January 14, 2012

Anemia Frustration

First a discouraged post, and now a frustrated one. And kind of boring, too: I can barely get through the proof-reading of it.

Edward. To review: at his six-year check-up this summer, he hadn't grown since his five-year check-up, and he had also lost a couple of pounds. The pediatrician sent him for blood work, which showed anemia: his iron is supposed to be mid-11ish at minimum, and he's low-9ish. That doesn't sound very severe to me, but apparently anemia can indicate Scarier Things, especially when combined with not-growing.

First the pediatrician had us add an 18mg iron supplement to his diet, and we started giving him citrus fruit/juice whenever he had the supplement (or one of the iron-fortified cereals he eats daily) (vitamin C helps the body absorb iron), and we were careful to separate all the iron stuff from calcium (calcium anti-helps the body absorb iron).

We re-did the blood test after two months, and it was the same. So the pediatrician added an additional 14mg iron supplement to his diet. The 14mg and 18mg supplements are each listed as about 100% of the RDA for his age, plus he's eating the iron-fortified cereal that's listed as another 100% of the RDA. Plus of course he gets iron from other foods such as meat and legumes.

We re-did the blood test again this week after another two months, and he's budged up two-tenths of a thing of iron---so, if it was 9.1 before, it's 9.3 now. The pediatrician says great, it's working, let's add another 14mg of iron, for a total of 46 mg of iron supplements per day.

I'm thinking that a 200% RDA iron supplementation with a diet that already contains a good deal of iron-fortified cereal should have resulted in more of an improvement than .2, after over FOUR MONTHS of it. I realize it can take awhile for iron levels to rise, but it's BEEN awhile now.

When I said to the pediatrician that this worried me that so much iron was giving us so little result, he said no, it's looking good, and may just take time. Which, I knew it would take some time, but this seems like ample time. I feel frustrated because this has been six months and three blood-draws and three co-pays to hear the results, and I'm getting uncomfortable with this level of iron supplementation. Plus, Edward still hasn't gained any weight since age five. And I'm worried because what I've read online is that anemia that isn't affected by diet is the kind to worry about, so if there's something else going on I don't want to just let it KEEP GOING ON.

Here's my plan. I'm going to make his 7-year check-up with the other pediatrician in the practice. (We see both doctors, just whoever's available, so this won't be weird.) We've been seeing the same pediatrician for this whole iron thing, which makes sense so that one doctor can be tracking the story. But if I see the other pediatrician for the check-up, I can run it by him and see what he thinks.

I'm also hoping that some of you have experience with this and can say things like "Oh, it's because that level of anemia is like a 99.5 fever: it's not really anything to worry about" or "It seems like .2 wouldn't be significant, but actually it is" or "WHAT? This is nuts! The absolute cut-off for iron supplements at his age is 30mg!! Something is wrong here!"

61 comments:

d e v a n said...

I wish I could say one of those last two things, but instead I have to say that I have no idea. However, that DOES seem like a WHOLE LOT of iron supps for his age and it seems like the ped could do some other kind of testing instead of just re-testing the iron. And, no .2 doesn't seem like that much to me, but again, I don't have real knowledge of this but still... it doesn't seem right.

Bitts said...

This may not be terribly helpful, but my mother was SEVERELY anemic and it took 18 months of prescription iron supplements to get her level back up to normal. She still has to take waaaay more than 100% of the RDA to keep her iron up. I don't know if the experience of a 65 year old woman translates to a little boy, though.

FWIW, lead exposure is also related to anemia -- is it possible he has been exposed to lead? Have his lead levels been checked? IIRC, your house is not old enough to have a lead paint problem, but he could have been exposed in some other way. I learned about that connection after we lived in a house with lead paint for about 6 weeks and had to have my kids tested when we moved out.

Shalini said...

That does sound like A LOT for a little boy. I wish also that there were more doctors in your town to cross-check with (or abandon, like the dumb UTI thing).

Every time my blood tests have come back indicating anemia, it has only taken about three months to show an improvement (except in pregnancy, when it only took two weeks).

But! I am not a child, so maybe it's different? It seems from all the doctors I know that kids are so completely different than adults in medical terms. Maybe there is a very smart pediatrician who reads your blog?

Farrell said...

I don't know but I do know you are the mother and if you think something else is going on, or what they are doing isn't working, by all means press on. Get a second opinion, for sure.

Sarah said...

The only experience I have with this subject is what we learned during the nutrition studies portion of my DONA training, but they talked a LOT about iron supplementation because anemia is so common in pregnant women, but iron supplements often cause constipation problems, esp. for pregnant women already kind of prone to constipation. So anyways... we talked a lot about ways to bump up iron without taking regularly prescribed iron supplements. For what it's worth, lots of food junkies and nutrition "experts" alike think iron supplements are mostly a waste of time and money, because they are so rarely well absorbed by the body and can mess with your digestion- which is why your stool turns black when you're taking them. Sorry, gross, I know.)

Anyways! One supplement that IS readily endorsed by almost all midwives, doulas, doctors (including mine) and pharmacists is a liquid called Floradix Herbs plus Iron. You can get it at most health food stores and lots of grocery stores, and a lot of people who haven't had success with pills find that this liquid ups their iron count a lot better. I'm not honestly sure why it's better, so you might want to look into it yourself.

Food sources: fortified cereals aren't BAD, but iron fortified foods generally use a phosphate compound form of iron that isn't soluble in the human digestive tract, and they can't really be counted on as reliable sources of iron. Natural sources like nuts, dark leafy greens, and yes, red meat (in fact especially red meat) are far more readily digested than any supplement. Another surprisingly good source of iron is raspberry leaf tea. Don't know many six year olds that'll drink tea, of course, but if he will, hot or cold, it's worth a shot.

maida said...

I am not a doctor and know very little about this - except to say that when I took iron supplements, they messed up my digestion something ridiculous, and my doctor told me that I _should_ be supplementing aggressively (3x/day, don't remember the size of dose) but that I should go for 2x/day because it was better to fix it more slowly than to stop taking the pill because of side effects.

You don't mention side effects, so maybe his doses aren't so high yet? But I don't know. Kids' bodies are different - and not growing in a year seems like a bad sign. I like your plan to get a second opinion. Hope it gets worked out quickly.

Annie Pazoo said...

I believe the anemia may be a secondary effect and not the problem / cause. Not growing for a year? That's the concern.Get him tested for gluten sensitivity. Regardless of the result I suggest testing a strict gluten free diet AFTER the test. Many doctors miss seeing signs of celiac. Celiac is frequently responsible for poor vitamin absorption, anemia, and lack of growth.

Heather R said...

I had heard/read the same thing about iron being absorbed more efficiently when it comes from natural sources, and best when it comes from animal sources, like beef, chicken, eggs, etc. BUT (and this is not to alarm you because I am not a doctor, but I am a mom), I would really be pressing this issue strongly with the doctors and demand a second opinion with a specialist immediately. If it were my child, I would want an answer NOW and enough with all of this waiting and wondering. The lack of weight gain along with the anemia would make me wonder WHY, given that none of his siblings are having the same issue.

Sara said...

This sounds so familiar, even more so to my parents who I just read this too. I have a blood disorder that I was diagnosed with when I was two that inhibits my ability to absorb iron from food/pills. I don't know how your insurance works but I'd try to get him into see a Hematologist. A nine doesn't seem low when you look at the numbers but you'd be amazed at how shoddy you feel. With transfusions (blood and Iron) we usually can keep mine around a nine, and if I drop to seven I can totally feel it. Not saying Edward feels any differnet. A few years ago, my hemaglobin had dropped to a 3, but because it had dropped slowly over the course of a year and not quickly like from blood loss I didn't really even feel bad. It was funny because I'd driven to the doctors office to have the test and then went to walmart and bought 200 dollars worth of stuff we needed at the house when I recieved the phone call to return to the hospital and have someone drive me and I was all, ha, haha, so I drove there and they met me at the door with a wheelchair hahahahaha!

So to recap, I'd try to get him into see a Hematologist. Nine may not seem low, but when your supposed to be 11-15 nine can actually feel pretty darn rough. And, poor Edward. Also, since they keep having to draw blood and I'm sure Edward doesn't love it, ask for a Beesting before hand. You might have to demand it because some people are like, naw this will only take a SECOND and to get a beesting we have to go draw up lanocane...but they use this teeny tiny needle you can hardly feel and inject the area with lidocane and then he wont be able to feel the blood draw at all, which is awesome specially if they miss or have to dig. Poor poor kiddo.

Marie Green said...

When I was anemic (still am SLIGHTLY), my dr said that diet wouldn't effect it AT ALL once it was that low. I think mine was 8pointsomething. It took a year of supplements for it to raise to normal levels, but it's still on the very low end of barely acceptable.

I agree w/ what Sarah said- the liquid iron floradix or whatever is better and more easily absorbed. And she's right about iron-fortified foods too; our bodies can't really absorb that iron, so it's more of a "this is healthy" sales gimmick. Eating an iron-rich diet will help some, but it's more important to find a supplement that works for him.

I took the liquid ones while pregnant this time, so that I wouldn't get anemic again, and I found them not-too-gross, as I was expecting LIQUID IRON to be really yucky. I get them at the food coop in the healthfood section. They are flavored, like berry I think.

Anyway, I think based on what you've explained that the iron sources that he's taking are not being absorbed well, and not that there's something bigger going on. Also, that much iron supplement must be making him constipated? Poor dude.

Heather R said...

Also, I just the saw the comment before me and wanted to add that many people can have a gluten sensitivity but not "celiac" and there is no test for that except to remove it from the diet and see if there is an improvement.

Marie Green said...

I have some floradix left over.. .I wonder if I could mail it to you? Do you think liquid would survive a winter-mailing?

Maddie said...

I'm not an expert (and I mean that in a way that actually expresses my amateur status and self learned knowledge, NOT in a way that expresses that although I am not an expert I consider myself to be one and think that everyone else should as well), BUT my parents raised us as vegetarians from birth, at a time when doing so made them targets of comments of the worst sort from doctors and other "experts," so I've had some experience with the iron issue and I do know that children only absorb something like 10% of the iron they take in. This is especially true depending on the form of that iron. Ferrous sulfate and ferrous fumarate are two of the most common ones used for supplementation (they're fairly common and inexpensive), but they are not absorbed particularly well (at a rate of about 2-14%), even in those who are not children, who ALREADY aren't absorbing all the iron they take in.
Ferrous gluconate is one that is supposed to have a higher rate of absorption and supposedly there is an iron glycine that was recently developed and has something like 70-75% absorption rate (though I think the rate that high was done in testing paid for by the company who patented it). However, there is also ferrous bisglycinate, ferrous succinate, a difference in organic/non-organic iron, polyiron, and the difference between heme/non-heme iron.
So, whatever any of this means to you (and I know there's a math medal in your history somewhere :)), but let's say that only half the iron Edward is taking would be absorbed by adults (thought depending on the form he's taking it might be much less), and then, because of his age he's only absorbing 10% of THAT. It could really cut down on the amount that is available for his body to use, thus the very slow rise in his levels.
You can also try adding in more sources of iron in his diet, such as dark leafy greens, or even cooking in cast iron cookware, on the theory that every little bit counts.
Anyway, it gives you some more questions to ask his doctors and maybe some more options before Scarier Things might be in the picture.
Good luck and I hope that you find an answer soon!

Today Wendy said...

I'd be worried too, but I think I can see why your doctor isn't. Like several people have said, your body doesn't absorb iron from supplements very easily, but the fact that his iron levels have gone up at all indicates that he's absorbing *something* even though it isn't much. On the other hand, being low on iron feels absolutely awful.

Left to his own devices, what does Edward choose to eat? Sometimes that can be a hint. Your body often knows what it is missing. A friend of mine wasn't absorbing B12 properly and pretty much never wanted to eat anything that didn't contain B12 - which meant he wasn't at all interested in vegetables and just ate meat.

Good luck. I think your plan is sound - get a second opinion at his next check-up - but you can also ask what the long-term plan is if Edward's weight doesn't start increasing, and if his iron levels don't reach normal. Get a sense of how long the doctor thinks is reasonable and healthy. Also, you might try bringing Paul along for that check-up. The doc might respond to him differently, or he might come up with other questions to ask. At the very least, it would be back-up for you.

Beylit said...

Lots of good advice already and really I don't know that I have anything terribly useful to say. When I was Edwards age I was severely anemic. I can remember I took a ton of supplements, and every time I saw the doctor he made me take more. My body simply doesn't process iron well and so they had to throw excessive amounts at me to make any of it stick. It took years to get my levels acceptable. The iron will just take a lot more time than it seems it should.

Tess said...

Oh man, this IS a frustration.

Both of his issues (weight and iron status) make me wonder about gut/absorption issues? Like the previous commenters mentioned, could it be a food sensitivity (gluten, dairy, soy, other?) causing a leaky gut?

My iron status (also my Omega 3 status and a few other micronutrients--magnesium, etc) improved when I stopped eating gluten. Doesn't mean it's gluten for him, but maybe another gut irritant?

Uff, this is so tough. That DOES seem like a lot of iron for a little kid.

Lauren said...

I don't know anything about iron but recently went through a situation with my mother-in-law where getting a second opinion probably saved her life. I think it's a great idea to see the other doctor next time.

And maybe do some internet research. Obviously you have to be careful about whose webpage you trust, but there are some good resources (MedLine or the Mayo Clinic). If you have more pointed questions to ask it might help.

Good luck!

Unknown said...

I would not hesitate to get a second opinion. Medicine is way more of an art than a science and another doc may have more experience in this area. Your doc should be fine with it and if he isn't then it's his issue, not yours.

clueless but hopeful mama said...

Reading through these responses made my head spin! I can only imagine how you're feeling, dear Swistle!

I would be asking for a second opinion STAT. I would probably go with someone outside of ped office, like a Hematologist. But I also wonder about the leaky gut/food sensitivity issues as I have two friends with these issues that manifested in childhood in similar ways.

I hope you get some answers SOON.

Lindsay said...

After I tested way low for vitamin d, my doc recommended I take 2000 iu per day which is 500% the rda (although they sell bottles in that dosage). I wonder if for people who are naturally low on something exceeding rda is necessary and fine. Your plan sounds solid swistle, I hope u get good news soon enough.

Sara said...

I was severely anemic when I was pregnant and had to eat and take beef liver tablets with floradex. It helped but I still had to be monitored every appointment (so many blood draws). Maybe go straight to the iron source and try to get some liver into his diet if possible.

Superjules said...

My board exam is coming up, so thank you for this opportunity to review the topic of Anemia :)

I'm not sure if this will make you feel better or not, because I'm not entirely sure what you mean by 'anemia that isn't affected by diet is the kind to worry about.' That's true-- anemia that doesn't change with iron supplementation is worrisome, but that is often because it is not iron deficiency anemia in the first place (it is instead anemia of chronic disease, or pernicious anemia, etc). The lab tests Edward had done (presumably CBC and iron levels) would rule out other types of anemias based on the size and characteristics of his red blood cells. So, I'm not sure if you WERE worried that perhaps Edward has some other type of anemia that isn't affected by iron supplementation, but in case you were- that's very unlikely bc the doc would know that Edward has iron deficiency anemia based on the lab results.

It sounds to me like your doctor is not worried about scary causes (such as a GI bleed) of iron deficiency, and that is because Edward doesn't have symptoms of those (such as vomiting up stuff that looks like coffee grounds, or having maroon or tarry BMs). BUT, if you are worried about a Scary Diagnosis for the etiology of Edward's iron deficiency, I would certainly agree that you should see the other doctor in the practice. It never hurts to have a fresh pair of eye on the issue.

Kate said...

I'm *not* a doctor, and I don't play one on t.v.... but I just texted my sister-in-law, who's a pediatrician, so hopefully I'll be able to get back to you with an answer sometime soon! Helpful connections FTW!

Guinevere said...

I was posting about lead, but I'm happy someone beat me to it. I doubt it's the only problem since you have other kids with the same environmental exposure, but it's something I would want to check out as part of the picture. Some states (with lots of older houses, especially) have mandatory lead blood tests for kids for this reason, and they tend to rec iron supplements as one of the main ways to deal with higher lead levels.

I'm also seconding the recommendation for Floradix -- staple of my childhood, and it's (according to nurse-midwives we saw) more readily absorbed than other iron supplements. It's also less constipating.

And also, getting iron more from real foods, since iron-fortified stuff isn't that well absorbed generally.

.2 doesn't seem like a statistically significant change to me, but I'd be worried more about the not-growing. I think your second opinion plan is a good one... and I feel for the anxiety of the waiting, and the horror of blood draws. My two month old is having a lot of bloodwork right now (some of it fasting, which is as great as it sounds) and the only thing worse than how hard it is to get blood out of him is the interminable waits for potentially very scary results to come back!

Guinevere said...

Whoops, premature submission. I hope that you can get more answers and not go crazy with worry in the meantime... best wishes to Edward and to you!

Swistle said...

Annie Pazoo- Gluten sensitivity was what they were testing for when the results came back with anemia (celiac was another pediatrician's first guess because of the no-growing)---but no problems with gluten showed up.

Swistle said...

Sarah and Marie Green- Ah! Already this comments section is SO VALUABLE! This explains why the pediatrician was unimpressed about the cereal! And it eases my mind a little, because I was thinking HE EATS SO MUCH IRON from the cereal, HOW CAN THIS BE HAPPENING?

Swistle said...

Heather R- Ah, so just because the results came back "not celiac" doesn't mean I can say "no problems with gluten." I'M SO GLAD I ASKED YOU GUYS.

Swistle said...

Marie Green and Sarah again- He's on a liquid iron right now called...what's it called. Not Tri-Vi-Sol, but something similar. OH, Fer-in-Sol. I wonder if that's comparable to the Floradix, or if they're similar only in that they're both liquids? I'll bet it's too cold for mailing, but we have a good health food store near us where I can look for it.

Kate said...

Okay! She said that it's usually 10mg to supplement, but that for anemia it's based on weight, and that the max is 30 mg per kg (I had to check the conversion, of course; 1 kilogram = 2.20462262 pounds). So 30 mg for every 2.2 lbs.. unless he weighs like 5 pounds, he should be okay.

If my math is correct, which it probably isn't; so check me. But I did get the max dosage from a pediatrician, so if you can do the math, that should give you a good idea of the maximum.

Hope this helps! :)

HereWeGoAJen said...

I don't have any advice on this in particular, but I have found that collectively, the internet is always right, so I hope you get some good information!

Rebecca said...

I don't usually comment on blogs but... I like your baby name blog and I've been lurking here for a while... so I will. I am a doctor and actually specialize in hematology. I think you should take him to a hematologist. Not all anemia is due to iron deficiency (something that is apparently easy for non-hematologists to forget!) and a hematologist can look for other causes, many of which are not that scary (like thalassemia trait) but can't be fixed with iron.

Also, I would want the iron to go up faster than that with iron supplementation.

This is a very common referral to hematology and should be fairly straightforward to sort out! In the meantime, do not panic, there's lots of non-scary things it could be.

Hope that helps!

crystal said...

I am a pediatric nurse practitioner and I agree with Rebecca. It is reassuring that his Hgb doesn't continue to drop and likely this is fairly benign anemia. However, it doesn't really sound like iron deficiency anemia. Usually iron deficiency anemia would respond a little faster to the supplements. I agree that this is unlikely to be emergent but it is worth getting another opinion.

Shannon said...

Have you tried liquid iron supplements? I've heard they absorb better. Good for you for keeping a close eye on this. You're doing what you're supposed to. Don't feel like you need to apologize for that!

Doxie said...

I'm so glad you heard from a hematologist! A second opinion seems in order and it wouldn't hurt to try some of the other ideas while you are at it. Your own sense of well being is very important and if waiting another 6 months is going to be miserable for you and Henry...then go for a referral to a hematologist. You'll all feel better! Take care of yourself, too!

Swistle said...

Rebecca- THIS IS WHY I LOVE THE INTERNET. An actual HEMATOLOGY SPECIALIST commenting!!

Swistle said...

Shannon- Right now he's taking one chewable supplement and one liquid.

Kelsey said...

I would feel a low-level nagging kind of worry over this. And I think the recommendation to have a specialist evaluate things (and/or your idea of the other ped. looking at it) is a good one.

I know this isn't the same situation, but I've realized lately how key it is for us to have an allergist to deal with the food allergy things - our ped. has actually given us some BAD advice/opinions on handling the allergy at school and I'm glad to have a relationship w/ our specialist to feel confident ignoring the well-intentioned, but erroneous, advice from our ped.

I have actually been hoping for an update on the anemia situation and will continue to send good thoughts that you get to the bottom of it and that it is no big deal.

Sara said...

Yikes. I don't have any experience with anemia, but I certainly hope you get some answers soon and that it is no big deal. My 3 year old hasn't grown much--height or weight--lately either, and the ped wants her back in @6 months to check her out. She suggested a thyroid issue, but now that I've read the other comments I'm a little more worried. :(

twisterfish said...

I couldn't read through all the comments, so forgive me if this has been said: My mom was anemic for years, couldn't gain weight, etc., and hardly anything worked after numerous doctor visits. Finally found out she couldn't eat gluten. Went on a gluten free diet and the iron can now be absorbed in her body... it was being washed away before. She feels so much better now.
Oh, and she also has a thyroid issue, which I guess can go hand in hand with type thing.
Good luck.

Doing My Best said...

Oh, Swistle! I'm so sorry! What a worrisome thing =(! I hope you're able to get it figured out soon!!

Yakov said...

I ran this by my husband, who's an internist. He said that the pediatrician should be able to order a much wider range of blood tests before you start going to a hematologist or an endocrinologist. The level of iron supplementation and the minimal response didn't set off any alarms for him. If you want me to email you the list of blood tests he suggested, I can, just so you have some talking points to go over with the dr. My husband also repeated that the anemia and lack of weight gain may be unrelated, and there are many non-worrisome diagnoses. And sorry you and Edward have to go through this!

Sam said...

It has been said previously in the comments, but I'd like to throw in my two cents as well. I do not have celiac, I have been tested for it. However, I do have a gluten intolerance. I was told you cannot test for an intolerance, the only way to check is 30 days of no gluten, then reintroduce it into the diet. If you feel like hell, you have an intolerance. It might be that going gluten free and then retesting his iron is the way to go. Good luck! I hope it is something easy-being gluten free is not.

Sasha said...

I'm a midwife and we have a lot of moms at my birth centre that are anemic. We recommend that they take tissue salts: CALC PHOS combined with FERR PHOS to help with iron absorption. Good luck.

CARRIE said...

I can't give any valuable comment about the anemia, but I do suggest you do WHATEVER IT TAKES and sooner rather than later to alleviate your anxiety and get answers you feel are sound.

Misty said...

I am thoroughly unhelpful on this,but I did read all the comments! If it were me, I would be listening to our doula-midwife friends about the natural ways to supplement for iron. I also support your getting the second opinion and asking directly if you shouldn't take Edward to a hematologist. I would consider asking if you should consider a gluten-free diet for him for a time. (This is a huge step and not something I would look forward to. Sigh. Food issues.)

And I would also see if Paul can come to the appointment. Because (for the worse, really) men are sometimes taken more seriously by certain people.

Luck! You guys are going to get to the bottom of this and it is going to be ok.

Lippy said...

Well, I don't know anything. But I am glad the internet does. I think seeing the Ped is a great idea. I also think taking Paul is a good idea, I find that if I have an important appointment having Bud is great. He remembers to ask questions I forget, and between the two of us we remember more of the info later. Also he mimics the doctor and nurse when they aren't in the room which is super funny. So we are 12....

lifeofadoctorswife said...

Oh ugh - how worrisome. :-( But it looks like the comments section is FULL of great ideas and I think your idea of a second opinion is EXCELLENT.

I do have my own very non-expert take on whether this is too much iron. My understanding is that the RDA of a certain mineral/nutrient is often FAR below what the body can actually use. Especially because (as others have mentioned) the body is so poor at absorbing some minerals and nutrients. While there's definitely a point of too much for many supplements, if a doctor is recommending a specific amount, then it is probably okay. For instance, you can take a TON more Vitamin D than the RDA. Same with Vitamin C. Am not SURE that iron falls into the same category, but it seems likely, considering your pediatrician's recommendations to keep upping the intake of iron.

Well, not sure how (if at all) reassuring this is, considering it comes from a non-expert. But something possibly worth looking into or discussing with a doctor if it SEEMS like it COULD be reassuring.

Siera said...

Swistle, I know nothing of of iron levels or anemia. But I do know to trust my GUT as a mom. It's usually right 90% of the time. And I have no doubt that you trust your gut too. Dr. Google can be a scary thing, but if something doesn't feel right go with your gut and get a second or third opinion if you have too. Dr.'s can be wrong.

There is a show on TLC called Mystery Diagnosis (I think)and it always showcases moms who got that second/fifth opinion and it results in Mommy Knew Best. I hope you find and answer to Edward's anemia soon.

Anonymous said...

Have you ever heard of Spatone?

http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/spatone/

It's much easier for the body to absorb; other iron supplements tend to just pass through the intestines intact, if you see what I mean.

You might want to check into it! I know Spatone is a UK product, but there might be something similar in the States?

Best of luck.

MoMMY said...

Ok, I realize you've heard from the professionals here and from others who said the same thing I'm going to say but I always find, the more people who agree the better I feel about something.

I've had anemia for years. Actually decades. I was taking as much iron as I could without it making me ill. I eat red meat, spinach, legumes and other iron rich foods. My levels do rise but not enough to bring it up to normal. Then I started with B-12 injections every two weeks. (about 4 years ago) The recommended dosage is once a month but I could never go more than the two weeks without falling asleep constantly. That brought my levels up a little more but more importantly, I felt SO MUCH BETTER. Just this year I had allergy testing done (allergic only to hazelnuts) and testing for celiac (negative). But, I gave up gluten while waiting for the results. I am a new woman. I'm currently three weeks from getting a B-12 shot and I still feel wonderful. When I do ingest gluten - even tiny amounts - I feel awful. Really, really terrible. All my blood test, endoscopy, etc show nothing about a gluten intolerance. But, my vitamin levels have increased greatly.

Just my experiences. Take what you will from it.

Ami said...

I have thalassemia minor, which like the hematologist above pointed out, is something that affects your iron but is really no big deal otherwise. My doctor told me that my levels will never be normal. It's super easy to check for, just a blood test. Wouldn't explain the weight loss, though... Ugh, good luck!

Alice said...

i have nothing valuable to add except that posts (commenters!) like these make me love the internet whenever i start feeling uncertain about it. SO MUCH HELPFUL HELP and advice! (my 2 cents would be not to ask the doctor if s/he thought edward should see a hematologist; just straight up as for the referral itself.)

Anonymous said...

When my son was 2 and a half his iron level was 2. He was put on adult iron supplements and had monthly blood draws. It took 18 months for it to go up to normal. It took a long time for it to go up I do remember that.

Josefina said...

I can't say anything about the anemia or the iron, but I can highly recommend seeing the other dr. in the practice. I had to do this with some issues my son was having, and it helped so much. Huge difference.

Anonymous said...

Swistle, your darling boy's digestive system will be destroyed with all that artificially formed iron supplement. Floradix is a good start. But the problem isn't just iron. I think you need to request a FULL blood work up: ie, check for thyroid function, hormone levels, mineral levels, the works. I won't scare you with stories of what COULD be happening with your boy, but I can guarantee you that even if his iron creeps up a little on the MEGA dose your DR has prescribed, you are doing damage by overloading his system at the same time. He can obviously only absorb so much at a time, and you need to find out why. Full blood work may help to tell that story. And maybe visit a reliable and recommended naturopath for a balanced view from conventional AND alternative medicine. Iridology, as an example, may help determine the issue. But if it's genetic etc, you will need that bloodwork. Best wishes to you and your darling little man.

Anonymous said...

Also, food intolerance is a very good thing to suspect. and B12 supplements for children would be a good idea. Start him on this straight away, and then do the other stuff recommended above as well. good luck!

Swistle said...

Anonymous- I know, but you can see the bind I'm in: it's hard to know when to listen to the long-known pediatrician with the medical degree, and when to listen to strangers on the internet. I'm finding it all kind of overwhelming, and it's hard to know whose advice is valuable and whose is not.

Michelle said...

Ok, apologies that I've not read the other comments, so. But have you/doc looked into what KIND of anemia it is? As in, megaloblastic anemia occurs when you are deficient in B12, and then the body "eats" your iron stores in desperation. I have this. Not until I started getting B12 shots- not just oral supps - did my B12 and THEN my iron correct. No matter how much iron I took. So, for now you can try this: Floradix. It is a liquid Bs + iron supplement, fruit/veg based and SO MUCH MORE ABSORBABLE than most iron tabs/supps! Big time. Midwives all over recommend it because 1) it works SO much better and 2) it is gentler and won't bung you up. I've used it on my waifish child and MAN did it rev up his appetite. It has also worked wonders for me. The B12 in Floradix might be enough to fix E's problem, if it is indeed the problem, and if it's not the problem, the iron in it might work way better than what he's on. Two cents and then some, for ya. :)

Michelle said...

Also, consider greatly reducing or even chopping the dairy in his diet. Dairy causes micro-tears in our guts which leads to anemia....

Annie said...

I'm sorry I haven't read the other comments, but - celiac. The bowel testing is invasive and probably scary for all but the most ghoulish of kids, but there is bloodwork that can be done that's pretty darn conclusive.

I know, I DO know that it's superfashionable right now, which is a thing I hate, the whole bad-food-fad thing, but, but, but - celiac has been linked to anemia, failure to thrive, B12 deficiency, failure to gain weight, joint pain - it's an autoimmune disorder, it's real (and underdiagnosed, btw) and it's worth following up on.

I don't know if this is relevant for your family, either, but children who were breastfed take longer to become symptomatic and are more likely to have atypical presentations.

Okay, phew. The other thing is the iron supplement. If your ped is giving you tablets, absorption is going to be low, nothing you can do about it, and to maximize absorption you need to avoid taking with dairy, tea or high fiber foods. You might try floradix - it initially seems spendy, but the absorption is so much higher that it works out to be about the same as OTC, if not slightly cheaper.