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Iron question

I've got a question about iron levels. L has been having a lot of trouble with memory and concentration in school (she has ADHD, but this seems more than usual), and I asked her pediatrician for vitamin levels, especially since she's been on omeprazole for a few years and it cause various problems. Anyway, everything came back normal except ferritin. The nurse (who wouldn't give me numbers :p) said it was "a couple points low, but nothing to work about," so of course I'm worried. The thing is, she has a CBC at every liver check up and her hemoglobin and hematocrit are always high normal. I asked the nurse and she said yes, those were high normal. So...how in the world can she have high normal hemoglobin, etc, and have low ferritin? I guess I thought they went together. I tried to do some online research but I just ended up going in circles. Also, is ferritin "a couple of points low" really something I shouldn't worry about?
 

Scipio

Well-known member
Location
San Diego
Probably nothing to worry about. If her hematocrit and especially her hemoglobin are normal then she is not anemic. The low ferritin means that her spare iron stores are a little low, and is proably not severe enough to cause memory or concentration problems. But like anything else it is good to keep an eye on it to spot any ongoing trends or severe shortages developing.

You could try vitamins fortified with iron or some iron pills if you want, although some people report that iron pills irritate their gut.
 

my little penguin

Moderator
Staff member
So Ds had low ferritin
Cbc normal on the lower end but still normal hemoglobin etc...

Gi explained ferritin is the pantry of food (her extra)
The body is taking more out to keep her hemoglobins etc at a normal level
It nobody is grocery shopping to replace what’s taken out
Eventually you will be anemic
For ds we did Chelated iron pills
It takes 6-12 months to build up ferritin stores even slightly
Unfortunately Ds did not tolerate iron supplements (tried them all flintstones ,infant drops , other pills ) he ended up with diarrhea (he normally has constipation )

so after 6 months he increased. His levels above normal a little bit
Gi just said they would watch and keep checking ferritin if it dropped again below normal as well as hemoglobin etc then iron infusions

thankfully when Ds switched to Stelara the low ferritin went away and he is very normal now

so you could try pills or you could watch and wait
 

crohnsinct

Well-known member
Did they check B12? A deficiency in B12 could lead to concentration and memory issues. Make sure they tested methylmalonic acid as B12 level can test at a sufficient level but it is really the methylmalinic acid number you want.

Vitamin D deficiency also has some brain issues but not as much as B12.
 
Thanks, everyone. Yes, her vitamin b12 levels were normal according to the nurse. I don't think they tested MMA. I'm still in the process of getting the actual results, so I can see what the lab's low and high values are and where L's stuff falls.
 

Maya142

Moderator
Staff member
My daughter had iron deficiency anemia - her hemoglobin & hematocrit were slightly low but not terrible. But her Ferritin was very low - hers fell to 3. We did iron supplements for a short period of time but they caused constipation and belly pain and nausea, and since her Ferritin was very low, we did iron infusions.
This was a year before her Crohn's diagnosis. Since her diagnosis, she hasn't needed iron infusions though she's definitely had low Ferritin several times.
 
Some heme iron rich foods are pretty much all meat products. Eggs, shell fish, shrimp and liver.

Non heme iron is in vegetables but not as easily absorbed which may be a problem given the medication. Molasses, spinach, beans, lentils have better than average non heme iron.

Cooking in cast iron might help

Iron is absorbed better if vitamin C rich foods are also eaten with it.

Dan
 
While I didn't get on with any of the iron tablets, I tolerated liquid iron (Sodium Feredetate) - which I was told is normally only given to pregnant women and children.
 
There is a newer type of iron supplement you could ask about. It is called feramax in Canada. Didn't bother my daughter at all! She has tried many over the years. It is bound to a polysaccharide and for some reason that is why it doesn't distress the gut.
 
Hi, all,
Late update, but when I did finally get the numbers, L's ferritin was 16, so actually not out of range according to their posted normal range, but certainly on the very low end of normal. Her serum iron was 140, which was notably high. Odd, but okay. (And her B12 was almost 700.) We explored a number of reasons for her concentration issues with no results, but in the last six weeks L started having abdominal pain and loose stools and weight loss, and lo and behold, her fecal cal is mildly elevated (113, which is above the healthy cutoff for PSC-IBD; her previous fecal cal was 22). So I wonder if the school issues have been influenced by low level inflammation simmering. I'm still waiting to hear back from her GI regarding a plan of action.
 
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Hi, all,

I have a question. L has been doing well for the most part, growing, studying, doing all the art. She had a six month check up today and the GI was so pleased with her that said we could go to yearly appointments. L's seemed a little pale to my husband and me, though, so I asked if they'd order a ferritin today when they did bloods. She usually just has a CBC, and her RBC count is usually a little above normal, so they've assumed all good. Well, today her RBCs are above normal (usual for her) but her ferritin is 4 and her iron saturation 8%. L is about to be 13. My question is... Aren't those quite low? Like, really pretty low? I got a message from the GI's nurse saying to start iron supplements and they were sending me cards to collect stool to test for occult blood. (But Lucia barely eats meat and has been on a PPI forever, so that's what I suspect.) But also... How can she have a ferritin of 4 and iron sat of 8 and have a high RBC??!! It doesn't make sense unless to me unless she's had an acute bleed--which she hasn't as far as I know.

Can anyone explain? Waaahhh!

(Does anyone else try to figure out everything before talking to the doctor? Maybe I have a problem.)
 

my little penguin

Moderator
Staff member
4 is low for ferritin
Below 10 or 11 is the bottom of normal
Iron supplements take months to work
If at all
13 equals chemical changes of puberty
Which spells crazy for inflammation going up
And equally hard keeping things under control
Hope iron supplements work
Ds was the same age
Didn’t work for him
But changing meds and finding the right combo finally did

hugs
 
i am looking around some about iron lately....i cant help about lab numbers but as a minor note..

i feel millets are surprisingly overlooked and quite helpful as there are many variety with diff nutritional values, yet similar...and many ways to prepare.

pearl millet and barnyard millet being the highest in iron up in the 15-17mg range so it seems significant. i am referencing this chart often

or red rice i am also wanting to try some.....i actually found some "germinated(more bio-available) AND parboiled(better R3 starch)" but it cost about as much to ship it as buy it so im looking around anyway...more options that get overlooked etc
 
Hi, all,

I have a question. L has been doing well for the most part, growing, studying, doing all the art. She had a six month check up today and the GI was so pleased with her that said we could go to yearly appointments. L's seemed a little pale to my husband and me, though, so I asked if they'd order a ferritin today when they did bloods. She usually just has a CBC, and her RBC count is usually a little above normal, so they've assumed all good. Well, today her RBCs are above normal (usual for her) but her ferritin is 4 and her iron saturation 8%. L is about to be 13. My question is... Aren't those quite low? Like, really pretty low? I got a message from the GI's nurse saying to start iron supplements and they were sending me cards to collect stool to test for occult blood. (But Lucia barely eats meat and has been on a PPI forever, so that's what I suspect.) But also... How can she have a ferritin of 4 and iron sat of 8 and have a high RBC??!! It doesn't make sense unless to me unless she's had an acute bleed--which she hasn't as far as I know.

Can anyone explain? Waaahhh!

(Does anyone else try to figure out everything before talking to the doctor? Maybe I have a problem.)
I misspoke about an acute bleed. An acute bleed would definitely make her RBCs go down. But I still am puzzled.
 
4 is low for ferritin
Below 10 or 11 is the bottom of normal
Iron supplements take months to work
If at all
13 equals chemical changes of puberty
Which spells crazy for inflammation going up
And equally hard keeping things under control
Hope iron supplements work
Ds was the same age
Didn’t work for him
But changing meds and finding the right combo finally did

hugs
Yes, I knew puberty is often a tipping point, but I thought L was doing really well (except pale). Doesn't complain of abdominal pain. Stools are normal for her. Grew and gained a ton of weight over the last year. She is pretty low energy, but her main focus outside of school is art so maybe we haven't noticed because she likes to sit and draw or sculpt--she's not a soccer player or swimmer or similar.
 

crohnsinct

Well-known member
I wish I could help you here but we have only just begun to go down the iron rabbit hole ourselves. Same as you. Our old GI only did CBC and new GI tested ferritin, iron etc. All I can say is that it is a very convoluted topic. Lots of if X and Z are high then this or if X high and z low or if X low and y high….then there are other things where the RBC try to make up for it so are artificially inflated and so on and so on. It truly is a very highly specialized thing. Years and years ago O had some crazy blood labs consistently and they sent her to a hematologist and it was all fine.

This time, I have been so focused on her surgery that I am just letting the docs figure it all out. She is getting an iron infusion and we will take it from there.
 

Scipio

Well-known member
Location
San Diego
Hi, all,

I have a question. L has been doing well for the most part, growing, studying, doing all the art. She had a six month check up today and the GI was so pleased with her that said we could go to yearly appointments. L's seemed a little pale to my husband and me, though, so I asked if they'd order a ferritin today when they did bloods. She usually just has a CBC, and her RBC count is usually a little above normal, so they've assumed all good. Well, today her RBCs are above normal (usual for her) but her ferritin is 4 and her iron saturation 8%. L is about to be 13. My question is... Aren't those quite low? Like, really pretty low? I got a message from the GI's nurse saying to start iron supplements and they were sending me cards to collect stool to test for occult blood. (But Lucia barely eats meat and has been on a PPI forever, so that's what I suspect.) But also... How can she have a ferritin of 4 and iron sat of 8 and have a high RBC??!! It doesn't make sense unless to me unless she's had an acute bleed--which she hasn't as far as I know.

Can anyone explain? Waaahhh!

(Does anyone else try to figure out everything before talking to the doctor? Maybe I have a problem.)
What is her hemoglobin?
 
What is her hemoglobin?
13.5 g/dL (range 11.3-14.7). She's actually usually somewhat above their high normal and has been on a slightly downward trend since mid 2018. But get this: her hematocrit is going up and has been since...about the same time (mid 2018). This time 43.6 (range 33.0-42.6). Here are the rest of the labs that have abnormal values.
RBC 5.4x10^6/mcL (high end of range 5.0)
Mean cell volume 80.7 (range 80.8-87.7)
MCH 25.0 pg (range 26.0-30.7)
MCHC 31 g/dL (range 33.5-36.0)
Iron 36.4 mcg/dL (range 37-170)
% Iron Saturation 8 (range 20-55)
Ferritin 3.97 ng/mL (range 10-70)
 

crohnsinct

Well-known member
That is bizarre because H&H usually travel together.

Sounds like her body is tapping her stores to keep anemia at bay…but why? Has she had her periods yet? Was this a particularly bad one? Did they do a calpro test also?

Hopefully the iron pills can help.
 
That is bizarre because H&H usually travel together.

Sounds like her body is tapping her stores to keep anemia at bay…but why? Has she had her periods yet? Was this a particularly bad one? Did they do a calpro test also?

Hopefully the iron pills can help.
She had an initial period at the end of last summer (light) and then a long break and another very light period about a month ago. No calpro--again, grew and gained weight and her GI is very hands off. She's doesn't eat a lot of meat or green leafy veggies, so I know her diet is probably deficient. Plus she's been on omeprazole for years which decreases iron absorption. We're trying her off that (again).
 

crohnsinct

Well-known member
Hmmm I would feel better with a calpro test. Everything you mentioned makes sense and sounds like a perfect storm but I would really want to know that inflammation wasn’t brewing. Especially with the start stop nature of her periods. Inflammation really messes with puberty but that also does happen for some girls. I would just feel more comfortable with a calpro. It’s easy and cheap enough.
 

Scipio

Well-known member
Location
San Diego
Hmm...looks like iron deficiency without anemia, which can be puzzling.

You can take several steps to boost the absorption of the iron pills. First, buy the uncoated kind. The "enteric coated" ones are almost useless, because nearly all the dietary iron is absorbed in the duodenum, which is immediately downstream from the stomach. The coated ones cause less stomach upset, but they don't help with the iron deficiency much because they don't uncoat and release their iron until they are already too far south in the gut.

If your daughter can stand the irritaing effects of the pills, have her take them first thing in the morning at least 30 minutes before breakfast. And take them along with a vitamin C tablet. That will maximize the absorption.
 
Hmmm I would feel better with a calpro test. Everything you mentioned makes sense and sounds like a perfect storm but I would really want to know that inflammation wasn’t brewing. Especially with the start stop nature of her periods. Inflammation really messes with puberty but that also does happen for some girls. I would just feel more comfortable with a calpro. It’s easy and cheap enough.
We're going to test her stool for occult blood. Maybe calpro after that depending on results? Who knows. Maybe I'll ask her pediatrician if she'll order one.
 
Hmm...looks like iron deficiency without anemia, which can be puzzling.

You can take several steps to boost the absorption of the iron pills. First, buy the uncoated kind. The "enteric coated" ones are almost useless, because nearly all the dietary iron is absorbed in the duodenum, which is immediately downstream from the stomach. The coated ones cause less stomach upset, but they don't help with the iron deficiency much because they don't uncoat and release their iron until they are already too far south in the gut.

If your daughter can stand the irritaing effects of the pills, have her take them first thing in the morning at least 30 minutes before breakfast. And take them along with a vitamin C tablet. That will maximize the absorption.
I am worried about how iron will affect her. I feel like if one more thing makes her feel sick to her stomach she'll give up on food altogether. She already takes early morning meds so I'll have to see there will be a problem adding iron and vit c to the mix. If not, I'll just add those in and hope for the best.
 

Scipio

Well-known member
Location
San Diego
If iron pills turn out not to be tolerable for one reason or another, you can consider having your doc prescribe iron infusions. Then all the stomach and absorption problems are avoided. But it means getting a needle stick and IV infusion. How is your daughter about needles?
 
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If iron pills turn out not to be tolerable for one reason or another, you can consider having your doc prescribe iron infusions. Then all the stomach and absorption prolems are avoided. But it means getting a needle stick and IV infusion. How is your daughter about needles?
She tolerates blood draws but she probably would rather be sick to her stomach than get an infusion.
 

Maya142

Moderator
Staff member
My kiddo had a slightly low hemoglobin and a very low Ferritin. I don’t remember what her hematocrit was but iron saturation was also low. We tried oral iron supplements, but her Ferritin dropped further, to 3, and we were sent to a hematologist who immediately ordered iron infusions. We saw two hematologists (because this happened before we knew she had IBD) and they both said that the only way she could have become that deficient was through bleeding - either in her stool (which she had never seen) or her period (but her periods were not heavy). A year later she was diagnosed with Crohn’s and her GI thought she may have been losing small amounts of blood over a long period of time.

She was very pale and very exhausted when we finally figured out she had low ferritin. We had been blaming the exhaustion on school. The iron infusions made a huge difference.
 

Maya142

Moderator
Staff member
I wonder if the high RBCs and the high hemoglobin mean she was dehydrated when the blood was drawn.
The infusions were honestly much easier than pills for my daughter - those caused nausea and abdominal pain. The infusions did not cause side effects. She’s had infusions twice since then. They’re not very long (like an hour if I’m remembering correctly) and if you do it at the children’s hospital, they can have Child Life help her with the IV. If the hospital has them, j-tips help.
 
I wonder if the high RBCs and the high hemoglobin mean she was dehydrated when the blood was drawn.
The infusions were honestly much easier than pills for my daughter - those caused nausea and abdominal pain. The infusions did not cause side effects. She’s had infusions twice since then. They’re not very long (like an hour if I’m remembering correctly) and if you do it at the children’s hospital, they can have Child Life help her with the IV. If the hospital has them, j-tips help.
That's a good question about dehydration. L's RBCs and H/H have always run on the high end, so I'm inclined to think that's not it. Or she's chronically dehydrated, which I suppose could actually be a thing.
I wonder what the occult blood test will show. I spent a couple years fussing that Lucia wasn't as "normal" as she should be, but the doctor was very convinced she was fine and I decided I was being crazy. If I find out now that L has had simmering inflammation all along I'm not going to be happy at all. Especially with myself.
If she ends up needing infusions I don't know where we'll have to go. The children's hospital is 2.5 hours so that's not convenient for anything that has to happen more than once or twice. She started her iron tablets this morning so it'll be interesting to see how she's been so far. The pharmacist told us to give them to her with food even though it decreases absorption because she thought the side effects would be too bad otherwise. 😕
 

my little penguin

Moderator
Staff member
The pharmacist is used to normal kids
Not crohns kids who have had disease a long long time
I would see what your Gi recommends
When were her last scopes /imaging ?
I know her Gi is more hands off approach
That’s tough as a parent
We had one Gi who loved to test because Ds didn’t get the normal crohns memo
Switched Gi’s due to move and barely any testing for years except bloodwork (which never shows anything on Ds ever )
So hoping all is well in next scope since it’s been 3 years
 

Maya142

Moderator
Staff member
All her numbers are low or very low normal except Hematocrit and RBCs. To be honest, we were told that a Ferritin of 3 was "quite concerning" and that was when M's hematologist said iron pills were unlikely to work fast enough and he said she needed infusions. So I am concerned about a Ferritin of 4. That said, M's hemoglobin was abnormal - I think in the 10 range. She tends to run low anyway, so I didn't expect her Ferritin to be quite so low but it was.

I looked up normal HGB with low Ferritin and found that it's likely she has iron deficiency not iron deficiency anemia:
Iron deficiency without anemia can occur when a person has a normal hemoglobin, but below normal serum ferritin and/or transferrin saturation. Iron deficiency with anemia can occur when a person has low values of both serum ferritin and hemoglobin./QUOTE]
I know you said her GI doesn't test much but has she had a fecal calprotectin recently? When were her last set of scopes? How has weight and growth been? And what meds is she on - Imuran?

As for infusions - they're not much worse than a blood draw. Putting in the IV hurts obviously, but after that they're easy. If she's really afraid, it might be worth making the trip to the Children's hospital (though a 5 hour round trip is definitely not fun). My daughter was so miserable on iron supplements (and probably wasn't absorbing them anyway) that the infusions were a breeze in comparison. We didn't go to a children's hospital though - just a local infusion center. She was a little older than your daughter - I think she was 14.5 at the time. But she has never really been afraid of needles and started doing her own shots at 13, so maybe not a good comparison. You can always use numbing cream or Buzzy.

Info was from this website:https://irondisorders.org/iron-deficiency-anemia/#:~:text=Iron deficiency without anemia can,both serum ferritin and hemoglobin.
 
The pharmacist is used to normal kids
Not crohns kids who have had disease a long long time
I would see what your Gi recommends
When were her last scopes /imaging ?
I know her Gi is more hands off approach
That’s tough as a parent
We had one Gi who loved to test because Ds didn’t get the normal crohns memo
Switched Gi’s due to move and barely any testing for years except bloodwork (which never shows anything on Ds ever )
So hoping all is well in next scope since it’s been 3 years
Yes. I don't want a doctor who tests everything under the sun because that's hard on L, who just wants to be normal. But I don't want a doctor who doesn't test enough. And L also shows very little on bloodwork. It's been years since scopes. I'm going to have to wait and see what her GI wants to do here shortly, and then figure out what we need to do.
 

my little penguin

Moderator
Staff member
Remember 10years after dx a screening colonoscopy for cancer with lots of biopsies is required
Ds is 11 years so scopes for cancer screening
 
H had the same thing happen in the past year. Her H & H were fine, ferritin was 5 or 6, and there was a serious fainting episode. As in her front teeth were broken. At emerg we had her go through all tests and they decided there was no explanation. They disregarded the low ferritin because hemoglobin was fine.
GI told us not to supplement because it might be hard on her gut.
Long story short, when we retested her blood after a month or so, I had her test before she ate. Usually I feed her quite well before a blood draw unless we're asked not to. That was enough to drop the hemoglobin a bit so that GI would suggest supplementing iron.
Ferritin improved within a few months of supplementing.
 
All her numbers are low or very low normal except Hematocrit and RBCs. To be honest, we were told that a Ferritin of 3 was "quite concerning" and that was when M's hematologist said iron pills were unlikely to work fast enough and he said she needed infusions. So I am concerned about a Ferritin of 4. That said, M's hemoglobin was abnormal - I think in the 10 range. She tends to run low anyway, so I didn't expect her Ferritin to be quite so low but it was.

I looked up normal HGB with low Ferritin and found that it's likely she has iron deficiency not iron deficiency anemia:


I know you said her GI doesn't test much but has she had a fecal calprotectin recently? When were her last set of scopes? How has weight and growth been? And what meds is she on - Imuran?

As for infusions - they're not much worse than a blood draw. Putting in the IV hurts obviously, but after that they're easy. If she's really afraid, it might be worth making the trip to the Children's hospital (though a 5 hour round trip is definitely not fun). My daughter was so miserable on iron supplements (and probably wasn't absorbing them anyway) that the infusions were a breeze in comparison. We didn't go to a children's hospital though - just a local infusion center. She was a little older than your daughter - I think she was 14.5 at the time. But she has never really been afraid of needles and started doing her own shots at 13, so maybe not a good comparison. You can always use numbing cream or Buzzy.

Info was from this website:https://irondisorders.org/iron-deficiency-anemia/#:~:text=Iron deficiency without anemia can,both serum ferritin and hemoglobin.
L's one experience with an IV infusion (lactated ringers) was memorably awful. I don't know what the nurse did or didn't do, but L felt significant pain at the insertion site for the entire time it was in. She was only five at the time, but she remembers it. Maybe if she had a couple of good experiences she would be able to override that memory, but she hasn't had them yet.
Yes, with her high hemoglobin it might not be as pressing. But her red blood cells are slightly microcytic and hypochromic, so they're probably not working as well as they should. I read that that's typical in iron deficiency and is considered a form of anemia--but I'm not sure how small and how hypochromic they have to be to actually be considered anemic.
This last year she gained a lot of weight and grew somewhat. She gained all of her weight--about twenty pounds!!--over last summer (when she has the most access to food she will eat--she eats less during the school year and doesn't usually gain weight then). Her last calpro was in 2019 (I think mentioned somewhere in this thread--it wasn't very high but PSC people (I have read) often have low level inflammation that is clinically insignificant but seen in scopes. But her GI said it was fine. 🤷🏼‍♀️
I dunno, I'm starting to think we need a different GI, even though the one we see is well-regarded.
 
H had the same thing happen in the past year. Her H & H were fine, ferritin was 5 or 6, and there was a serious fainting episode. As in her front teeth were broken. At emerg we had her go through all tests and they decided there was no explanation. They disregarded the low ferritin because hemoglobin was fine.
GI told us not to supplement because it might be hard on her gut.
Long story short, when we retested her blood after a month or so, I had her test before she ate. Usually I feed her quite well before a blood draw unless we're asked not to. That was enough to drop the hemoglobin a bit so that GI would suggest supplementing iron.
Ferritin improved within a few months of supplementing.
Does your daughter eat a limited diet? L is very picky and eats very little meat, so I'm sure that has at least contributed to her situation. But I'm still worried.
 

crohnsinct

Well-known member
There is actually a test they can do on those RBC's to determine size etc and how concerning the numbers are. O had that done a few summers ago.

Ironically, I just watched an IBD presentation from O's new hospital and across the board every GI on the panel said they do NOT bother with oral iron and they go straight torn infusion. One GI said it could take 1-2 years to get the result she can get with 1-2 infusions. Sorry, I know you on't really want to do the infusions but worth thinking about.

I don't think a second opinion is a bad idea. It doesn't mean that you are necessarily leaving your current doc. It just means you would like another set of eyes. In this same meeting presentation across the board all the GI's and surgeons said ABSOLUTELY get a second opinion and if your doc balks at the idea run don't walk.

I think the GI is taking some good steps in getting that FOBT. If this comes up positive, maybe that will prompt him/her to then get a fecal calprotectin and if that is elevated, scopes. So I don't think it is an urgent situation just yet, but maybe start poking around to see where it is you might want to go.

As for blaming yourself, please do not even entertain that idea. I think you are being a very level headed parent of a child with two chronic illnesses. You are letting the professionals do their thing and trusting them. This is wonderful and probably lets you be present and available for your daughter! True, they may make mistakes and there is a possibility L has inflammation right now but there is nothing to say that it has been simmering for a long time. It could have just started over the last few months or so. You are catching it. Your doc is looking for reasons for the low iron that hasn't yet reached anemia status. This is great. You have your eyes wide open and are asking the important questions. You are doing a great job! We should all take a page from your book!
 
My daughter used to absolutely hate infusions, but we figured out ways to make it very tolerable for her, and now she doesn't mind them at all. Here's a few things she does, even now that she's 19:

--Lots of hydration starting 24 hours before to plump up her veins
--Tylenol an hour before
--Lidocaine cream (4 or 5%, sold over the counter, often as hemorrhoid cream) applied one hour before the IV. We clean the draw site with rubbing alcohol (helps the cream absorb more), rub a thin layer of cream in well, then put a big blob of cream right on top of the vein and cover with saran wrap. Then everything gets wrapped with coban. Having it on for a whole hour really helps. We know exactly where they always place the IV, so that helps. The nurse cleans everything off when she arrives, but the numbness lasts a long time and she rarely feels the IV at all.
--A hot pack over the arm when we arrive to keep the vein at the surface.

We used to use a Buzzy too when she was younger. We've tried j-tips, but she didn't like them as much as using lidocaine cream.

All that said, driving 2.5 hours each way to the hospital sounds rough. Especially because iron infusions often have to be done over multiple days. Maybe there is an adult infusion center closer by that you could use or maybe a pediatric clinic could do it for you? Our provider has recently opened infusion centers at many satellite clinics which makes things much more convenient for us.

Good luck with figuring out the next steps.
 

crohnsinct

Well-known member
Home infusion providers also do iron infusions. O is getting hers done at home so maybe even being in her owned, living room etc could help and it avoids the long drive.
 
Thanks, everyone!!
I'm just waiting to get the supplies for the occult blood test. Once we get those results then we'll see where to go. If they offer infusions as a choice I will probably strongly encourage L to give it a shot, but I won't force her. I can be very persuasive, though, if I need to be. (We foster kittens for a local rescue, so the offer of a kitten unfortunately wouldn't be tempting--lol!!).

For now it's hurry up and wait.

I'll update you when I know something new.
 

Maya142

Moderator
Staff member
My daughter has a port but she says when she uses EMLA cream (which is lidocaine and prilocaine I believe - it has to be prescribed by a doctor but even her pediatrician could do it), she doesn’t feel the poke. She has REALLY difficult veins that are now very scarred and nearly impossible to get an IV in (which is why the port was necessary). They used to use a J-tip right before trying to put an IV in (and they really have to dig around with her veins) and she said it helped a lot. She also used hot packs to make her veins easier for the nurses to access.
Honestly, if your daughter has significant side effects, I would go for infusions.
 
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Maya142

Moderator
Staff member
Also wanted to add, while I know you don't want to force your daughter into doing infusions, M's hematologist was concerned when her Ferritin fell to 3. I asked him if I should be panicking and he said "Not yet, but we do need to start infusions ASAP." So do be prepared for that if the iron supplements do not work or if her Ferritin falls further.

I honestly think you should do a Fecal Calprotectin whether or not the fecal occult blood test is positive. Because she may have active inflammation that caused bleeding but it's possible that she is no longer bleeding. Or she could have active inflammation which is preventing iron absorption but not causing bleeding. My daughter's FOBT was normal when we did the test but the two hematologists we saw both thought she had had gastrointestinal bleeding at some point that had caused to the low Ferritin.

On a totally different note, really impressed that you foster kittens! Just please don't tell my daughter - we already have 4 cats!
 
Also wanted to add, while I know you don't want to force your daughter into doing infusions, M's hematologist was concerned when her Ferritin fell to 3. I asked him if I should be panicking and he said "Not yet, but we do need to start infusions ASAP." So do be prepared for that if the iron supplements do not work or if her Ferritin falls further.

I honestly think you should do a Fecal Calprotectin whether or not the fecal occult blood test is positive. Because she may have active inflammation that caused bleeding but it's possible that she is no longer bleeding. Or she could have active inflammation which is preventing iron absorption but not causing bleeding. My daughter's FOBT was normal when we did the test but the two hematologists we saw both thought she had had gastrointestinal bleeding at some point that had caused to the low Ferritin.

On a totally different note, really impressed that you foster kittens! Just please don't tell my daughter - we already have 4 cats!
I would not be opposed to a fecal calpro. I just feel awkward asking the doctor for tests--though I'm glad I did this time. I hope she'll suggest it on her own after the FOBT.

I don't really recommend fostering kittens. In groups, especially rescued groups, they tend to get sick and 1) die, which is distressing, or 2) have horrible diarrhea and not want to use the litterbox. Which is why my daughter wouldn't find the offer of a kitten appealing. 😂 If M should ever want to foster kittens, point her to this post.
 

crohnsinct

Well-known member
When I ask for tests I pose it more as a question rather than a request. I might tell them I am concerned that there might be inflammation we aren't catching and then say something like "Do you think there is any value in getting a fecal calprotectin test?" This way you are opening a dialogue and asking the physician for their opinion rather than making a direct request. Sometimes I am met with, "you know what, that's a great idea, lets do that" other times it is "No not really because….". Either way I usually walk away happy.

I could never foster an animal because I can't give them up!
 

Maya142

Moderator
Staff member
I also ask the way @crohnsinct does because it doesn't seem like you're playing doctor or using Dr. Google. Or if the FOBT is negative, you could ask if it's still possible inflammation is interfering with absorption of iron and then follow that up by asking if a FCP would be useful. I don't think it's a big ask in this case - it's non-invasive and simple to order and given how low her Ferritin is, it's worth checking. My daughter has needed iron infusions 3 separate times and each time it's been connected to a flare - before diagnosis, after C.Diff and then after the COVID vaccine (this is rare, but M really flares with each shot).
 

my little penguin

Moderator
Staff member
I get asking is hard
Docs fall in three categories
A.) We have had some docs that are ok with it
B.) Some get offended but tell you why it’s not worth it
C.) And others get beyond offended down right horrible to deal with after including yelling at us

We have dropped docs in C category before
 
And L is back on the omeprazole. Within about three days of going off it, she started having significant persistent heartburn. (I asked GI if it could be irritation from iron, but she thought it's more likely from stopping the omeprazole.) If she's still having pain after two weeks, she's probably headed to scopes. If she's not we'll just continue the omeprazole, but once again it decreases iron absorption.

I still haven't received the stool test stuff yet. 😜
 
And L is back on the omeprazole. Within about three days of going off it, she started having significant persistent heartburn. (I asked GI if it could be irritation from iron, but she thought it's more likely from stopping the omeprazole.) If she's still having pain after two weeks, she's probably headed to scopes. If she's not we'll just continue the omeprazole, but once again it decreases iron absorption.

I still haven't received the stool test stuff yet. 😜

I am sorry I am not much help as I am new here, but I am learning a lot from your posts. Thank you! My son is on 80mg of omeprazole for Barrett's Esophagus. I did not know it can affect iron. Can I ask what dose L is on? Has it given her other issues? Sorry to hijack your thread.
 

Maya142

Moderator
Staff member
My kiddo is on Omeprazole too (40 mg) and has been on PPIs long-term (15 years). That's obviously not the ideal but sometimes needs to be done. She has Gastroparesis and terrible reflux goes hand in hand with that, plus she is on a lot of meds that are hard on the stomach (she has many medical conditions, not just IBD). That said, we have figured out that if she eats foods high in iron and takes a multivitamin with iron every day, she doesn't become deficient (of course, if she is in a big flare and having significant bleeding, then that changes). Her multivitamin is for teen girls even though she's a young adult now because it has extra iron. Her hematologist said any multivitamin with iron was fine.

If she does become deficient, we do iron infusions - usually one or two infusions are all she needs to get her Ferritin up. It was only when her Ferritin was very low that she needed 4 or 5 over 5 weeks. We did try iron tablets first but they caused a lot of symptoms so now we just do infusions.
 
I am sorry I am not much help as I am new here, but I am learning a lot from your posts. Thank you! My son is on 80mg of omeprazole for Barrett's Esophagus. I did not know it can affect iron. Can I ask what dose L is on? Has it given her other issues? Sorry to hijack your thread.
L is on only 20mg. It decreases iron absorption because it decreases stomach acid, and iron absorption is facilitated by acid. I don't know for sure that it is why she is iron deficient, but I suspect it has contributed. This is the second time we've tried to get her off of it--last time she went several months before she started to refuse food because of pain when she ate.
 
My kiddo is on Omeprazole too (40 mg) and has been on PPIs long-term (15 years). That's obviously not the ideal but sometimes needs to be done. She has Gastroparesis and terrible reflux goes hand in hand with that, plus she is on a lot of meds that are hard on the stomach (she has many medical conditions, not just IBD). That said, we have figured out that if she eats foods high in iron and takes a multivitamin with iron every day, she doesn't become deficient (of course, if she is in a big flare and having significant bleeding, then that changes). Her multivitamin is for teen girls even though she's a young adult now because it has extra iron. Her hematologist said any multivitamin with iron was fine.

If she does become deficient, we do iron infusions - usually one or two infusions are all she needs to get her Ferritin up. It was only when her Ferritin was very low that she needed 4 or 5 over 5 weeks. We did try iron tablets first but they caused a lot of symptoms so now we just do infusions.
Yes, L seems to have notable rebound acidity when we try to take her off omeprazole. She might just have to stay on it, or maybe taper off it slowly (I asked about tapering and the nurse told me they didn't need to taper off omeprazole, but who knows).

She's persevering with the ferrous sulfate for now. I imagine if there's no improvement at some point we'll move on to other options. I don't have a timeline yet though.
 

my little penguin

Moderator
Staff member
We had to taper Ds off
Ppi high dose
To lower dose
To every other day
Etc
I think we replaced with tums
Then slowly off that
Took a long long time
And he had no evidence of gastris for a free scopes in a row before the taper
And none afterwards
Now on just tums as needed so it possible
Just takes forever
Your stomach like a constant ph
So the body tries to make extra when you take a ppi
 

Scipio

Well-known member
Location
San Diego
If she's still having pain after two weeks, she's probably headed to scopes. If she's not we'll just continue the omeprazole, but once again it decreases iron absorption.
That's why you should have her take a vitamin C tablet along with the iron pill. It will (gently) acidify the stomach to boost the iron absorption that the omeprazole decreased.
 

Maya142

Moderator
Staff member
Yes, L seems to have notable rebound acidity when we try to take her off omeprazole. She might just have to stay on it, or maybe taper off it slowly (I asked about tapering and the nurse told me they didn't need to taper off omeprazole, but who knows).
Rebound acidity is common. You do need to taper - we did for my older daughter. She was on Prilosec then Prevacid for several years because she was also on NSAIDs for her arthritis. We were able to reduce her dose of Prevacid gradually and then replaced it prescription Pepcid and then OTC Pepcid. She was on that for several years to protect her stomach from the NSAIDs but now is back on Prevacid because her reflux and stomach pain came back (again likely due to a higher dose of her NSAID and steroids).
 
We got the hemoccult cards last week, but last week was crazy so we're just now to the point of getting samples. And now L won't discuss the gathering of samples because it's embarrassing. 🤦🏼‍♀️

She hasn't had any trouble tolerating the ferrous sulfate, though, so that's good.
 
Good grief!!

This is the second day in a row L has forgotten to collect a sample (or actually, let me collect a sample). She is often distracted and I do believe that she really has forgotten--though if one is concentrating on not thinking about it it's easier to forget.

She one time she did remember, though, her stool was really strange--it was like slippery slime, but held together just enough to be semi-formed. But it had no resistance when I tried to collect it--it just collapsed and slid away from the stick. It was just really odd. It looked like poop, but that's it. Is this mucus? I don't even know what to think.

I'll write a note about it to the nurse if we ever get the rest of these samples collected. 🙄
 

my little penguin

Moderator
Staff member
Stick …
We at the house of collection
Use a hat so they remember with multiple layers of Saran Wrap over the hat (easier to pick up )
And plastic spoons that you can throw away afterwards
The thicker ones from target /Walmart

Sticks are useless for slime (stool mixed with a ton of mucus -sometimes blood ) or loose stool
Spoons are your friend
Sticky notes on the wall above the toliet and/or mirror as reminders
Bribery for remembering also works ;)
Early teens years are tough
Early adult years a little better (maybe 🤔 )

When dropping off one stool sample always ask for a new hat/specimen cup
Since we all know eventually it will be used

poor kiddo
 
Stick …
We at the house of collection
Use a hat so they remember with multiple layers of Saran Wrap over the hat (easier to pick up )
And plastic spoons that you can throw away afterwards
The thicker ones from target /Walmart

Sticks are useless for slime (stool mixed with a ton of mucus -sometimes blood ) or loose stool
Spoons are your friend
Sticky notes on the wall above the toliet and/or mirror as reminders
Bribery for remembering also works ;)
Early teens years are tough
Early adult years a little better (maybe 🤔 )

When dropping off one stool sample always ask for a new hat/specimen cup
Since we all know eventually it will be used

poor kiddo
Bribery!! I bet that'll work. I'm going to offer to pay her--with a bonus if she remembers for the next two days.
 

Maya142

Moderator
Staff member
Bribery works! Also, at that age, they’re embarrassed about everything, so I used to tell M to just poop in the hat and I would take care of it. Like MLP, we used plastic spoons. We didn’t use Saran Wrap because if she had diarrhea, well, that makes a mess.
We also used post its to remind her to poop in the hat - on the bathroom door, near the toilet.
As she got older, she took over the putting the poop into containers or on the occult blood cards. But not at 12 or so - I think she was 16 or so when she started doing that.
We always asked for extra hats from Labcorp/Quest and they always gave them to us. That way it’s less gross.
 

crohnsinct

Well-known member
Spoons work but not for the fecal occult test if it is the stick kind that you dip and send or the card that you brush onto.

LOL bribery works…so does threats…nah kidding…maybe...
 
Aaaaand the hemoccult cards still haven't shown up at the hospital. It's been 11 days since I mailed them. The first sample is already out of date according to their guidelines.

I feel like we've experienced a lot of hang ups over the years in getting tests done and getting results to the right people. I'm trying to be patient but the whole system is so ridiculous I want to build my own private lab in the basement so I can just run all the tests myself. I'm sure I could order a complete boxed medical lab off of amazon, right? :unsure:
 

crohnsinct

Well-known member
Great idea! In addition to the check intestines light installed in their bellies.

You are not so far off actually. There is an at home Calpro test and it is pretty accurate. You read it with an app on your phone. It has been available in Europe for a couple years now. Just waiting for the U.S. to catch up. Our old pediatric GI likes it and was eagerly awaiting it's arrival. It has to be ordered by your GI and you get the test strips from your GI as well. I guess that is to keep parents from running daily cal pros….who would do such thing:whistle:
 
Well, the hospital finally got L's hemoccult cards and they were negative. Doc says, oh good, she doesn't have GI bleeding. Just keep on with the iron supplementation.

While I do feel this is likely to be dietary, I'm not totally satisfied with the response (no rechecking iron levels? No concerns about absorption? I got no response at all about her weird stools). We're seeking another opinion with a doc that someone gave us a specific recommendation for--but they are distant, though fortunately near where my parents live. I think that getting that visit arranged may take a good while, but that's where we're headed for now.
 

my little penguin

Moderator
Staff member
So glad your getting a second opinion
They may confirm everything is “ok”
But as a mom better to have confirmation when things seem “off” to you
As far as travel
We travel a good bit for one of Ds specialists
Only a few times a year and close to bith grandparents so an excuse to visit 😄
Never regretted the switch
 

Maya142

Moderator
Staff member
A second opinion is a great idea. My daughter is in the same boat - low iron but she just had scopes and they were perfect - no inflammation anywhere and all biopsies were normal! But her CRP is quite high, which I assumed was due to her arthritis but then yesterday her GI messaged her and said she wanted an MRE, fecal calprotectin and stool tests for infections (she has had some abdominal pain and diarrhea on and off and given her history of recurrent C.Diff, we have to check even though she is on Vancomycin).
So I think further investigation does make sense, especially since she hasn’t had scopes or a fecal calprotectin for a while.
 
Hey, all,

Popping in to say that L's ferritin is much much better (it was 37 at her three month draw and we're due for another one soon) after taking oral iron supplements for a few months. It really must have been straight up iron deficient diet that caused her issue. Her energy is a lot better, notably better, too. Yay!

That's all. 😃
 
my iron is low so i got looking around and decided to try some Iron Bisglycinate.....and the barnyard millet is officially a daily thing now...
that form seems a bit unique, hopefully it is smoothed as they say, ill try to update.
 
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