My son had been very ill and may have lymphoma

Lisa McCarter · New User Joined: 29 Jan 2005 Posts: 4

My 13 year old son has been sick for approximately two weeks (this time) has been sick every 5-6 weeks for approximately 6 months now.

Recently, A doctor found a lumpy oatmeal type lump in the lymph gland in his left arm pit. Prior to this he had run a 104 fever--runny nose--cough--sore glands (neck and groin area) and broke out in a strange rash they called Erythema Nodosum.........He has since turned a light blue color--sort of like a moduled baby when they are cold. Blood test revealed reactive lymphicites.

Due to some questions that were asked during exam--doctor immediately started talking about a bone marrow byopsy----(Scared the living day lights out of this mother.)

He recommended we see a Ped. Immunologist who really did not pay a lot of attention to the reports from the other doctor nor did he listen to us when we stated that our son now sleeps 14-16 hours at a time when we were lucky if he slept 9 hours before getting up to go again. Very Active Child who gets very tired now. Nor would he listen to use when we told him that the (3) other doctors had placed him on Prednisone.

My major concern about a lymphoma or possible leukemia is that my grandmother was the first woman diagnosised with Hodgekins in the US and both she and one of her son's died of hodgekins. Also, on my husbands side of the family his grandmother died of mulit meylomia--

Should I go back to the orginial doctors and request a second opinion and possible more blood work up or should we just go right to the original diagnosis of a bone morrow byopsy?

At this point in time fear in ruling me and I am not sure if I am thinking clearly or not.

Any responses will be greatly appreciated.

Sincerely,

One very scared mother
Lisa McCarter Crying or Very sad

Lisa McCarter · New User Joined: 29 Jan 2005 Posts: 4

I also need to mention that the immune doctor has requested another set of mono tests (the third--two already returned with negative results)

He also thinks that based on blue color of skin that he may have lupus and/or Juvenile Reumatoid Arthritis.

Could he be correct and should I just not worry about further testing? Confused

any information would be greatly appreciated.

Lisa McCarter

merianne · Regular Joined: 06 Dec 2004 Posts: 16 Location: lakeland

[quote="Lisa McCarter"]I also need to mention that the immune doctor has requested another set of mono tests (the third--two already returned with negative results)

He also thinks that based on blue color of skin that he may have lupus and/or Juvenile Reumatoid Arthritis.

Could he be correct and should I just not worry about further testing? Confused

any information would be greatly appreciated.

Lisa McCarter[/quote]
While you are waiting for in put from medical advisers here, this is from one mother to another. If you have the means to do so, you take your child to another doctor and get as many opinions as you feel are necessary to get the right treatment. Either I am misunderstanding your post or there is still a lot of confusion as to what is wrong with your child, but either way, it needs to be addressed properly.
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Lisa McCarter · New User Joined: 29 Jan 2005 Posts: 4

Thank you very much for your reply. Since my last posting we have found out that my son [b]does not have [/b]lupus or JRA or Mono or any of the Mono related infections. His new blood work up still shows elevated Lymphacites and reactive lymphacites. He continues to have the swelling under the left arm pit and continues to be extremely tired all of the time.

We believe that the bluish color to his skin was from the prednisone. However, that is just our guess.

We are indeed getting another opinion concerning this matter. I will mortgage myself to the hilt if that is what it take to ensure that my son gets better.

Again, thank you for your concern and your reply.

Emily · Regular Joined: 03 Feb 2005 Posts: 12

Hi Lisa,

Well I certainly hope that you can find out soon what is wrong with your son!!! If your not happy with the finding see another doctor, go to the childrens emerg if you have to! You need answers and if you are arfaid it might be cancer then fight all the way the sooner you know the better.

I was diagnosed with Lymphoblastic lymphoma when I was 11 and am thankfull for my mom pushing for results all the way.

I have always heard that if your lymph nodes hurt that is a good thing as opposed to them being swollen and not hurting. So maybe it is a good thing that they hurt as it may not even be cancer. But if you are still worried then do anything within your power.

I hope all turns out well for your son!!

Emily

Lisa McCarter · New User Joined: 29 Jan 2005 Posts: 4

Emily,

Thank you so very much for you email.

We did indeed see another doctor today. During all the fancy bloodwork and simple Physican's Assistant recommended that they run and A Cartoid test. This test showed that my some have microplasmas in his blood. That is (as explained by the doctor) a bacterial infection in the plasma of the blood. They have put Ethan on zythromax for up to three weeks (one week at a time until he either responds or does not respond).

If at the beginning of the 4th week his lymph nodes in his left arm pit are still swollen and his blood tests still show elevated lymphacites and reactive lymphacites and his red and white blood counts are still at a 50-50 split (which he explained is not a balance it should be a 70-30 split 70 being white and 30 being red) then he will send us directly to Children's Hospital for a complete work up to ensure that nothing is missed and to make sure that his bone marrow has not been compromised in any way.

So, I am praying that it is a simple infection that will respond to the zythromax.

I will continue to give updates on Ethan until we are in the clear. If you or anyone else has any advise or just wants to let us know how you are please continue to reply.

And to all the Actual Cancer patients and survivors out there, YOU ARE ALL IN OUR PRAYERS. MAY GOD BLESS YOU EVERY SECOND OF YOUR DAYS.

WITH PRAYER AND THANKS

Lisa

Emily · Regular Joined: 03 Feb 2005 Posts: 12

Well that is some better news!!! Hopefully it is just an infection that can be cleared up. It sounds like you hit a good DR!!! I will keep Ethan in my thoughts. Let us know how everything goes.

Emily

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Lisa

Sorry for not responding earlier. Anyway, it seems your son is under the care of good doctors. Infections can cause enlargement of lymphnodes, and all sorts of weird blood reactions. If he has a Mycoplasma infection then he should get better with treatment, and things should return to normal soon.

best regards,
Leo
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Disclaimer: this information is for informational purposes only. It is not medical advice.

Aileen · Posted: Sat Feb 05, 2005 12:27 pm Post subject: Lisa's 13 year old son...

Hello Lisa - This is my first post to this site. I am on here to gather information for my son Kyle who is 3 and is going in for biopsies on Tuesday.

I read your post about your son and his health so far. The doctor that found the lump who sent you to the ped immunologist sounds like he is competant... but I would seek a 3rd opinion from another specialist since the 2nd guy was not very attentive.

Your family history along with the elevated lymphicite count would be enough for me to seek more information.

Matter of fact, this is exactly where we are right now with our 3 year old. Family history and blood test results that are conflicting.

My best to you as you guys figure out what is going on.

Aileen
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Aileen - Mommy to Kyle

maydayrocketman · New User Joined: 28 Mar 2005 Posts: 3

i want to start by saying stay strong and stay hopefull. go to as many doctors as you think you should and dont stop untill everything is taken care of. i cant imagine what your going through but you are defiantly doing the right things inorder to take care of this. with the history in your family its scary to think that someone so young could have this but it does happen. i dont have any sites off the top of my head but check some cancer information sites out becuase they are sometimes more helpful than doctors can be. you are in my prayers and my thoughts are with you your family and your boy.

EileenF · New User Joined: 15 Apr 2005 Posts: 1

Hi Lisa. I had erythema nodosum and was misdiagnosed several times before having a biopsy to determine that I had Hodgkin's Lymphona. I am told that erythema nodosum is uncommon in Hodgkin's disease. Please let me know if you have any questions...

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