We’ve been working on Edward’s anemia for 2 years now. It’s not severe, but he’s up to three 28mg tablets of ferrous gluconate a day (from a bottle marked “WARNING: Accidental overdose of iron-containing products is a leading cause of fatal poisoning in children”) and his iron levels have finally gotten as high as “just below normal.” Meanwhile, he is having some of the digestive issues you might expect from three iron tablets a day, and also he throws up every few days, and also he tires very easily.
I managed to croak out “Could this be…something scary?” to the pediatrician, who thought not, and said that the (thousands and thousands of dollars of) blood tests have not shown any indications of Scary Things. Edward is just not absorbing iron well, for some unknown reason.
The pediatrician has been hesitant to refer us to a pediatric hematologist. My guess is that this is partly due to the distance to the nearest one (an hour and a half’s drive if no traffic, and in a Scary City with tons of traffic), and partly due to the way Edward’s iron levels aren’t TOO bad: they ARE just below normal. But with this latest batch of test results, I said, “Yes, but…they’re just below normal with three iron tablets a day. That seems like…a lot of iron.” (If you are picturing me saying this in a voice that was firm and reasonable rather than shaky and meek, this is your chance to re-read it.)
And so now we’ve got the referral. This means another round of: (1) call insurance company to find out who’s covered; (2) call covered doctor’s office to make appointment; (3) call pediatrician to have referral sent over; (4) fill out one million pages of paperwork for the specialist; (5) remember I forgot to tell pediatrician to also send previous test results. And since we just went through this with Elizabeth’s asthma/allergies (the twins are sticking to medical issues starting with A), and then got a letter from the insurance company saying “We never saw a referral, so you owe the doctor $1,045!” (I had a copy of the referral in the mail within 30 minutes, addressing the envelope with adrenaline-shaking hands), I’m reluctant to start it again. But I suppose I will have to woman up.
It is particularly stressful because it appears that all pediatric hematologists are actually pediatric hematologists/oncologists, and I don’t really want to dwell on that, do you? Also, I am looking at this list of pediatric hematologists/oncologists from the insurance company’s website, and how on earth am I supposed to CHOOSE one? Each doctor is listed at several locations, too, which is confusing me—and how to know which locations are “best”? Here’s what I want: a NICE, SMART, EXPERIENCED doctor who will FIX THIS and also won’t make me feel like an over-reactive, no-perspective-on-REAL-problems parent for bringing in a child whose iron levels are .5 below normal (with three iron tablets a day).
If all the pediatric hematologists are hematologists/oncologists, then it seems to me that you and Edward will make this doctor’s DAY! A kiddo with ONLY an iron issue and no cancer! Hooray! Please note: this is not meant to diminish the seriousness of Edward’s problem, but rather to suggest that the hematologist will be delighted to see a kiddo who is (comparatively) so well off, and will fit him in ASAP and give him all the special attention and the best care possible.
I see a hematologist/oncologist and while the waiting room is horribly depressing, the Dr is not. He is very pleasant (reminds me of my brother actually) and he does always say to me–I really like seeing you! You are the healthiest person I see all day–you are healthier than me! (Thankfully I only see him once a year)
However, I would not expect that you will get in to see this dr quick–I think I waited 3 months and I have a fairly easy to deal with blood disorder (but have been very stable too).
Persevere on! You do need an answer and perhaps yours will be like mine and a) will have read all the files before hand! and b) will have an answer that isn’t on your Pediatrician’s radar.
At this point I would absolutely go forward. Use your Mom radar it hasn’t failed you yet.
My son refers to it as Mom-ing up when I have to break out the Momma Bear. It’s a super human strength we all have.
I’d ask around for a referral. The mommy information network rarely fails me.
Exactly! If you’ve lived in your community long enough, you probably know several people who are medically connected (i.e., work at hospitals, univerisities, other doctors/nurses, therapists, etc.). There are also website that rate doctors.
My middle “kid” (only a year out of college) is now working for the research and education department of the local hospital system, so is around several well-respected doctors and nurses. Anymore, if something comes up (like when my husband needed a neurosurgeon), I talk to him and get their feedback.
BEFORE I got to your last paragraph I was so pleased with myself that I would be able to warn you in advance that hematologists are also oncologists, so I’m glad you already know. I have a mysterious blood ailment (not low iron) and don’t need to go more than every year or so now, but went often for awhile. My Dr. also had a Fellow (as in post-doctoral fellow, I guess, not nice gentleman) working with him and the fellow at one point told me, cheerfully, “I got to present on your case to my entire class!” Gosh do those teaching doctors and their students LOVE a mystery. SO, if possible, and covered by insurance, I’d actually recommend trying to find a teaching hospital since you seem to have a bit of a mystery on your hands, too. (Oh, and his fellow med students couldn’t figure me out, either!) (But all is well, so no worries!)
Your pediatrician just gave you paperwork and didn’t give you a list of suggested doctors? Is that what he did for Elizabeth’s asthma/allergies too? That’s pretty weird. In any event, I suggest you look at the closest teaching hospital’s website for the hematology department. Check out the list of doctors who specialize in peds to make sure they take your insurance, and then call the department appointment line to get the first available appointment. Hematologist are generally really nice (my father-in-law is one), so you’re going to be fine.
Allergy/asthma is a common referral and there are plenty of local practices who handle it, so he gave us a recommendation for that. Pediatric hematology is unusual and distant, and he didn’t have a favorite so he didn’t recommend one. It didn’t seem weird to me. I was glad he didn’t just recommend whoever was “in-network” or whatever, but was instead frank about his inability to recommend in this case.
Hi,
I am a pediatric hem/onc RN and where I am working (Seattle Children’s), there are a lot of hematology/oncology docs, but each actually specializes in one major area. So our website would list a lot of names, but there are only a handful that would be the main person who sees kids with hematology only issues. And there are even more subdivisions at big hospitals, like hematologists who only work with kids with sickle cell disease, etc… Calling the clinic and saying you need to figure out which doctor treats patients with anemias would probably narrow down the list a lot. Good luck!
I am very glad you’re seeing to this because scary health things with kids will shorten your life faster than they’ll shorten theirs. On the up side, I remember my mother saying “Yeah, I’ve had this sharp pain in my head off and on for a year now, and I figure if it hasn’t killed me yet, it probably never will.” If three iron tablets have kept the anemia sort of at bay for this long, they probably will continue to do so. And yet (here please circle back around to the first sentence)….
Oy. Oh, honey. This sounds stressful.
I have no idea how to pick a doctor. Go with the one who’s name you like best. That has to be a good plan of action.
(Thinking of you.)
Ha! I like the way you think! I was like, “Hm, this one has the same name as my mom…”
I am SURE you have gotten enough hand-wavey half-advice from the internet and I’m sorry to be adding some of my own, but I had very low iron and found that I responded really well to a liquid iron supplement. My doctor suggested Palafer, which is probably called something else in the US (check here? http://www.drugs.com/cons/palafer.html) and it boosted my iron numbers the way that iron tablets never did.
The downsides to the liquid supplement: it’s expensive, it requires, for me, to take an occasional…schmool schoftener, and if I’m not careful about brushing my teeth after I take it it can sometimes leave a faint stain. (Not permanent, just annoying.)
I am sorry you are dealing with this and I am sending you lots of useless internet hugs!
Not useless at all! We did try a liquid, but it was so much more expensive and didn’t lead to an improvement, so it may be he has a different issue.
My goodness, I love the internet. I just learned SO MUCH simply by reading the comments here. I hope all these helpful insights get you guys an appropriate doctor with a minimum of phonecalls and paperwork!
Feel free to ignore this as the unasked for advice it is… but ditto on the liquid iron. Pills did nothing til I took Floradix, which is a liquid iron supplement sold at health food stores. The pills just didnt get absorbed into my body.
Depending on the city size, even Yelp has doctor reviews. And I second what someone else said: look for a university medical center, if available.
Have you had his vitamin c and b checked? Lack of vitamin b12 has to do with pernicious anemia. Vitamin c is essential for absorbing iron, regardless of the iron source (meat, tablets, whatever.) My daughter’s pediatrician made sure that I eat steak with lemonade or take iron with a glass of orange juice or take an iron tablet with a vitamin c at the same time.
Also what about ferrous sulfate? It is just a different iron that maybe he could absorb better.
Yeah, I have issues with B vitamins and take a B multi (which has C also) which makes me not anemic without actually taking additional iron. Yay B vitamins!
I’ll chime in to also recommend Floradix if you haven’t already tried it. It worked way better for me than the tablets did.
And, good luck finding a hematologist and getting to the bottom of this!
In regards to choosing a doctor-and keeping in mind, I don’t know where you live-the big scary city the doctors are located in might have something like my city has. I live in St.Louis and about once a year, a list is published by a local magazine that features the areas best 100 doctors, voted on by their peers and patients. The big, scary city you were referred to might have something similar.
Side note: I was very moved by your post not long ago about your friend with the teenager who was cutting…is there an update?
Oh, good idea about looking for a “Best of” list! I’ll check into it!
Things are going well with my friend’s daughter; no official update as yet, but going well.
I have also had trouble getting my kids’ iron numbers up and when they finally hit and maintained “close to normal” I stopped supplementing bc the side effects of the iron supplement seemed to be causing more problems than the low iron itself. I really appreciate your struggle – I felt like no matter what we did right — combining with high Vit C foods, avoiding dairy, etc. my daughter just did not seem to absorb it. We were also up to 3x per day. When she got close to normal we just stopped.
my question is for those that took Floradix — I could NOT get that stuff down. The taste was so, so awful to me that it was an automatic gag reflex and despite spitting it out I still tasted metal for hours. How did you manage to keep the Floradix down?
TIA,
Jen
I used Floradix for ages and got around the taste issue by putting it in a glass of orange juice. Worked pretty well. Nowadays, I use Spatone, which has virtually no taste because it’s essentially iron rich water.
c.
I’ve found when looking for doctors (which I was just doing last night, as it happens!) that if you Google their name, you can usually find their entries on doctor rating websites like Ratemymd.com or Healthgrades.com. You can just go to those websites, of course, but it seems like Google is faster and more efficient and will pull up every website where that doctor might be rated at once. I wish I had looked up my daughter’s first urologist, because I would have saved us a year of terrible appointments if I had just insisted on the other children’s hospital in town.