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Help for my 12yr old daughter

Annismom
Posts: 5
Joined: Mar 2015

Hi all. This is my first official post here and while you all seem like such a wonderfully supportive bunch, I'm quite sad to be posting here. A quick intro: my name is Aly & I'm from Cali ;-) I'm a mom to 5 crazy, cute & lovely kids ranging in age from 12 to 22mo. My oldest daughter Anni- (pronounced like Annie) has been I'll for almost 6 weeks now, and we are on the verge of finally getting answers (hopefully). Here's the scoop:

2/10/15 Anni woke up and was alarmed to find 2 HUGE lymph nodes on either side of her jaw swollen up the size of kiwi fruits. They were painful and soft and "jiggly" as she said & she was very uncomfortable. I have pics of her that morning if I could post them somehow, I would. She hadn't been feeling well the previous week and had missed 4 out of 5 days of school. Her ped was unavailable that day so we saw the other one in the practice who I don't care too much for. He pretty much said it was from a virus and she must have strep or mono  he insisted she had a sore throat (she didn't) but that with rest and time she's bounce right back. He did a rapid strep (negative) and rapid mono (also negative). Sent us on our way. 

By Thursday of that week, Anni was no better, her nodes had gone down fsomewhat but she was still very uncomfortable and extremely fatigued. I had started noticing she was running a low grade fever that spiked in the evening up to high 102. She also began complaining of bad nausea. Back to our ped who ran a labs and gave her pain meds. All labs were normal. "She's fine" he said, all the while i KNEW that my daughter was NOT fine.

Fast forward a few weeks. Lymph nodes were still very enlarged, 4+cm and her other symptoms were still plaguing her every waking moment. She had night sweats, weight loss, aches in her hip & back, chills, shaking episodes (partial seizures possibly) insomnia, & extreme weakness. She had evolved into a weak little lump that could barely move from the couch. Walking down the stairs wore her out. I took her to an ENT despite the ped saying it was a waste of time, who said she had swollen nodes all over, and later I found them down in her groin as well. He said lets biopsy this asap but I want your ped to send you to oncology at the nearest children's hospital first. So when I asked the ped, He was offended that I went over his head and took her for a 2nd opinion, but VERY reluctantly sent us to oncology. The onc took a quick exam of my daughter, and said "this doesn't LOOK like cancer to me." And then sent us on our way. No additional labs, no scans. 

needless to say, after a few more trips to the ped, and him making me feel like an idiot for not trusting him, (she doeant have a fever, it must be your thermometer,  she's dizzy and out of it from lack of activity, etc...) I found a new dr. She was immediately alarmed at Anni's condition and FLOORED that no one had bothered to do more extensive labs and scans and that her ped didn't want the biopsy. So here we are, finally getting a biopsy 6 weeks later.  All of her labs are normal, some high reading on %neutrophils and low MCV, slight protein in urine. All infectious disease tests were normal or negative. The ENT is more concerned about lymphoma as the largest node (3cm) is no longer soft, but hard and rubbery. She still has other swollen nodes, I found a new one tonight in her clavicle area. She can barely eat, has missed 6 weeks of school and her quality of life is virtually nothing. Still dealing with daily fevers, last nights was 102.7 :-( I am beyond scared for my sweet girl, this mystery illness is stealing the life from her before my eyes. I am praying for answers, whatever they might be, so I can start to help my poor girl. She is also having a brain CT on 3/25 because of the dizziness, weakness, nausea and shaking episodes.

thanks for reading this novel. I feel like I left out so much but I think this intro is long enough! Please let me know if any of this rings a bell? Some of her symptoms are spot on for lymphoma, but others are not. Has anyone had mild seizures? Extreme nausea not helped by meds? Normal labs? Daily fevers?

I will update her story with more info after the biopsy 3/24. 

 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Welcome to the group, Ali. 

I am so sorry to hear about how sick your daughter, Anni, has been and how difficult it has been for you to get her a diagnosis and treatment. I am always saddened to hear stories about doctors who let their egos interfere with proper caring for their patients. I am thankful that you have persisted in advocating for her. And congratulations on finding a doctor who wants answers as much as you do.

Any pediatrician who could look at a debilitated child who had missed 6 weeks of school, lost weight, doubted her Mother's word about fever, disregarded numerous swollen lymph nodes, and declared her "fine" . . . well, I just don't know what to say.

It took about 6 weeks for my lymphoma to be diagnosed, once I became sick. I have also heard that from others. Lymphoma seems to be a difficult diagnosis. I am, obviously, much, much older than your daughter but I will say that daily fever, weight loss, progressive weakness, night sweats were all part of my symptoms. I also developed a cough and difficulty breathing. The reason for the difficulty eating and breathing is because my spleen was so swollen it was pressing into both my stomach and lung. Two months before I became sick, I had a complete physical including blood tests. Everything was completely within the normal range.

I hope your Anni does not have lymphoma, but please know that if she does, it is very treatable. Even curable. I truly understand your wanting answers and I pray you get them soon.

Bless you both,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Terribly sorry that you are having to go through this with a child, and such a young one !

Sadly, doctors are partially driven by insurance pressures, partially by defense lawyers.  Your daughter's case certainly seems bad enough to have warranted thorough testing from the get-go. But, I presented with massive nodes all over my body, and began treatment roughly two months later, so I can somewhat relate. But, the docs involved told me the wait would be irrelevant, due to the indolent nature of the particular strain iof lymphoma that I had.  But if by random chance I had had aggressive disease, the wait would have mattered, possibly a lot.  I just got lucky.  When I asked my hematologist how long I had had the disease, he responded, "Way over a year; maybe way longer than that." He did not specify what "maybe way longer than that" might mean. Two years is very plausible.  My next-door neighbor last year finished chemo successfully for a severe case of Non-Hodgkins's that he had been ignoring for around three years (known by the fact that doctors (non-oncologists) had been "feeling" the nodes for that long, and telling him that it was "nothing." When "nothing" had swollen his neck so severely that he could not lie down to sleep at night (he slept upright in a recliner for months), they did another biopsy, and there we are....

I hate it when docs say that a node does not "look" like lymphoma, since there is no clinically established criteria for how a cancerous node "looks" to the naked eye verses how an infected (non-cancerous) node "looks."  The same is true for how s node "feels": cancerous nodes can be hard or soft, tender or not tender, etc.  Hell, the surgeon who reviewed my CTs and then did my biopsy said that, even from the CTs, no one could say if I had lymphoma or not; only a biopsy can do that. And here this doctor presumes to tell you that it does not "look" like lymphoma !

What the doc is doing is using his judgement and experience, which is what they get paid for nonetheless. Childhood lymphoma is very rare, and he most likely has never encountered a case before, but most likely has treated thousands of infections. 

NO reputable doctor should ever take personal offense at someone getting a second opinion; the best doctors welcome this. I would never go back to that guy or his practice again, regardless of the geography involved, or the insurance situation. That's just me...

Be aware that there are no lymph nodes per se in the cranium/brain itself; nodes stop around the mandible (jaw) area, but hopefully the CT will rule out brain issues, and get enough of the neck to give you and the doctors some guidance.  Lymphatic involvement in the central nervous system (CNS) is extremely rare, and involves lymphatic cells, but not nodes themselves.  We have a few regulars here who have forms of CNS lymphomas now.   (Read the second paragraph of the following lesson plan, under the heading "Objective" : http://ect.downstate.edu/courseware/histomanual/lymphatic.html   )

I hope the answers, as they come in, with be medically negative, meaning, of course, that her problem is not cancerous. But I would say it is  time for you to get pushy, and consult the Yellow Pages.  The night sweats, fatigue, and weight loss are the classic symptoms of lymphoma, and are what are known as "B-Symptoms," which are mostly (but not exclusively) associated with more aggressive strains of the disease. 

General overview of B-Symptoms: http://lymphoma.about.com/od/symptoms/f/bsymptoms.htm

max

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Anonymous user (not verified)

my first question is "so what if its not cancer?" This child is obviously very ill from something, be it cancer or some other condition, and someone needs to get to the root of it. Having spent time where such things are common, I know some parasitic infections can mimic lymphoma. Have them check for parasites if the cancer tests are negative. Please get a new doctor.

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Sorry to hear of the nightmare that your family is going through, especially your daughter. I will keep you in my prayers, please keep us updated. Take care

Sincerely,

Liz

Annismom
Posts: 5
Joined: Mar 2015

Thank you all for your kind words and well wishes. Also, thank you for validating my feelings of frustration and anger toward these doctors. After I took her to the ENT for the 1st time, I made another appointmention with the ped to share with him what the ENT had said. When I told him that the ENT (who has been practicing for 40ish years and is VERY respected in our community) had found additional swollen nodes, even some in her clavicle region, (lymphoma hot zone) he said because she is so thin, it's hard to say whether those are nodes or ligaments/veins/etc. Now I'm no dr but I can feel at least one almond sized node in her clavicle area that is NOT a ligament. And he was doubting what this well respected SENIOR dr was saying?!? Ugh!!! I actually teared up in his office one visit and told him as her mom, I KNOW something is very wrong!! He just came up with more excuses and poo-pooed my gut feeling. So yes, needless to say, we WILL NOT be returning to that practice EVER. I just heard last week that the ped we saw is moving anyway. I just pray the same thing doesn't happen to another helpless child. 

Anni is scared about her surgery. It's 12:30ish right now and I can still hear her upstairs tossing and turning in bed. :-( 

Soneone asked about the head CT and I just wanted to clarify that the reason that was ordered was to rule out any sort of tumor that would be causing some of the neurological symptoms. (Extreme Nausea, occasional bouts of confusion, dizziness etc...) 

thank you you all for your support. May you and your family be blessed. I will update as soon as I can. 

Annismom
Posts: 5
Joined: Mar 2015

If you would like to see what she looked like the first morning of the swollen glands, here's a link: http://s1291.photobucket.com/user/Nosylaeel/media/Mobile%20Uploads/imagejpeg_2_zps39ee456c.jpg.html

illead's picture
illead
Posts: 863
Joined: Aug 2012

I just wanted to give you my support also.  I agree with what the others have said and glad that you are now making some progress.  I'm like Roquie, I don't know what to say about that man who purports to be a child's doctor.  My husband did not have seizures, but he had rigors (extreme chills) after each episode he would get a very high fever, around 106, which I was able to reduce with cold towels on his neck, under his arms, behind his knees etc.  We are all here for you, please know that.

You and your family and of course Anni are in our thoughts and prayers.

Becky

Annismom
Posts: 5
Joined: Mar 2015

Thank you Becky. Anni's surgery went well. She was a wreck before, so nervous and scared but she did great. She's home resting comfortably now. The Dr said the mass he removed was what looked like 4 enlarged nodes all matted together. :-( The surrounding tissue and muscle all looked very healthy. He said the nodes were not what one would see with reactive or infectious nodes. We will know for sure within 3-10 days. Now the waiting starts. Again. 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I'm not one to provide lots of information like Max. Just wanted you to know that I will be praying for the best possible results. I was lucky to have Dr.s that were quite the opposite. Almost too pushy to get me in for a CT...and I was resistant. I only had one small node that came up and then went away. I was feeling great and was in the best shape of my adult life. I chalk it up to a miricle. I was arguing with my Dr.s not to do a CT scan as the node only lasted a week with no other issues. The results of the CT were not good. But, like everyone says, its a treatable form of cancer. I would have been angry if I had similar issues like your child and been pushed away by the Dr. Hang in there!!!!

Annismom
Posts: 5
Joined: Mar 2015

Thanks Jeff, I'll let her know you said she is brave. That's so interesting that you say that your swollen node went away. I asked the ENT today about the matted nodes being yet another sign of lymphoma or a characteristic of it and he said yes, however the fact that her nodes decreased in size was not typical of lymphoma. Most lymphoma stories I've read have said that the nodes either stayed the same or increased in size. That is so great that you had such a pushy dr. Did you have other symptoms? what type of lymphoma do you have? 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I had no symptoms. At the time, I was running 4-5 miles two to three times a week, swimming a mile twice a week. spin class one to two times a week and adding some pushups/pullups/core almost daily. I felt invinceable. Then I found out I had NLPHL (nodular lymphocite predominant hodgkin lymphoma). If you click on my picture, it wil take you to my story. I had my surgery exactly one year ago this Friday for the biopsy. Chemo started May 1. 

Anonymous user (not verified)

My swollen nodes were in the retroperitonial area and quite small (under 2.8 CM for the largest one). The uptake level on the PET was borderline. However biopsy showed my body cavity was filled with scar tissue which indicated that I had lymphoma for several years and it had "waxed and waned". So I believe its not uncommon for FNHL induced swollen nodes to get smaller Temporarily. However I am told that is not typically the case for DLBCL induced swollen nodes. FNHL is a chronic condition in many people and asymptomatic for some people. My symptoms were fatigue, leg and back pain. M blood work was normal and scans inconclusive. I was treated for RA, chronic fatigue, slipped disc and also told I was just imagining it. One Dr even recommended a knee implant. This went on till I insisted on a biopsy and was diagnosed with FNHL stage IV including bone marrow infiltration. My back pain, which I had suffered for several years, went away within a week or two of starting Rituxan.

Do be firm with the Doctors. I am sure they have your daughter's best interests at heart. I agree with them that lymphoma is unlikely in so young a child. However, if tests turn up negative for cancer ( a good thing!) which it very well may, be sure to hang in there till she is properly diagnosed. There are several conditions besides lymphoma which could present this way in including lyme disease and a variety of single and multicell parasites. Good luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Mom,

Yes, the waiting. A miserable, difficult thing.  I believe it was GK who said above that if it is not cancer, then the doc still has the responsiblity of determining what it is.  Hopefully the biopsy will settle this within a few days.

LIke all others here, praying, hoping and/or wishing her a rapid recovery.

max

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