Hi, have you heard of Periodic Fever Syndromes?
There was one lengthy discussion here a few years ago:
and there are articles like this:
I also think there are variations of those known conditions that have yet to be 'discovered'.
It'd be something to get familiar with before the visit to the ID doc. Good luck.
(Still, the likely guess would indeed be a virus.)
Hi: You did not say what doctor you have seen already. It could be something that an infectious disease doctor could diagnose, but you are asking about this on the Leukemia website. Did someone suggest the possibility of Leukemia? Usually when a patient presents with a high WBC along with high platelets a bone marrow biopsy is done to rule out Leukemia. If its not a form of Leukemia, then they would do further testing to see what is causing this problem. How old is your daughter?
I would ask your doctor about seeing an Oncologist just to get her checked out first for a blood disorder. I do have Leukemia, and when my WBC was only 18 my primary doctor got me to see an Oncologist ASAP
I had the Bone BMB done, and it confirmed Leukemia. My advice is just from my experience.
She is 2. They did mention Leukemia once but told me they want to rule out other things first. They are concerned with her blood work but because she is on medicade they cant just send her to a specialist until they retest her. She has been sick 11 times since October. But this is the first time they ever did bloodwork.
Hi, Suzzie. It's good to see that you're here responding to possibly-leukemia related questions. (Both Mocha and I are more geared toward lymphoma.)
I'm surprised that leukemia (notably CML) can result in high platelets, whereas I'd normally associate the opposite --> low platelets, from decreased platelet production as the normal cells get crowded out of the marrow. Do you know what the mechanism is for leukemia causing thrombocytosis? I see that CML is known to cause that, but I haven't found an explanation of how.
OTOH, tending against CML is that CML in the young occurs most in teen males. For very young females, AML is more likely yet AML doesn't cause thrombocytosis, as far as I know.
OTOH, I don't see how PFSyndromes would cause thrombocytosis.
P.S. Mark me if I'm wrong, but a test for the Philadelphia Chromosome (testing for CML) could also be done from a blood sample - though a BMB would also provide more info (on the condition inside the marrow).
Hi Ken: You can have a high platelet count, especially when treatment is not working. My TKI drug is causing a low platelet count for me.
Everyone who is suspected of having CML, should get a baseline BMB before starting treatment. I use to get numerous BMB, until I had a complete cytogenetic response. Then after that I was monitored through a PCR blood test. I am now PCRU for 9 years. I do not have to have a BMB anymore unless they see an increase showing in my blood count which could mean a mutation going on. At this point, they do not feel the disease would progress as long as I stay on my medication.
They are doing and learning so much more every year about CML, and they feel they are close to a cure in the near future.
Do either of you have Lymphoma, or are you doing this to help others because of having a family member maybe with the disease.
If you do, how are you doing?
Suzzie, my father had Mantle Cell Lymphoma, blastic variety, one of the worst kinds. Mocha has posted that she has Follicular NHL.
Speaking of WBC, when my father was taking corticosteriods his WBC would routinely go over 20. AFAIK, that level could be seen in infections also, especially infections that are more than "mild".
She was rehospitalized for respiratory arrest & dehyrdation monday morning. She had blood work redone and her wbc came down to 18. Her platlets dropped from high to low. She has RSV and the croup & low bp and fever. They believe she may have some PID??
Lets see how long it takes to beat this and then see how long it is before she gets sick again.
AFAIK, there's been increasing attention to RSV lately.
And it turns out that increased platelets do indeed result from infections, especially for some reason from lung infections - notably including RSV. The cytokines produced by the immune reaction stimulate platelet production.
As far as the PID, I have no idea - especially since you didn't mention any associated pain.
I hope she's doing better day by day as her system defeats the virus. Then, as you mention, there is the matter of why she is repeatedly susceptible.
As of now she is not much better. Sleeping alot & when she awake she is grouchy. She sweats so bad when she sleeps. Which is new. She had a 101 temp again this morning. Breathing is good though. Her poor body:(
As far as pain she is 2 and it is hard to tell. She had leg pain all night the night we went into the hospital. I assumed this was cramps since she was dehydrated.
I would have thought that cramps from dehydration would only occur when also accompanied by mineral loss - such as from diarrhea. But that's just a guess, I suppose you probably are more knowledgeable on that.
The improved breathing is a big step. I hope she's also doing overall better today.
We had a dr appointment today. Her blood work remains abnormal. Still a 18.5 wbc. Her ESR,CRP,& platelets went up more. Her ESR is 46. She is referring us to a ID because she has not got any better. Back on breathing treatments. Oh & she did have diarrhea from the rocephren. They said her sodium( i think) was almost non exsistant & she was completely dehydrated.
Very low sodium (hyponatremia) can be very bad, so it's important to keep that in mind if she gets diarrhea again. The same with the dehydration. Did you read the news story about the girl in Alabama that was forced to run?
Also other minerals probably were depleted.
Also, the antibiotics can have caused or worsened a fungal infection. Antibiotics can make a fungus worse.
Since she is again worse, I'd call the ID doc and ask to have her appt moved up, that she shouldn't wait and explain the circumstances - that it's getting worse and she was hospitalized. If that doc won't do it, ask your PCP to make the same call to the ID doc.
If she gets noticeably worse, I'd take her to the ER. I'd also take her temperature often. Give plenty of fluids. Is she taking anything to replenish her minerals, especially the sodium?
You're not giving aspirin, right?
Please write back when you have a moment and let us know how she's doing.
There is no treatment for RSV (as far as I know), but only "supportive care", but I'd still want an ID doc to make sure there is nothing else going on - since her RSV was severe enough to require oxygen.
She had iv fluids at the hospital & we just seen her dr today & she is suppose to call me monday & let me know when the ID dr wants to see her & i hope its soon. She doesnt have diarrhea anymore since we left the hospital. She has had low grade fever. It is interesting what you said about the fungal infection. I hope we find an end to this soon!
one odd thing was why antibiotics were prescribed when apparently a bacteria infection wasn't known to exist. But sometimes, a doc tries that when the underlying cause isn't known because usually there isn't such a bad downside that occurs.
As far as fungus, I'd wonder about that relating to the possible PID. A fungus can also get in the lungs, too - though that isn't probable at this point.
Oh would she eat yogurt? That can help replenish the natural things that should be in her intestinal tract, which got wiped out by the antibiotics.
Good luck once again :)
Thanks for the advice & knowledge! I will try yogurt!
Update: after another visit to the ER due to fever(104) & leg pain; she now has neutropenia(sp?) & will be having a cbc 2x a week for 6 weeks plus a bone scan. All labs will be sent to an oncologist,hematologist & ID. I dont know what this all means.
here's one possibility: her little system is producing big amounts of an immune chemical called interferon, to fight the virus. But interferon can also cause low numbers of neutrophils. (Neutrophils are the immune cells which typically fight bacteria and fungus.) Yes, you did spell 'neutropenia' correctly - and the term just means low numbers of neutrophils.
The good news is that low neutrophils don't contribute to the RSV getting worse in children.
here's a second possibility: whenever any blood cells get low, docs will have to suspect that some cancer got into the bone marrow. The bone marrow is where blood cells are produced. When cancer gets in the marrow, it crowds out the normal production of the blood cells. The bone marrow biopsy will tell what's happening inside.
My guess would be that the first possibility is what's happening. We know that when artificially made interferon is given to patients, it's not unusual for them to get neutropenia. It's possible that her naturally-made interferon is doing that, too.
With neutropenia, you have to be extra on-guard to protect against bacteria and fungus - from cuts or whatever. Also, people with viral infections in the lungs are more susceptible to then getting a bacterial infection in the lungs. I'd be on the lookout for signs of that.