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

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!!

Thank you! This is very helpful and I will look into all these tests very soon. I'm about to pick up my daughter from camp and drive to Philly for an overnight stay - we have an appointment early tomorrow and what is a 40 minute drive in good traffic can be a 3+ hour drive during rush hour so we don't chance it.

Again, thank you so much for the insights and ideas.