should I be pushing for answers?

[jocro37]

my daughter has been ill since oct-random fevers, sickness, pallor, tiredness. She was admitted to hospital in november with abnormal blood counts. Her neutrophils were very low 0.3 and her platelets low.The doctors told us either leukemia or ebv virus. She was put on iv anitbiotics and the plan was that if her cbc hadnt raised a bone marrow biopsy would be done. her cbc raised and we were discharged with another course of antibiotics.We have had to go back to see her doctor and have repeat cbc;s. Her last one was good and her neutrophil count had raised to 1.9 and her platelets to 250,000.She tested negative for mono spot test but tested positive for recent and past infection of mono. Therefore her doctor is sure this is chronic mono. She is up and down all the time, last week had mouth ulcers and the week before high temperature for a week and then diarrhea.She is still very tired but better. Last week I noticed she had red pin pricks on the roof of her mouth and she also has very prominent veins on her chest and abdomen. She has also started with night sweats again which had stopped for a few weeks. Last night I noticed the pin ***** spots on the roof of her mouth have become bigger and she has large red patches now. She has also been suffereing from nosebleeds during the night.I know all of her symptons are within keeping of mono but can they go on for this long and new symptons appear ie the red spots?Am I being over anxious or do I have a cause for concern? What is worrying me the most is that if this is mono should the symptons still be here 3 months later?She also has a cold and cough which she has had for months.She just started to get her colour back this week but this morning she is pale again and her eyes looked bruised again. There is no temperature and she is eating and playing as normal. Any advice much appreciated

[Hien K Duong, MD]

Joc ro37,

It is possible for children to have chronic leukemia.  Other blood and/or immune system disorders are also possible.  She has not gotten any worse, however it does not seem that she has improved at all.  These persistent symptoms need to be investigated further.  

It is generally better to be more cautious and more concerned – than less. The earlier that a diagnosis can be made, the sooner a treatment plan can be initiated. You should discuss your concerns with your physician.

Good luck and keep us updated.

Thank you for your question.

[jocro37]

hi, thank you for both your replys. My gut feeling is that something more sinister may be going on but I also am aware that I am a worry wart- I certainly dont want to come across as an over -anxious mum. My question is if this was acute leukemia then surely my daughter would be very poorly? Although she has symptons that have been going on for a while and new symptons appearing, isnt the fact that she currently doesnt have a temperaure a good sign? Also is it possible for a child to have chronic leukemia? Again my only consolation at the moment at that she is not getting worse. Should I hang onto this fact? She has woke this morning with a very bad cough which she didnt have last night and as soon as she fell alseep last night the sweats started. She also has more red spots inside her mouth- could this be due to the cough? She has had a cold now for 3 months
many thanks

[Hien K Duong, MD]

Jocro37,

Your daughter’s symptoms are concerning, especially given the severity and duration of her symptoms.  Antibiotics, conservative approaches, and patience may be important initially.  However, when symptoms persist, other causes must be considered.  Further investigation is necessary to rule out more worrisome diagnoses (leukemia or other disorders).

You should express your concerns with your daughter’s physician again. If he/she does not seem to be receptive, I would recommend that you seek a second opinion – don’t be hesitant to do so.  

Hope this helps.

[Sunshine223]

I just had to respond to offer some support in any way possible because we are going through an all too similar situation.  I will spare you the details at this time but wanted to encourage you "TO BE HER ADVOCATE IN EVERY SENSE OF THE WORD"...Each and everyday!  You hear it all the time, yet never realize the impact it has on getting the PROPER treatment for you child.  Remember...NO ONE cares about her life more than you.  It doesn't mean you search for the worst results, but you make them PROVE their rationale.  Don't worry about how they percieve you either- so many of us do that in the beginning and miss opportunities to find some resolution.  I was guilty of this, as well!
It's simple...you do some homework from legit resources and keep a journal.  You call back up and state your concerns and demand an immediate appointment (hopefully it works).  If not, show up! We did that just yesterday but with a smile on our faces and respect.  I told him...I respect how you feel on the matter but that doesn't work for me because I care how my child feels more than anything else.  I had my concerns laid out and validated them medically.  Then, said the best part, "When does the abnormal BECOME abnormal? We are trying to be proactive here and no one here is doing that.  Cancer is not like the flu where you let it run its course with some antibiotics and wait!  I understand the possibility that this is not malignant BUT most importantly I seem to be the only one who is paying any attention to the reality that there is a GOOD POSSIBILITY this is malignant considering all the abnormal tests, lymphadenopathy doubling in size in 2 wks and spreading, other symptoms, and no infection (ran the EBV & CMV tests as well).  I gave him applause where he deserved it because he was a great Doc overall, but I'm not there for his feelings...ONLY for my daughter!  Moral of my comment...Do everything you can but prepare yourself beforehand and go in determined!  Good luck w/everything!  All of us who've endured this are behind you :)  And please, try your best to compose yourself and realize that there are exceptional Doctors and we all need their support but don't be passive when they are :)...God Bless