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Old 10-27-2010, 11:14 AM   #1
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My 6 year old daughter that doctors can't seem to help

Well, I've told this story so many times in the past month, I seem to always leave things out so I will try to start from the beginning.

I am the mother of a 6 year old little girl. Up until 2 months ago, she was relatively healthy. She was prone to ear and vaginal infections, got sick (normal cold) alot more than my boys but I figured it was because they have different fathers and my husband has an excellent immune system. My boys are 3 and 5 and have NEVER been sick so I just figured it was normal stuff. For the past 2 years, she has had a chronic cough, it does become worse in the early spring months but it's still year round and she coughs everyday, especially really bad at night. The past year she's had really bad night sweats, chills, and itching. She will itch herself so bad she makes herself bleed. To also mention, she hasn't had a vaginal or ear infection in at least 3 months.

For the past 5-6 weeks she's had on and off fevers. They come and go on their own and do not respond to pain reliever/fever reducer medicine. Middle of September, she had a 3 day fever of 103-104 that just wouldn't go away. We were in the middle of switching pediatricians because her former one no longer took our insurance so I took her to the ER. I really thought it was normal, I just wanted to be on the safe side. The hospital couldn't find out what was wrong with her, had about 3-4 doctors look her over until it seemed like they jumped on the bandwagon of "viral meningitis" just to have something to diagnose her with. They were going to do a spinal tap but then when the doctor that came in said, "Oh, I don't do peds but I guess I could try." That's when I walked out and went to the Children's Hospital downtown. By the time I got there, her fever had went down to about 101.5 so I figured she was getting better and walked out. The wait was forever and I didn't want to just be the paranoid mother (very ironic now). I should've stayed but she got better. About 8-10 days later, she came home from school and showed me a "bump" in her groin area. It ended up being a swollen/inflammed lymph node. At that point, I measured it and it was 3.5-4 cm. It didn't hurt hardly. I took her to a new pediatrician who prescribed her 10 days of Septra (antibiotic) but it did no good and actually got worse. To make a long story short - during the last 5 weeks, she's had abdominal pain, headaches, sporadic fevers, extreme fatigue, then the normal things that's been there for the past 1-2 years. It becomes really bad when she does anything remotely exhausting at school (just a few minutes on the playground). This is not normal for her. The lymph node began to grow, it looked like normal skin (not infected), felt hard and it grew until it reached 8 cm. I took her to her PCP on Oct 15th that then referred me to a surgeon to have it drained and/or removed. Her symptoms were getting worse, the surgeon saw her on the 21st. Scheduled for the surgery and didn't seem alarmed. Didn't run any tests, just schedule to do the surgery and diagnosed her with Acute Lymphadenitis. That night she started to run a high fever along with the area of the lymph node becoming bright red. The surgeon had made a guess it was either staph or cat scratch fever. We haven't been around any cats more and less kittens so was more leaning towards staph - I had no idea what the risks were so I took her to the Children's Hospital ER. They admitted and started her on antibiotics immediately. She was in there for 5 days before the surgery. They ran a blood test, 2 urine samples, 2 chest xrays, ultrasound, and a TB test. They drained the lymph node and ran cultures on it but through all of that it's still inconclusive. She said any bacteria that would normally cause that came up negative. In the first urine test there was white blood cells in there? So they've ruled out staph, strep, TB, UTI, or cat scratch fever. They have no idea what it is. To make it worse she still is having extremely high fevers and the same symptoms even though the surgeon said those would go away. I have no idea what to do. I am in the process of switching pediatricians due to the fact how this one handled this situation and told me I couldn't bring my boys to my daughter's appts anymore even though I am a student/stay at home mom! She has missed so much school that they're trying to put her on hospital bound. They have her on Clindamycin for the next 3 days and another med to offset the side effects of the first antibiotics.

I did find out this weekend that her father is a trait carrier for Lupus, Sickle Cell, and there is a strong family medical background of cardiovascular problems along with normal asthma which the hospital gave me inhaler prescription and her dr had given me some sample allergy tablets to help with coughing but it hasn't.

I don't know what to do to help her. Her fevers are random and they can get bad. There was no infection anywhere in her body they could find that would cause the lymph node to swell up that bad. I can't send her to school and I have no idea what to do.

Last edited by spesterfield; 10-27-2010 at 11:34 AM. Reason: Left out info

 
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Old 10-27-2010, 02:30 PM   #2
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Re: My 6 year old daughter that doctors can't seem to help

DD was sick all the times with fevers but minimal other symptoms. At first they thought ears, would give her ATB and she would get better, after years of this she got REALLY sick and her ears were fine.

Turns out she had urinary reflux & a duplicate ureter and was getting Kidney infections.

What kind of vaginal infections is your daughter getting-they are very unusual in kids unless they are yeast related to frequent ATB

Good luck

Pup

 
Old 10-27-2010, 02:36 PM   #3
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Re: My 6 year old daughter that doctors can't seem to help

They were just regular bacterial infections from not wiping. Once we got flushable wipes and really worked with her on wiping well after using the restroom, the infections seemed to diminish.

A weird other thing I forgot to mention is like day 3 in the hospital, her lower right rib cage begin to cause her pain. At first it was just in one area but then she said the pain was moving and it was painful to move or walk. I mentioned it to one of the residents, but they didn't seem too concerned. I think maybe it might be a kidney infection.

 
Old 10-27-2010, 03:33 PM   #4
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Re: My 6 year old daughter that doctors can't seem to help

Does she use the asthma pump when she starts to cough? Stupid question but have the doctor tested for Lupus and Sickle Cell


Hope she starts to feel better

Dan.

 
Old 10-27-2010, 04:22 PM   #5
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Re: My 6 year old daughter that doctors can't seem to help

We just got the inhaler yesterday when they released us from the hospital and gave us a prescription for it. She hasn't coughed much today but it's mainly at night which is what the allergy tablets her PCP gave us was supposed to help with but hasn't.

I also just found out about her biological father's medical family history so when we get her a new PCP, I am going to have her tested for Lupus, Sickle Cell, along with an echo to make sure her heart valves are okay as they have major cardio problems in the family. Her bio father and his mom have heart murmurs (his mom had to have surgery just a few years ago) and then my daughter's half brother (also from her father's side) has aortic stenosis and a bicuspid aortic heart valve.

 
Old 10-27-2010, 06:14 PM   #6
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Re: My 6 year old daughter that doctors can't seem to help

Quote:
Originally Posted by spesterfield View Post
We just got the inhaler yesterday when they released us from the hospital and gave us a prescription for it. She hasn't coughed much today but it's mainly at night which is what the allergy tablets her PCP gave us was supposed to help with but hasn't.

I also just found out about her biological father's medical family history so when we get her a new PCP, I am going to have her tested for Lupus, Sickle Cell, along with an echo to make sure her heart valves are okay as they have major cardio problems in the family. Her bio father and his mom have heart murmurs (his mom had to have surgery just a few years ago) and then my daughter's half brother (also from her father's side) has aortic stenosis and a bicuspid aortic heart valve.
you haven't gotten an answer. I would suggest that you plant yourself (and your daughter) at Children's Hospital until you get an answer. I know our Children's Hospital up here in Philadelphia is excellent. They didn't release my grandson until they had a diagnosis.

Good luck with your little girl.
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Old 10-28-2010, 07:38 AM   #7
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Re: My 6 year old daughter that doctors can't seem to help

To be honest, I chose to go home from the hospital. My daughter only ran a low grade fever yesterday and no fever today so far so I am sending her back to school tomorrow and I am getting a new PCP to run more tests. After talking with her grandmother last night, I am definitely having her tested for Lupus as she said her husband had the same symptoms 2 years before he was diagnosed with it. I am trying to not to worry about it, the school has agreed to help me keep a close eye on her. So we're going to try to get back to life and me back to pre-med! LOL, it's hard being so busy but we will get it figured it out. As long as her temperature isn't going too high and she doesn't have an oversized lymph node again, then I am comfortable waiting a few weeks.

 
Old 10-28-2010, 04:37 PM   #8
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Re: My 6 year old daughter that doctors can't seem to help

Did they ever do a biopsy of the lymphnode?

 
Old 10-28-2010, 10:18 PM   #9
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Re: My 6 year old daughter that doctors can't seem to help

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Originally Posted by Lizzie62 View Post
I would suggest that you plant yourself (and your daughter) at Children's Hospital until you get an answer.
Agreed. Especially after the whole rib cage being in pain thing. I would have bugged the crap out of every doctor to check it out, because that is just not normal. Poor thing. And it's not ok that she randomly gets fevers. That is really rough on a person's body, especially one so young. I mean it's ok if she gets sick once or twice a year with a fever, but with those high of temps and with how often they are I would be pretty worried.

I hope they figure out what's wrong with her and get her to feeling better soon!

 
Old 10-29-2010, 07:03 AM   #10
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Re: My 6 year old daughter that doctors can't seem to help

I understand that you have a very busy life-style including 2 younger children but this could be way more serious than Lupus. I really suggest that you don't wait. This sounds way abnormal.

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Old 10-29-2010, 07:25 AM   #11
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Re: My 6 year old daughter that doctors can't seem to help

spesterfield: the rib problem could be gallbladder related. That's where the gallbladder is - on the right side under the ribs. I would have her seen by an endocrinologist and get a full work-up done by him. Have her thyroid and adrenals checked and they can even do the lupus test too. Her body is getting a fever because that's the bodies way of telling you that something is wrong, whether it's an infection or something else, and it's trying to fix itself. I'd also have her checked for celiac disease and T1 diabetes. Good luck. We're here for you.

 
Old 10-29-2010, 08:22 AM   #12
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Re: My 6 year old daughter that doctors can't seem to help

It's not even about my busy life, to be honest. I've spent the last 2 weeks and seen about 20 different doctors (no joke or exaggeration) which all do not seem that all concerned. They didn't do a biopsy on the lymph node - they only drained it and sent it for culture which the result of that was inconclusive because the surgeon said every bacteria that would commonly cause the infection came up negative. Obviously something is wrong so I am taking her to a new pediatrician that has AWESOME ratings and reviews to hopefully get an answer. I just realize that I am not going to get the answer overnight. They've done all of those tests and it's came up with no conclusive results so I am going to have to wait. I am not waiting weeks or months ... just a couple of days to get an appt with a reputable PCP. There were a few Hospital pedi's that seemed concerned but they ran every test they can to diagnose it and came up empty handed! I hope we get some answers next week though

Thank you all for your comments and suggestions. She hasn't had a high grade fever in a couple of days so I am hoping and praying the surgery fixed the issue but only time will tell.

 
Old 11-06-2010, 10:16 PM   #13
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Re: My 6 year old daughter that doctors can't seem to help

Hi spesterfield. I think you have all our backing to get pushy with the doctors and demand some answers. Have you met with the new ped yet? Hopefully this person will really manage her case and be able to make a diagnosis so a treatment plan can begin. All the best to you and your little daughter ~

 
Old 12-19-2010, 04:44 AM   #14
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Re: My 6 year old daughter that doctors can't seem to help

I would go to the new Ped but what you really need is to see a specialist. Peds only know so much. Get a good recommendation from your Ped on a specialist. An Endocrinologist and an Immunologist.

 
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