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my two year old and her cyst / tumor plz read. give input if u have it.

Posted by on Jan. 25, 2009 at 9:13 PM
  • 9 Replies

Hi, my name is drema and i am 22 years old.   i have a 2 year old little girl named danika she is my life, back in october a month before she turned 2 all the sudden one day she woke up and couldnt walk.. just kept falling to the floor.. i was terrified so i took her to the ER, once there they did xrays and all that and found a cyst/tumor. a few days later she started having really bad pains and the specialist i was referred to told me i was a young mother and i was just OVER REACTING! and sent me home.. so i took her back to the er and they called the specialist and i was blown off by the er as well at this point. 5 hours after leaving the er, my daughter was playing and her leg gave out. she screamed the most horrible scream i've ever heard. i called her specialist and said i think she broke her leg!! he said u had her at the er today if u take her back i will tell them to send u home you are young and dont know what your talking about.. this was at 5pm.. the next morning at 10am after listening to her scream ALL NIGHT. i finally said screw this and took her to the er.. IT WAS BROKEN. and they put her in a full body cast but didnt remove the cyst / tumor.. a month after the cast came off she still couldnt walk. so finally i changed to a different specialist.. who told me that everything the first specialist did was wrong and on the 14th of this month they did a surgery and removed it.. the only issue with it all is, its right on her hip bone where her hip and femur bone connect which is really rare, and now there saying that the csyt / tumor that it is, is also VERY rare. they have only seen one case in 15 years... its gonna take up to a month to know if its cancer so lets wish for the best. sry just had to vent.. any opionons.. ill update when i know more.. as of now she is in a body brace instead of a cast so i can take it off as needed so thats one good thing. but she has an appointment on tuesday to tell me what they feel about how she is doing. because there is a chance she might never walk again.

by on Jan. 25, 2009 at 9:13 PM
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Replies (1-9):
addisonmiacaleb
by on Jan. 25, 2009 at 9:26 PM

So did they remove the cyst and it came back? When they removed it they did not test it? And is it a cyst or a tumor, there is a difference. I have cysts, I even have one called an arachnoid cyst which is rare, it is between my brain and spine. My doctors also have dismissed  it saying it is nothing. I do get a yearly MRI to make sure it has not grown though, by my choice. I understand how you feel, it is very scary. To not know exactly what is going on and doctors can't tell you is very frustrating. I hope everything is okay with your baby, don't give up until you find answers. Keep us informed,  I will keep your little girl in my prayers.

lilamandafaith
by on Jan. 25, 2009 at 9:28 PM

I'll be praying for your family and little girl!!!!!!!!

knoxmomof2
by Bronze Member on Jan. 25, 2009 at 9:36 PM

Bless you through all this. All I can say is:

1) Follow your gut and don't take no for an answer and

2) Don't EVER let a doctor bully you again the way that one had! If that had been me and I'd been sent home by the ER staff after that first specialist's threat, I'd have been asking every single one of those nurses and doctors for their names, job titles and their supervisors names. You dont' HAVE to put up with that treatment

This is your child, you might be the only voice she's got through this illness. Don't be afraid to stand up when its necessary.


girlygirl320
by on Jan. 25, 2009 at 9:48 PM

my prayers are with u and your baby...and don't let anyone tell u that u are "just young" when it comes to these things.....u know when somethings not right no matter what your age!!   best of luck to you!!   i would've loved for someone to pull that crap with me at 22---i was a nurse at 22 :)

jen :)

LoveMyBugs
by on Jan. 25, 2009 at 9:58 PM

I was 18 when my oldest DD was born with cancer upon many other things. I was always taken seriously until we followed up (after she left the NICU) with her Pulmonary Doctor. I brought my parents because we have family in that area (where the hospital was) and they just happened to come in the room with me. Well the Social Worker and Doctors came in and everything they said, every question they had was directed at my parents. Finally after 20 minutes of being ignored and my parents looking at me questioningly I said "excuse me. Mom, J.D (step-dad) will you please wait in the waiting room? Thank you." The Doctor looked at me and I said (rudely because I was ticked off at this point) "I am her Mother and any questions you have are my concern, no one else's". My point is, when it is your child it should not matter how old/young you are. You take responsibility and show that you are smart enough to handle the situation. What kind of tumor/cyst did she have? There is a big difference. A cyst is a fluid filled mass. Usually not a problem. A tumor can be cancerous or not and most often a HUGE problem either way. I think that you should have armed yourself with as much information by researching her issues. Also, when they released you from the ER I would have driven to another. But that's just me, good luck!

 


GlitterAmberCatchyCreationbyAmy.gif picture by preemiemommy
MommyDrema1986
by on Jan. 26, 2009 at 3:36 PM

no the first specialist never removed it. it was removed for the first time on jan. 14th.   yes they test it but they said thats not clear enough for them so they were sending it out to a few cancer centers to have it tested futher.    they havent told me if its a cyst or a tumor they keep using both terms.. all they have really said is that it is very rare and have only seen one case like it in 15 years.. so im waiting on answers..    

Quoting addisonmiacaleb:

So did they remove the cyst and it came back? When they removed it they did not test it? And is it a cyst or a tumor, there is a difference. I have cysts, I even have one called an arachnoid cyst which is rare, it is between my brain and spine. My doctors also have dismissed  it saying it is nothing. I do get a yearly MRI to make sure it has not grown though, by my choice. I understand how you feel, it is very scary. To not know exactly what is going on and doctors can't tell you is very frustrating. I hope everything is okay with your baby, don't give up until you find answers. Keep us informed,  I will keep your little girl in my prayers.


mlg871
by on Jan. 26, 2009 at 5:16 PM

I'm so sorry to hear that.  I will keep you and your little girl in my thoughts and prayers and hope for some good news and a full recovery for her.


timelessglass
by on Jan. 26, 2009 at 5:41 PM

Your story really ticks me off!!!

I think you need to consult with an attorney.  That first specialist is responsible for some pain and suffering!  Makes me wonder who elses kid ended up dead because of this incompetent.

YObando
by on Jan. 26, 2009 at 5:49 PM

you should sue that specialist. and i hope your little girl is doing better. good luck mama

Quoting MommyDrema1986:

Hi, my name is drema and i am 22 years old.   i have a 2 year old little girl named danika she is my life, back in october a month before she turned 2 all the sudden one day she woke up and couldnt walk.. just kept falling to the floor.. i was terrified so i took her to the ER, once there they did xrays and all that and found a cyst/tumor. a few days later she started having really bad pains and the specialist i was referred to told me i was a young mother and i was just OVER REACTING! and sent me home.. so i took her back to the er and they called the specialist and i was blown off by the er as well at this point. 5 hours after leaving the er, my daughter was playing and her leg gave out. she screamed the most horrible scream i've ever heard. i called her specialist and said i think she broke her leg!! he said u had her at the er today if u take her back i will tell them to send u home you are young and dont know what your talking about.. this was at 5pm.. the next morning at 10am after listening to her scream ALL NIGHT. i finally said screw this and took her to the er.. IT WAS BROKEN. and they put her in a full body cast but didnt remove the cyst / tumor.. a month after the cast came off she still couldnt walk. so finally i changed to a different specialist.. who told me that everything the first specialist did was wrong and on the 14th of this month they did a surgery and removed it.. the only issue with it all is, its right on her hip bone where her hip and femur bone connect which is really rare, and now there saying that the csyt / tumor that it is, is also VERY rare. they have only seen one case in 15 years... its gonna take up to a month to know if its cancer so lets wish for the best. sry just had to vent.. any opionons.. ill update when i know more.. as of now she is in a body brace instead of a cast so i can take it off as needed so thats one good thing. but she has an appointment on tuesday to tell me what they feel about how she is doing. because there is a chance she might never walk again.


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