Elemental Iron

[aheer9043]

Hey fellow Crohn's parents - I need to ask advice on iron supplements. Background: My daughter was diagnosed one year ago with severe Crohn's (age 7). By the time we'd figured out what this was, she'd stopped growing (was still in size 4 clothes, etc.), was severely anemic (labs said 8 when they tested her iron) and had horrible uncontrollable diarrhea with bleeding. She wouldn't eat more than a bite or two at meal times and would complain her belly hurt - turns out she had ulcers in her stomach along with intestines, etc. Now for those of you new to this forum, it does get better!!! She's on Remicade and living a completely normal life now, minus the infusions and an occasional bout of constipation. Back on the growth chart at the 25% percentile for her age and eating normally.

The reason for my post is that her labs came back from her latest infusion and all is normal accept her iron which is slightly low. Doctor's want to see an 11.7 or higher, and her iron level is 11.5. They're suggesting she get 65mg of elemental iron on a daily basis. We tried iron in liquid form when she was first diagnosed, and while I won't bore you with the details, I'll state that it was honestly the most traumatic experience of this whole thing so far. No matter what, we will never go through that again. NO drops. SO - I'm on the hunt for a kid friendly gummy or a smaller iron pill/tablet that covers this requirement. I frankly don't care if it's vegan, has red food coloring, or is covered in sugar. We're targeting a solution that is tolerable, so she doesn't hate this disease and resent her body more than she already does. Suggestions?

 

[pdx]

It's great to hear that your daughter is doing so well a year after being so sick!

We have tried many iron supplements at my house. The usual 65-mg supplement is iron sulfate, which is an easy to swallow small pill but caused stomach pain and constipation for my daughter (and many people). I wouldn't recommend it for your daughter since you said she has bouts of constipation. After my daughter had trouble with iron sulfate, her doctor recommended she try iron gluconate, which is a fairly small tablet. It is only 27 mg per tablet, and she actually just takes one every other day now, along with a daily adult multivitamin that has 18mg of iron from iron sulfate. I don't know if you took multiple tablets a day if it would start to cause stomach issues or not.

My daughter also takes a vitamin C gummy at the same time as her iron, since vitamin C is supposed to help with iron absorption.

We've never tried iron gummies but I see several highly rated ones on Amazon, including many that have vitamin C as well. Looks like most contain iron fumarate, which I think also is supposed to be easier on the stomach. Those look promising, but make sure you check the dose of elemental iron. Some are just 5 mg, which wouldn't do much. I imagine that the ones with more iron taste worse, but maybe not too bad?

Hope you find something that is easy for your daughter to take and that works well!

 

[Scipio]

One of the paradoxes of iron supplementation is that most of the dietary iron gets absorbed in the duodenum - the portion of the gut that is immediately downstream from the stomach. The farther "south" from the duodenum the dietary iron travels, the poorer the absorption. The "entertic-coated" iron tablets don't uncoat until they are much farther down in the bowel, making them easier on the stomach and less likely to cause nausea. But the paradox is that the pill that is easiest to tolerate is also the one least likely to actually provide much of a boost to the iron absorbed by the patient.

PDX provides some good info on the types of iron pills available, and to that I can add to avoid the "enteric-coated" ones if you can. Your daughter will have far fewer iron pills to take in the long run if she can tolerate the ones most likely to boost her iron levels.

One more thing to consider is, that if the pills just aren't working for whatever reason, iron supplementation by injection or infusion. It's much quicker and more effective way to boost the iron compared to pills. And it sounds like your daughter is already tolerating infusions, so maybe one more occasional needle poke might not be that big of a deal to her.

 

[aheer9043]

Helpful responses! Thanks!!! I found a carbonyl iron option that is supposedly easier on the stomach, comes in smaller 65mg tablets (non-enteric coated) and is paired with vitamin C. Seems like the best option. Now I just need to teach my 8 year old how to take pills! Wish us luck!!!

Scipio - we did her first iron as an infusion once the doctor found out how challenging those iron drops were, and it worked beautifully. She just had it with her Remicade infusion and was really a huge relief for her. She's not too far off from a normal iron range, so I think we'll try a pill route first. If these don't work, I'll ask her GI doctor about it. Will keep you all posted in case any other parents are also trying to figure this out. Working out how to take an iron supplement is such a minor thing compared to some of things us parents are battling here. I feel silly for raising it, but anything I can do to make this easier on the kiddo is worth it!! Thanks much for your insights!!

 

[my little penguin]

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/PillSwallowing.pdf
https://www.crohnscolitisfoundation.org/sites/default/files/2020-04/peds-helping-child-take.pdf
My kiddo was dx at 7 as well
Now almost 18
He had to learn to swallow Pentasa capsule

start with something like candy
Mini m&m,s
Tic tacs
Grain of rice
Mini choc chips

if not there is the Oro flow cup
Took a while but my kiddo did leave to swallow pills at 7
And loved to Impress folks afterwards

 

[my little penguin]

https://oralflo.com/

 

[my little penguin]

Thoughts on iron
Flintstones chewables with iron
https://www.flintstonesvitamins.com/products/iron-vitamins
18 mg

good luck

my kiddo normally has constipation as part of his crohns (weird I know )
But with any and all iron supplements
He got diarrhea
We tried them all
So they just watch ferritin levels
So far no iron infusions needed in 10 plus years

he doesn’t eat red meat or pork either
Plenty of chicken /Turkey and tofu

 

[Scipio]

One thing I have found that makes hard-to-swallow pills go down easier is take them with a soda or other fizzy drink instead of water. There is something about the fizzy bubbles that makes pills go down easier.

 

[pdx]

Took a while but my kiddo did leave to swallow pills at 7
And loved to Impress folks afterwards

For my daughter the challenge was being able to swallow her budesonide pills. And yes, she now has a prodigious ability to take pills. She takes 6 or 7 pills every morning and loves to watch my eyes pop when she takes all of them at once.

 

[kiny]

my 2 cents

Oral uptake of iron tends to be poor and dosing is just guesswork due to large differences in bioavailability.

In the 70s doctors could still make a justifiable argument for oral iron in favor of an intravenous solution, erythroid and anaphylactic reactions happened. A handful of people out of thousands died from the infusion decades ago.

Today's intravenous iron solution are much safer than oral iron, they are much more effective in restoring iron levels, much better to dose. Because the iron remains available to transferrin for weeks after the infusion, it is self-dosing, and a much more natural and safe way to provide iron to a patient than pills.

 

[Maya142]

For my daughter the challenge was being able to swallow her budesonide pills. And yes, she now has a prodigious ability to take pills. She takes 6 or 7 pills every morning and loves to watch my eyes pop when she takes all of them at once.

My daughter is the same - she takes 7 or 8 pills at once, including several large capsules.

My thoughts on your daughter's iron levels - when you say her iron is low, do you mean her hemoglobin is 11.5 or her Ferritin or her total iron? Because we have always been told that you can't just check hemoglobin, because you could have a normal Ferritin despite having a low hemoglobin. My daughter's hematologist always checks her Ferritin as well as her HGB and Transferrin saturation, total iron and other iron studies.

My daughter tried iron supplements and no matter what we tried, she just could not tolerate them and her already low Ferritin, fell from 6 to 3. So she did iron infusions and found them much easier to tolerate.