Daughter to the DR tomorrow

I am completely overwhelmed at this point. My CP is at all time high levels. My step grandsons mother is doing some things that arent real good. And now my daughter is having health issues. Talk about stress.

She is turning 15 next week and the GYN dr sent her for an ultrsound and bloodwork due to super heavy irregular periods. We got a call the next day about a very low white count on her CBC, however they wouldnt tell us what it was. So she was referred back to her PCP who wrote for another CBC. The nurse finally gave us the numbers on Thursday, our dr considers a count of 5.5-10 to be normal and she is at a 1.8. However, I have found normal numbers going as low as 3.5 on some references. Now comes the fun part of what to do next.

So now we have had 2 tests a week apart with very low white counts. Do we wait and do another test in a month, go right to the oncologist for a bone marrow biopsy to rule out a worst case scenario? I just dont know. She is an active girl and has not shown any signs of infection or viral illness. If she would have signs of viral illness a low white count wouldnt be so worrysome. I am trying not to jump to any conclusions, but its difficult.

Hoping that maybe someone here may have some suggestions or recommendations on things to ask the dr tomorrow.

Good luck to her, and to you, but what are some of the possibilities in this situation? I really don't understand the role of WBC in these matters.

david

David, WBC fight off infections. When you have an infection they go up. If you dont have enough you are considered immunosuppressed. Then you get things and cant fight it off. They need to find out why hers are so low, whats destroying them? When there are no other blood related issues that raise red flags in combination with the low WBC the bad ones are Leukemia and Lupus of course. On the good end she doesnt get super ill frequently, on the bad end if she went that low just from a viral or other issue she should of shown major symptoms according to the dr.

Thanks for the explanation. I learned something.

Hope and pray for good results for both you and your daugther.

david

Many prayers are with you, maybe ask that she get another cbc run along with ana markers as if it is lupus it should show up on the ana. Maybe seek out another ob gyn for another opinion.
Prayers and well wishes, keep us posted as we do really care.

Praying for you and your daughter and look forward to an update when you get the chance..

thanks for the update, shell, i was just here looking for one.

going up with that wbc is a good thing, but doesnt answer the "why" part, so i know its frustrating waiting it out until you have the next re-test.

still hoping for the best for your daughter and you.

david

Shell,I hope tomorrow goes well for your daughter and you get some answers that are all good. Will keep her ad your family in my prayers.....Susie

I have had Epstein-Barr as well as Scarlet and Dengue Fever..The Epstein-Barr was diagnosed when I was 17 and had a really low wbc...Then it seems over the years I was susceptible to other infections like this...Some Drs. say that the EBV stays in your system forever just hiding there...

Thankfully it really hasn't caused me any really issues...

I'm sure it's difficult to not worry too much as it's your baby girl!!

I will certainly pray that it's just an anomaly or something as simple as EBV, or vitamin deficiency....

Thanks for keeping us posted and I hope you all get answers soon!

I am so disgusted with my daughters PCP at this point not sure if I want to scream or cry.

I had to take my son for bloodwork today so I figured while at the hospital I would fill out to get copies of her labs for my records. As I was leaving I checked our fax machine and the PCP had called that number earlier in the day, they dont even have that number on her file, not sure how they got it. I called back and left a message. They called me back while we were headed into the hospital and said that her results came back low again and he wants to retest in a month. Of course I said wait, each time she has a low the dr says he is referring to the oncologist if its low the next time and each time he seems to forget what his plan is. So she took the message that I wasnt happy and wanted him to call me back.

So at the hospital I fill out releases to get her bloodwork and they print it on the spot. So here is where I get really upset. Not only has her WBC dropped almost 25% since 3 weeks ago, in the last 3 set of tests in addition to the low WBC she has had a high Lympocyte level and low Neutrophil levels which they did not tell us. In all of my basic research, that is not a good combo. Again, trying not to to read into things and make diagnosis, but as a parent it is very difficult to stay cool.

The EB panel seems to show irregularities (Ithink) but it has no norms so I am not sure how to read that. Some of those numbers are in bold, which usually signifies an abnormal result. If anyone is familiar with those numbers I would be glad to share. Maybe its good that this is showing something verses the other possibilities we have been offered. The arbovirus's test is not back yet.

I am not at all comfortable waiting this out any longer. I dont need referrals with my insurance but I guess its a matter of if a dr will schedule without a referral from the PCP. So far no luck. I called two offices and they wont make appointments without the PCP referral. I left a message with her gyno as well, maybe she will do it for us. The office told me they would accept a referal from that office if the pcp wont do it, but they prefer the pcp. Worst case I have a friend who is a PA, we may end up changing offices.

This really shouldnt be this hard. If the pcp stuck to the same story each time I wouldnt be so annoyed, but this changing plans without any reason and "forgetting" what you told the patient you wanted them to do is just rediculous.

Enough complaining, sorry,lol!

Good luck shell and hoping everything works out, sending you positive thoughts. I'm a new member but after reading this thread felt compelled to say something.
sammy

Thank you all for your concern and prayers. I am trying to keep my cool and not show my daughter any concern, but its getting difficult with all of this run around.

Well, the PCP nurse called back tonight at 7pm, I was very surprised that they called then. She proceded to tell me that the dr is dx'ing, her with chronic Epstein Barr and that that would explain all of her illness (which she hasnt displayed any, and the dr is fully aware, just seems to have forgotten) and that everything else was looking fine.

I reminded her about the wbc. She said that since it is increased since the last test that everything is ok. I told her that I have all the bloodwork in front of me and that he WBC now is less than it was 8 weeks ago, she said thats not the case. Oh my, I have it in front of me. It doesnt take a rocket scientist to look at those numbers and compare them to one another. All she could say was OH.

I reminded her what the drs plan was at the last visit and told her that I expect the referral to be made unless some explanation for the continued issues and abnormal results could be made. Possibly the EB dx could explain the WBC, but not sure if that covers the lympocytes and neutrophil abnormal results as well.

Beyond irritated! Hopefully tomorrow they will get on the ball.

Thanks again for keeps my daughter in your thoughts!

Hi Shell I have been reading all the post, I have a problem with low neutrophils often near the being neutropenic, and high Lymphocyte, It was back in 2000 when I was first having problems with feeling tiredd and run down, it was right at the time I herniated my disk at T-12 and I was put on short term disability, anyway they did the CBC with the whited cell diff and at that time I was border line neutropenic, they they did all the Epstein Bar panel, and they told me I had Mono, I questioned it, as to how I could have gotten it, anyway as time went on, my blood count did not change and go back to normal, so they did the bone marrow bi-op and the good new was it was normal but the bad new was my neutrophils was still low. Fast forward to now, my neutrophils are higher but still allot lower than normal, and I do have times when I start feeling tired and run down, and when they check it the neutrophils are low and the lympho is high. My one doctor that I had at one time was an internal medicine doctor but also a onocologist and he said that some people after they have had the Epstein Virus will just continue to have the lower neutrophil counts.

I do think it is good that your taking this seriously, and I think seeing a hematologist would be a good thing. She is young, and you really do need to find out for sure what is causing this if possible. Please keep us informed ........Good Luck to you!

White Beard

P.S. Shell I started writing this before you posted your last post I am a slow typer.