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How can I get the Dr's to listen to me about my 2 year old daughter lymph nodes?

My daughter is 2 and she's had enlarged lymph nodes for a year. It started as one on the right side of her neck up under her jaw. I took her to the doctors and they said wait 3 months. So we did and the inflammation went down but never went back to normal size.
We moved and have started seeing a new doctor at the beginning of this year. My daughter now has a ton of enlarged lymph nodes under her jaw along the side of her neck, behind her ears and in the back of her head, all being lymph nodes. The original one is fixed and she has another fixed on the left side of her neck. The doctors have done blood work and she had mono at the beginning of the year and they said give her 4 months for everything to go away. Well its been 6+months since that and they've done blood work, antibiotics, been referred to an Ent (who was a quack, he didn't even look at my dr's notes). How do I get a dr to listen? Where do I go from here?

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arnoldgirl613

Asked by arnoldgirl613 at 11:04 AM on Sep. 3, 2010 in Health

Level 4 (40 Credits)
Answers (10)
  • It is actually not uncommon for a child to have enlarged lymph glands. My son has had one that is larger than normal since January. We have been through everything you have (multiple pediatrician visits, extensive blood tests, and an ENT visit). We had a wonderful ENT who explained it to me this way: Consider the cells in a lymph gland like the frame of a building. When it is enlarged during an infection (strep in my son's case), the framework expands to support the growth from the cells fighting the infection. When the infection goes away, the framework doesn't immediately go away. She told me just to keep an eye on it and as long as it doesn't grow any larger, we don't need to worry about it.

    If you are still concerned, I would recommend seeing a different ENT.
    andrea96

    Answer by andrea96 at 11:14 AM on Sep. 3, 2010

  • Just keep trying different Dr's. That is all you can do.
    Raeann11

    Answer by Raeann11 at 11:14 AM on Sep. 3, 2010

  • She had a strep test 2 weeks ago for recent tonsillitis, that was negative. They still put her on antibiotics and it didn't clear up. Now one tonsil on the right side ( the same as her FIXED lymph node) is larger than the other and they are still enlarged and red 3 weeks later (her tonsils). I'm tired of the doctors telling me to wait it out "its just a virus" then the next week "its a bacteria". they go back and forth and i just want an answer. I know enlarged lymph nodes are normal in kids and it takes a long time for them to go away sometimes but she now has 2 FIXED lymph nodes in the past 3 months and they still want me to wait for it to go away. I don't want another one to become fixed while i'm waiting.
    arnoldgirl613

    Comment by arnoldgirl613 (original poster) at 11:18 AM on Sep. 3, 2010

  • I am a medical lab technologist and I used to work in the lab department that does the kind of lab work that tests for blood disorders including mono. It is rare for a young child to have mono and children have other symptoms that flu-like. The blood tests would have picked up diseases like leukemia. Dental problems can cause swollen lymph nodes and she should be checked by a doctor. Rubbing lymph nodes can make them swollen. I suggest next time she is ill to go to the closest childrens hospital ER.


    http://www.drspock.com/article/0,1510,6075,00.html


    http://www.drspock.com/faq/0,1511,10430,00.html

    Gailll

    Answer by Gailll at 11:23 AM on Sep. 3, 2010

  • Most bacterial infections don't need antibiotics in children. You just have to wait for infections to get better. It doesn't matter if they are viral or bacterial. I had an enlarged (fixed) lymph node for over a year after an infection, 3 months isn't a long time. If she is getting many infections then it may be appropriate to test her for primary immune deficiencies (PID). If she has 2 of the 10 warning signs then she should be tested. I have the PID called common variable immune deficiency (CVID). My 3 sons and now my toddler grandson have the same disease. It can be inherited, the result of a genetic mutation, or from other reasons they aren't sure of because it is so rare. I get IV gamma globulin evey 3 weeks to protect me from infections so I don't have to live in a bubble. 10 Warning Signs to follow.

    Gailll

    Answer by Gailll at 11:34 AM on Sep. 3, 2010

  • She had her very first dental appointment in June, everything was fine. Before the recent tonsillits ( tonsils have been enlarged and red with no white patches for 3 weeks now) she hasn't been sick since Feb. She has a couple shotty nodes under her neck the are mobile, a couple enlarged, painless mobile nodes along her jaw and neck and 2 maybe 3 fixed nodes in her neck that are firm and rubbery but not stone-like. Her pediatrican, er doctors, myself and husband agree the 2 or 3 fixed nodes are definitely fixed but the ENT says they aren't and they are a result of the tonsillitis. He obviously didn't even look at his notes because he would have seen that the lymph nodes have been a problem for a year now and the tonsillitis has been going on for only 3 weeks.
    arnoldgirl613

    Comment by arnoldgirl613 (original poster) at 11:35 AM on Sep. 3, 2010

  • 10 Warning Signs Primary Immune Deficiencies
    Eight or more new ear infections within one year.
    Two or more serious sinus infections within 1 year.
    Two or more months on antibiotics with little effect.
    Two or more pneumonias within 1 year.
    Failure of an infant to gain weight or grow normally.
    Recurrent, deep skin or organ abscesses.
    Persistent thrush in mouth or elsewhere on skin, after age 1.
    Need for intravenous antibiotics to clear infections.
    Two or more deep-seated infections such as sepsis, meningitis or cellulitis.
    A family history of primary immune deficiency.
    Gailll

    Answer by Gailll at 11:39 AM on Sep. 3, 2010

  • PS Gailll..... maybe you can help read her blood work results she had taken on the 2nd day of her tonsillitis.... some seemed normal to me, some seemed abnormal and it seems like some of the info may be missing? can you tell me what you think about these numbers?

    red 4.1
    platelets 3.45
    wbc 14.5 segs 43 lymphs 29 monocytes 18 bands 6

    Thats all the info they gave me.... any red flags to you?
    arnoldgirl613

    Comment by arnoldgirl613 (original poster) at 11:45 AM on Sep. 3, 2010

  • No she hasn't had any of those problems....
    arnoldgirl613

    Comment by arnoldgirl613 (original poster) at 11:48 AM on Sep. 3, 2010

  • i'd see a different ENT
    elizabiza

    Answer by elizabiza at 11:53 AM on Sep. 3, 2010

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