Does declining CBC matter, or only once fully out of range?

Welcome to Connect, @lorenzom. My heart goes out to you and your little girl. As a parent there’s nothing worse than seeing one of your children suffering and feeling so helpless as to make it ‘all better’.

Your daughter has a complicated history and it sounds as though she has a really good team of specialists taking care of her. But since there is no definitive diagnosis, you could ask her specialists, is this consistent with the condition they’’re treating her for.
If not, I really would think you’re wise in seeking an opinion of a hematologist. You could have her current doctors forward her records for a quick and simple consult to see if they spot any red flags that would be a cause of concern in your daughter’s test results.

Based on my history of going through a blood cancer, it’s not unusual to see spikes and changes in CBC’s with some ups and downs. Which at the end of the day can be normal as we don’t usually track CBC’s closely. But in your case I understand the concern as you’re seeing downward linear trend. Given this, if for no other reason, a consult with a hematologist at a minimum, would give you peace of mind.

I sure hope you little you get some answers and relief for your little girl’s eye condition, along with her other ongoing symptoms. She is a little trooper but at 5, this is an awful lot to be going through. Will you please share what you find out with me?

Thank you for the reply! Currently, there is no definitive diagnosis. She's on prophylactic zithro for respiratory anti-inflammation benefits (per pulmonology) and to prevent bacterial infections (per immunology), as well as some other breathing meds and chest percussive therapy. She develops "breakthrough" respiratory infections and gets treated with 21 day courses of stronger antibiotics. Recently steroid eye drops were added for non-specific eye inflammation (thus a trip to Philly's Wills Eye Hospital later this week, to maybe get a more definitive answer). With all of this she is not a "sickly" kid and is thriving otherwise, muscling through health issues as best she can... which also leads to the occasional doctor telling us our kid is so "healthy looking", so smart and talkative that clearly she must be faking to get attention (even with documented chronic low-grade fevers, and multiple office visits with 104+ fevers, "bad lungs", etc).

She had a bronchoscopy at the insistence of an amazing pulmonologist (even though she had limited breathing symptoms) and they found definite inflammation and nodularity. She's had 3 ENT surgeries and ENT sees inflammation throughout as well, but ENT can't offer more help. Immunology does not like the clinical picture but her immune labs are not quite "low enough" to be definitive, and immunology at least hints they do not feel the final answer will be immune (though we are waiting for some repeat testing, and deeper tests may ordered in August). So all roads seemed to be leading to autoimmune or auto-inflammatory, but so far the usual rheumatology tests are not netting a diagnosis and the big culprits (ANA and such) are negative (of course there are more tests in the works).

It just "feels like" - and maybe this is grasping at straws - there isn't much anything more systemic than blood itself! Luckily we have amazing insurance and a great local health network so I'll give hematology a call and see if they'll see us without the need for a formal referral (they have full access to our records in the network).

Thank you for your help and compassion!

I don’t feel you’re grasping at straws. You’re right, there is nothing more systemic than blood itself. Some of your daughter’s symptoms of frequent infections, unexplained chronic fevers and her downward trend in blood numbers could be a result of those low counts. Especially if there is a decline in her neutrophils.

This may seem a little forward, but through the course of all I’ve experienced the past five years with 100+ CBC with differential. I’m curious to what your daughter’s numbers are. Would you mind sharing them with me? ( don’t include any personal information) But I’d like to get a sense of where they fall into line with my experience.

Certainly, and I appreciate the conversation and your help.
Hematocrit: From 39.2% now at 34.3%
WBC: From 12 now at 5
RBC: From 5 now at 4.2
Platelets: From 450 now at 311
Abs Neutrophils: From 7 now at 1.9
Abs Lymphocytes: From 4 now at 3.2
Abs Monocytes: From 1 now at 0.5
Abs Eosinophils: From 0.2 now at 0.1
Abs Basophils: Steady at 0.1

One should look at the trend, over time, or averaging, and not react to the occasional variations, or spikes. You take the endpoints of a data set and plot the curve, or the declination/inclination with what is between. If you see a trend, that is telling.

Hi @lorenzom, After taking a look at these numbers, I’m not sure a hematologist would be able to offer much more input at this time…though a consultation would go a long way to ease your mind with covering all the bases in trying to find the cause of your daughter’s illness.

Your little girl is on some strong antibitotics and medications and she’s been fighting infections all along this past year. It would not be unexpected to see skewed blood results with her continued infections and inflammation. There are also certain drugs, including some antibitotics which can reduce neutrophil counts. The white count and the neutrophils being suppressed could speak to either an autoimmune or inflammatory issue. I can understand why her rheumatologist is suggesting an active surveillance period.

There does seem to be an overall downward trend in her blood numbers. But you’re seeing peripheral blood results which could be looking more at effects than causes. A bone marrow biopsy could offer a more definitive picture regarding what is going on with her bone marrow, if anything. But that may be premature at this point. However, a peripheral blood smear, if it hasn’t already been done, might be a consideration. This test can tell the doctor about the health of the blood cells while looking for any changes in the number and morphology of her circulating blood and platelets. But certainly a hematologist would be able to give you the best advice as to whether this is warranted at this time.
Has she had a peripheral blood smear?

Thanks again. I agree with the necessary wait-and-see, though I am hoping there's a bit of a shortcut as she'll start kindergarten in less than 2 months (or at least we'd like her too). Thursday morning we're take her to a specialist eye hospital because her eyes are excruciatingly painful, yet 3 local ophthalmologists all differ and their opinions and treatments.

A blood smear has never been ordered. Of course in my researching this week everything indicates a blood smear is sensible (and cheap and easy), so I'll ask they tack that on to her latest lab order. At the moment, we're redoing labs (and adding a slew of new ones) at the end of July, so it's not an overly long wait (if the eye pain can be lessened at least).

If you don't mind me asking, in your experience is it well received by doctors for a patient to suggest adding a test (the blood smear), they don't particularly care, or it can strain a relationship (doctors are human)? I'm never hesitant to do so during an office visit, though at times I feel a bit "shy" to do so by messaging. I guess I don't want to be steering things too much, but then again I've had to vigorously do so to get us to the point we're at already ... the understandable response for the first year was "kids get sick often", but that changed drastically as soon as I pushed and her first immune tests came back very worrisome. It's like there's an imaginary line I feel I can't cross too often, crossing from the allowable patient's strong advocate into the undesirable 2nd-guessing parent who won't take advice.

And truly, sincerely, and with all my heart thank you for your help! Clearly you know from experience but you also are obviously very intelligent and kind. Your remarks about peripheral vs marrow alone closed the loop for me on some items I might have been misunderstanding previously.

There will always be a doctor or two who feel their toes are being stepped on a bit. I’ve had that happen to me with my PCP and thankfully my husband and I kept pushing because my situation turned out to be dire.
My specialists, on the other hand, welcomed input and we discussed my treatment plans openly and honestly. Questions were never declined and concerns were never dismissed. It’s important that we respect their education and experience. But it’s ok to also ask questions. You can assure your daughter’s doctors that you’re not trying to be helicopter parents but you’re really feeling helpless and don’t want to miss anything.

Here’s an example I can give for how my ‘helicopter’ husband would handle adding tests to blood work. I had a bone marrow transplant that required hundreds of blood tests over the course of my treatment and beyond. In the initial months right after transplant it’s critical to avoid any viral infections. So there were frequent tests for CMV, a virus that could be serious at that point. Sometimes my husband worried that too much time went between tests. (It didn’t but my husband was a worry-wort) So during my daily exams he’d say something like: “Would it hurt to get a new CMV reading added to her blood test, just to make sure nothing’s going on with that?” My doctor would either say, “That’s a not a bad idea so, let’s add that onto her CBC.” or “CMV was still undetectable last week. Let’s give it another week, then add the test.” We didn’t step on toes but it allowed my doctor to make the choice and my husband to hear the answer why it’s not necessary this time. Gave respect to the doctor and validation to my husband. Win/win. (As the patient, I was just along for the ride! LOL).

I think you’ll get the ‘feels’ when you near the line that you don’t want to cross. But, you are also the advocate for your little girl’s health. So if you’re concerned something may be missing from her treatment it is certainly in your prerogative as a parent to bring up a new subject.

I’m still reeling at your earlier comment from doctors about your daughter faking illness and trying to get attention. That would be a doctor who would never see my little girl’s face again! Your daughter clearly has a challenging medical condition. It’s taking its toll not only on her but also on her parents. Doctor’s should never be dismissive and I’m so sorry you’ve had that experience!

It does sound to me as though you have a really good team of doctors that are taking this matter seriously and I think there is mutual respect between parents and physicians. You can be matter of fact and assertive while being respectful. But this is your little girl, so finding answers is paramount.
Gosh, I really hope you can get some relief for her eye condition next! That sounds awful. Please let me know how the appointment goes.

Just a few comments to hopefully help you and your daughter. A hematologist is a must IMO as is a peripheral smear which can be ordered by any of her docs. Autoimmune disorders are often paradoxically combined with immune deficiency that she apparently has, making her prone to infections. She would also benefit from a serum protein electrophoresis blood test which any doctor can order. This detects abnormal proteins from bone marrow that may be related. The Avise CTD, connective tissue disease, blood test ordered by rheumatologist is more sensitive than the standard autoimmune antibody tests like ANA and RA, and tests for many AI disorders, so helpful in determining which if any are brewing. Your “gut” is an extremely important part of your tool box as a parent and any good doctor will respect your “gut” and act on it. I usually preface my suggestions for additional testing by saying something like “sSo what would you think of adding/checking …?” to preserve egos. Or “I have heard …might be helpful , is that a test we could do?” You plant the seed, they decide whether to do it. With kids every blood draw is traumatic so combining and anticipating next steps (sometimes an extra tube drawn for add ons) helps. Most labs keep serum 7 days for add ons, a crucial window of time.
You are being incredibly sensitive and responsible, taking care to research and advocate for her. I hope you get answers soon, effective treatments and she gets better quickly! Hugs!!

My heart breaks for you. As a mother, we give life and want to do everything we can to protect our children. Here are a couple out-of-the-box thoughts (I am not a doctor):
1. Do you have an open minded PCP/ pediatrician?
2. Have you looked at complementary therapy providers? These professionals work with your health care providers to provide support (supplement and other therapies) as needed. IE: Saunas, red lights, etc., that can SAFELY support her immune system.
There is a lot out there that cannot be explained and yet, cannot be discounted. IMHO, don't believe anyone who PROMISES a “cure”.
Prayers and best wishes!
Sherry