average pediatricians do not. If you go this route and you have more questions, you can IM me. I'd be happy to answer any questions. I know how hard it can be to see your child suffering and not have answers. I will keep your family in my thoughts. Good luck on your search. Quote Link to comment Share on other sites More sharing options...
MJN Posted February 3, 2009 Share Posted February 3, 2009 answers by now. If you can get to a Children's Hospital, I'd go that route. I'd also find a Lyme - literate doctor to run a Lyme's test on her, if the Children's Hospital won't. I think it's worth the trip out of town to get her to the Children's Hospital. I've heard nothing but good things about them. I'm battling my own health battle right now, and that will remind me to pray for you and your child. God is with us! He will not leave us, he promised. Hugs and prayers, Molly Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 3, 2009 Author Share Posted February 3, 2009 Thank you ALL for your support and encouragement!! It means the world! I am not certain she had a tick bite...I had seen a tick on my horse's mane (not attached just loose that I flicked off in early December, it's the first tick I've seen on our farm in a year) I just thought it was odd b/c we've had a very cool start to winter...she had a bump on her knee that was raised about the size of half an english pea that itched like crazy for a day, then it went away with no problems...she had no other complaints... I haven't seen a pulmonologist b/c her chest x-ray the rheumatologist did came clear and her 02 stats are always very good..docs hear good sounds...today she's had more smiles and even skipped..but then she'll be back to tired and the pains will have her grabbing her foot/her knee/her calf/her arm...today she complained quite a bit about head pains, they're not headaches but these same pains that only last 15 seconds but are strong and hit at her forehead, the back of her neck and one by her eyebrow.. I am VERY interested in any others who have had similar symptoms and they come/go...I surely don't want this to do that...I just have been blessed to have had very little need for doctors and could fix all the hurts with good ole momma care...it's frustrating not to be able to do that for her..but she did laugh a bit when she looked at me with tears coming up and grabbing her foot and saying, "Mommy, please make it stop." I went right to her foot and grabbed her heel where it was hurting and scolded that pain with the most consternation I could muster...she was taken aback for a second, I told her, "it's about time we treat pain with pain, if that pain wants to hurt your heel, then let's give him some of his own medicine!" So she shouted at her heel and it actually went away (of course, I knew it would they only last 10-15 seconds!! :) but to her it was magic...:) I got the blood tests today from her ped's office, the only test I don't have results for is the ANA...not sure what that is for, assuming a rheumatological test..will call back on that one in the am....but everything looked normal, even the monocytes that one doctor said had been raised..seeing the ped neuro on Thursday...I went to our pediatric ER TWICE with all this and both times they said 'viral' and sent me home..one time on decadron the other with a prescription for naprosyn which of course is aleve and I had that at home..they were the ones who said <200 ASO means absolutely no strep..I may still try to call St. Jude tomorrow, but I'm going to wait and see if the neuro has any answers or can run the lyme test while he does whatever other panels he wants... We will find out the answers I hope and hopefully save someone else from this! Thank you so much! Tara Quote Link to comment Share on other sites More sharing options...
MJN Posted February 3, 2009 Share Posted February 3, 2009 who is being treated for Lyme's disease. Her children are now beginning to be treated. I have heard all the same complaints you have listed in your posts. Not all from the same person, but the same ones. The key though is you MUST find a Lyme' disease literate doctor and they are hard to find, thus the suggestion for the Children's Hospital. I know there is a children's lyme literate doctor in PA if you are interested, I'll ask my friend his name. She's seeing a lyme literate doctor in Raleigh, NC, who is willing to see her children also. He's opening a new satelite office about two hours east from Raleigh in the near future because he's seeing so much Lyme's disease in the south. HTH! PM if you need more info. I'm not on here much anymore. Blessings, Molly Quote Link to comment Share on other sites More sharing options...
Blessedfamily Posted February 3, 2009 Share Posted February 3, 2009 I don't know what to say. I'm so sorry your dear child is going through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
MBH Posted February 3, 2009 Share Posted February 3, 2009 Your dd's symptoms sound like fibromyalgia, or a related disorder. This is a "mom diagnosis", and by no means professional. I know someone who finally got a good diagnosis from a specialist in Charlotte, NC. I'm not sure how scholarly this website is, but its list of symptoms seemed to fit many of your poor little girl's. http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html I am asking the Lord for mercy, healing, and peace for your family. :grouphug: I have a friend who has fibromyalgia, the pain travels in different parts of her body. Another friend's daughter was allergic to bananas, her throat was swollen so much that she could not breath and had to go to ER. I'll be praying for you. Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted February 3, 2009 Share Posted February 3, 2009 It also sounds to me like it could be Lyme. But there is active hostility in the mainstream medical community against doctors who treat Lyme, and many doctors toe the party line and deny that it even exists or can't just be cured by a week or two of antibiotics, either because they believe it or because they're too scared not too - some doctors are being actively persecuted. Anyway, this site can give references to an LLMD (Lyme-literate MD) in your area - at least if they say it's not Lyme you can believe it, and if it is, you can get her treatment. Since Lyme is treatable, moreso if caught early, it's worth ruling out (and others are right that the tests are notoriously unreliable, so a negative test alone does not rule it out). Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 6, 2009 Author Share Posted February 6, 2009 Thanks for the site!! I asked the ped. neuro. to please add it to his panel of tests he's doing (Diabetes/thyroid/lyme/chem) tomorrow..I printed out 4 pages about Lyme..and my sister-n-law said her mother tested negative for lyme 4x before the fifth finally came back positive..praying that's not the case for our dd....ped. neuro feels it is not neurological...he says neuropathy classically starts in the feet and goes up and does not 'migrate'...while we were in his office she had 10 pains (in about 20 minutes)..she's having one now while I'm writing this...aagh! He wants to do a nerve conductivity test but I do not believe it is neurological...I firmly believe this is infection based, esp. after her 102 fever on Sunday...no fever since then. I called her ped and asked if he would contact an infectious disease doc...confirmed with St. Jude that they're mostly focused on cancer...the tests so far don't point to that..so we're just trying more options...we've tried to live as normal a schedule as we can with this but today she made me drive past her gymnastics..she LOVES gymnastics but she was having a pain in her head that went to her foot and started crying so we had to pass up gym today...this is NOT what a 9 year old should have to go through..and ATLEAST this doctor realized she was SICK...he asked us if the other doctors all thought she was "fine" b/c their tests all come back normal...he could tell she was wiped out and could not tolerate this much more...I tried to call the inf. dis. doctor in B'ham..but his office would give me no info unless my ped made the appt...I'm really focusing on hoping one of these tests shows something, atleast we're still ruling things out. But these blood tests are also something a 9 year old shouldn't have to go through... Praying for the right doctor with the right hunch. Tara Quote Link to comment Share on other sites More sharing options...
whitestavern Posted February 6, 2009 Share Posted February 6, 2009 Tara...I live in CT and am very familiar with the different ways Lyme can manifest itself. Your daughter's symptoms could be caused by Lyme. I had it and I never saw a tick or a bite. Many people do not get a red ring. Get a test...if for no other reason than to rule it out. Make sure they do a western blot test...it's much more reliable than the standard test. Best of luck to you. You and your daughter will be in my prayers. Quote Link to comment Share on other sites More sharing options...
LizzyBee Posted February 6, 2009 Share Posted February 6, 2009 (edited) I am frustrated with them on several levels...opinion and "in our experience"...the reason they haven't tested for lyme is because they say her symptoms are not in line with a lyme infection...or what is typically seen...so they won't do it.. Tara I know someone whose dd wasn't tested for Lyme's disease because the symptoms didn't fit. She has permanent damage as a result and will probably never be able to live independently. I'd insist on your dd being tested since you know she had a tick bite. A lot of drs look for the bullseye rash, but only half of people with lyme's get the rash. Edited February 6, 2009 by LizzyBee Quote Link to comment Share on other sites More sharing options...
Michelle in AL Posted February 6, 2009 Share Posted February 6, 2009 Hi Tara, I'm sorry to hear your dd is still not doing well, I've wondered how you all were doing. Here's a web site about other tests to detect previous strep infections which would support post strep arthralgias. http://www.clinlabnavigator.com/Tests/DeoxyribonucleaseBAb.html If they didn't do a dnase b, I would suggest looking for a second opinion from a pediatrician outside your current group or ask your current group to refer you to peds infectious disease at Childrens in B'ham. I can't imagine they would refuse to refer you. I used to work at Children's, it's a great hospital. Quote Link to comment Share on other sites More sharing options...
Linda in Oregon Posted February 6, 2009 Share Posted February 6, 2009 Hi Tara - I'm so sorry you all are going through this. I just wanted to recommend this lab for the most thorough lyme tests: http://igenex.com/Website/ Hope you find some answers soon! Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 6, 2009 Share Posted February 6, 2009 Ugh! Western Medicine is so frustrating! :grouphug: Don't go to a MD. If you get this test from a good ND they will definitely find what is wrong. It will find everything in the entire body. One test. http://www.healthy.net/scr/article.asp?Id=1085 > > http://www.mmyerowitz.com/edst.html > > I have many friends who rely on electrodermal screening for all of > their health care. One of them has recovered from Ovarian and breast > cancer and another has recovered from Muscular Sclerosis and Breast > Cancer. They were diagnosed as having these diseases and being free > of them by typical Medical testing as well, of course. Quote Link to comment Share on other sites More sharing options...
elise1mds Posted February 6, 2009 Share Posted February 6, 2009 I'd see if your ped would refer you to the inf. dis. doc... and if he says no, it might be time to find a new ped anyway, right? Hopefully something can be found and fixed soon. Thanks for the update. You guys are still in my thoughts. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 7, 2009 Author Share Posted February 7, 2009 (edited) I am trying to find some of God's grace in all of this, I firmly believe we are going through this for a reason and someone somewhere needs a bit of our faith! Today, we went to the lab to have blood drawn, as they rolled up her sleeve we all kind of gasped at the RASH all over her arm..it was bright red and just ALL over, both arms, back, stomach, chest, a little on the legs but they're not as noticeable...I immediately call her doctor and am a little peeved that they say she can't see the one who's been following her the most b/c he's only seeing well patients today..I about had a cow..we had to be back in two hours for the sugar blood draw so I drove straight to her peds...he sees the rash and thinks it is unrelated to all her other symptoms (I'm not inclined to believe him at this point but I'll give him the benefit of thinking that) and that it's parvo virus..yes, there has been an outbreak of fifth's disease (slap face) but we have been almost nowhere in 2 weeks..she went to the horse show but was beside me the entire time even washing hands in the bathroom..and her sister is fine who also went with me.. So I plead to have him double check the strep tests and he does say he will have it ordered...he says he'll call the infectious disease docs in B'ham and Nashville (Vanderbilt) and see if they could see her the first of the week, I'm feeling more encouraged..only to have him come back and say that after talking with them they do not think this is something they would see..HUH??? I've already been to a neurologist and ruled out neuropathy...they're saying there's a great pain clinic..huh?? She has an INFECTION!! Why am I the only one who sees this? So, now they want to send me BACK to the rheumatologist in B'ham and run a nerve conduction test (very painful and long...she has nothing wrong with her nerves there is SOMETHING CAUSING her migratory myalgia!) I'm just PRAYING something comes back from the 8 vials of blood they took today to help us pinpoint or give them some answers...I feel like I'm stuck in the middle ages and they're leeching my poor child...just give me a low dose antibiotic for 3 weeks and let's see if that helps...atleast DO something.. Adding insult to injury the inf. dis. told my doctor that Lyme's doesn't happen in Alabama...MAYBE B/C THEY'RE NOT TESTING ANYONE just sending them all to pain clinics!! AAAGH! Tara Edited February 7, 2009 by ma23peas Quote Link to comment Share on other sites More sharing options...
JudoMom Posted February 7, 2009 Share Posted February 7, 2009 I am trying to find some of God's grace in all of this, I firmly believe we are going through this for a reason and someone somewhere needs a bit of our faith! Today, we went to the lab to have blood drawn, as they rolled up her sleeve we all kind of gasped at the RASH all over her arm..it was bright red and just ALL over, both arms, back, stomach, chest, a little on the legs but they're not as noticeable...I immediately call her doctor and am a little peeved that they say she can't see the one who's been following her the most b/c he's only seeing well patients today..I about had a cow..we had to be back in two hours for the sugar blood draw so I drove straight to her peds...he sees the rash and thinks it is unrelated to all her other symptoms (I'm not inclined to believe him at this point but I'll give him the benefit of thinking that) and that it's parvo virus..yes, there has been an outbreak of fifth's disease (slap face) but we have been almost nowhere in 2 weeks..she went to the horse show but was beside me the entire time even washing hands in the bathroom..and her sister is fine who also went with me.. So I plead to have him double check the strep tests and he does say he will have it ordered...he says he'll call the infectious disease docs in B'ham and Nashville (Vanderbilt) and see if they could see her the first of the week, I'm feeling more encouraged..only to have him come back and say that after talking with them they do not think this is something they would see..HUH??? I've already been to a neurologist and ruled out neuropathy...they're saying there's a great pain clinic..huh?? She has an INFECTION!! Why am I the only one who sees this? So, now they want to send me BACK to the rheumatologist in B'ham and run a nerve conduction test (very painful and long...she has nothing wrong with her nerves there is SOMETHING CAUSING her migratory myalgia!) I'm just PRAYING something comes back from the 8 vials of blood they took today to help us pinpoint or give them some answers...I feel like I'm stuck in the middle ages and they're leeching my poor child...just give me a low dose antibiotic for 3 weeks and let's see if that helps...atleast DO something.. Adding insult to injury the inf. dis. told my doctor that Lyme's doesn't happen in Alabama...MAYBE B/C THEY'RE NOT TESTING ANYONE just sending them all to pain clinics!! AAAGH! Tara I am so very, very, very sorry. Having been through something similar with ds6, I understand a little bit. I'll be praying that you get an answer quickly and that the blood gives a clear answer for something that is easily treatable. I'm so sorry, and please keep us updated. :grouphug::grouphug::grouphug: I'm not sure if you did this, but if you didn't, go back to the lab and sign a form that allows them to mail a copy of the test results directly to you. If she still has the rash, take a picture. Get copies of all test results and take them, the pictures, and if you've been doing the pain chart take a copy of that to every doctor's visit you have. Quote Link to comment Share on other sites More sharing options...
Pongo Posted February 7, 2009 Share Posted February 7, 2009 As a nurse, the first thing that comes to mind would be a blood abnormalities such as; * Anemia (low number of red blood cells ; may cause fatigue, "pale" skin coloration, and respiratory difficulties such as shortness of breath) * Leukopenia (low number of normal white blood cells; may increase the risk for infection) I hope it's something simple. Prayers sent to you and you dd. Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 7, 2009 Share Posted February 7, 2009 Ridiculous!!! Have them draw the blood, take it directly to a lab yourself, and tell them what to test for. I have worked with labs doctor-free. They just want to be paid. If that doesn't work, ask for a copy of her medical records and go to a different doctor and tell them exactly what you want her tested for. I am so sorry you are going through this. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted February 7, 2009 Share Posted February 7, 2009 AAAHHHH! Still praying that the docs come up with something very soon. Quote Link to comment Share on other sites More sharing options...
anissarobert Posted February 7, 2009 Share Posted February 7, 2009 Tara, Can you get copies of everything and just go to a different Dr.? It really sounds like this one does not know what is going on, and is not motivated to find out. When my oldest was born she showed weird symptoms and her ped. spent 3 months researching to find out her diagnosis. A good Dr. is going to listen to the mother. I have had Dr.'s say that a mom's instinct is usually right. Good Luck.:grouphug: Keep us updated. Quote Link to comment Share on other sites More sharing options...
love2read Posted February 7, 2009 Share Posted February 7, 2009 Oh you poor dear :grouphug: and your little one who is going through this is being so brave. You have my most loving prayers. I'd corner a few nurses in the children's ward at the hospital and ask them who the best pediatricians are and then call those offices and ask/beg if they will take her on as a new patient. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted February 14, 2009 Author Share Posted February 14, 2009 Well, here we are on week 6 or 7..I'm losing count now. It all started December 23. We went to the rheumatologist who ordered a nerve conduction study...I really dreaded having to subject her to this knowing she had no problem neurologically, when will they listen to the mother? This ALL started with an infection! But, I'm trying to be patient and allow them their tries. Praising God, she passed the first electrical stimulus test so the neuro decided she did not need the needle in the muscle test...THANK YOU JESUS! So we're officially calling her disease the "wha****not" It's not: Lyme Disease (just got that test back) Diabetes Thyroid related Strep (Still not convinced me on this one) B12 is fine Folic Acid is fine CBC is fine Chem is fine This last run of blood showed a full blown infection..somehow she got Parvovirus (Fifths Disease/Slapface) and her IGE was very high..which is good, b/c it shows her body is effectively able to address this new infection. The unusual thing about the slapface is that in everything I've read you get the slapped cheeks then it goes to mostly your arms/legs...well she had full blown rash over ALL her body and the rash didn't show up on her face until a week later...just the opposite.. Yesterday she was playing with our beagle for maybe 10 seconds, she came to me and said her heart was about to jump out of her chest...I checked and it was 140 bpm!! (her resting heart rate is always low 70's) within 2 minutes it was down to 76...so she is having tachycardia..SOMETHING is going on...our approach now is to just try her on a stronger anti-inflammatory for 2 weeks and see if that helps...in 4 weeks we'll go back to the rheumatologist, her throat is still red though she doesn't complain...she's had new pains...the past 3 days when she bends her fingers it is very very painful..then the next day her fingers were fine but she could not bend her knees without strong pains...I don't know if those are relatd to the parvo or the unknown we're dealing with...she's just tired a lot and tired of dealing with the migratory pains, they have lessened...they used to be 100+ a day but not many worse than a 4-5 on pain..now they're about 50+ a day with about 10 of them being an 8 on pain...we're stymied and so are the doctors... Thanks so much for your prayers!!! Tara Quote Link to comment Share on other sites More sharing options...
Aggie Posted February 14, 2009 Share Posted February 14, 2009 Tara... Thanks for the update. I am constantly praying for your precious dd and that they find out what it is quickly. Keep us posted when you have time and energy. And keep on the doctors to find out what this is! :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
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