Iron tablet question

[UKmum]

Hi there

Awaiting stool test but my son 13 (Ulcerated colitis) ferritin is is 26 (range is 30-300) I was told via the GP receptionist.

GP wants to prescribe Ferrous fumarate for 6 months - is this ok? I am waiting for the IBD nurse to come back but she can take days ...

Thanks

 

[my little penguin]

Does he see a pediatric Gi ?
Normally the GI prescribes meds and handles iron issues not the pediatrician or general pcp .
Iron can take many months to work when taken as tablets

some kids do better than others
Mine did not tolerate iron tablets very well
We tried every version including infant drops
Thankfully once the right meds were given his iron stores (ferritin ) was at a good level

how is the rest of his Gi bloodwork?
Imaging ?
Fecal caloprotectin?
Scopes ?
Most of the time getting the right maintenance med is all that is needed
Since that stops the blood loss in the Gi tract
Iron tablets are only a bandaid until you can get the blood loss to stop with another long term therapy

 

[UKmum]

Thanks

His bloods are done at the local doctor as it's easier than the IBD hospital in London Abd they get fed back to them so that is why I've I've messaged his IBD nurse.

Stool test we are doing tomorrow as not done since January. Scopes done over a year ago at diognosis.

I'm just slight panic mode that this means a flare is on the way.

 

[my little penguin]

What maintenance meds is he on to keep inflammation from coming back ??
He may be flaring if he is losing blood but may not have symptoms on the outside that you see.

UC typically can do well on just 5-ASA since only the surface of the intestine get inflamed and not the full thickness (as in crohns )

5-Asa coat the surface
Although some need stronger drugs

 

[UKmum]

Thanks

He is only on Pentasa

Bowel Movements once a day and no blood (he can see) no other symptoms

I just need to get the stool test off and not panic.

 

[my little penguin]

So if he is on Pentasa
That’s good
Worse case scenario your catching it early before other signs outside and they just switch meds
Which sounds scary
But very easy
Ds has switch 7-8 times over 11 years
Started on Pentasa at age 7
But he has crohns so not as effective
Moved through 6-mp,mtx and remicade over the next year then humira
Settled on humira plus mtx for about 5 years (due to crohns /juvenile arthritis)
Now on Stelara plus mtx for the past almost 5 years
So you can get to a nice steady place

 

[UKmum]

Thanks My Little Penguin

Still finding my feet with this all and still find it all such a worry

I'm def not giving him the tablets prescribed by GP as I googled it and not good on the tummy- how silly of him to have prescribed it!

I might try with the liquid iron whilst we wait for stool results - hoping to get that after school tomorrow

 

[my little penguin]

All iron tablets are hard on the stomach
But low iron (ferritin is the pantry for iron storage -you can’t let it get empty )
Has to be treated either pills
Or iron infusions which have their own risks

 

[my little penguin]

But wait for Gi since they tend to prescribe a higher dose to be effective .

 

[UKmum]

Thanks so much

He had an iron transfusion a year ago
With much lower ferritin .. rather avoid it as it made him feel rough for a couple of days

I'll wait for the nurse to get back I just wonder how long it's been low for - he said he has feel tired for ages

 

[Maya142]

My daughter has found that certain iron infusions are easier to tolerate than others. The first two times she had infusions, she was given a certain formulation of iron that was infused over an hour and had absolutely no side effects. Last time she was given one that is infused in 8-10 minutes and that one caused nausea and constipation for almost a week! I can't remember either of the names unfortunately. But my point is that there isn't just one type of iron infusion - there are many different kinds. And according to my daughter, she felt MUCH worse on iron pills and liquid iron than with either type of iron infusion.

My daughter was also exhausted and very pale when we found out she had low Ferritin the first time. But after each infusion, she felt better and better!! She didn't have any side effects at all the first two times. The first time her Ferritin dropped to 3 and the second time and third time, it was 8 or 9.

I wouldn't panic since you have LOTS of medication options left for UC. MTX, Azathioprine/6MP, Remicade, Humira, Stelara, Entyvio, Simponi and even Xeljanz.

 

[UKmum]

Nurse has offered an IV drip for him once she sees all blood results. It's been a year since the last one. I hope it perks him up a bit!

 

[my little penguin]

Have they said when he will get the iron infusions?

 

[UKmum]

Hi - no not yet she said she wanted to look at all of his bloods to decide if it's needed. She must have these by now

Waiting for stool test result as well.

 

[UKmum]

Just wanted to update here as might be helpful for anyone else

The nurse said that as his other bloods are fine (think she means hermaglobin) that he doesn't need iron infusion. She said I can try the tablets but I don't want to incase it makes flare up etc

I've tried liquid iron (spatone) in a drink but he can taste it - so can I so not sure how to get his iron up.

Any thoughts?

He is quite fussy with good / veg etc so I can't do it that way

Thanks

 

[my little penguin]

13 is tricky
He needs to understand that what meds including iron are required for his disease
He is well past the age of trying to “hide” meds
If he is still having a difficult time understanding it is not an option to not take it
Then maybe Gi has a psychologist on staff
Most pediatric Gi offices in the US have medical coping psychologist to help
Kids with chronic illness have a lot to deal with add in “teenage invincible “ and things can get tricky
This way they feel like they are part of the decision process /have control and not having things just “done to them “
Really soon he will be in charge of all medical decisions so until then he has to trust you and the docs /team
“Hiding “things will erode that trust

Please talk to him honestly about why it’s important
What affects low iron has on his body etc…

In the end it will make things much easier

Mine is 18 so we no longer have an official say but given he was 7 at dx
We have always included him in discussions and decisions as much as possible
This has allowed him to now ask us for our opinion on how to proceed with his current care .

 

[UKmum]

Thanks

He is very good at anything medical including taking his massive Pentasa tablets. But taste of stuff that's not nice is a no no (including bowel prep)

It is literally the taste of the sachets - I'll try him again and reiterate it shouid make him feel more energetic!

 

[my little penguin]

I would speak to him again
Then ask him what he would like to try it in if anything
My kiddo takes prescription probiotics which are wretched
Orange flavored Gatorade or cherry koolaid cover the taste some for my kiddo but he tried many things
But if I offer him milk or other things to put it in nope -he states it makes it taste worse
So it is trial and error
Much better if they pick

 

[GirlwiththeCurl]

My daughter just started taking ferrous sulfate tablets about 5-6 weeks ago. I was very concerned about how she would tolerate them, but they don't seem to be bothering her at all. (She went off a PPI at the same time which did cause problems, but since restarting that she's been fine.) So perhaps the tablets would be worth a try? If he can't tolerate them you can back off of them.

 

[crohnsinct]

Other than making sure he is eating foods with loads of iron in them you could also try to cook with iron pots and pans. A little iron leaches into the food. This was a suggestion made to me and it helped push one of my daughters back into normal range. My other daughter who has severe disease needed an iron infusion.

 

[UKmum]

Thanks both ... interesting re iron pots and pans!

I managed to get a sachet of Spatone in him using a strong orange squash .. it's also very hot in london so he was v thirsty!! Il persevere before trying the tablets x

 

[UKmum]

Girl with the Curl - have you noticed a difference in energy levels? Glad it's agreeing with her

 

[GirlwiththeCurl]

Girl with the Curl - have you noticed a difference in energy levels? Glad it's agreeing with her

According to her, she didn't get tired as quickly as usual when she was at a friend's house, but I haven't seen any big obvious jump in energy. If she's got slow GI bleeding going on, I'm not sure how much the tablets will help until it's addressed, but we're waiting on test results for that.

 

[UKmum]

Update Incase anyone needs ideas:

Managing to get Spatone in to him with strong fresh icy orange squash once home from school and very hot/thirsty so he has been drinking it.

Think I've seen more energy so will continue - he is unaware it's in there or turning a blind eye because mumma knows best!

I stil have To wait until October for another blood test so not sure where iron levels are (unless of course anything kicks off beforehand)

 

[Scipio]

Managing to get Spatone in to him with strong fresh icy orange squash once home from school and very hot/thirsty so he has been drinking it.

Translation for Yanks of the Brit Speak: "orange squash" usually refers simply to orange juice and not to any of the many varieties of squash that happen to be colored orange.

 

[UKmum]

Oh yes .... so not fresh orange - the one you mix with water! Squash?

Hopefully that clears it up

 

[Delta_hippo]

Just to say spa tone only has a small amount of iron in it so you may be fighting a big battle for minimal outcome. When I was pregnant and anaemic I used spatone and didn’t make enough difference so had to switch to iron tablets which aren’t pleasant. Have you tried blue iron liquid iron - it is mixed with blueberries and tastes fine (my son doesn’t mind it either) and contains vitamin c to help absorption and you can get it on amazon. The other one to try is floradix iron liquid which also contains vitamin c and is on Amazon (other online retailers are available) and you can get a gluten free version. Hopefully he will tolerate at least one and get a decent bit of iron in him.

 

[UKmum]

Thanks delta I will take a look.

I have been getting a sachet in him daily now I feel like I've seen an improvement.