Lower spinal lump on 3 year old female

My 3 yr old daughter has had a lump/swelling located on her lower spine which has been there for 10 months.  The lump comes up for several days to weeks at a time then goes down.  At times it also moves to either side of her spine when it comes up. It comes up in varying degrees, at times much larger than others.  It occassionally looks bruised, it has also appeared both spongy and hard.  I've had her to see two different pediatricians (as we recently moved) and have also recently seen a pediatric orthopedic surgeon. My daughter is very tall for her age and skinny, however she has very good nutritional habits.  Each doctor has told me that what concerns them is the fact that it comes up and then goes back down again, and also moves side to side.  However, none of them can give me any kind of answer othere than it could possibly be a bruise or a cyst.  My daughter occassionally says that her back hurts and if you touch the spot she always says it hurts.  I've also noticed that if I press on the spot that she jumps, almost like a shock.  The area has never completely disappeared, only lowered in intensity.  Also, I've noticed that since this has been on her back, it seems as though her immune system does not function as well.  She rarely used to get sick, and since this she always has a common cold or illness. Even when the rest of the household doesn't get the illness.  What steps should I take to make sure that this is diagnosed?  Or am I crazy for thinking there should be a proper diagnosis?  I just do not think that I should dismiss this as a bruise that has remained there for 10 months.  Are there any suggestions for what this could be, or is this a symptom of something larger?  I need help for my baby girl please!?!  

[ErinBBC]

Hi,
I think it could possibly be a swollen lymph node - they are all over your body not just your throat, armpits, and groin where we are used to seeing them.  Swollen nodes are often a sign of infection and since she gets sick a lot now, I would highly recommend going to see an immunologist.  I have a very rare immune disease and it took me 21 years of misery before I got diagnosed!  If that's your daughter's problem, I'd hate for her to go that long, though immune diseases are pretty rare so it's unlikely she has one.

You can visit www.primaryimmune.org, the homepage of the Immune Deficiency Foundation, and read about the various diseases to see if any of them match her symptoms.  Also they can help you find a good doctor, most docs aren't familiar with the specialized testing necessary to diagnose some of these conditions.

Good luck,
E

[ckeenan8]

HI,
  Thank you so much for your response, it's nice just to have anyone give me some lead on which direction to go.  One pediatrician did say that it could be an issue with her lymphatic system, however in the area where the lump is located, there are no known lymph nodes.  I am definitely going to check out the site you listed.  Thank you so much!! I truly appreciate it!  
  
Sincere Thanks,
  Ckeenan8

[ErinBBC]

You're welcome, I hope you find some answers.  Even if she has a already had a standard immunoglobulin blood panel done, she should see an immunologist because there are several immune diseases that can be present even if immunoglobulin levels are normal, or even above normal - my immunoglobulin panels always came back normal which is why it took me over 2 decades to get a diagnosis.

Doctors have to do specialized testing to look for those types of disorders...for example I had to be given a vaccine and then have my blood tested a week later to see if I made any antibodies, which I did not.

Also the National Institute of Health in Maryland has a rare disease and undiagnosed symptoms program where they will consult on difficult to diagnose cases, and so does the National Organization for Rare Disorders.  You can visit their websites to learn more.

Good luck and don't give up!  My parents were told they were just being 'worry warts' for years, and later I was told the same thing as an adult.  You know if something is wrong and you have to just keep pushing doctors to listen.  It's a chronic problem with 'invisible illnesses' because patients don't look sick and test results come back normal more often than not, but you aren't alone.  

The Jeffrey Modell Foundation just released a series of public service announcements that address this problem, it's also a good site with lots of info and a doctor referral/specialist finder service: http://www.info4pi.org/picampaign/index.cfm?section=campaign&CFID=36871470&CFTOKEN=16020115

E

[ckeenan8]

Again, thank you so much! I am making an appt. in the morning with her current pediatrician to find out if they will agree to test her, regardless of the fact, as you stated, that she seems healthy.  I was told for years that I most likely would not be able to conceive a child, and I was blessed with her. Several doctors were wrong in that case, and I'm almost sure they are wrong now.  I just have to be the advocate for her to make sure that she is ok.  At times they make me feel as if it's just me  trying to find something wrong with my daughter.  I am in no way a hypochonriac myself, and the last thing I would ever want is for my daughter to have an illness that she must learn to live with.  But if that is the case, I want to know sooner than later.  I could not imagine having to suffer for 21 years to finally get someone to listen...HOW FRUSTRATED you must have been!   Thank you so much, it alleviates a lot of stress just to know that someone understands.  

Heartfelt thanks!!!
C

[ErinBBC]

Good luck with your doctor visit!  Here is a link to a free booklet for physicians that the Immune Deficiency Foundation made, it tells them what tests to do and how to diagnose immune disorders - you can print it out and bring it to her appointment: http://www.primaryimmune.org/publications/book_diag/IDFDiagnosticandClinicalCareGuidelines_2ndEdition.pdf

If her pediatrician is unwilling to test or if they think they aren't qualified to do it, they can contact the IDF, they provide a FREE service where one of their immunologists will consult for free by phone, email, and fax with them.  Her doctor can reach this service at 1-877-666-0866, Monday - Friday, 9:00 am - 5:00 pm Eastern Time.  You can also contact the IDF to help you with finding an immunologist in your area.

I sincerely hope that you can get some answers much faster than I was able to.  21 years of being told things like: "you worry too much, you're a hypochondriac, you're depressed, you just want drugs, it's all psychosomatic (in your head), you're trying to get attention, you're stressed out" etc. was truly awful.  

It was bad for me, but I think it was worse for my parents.  I don't have kids yet, but I can imagine the fear and frustration of not being able to convince someone to help your child when you know something is wrong.

Again, good luck and keep me posted.
E

[ckeenan8]

Her appt. is for Monday, so hopefully I can get some form of resolution or at least some peace-of-mind after that.  I'm hoping for the best,  yet I'm skeptical.  I had my son who at teh same office this past fall b/c he was sick, running a fever...had all the symptoms of swine flu.  As I was explaining to one of the DO's on the staff that my son had been really fussy (not his typical demeanor), not eating, etc...she stopped me and asked if I had tried behavior training for his fussiness. Even asked if I had tried placing him in time-out for his fussiness...what she was looking at as bad behavior.  Needless to say, at the time he was barely over 12 months old.  Irrelevant I know....just makes me skeptical about the office in general.  Hoping for progress on Monday.  The office does have an EXCELLENT pediatrician in the building, he's been there for years, it's actually his practice....but he refuses to see new patients.  He is the one who consulted with the other MD in the practice to refer us to an orthopedic surgeon, yet he's never laid eyes on my daughter.  I am printing out the booklet now, so I'll definitely be taking it with me.  Thanks again for all your assistance!  You have truly helped my daughter and myself.  I'll keep you posted.  

Many thanks,
C

[ErinBBC]

The doctors at this practice don't seem as if they take you very seriously.  If they don't give you the tests you want or the answers you need on Monday, you should go see a new doctor if at all possible.  Even if they do some tests, I'd take whatever they give you with a grain of salt and seek a second opinion.

Also here is a link to In Need of Diagnosis, a non-profit charity that helps people find doctors who can diagnose them: http://inod.org/Help.aspx

As a former kid who went through all of this, I can vouch for how important it is to have parents like you who don't give up - no matter how many doctors roll their eyes at you, sigh pointedly, and recite some variation of "you're really worrying too much, the bloodwork is all normal, and she's just fine."  Don't ever let them make you feel like you're not doing the right thing by refusing to back down.

Hang in there and I'll be praying for you and your little ones.
E

[DeaMc]

Did you ever learn about what was wrong with your daughter & the reoccurring lump on her spine? What was the outcome?
D.

[AE87]

hi ,
i was just wondering if you ever found out what was wrong with your daughters back.... my 3 yr old has the exact same thing on her back, and it worries me, we have seen numerous doctors as well... any info would help,

thanks,
AE