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IV iron

Hello all! Have a question about frequency of iron infusions ...
Just to give a little background, my son is 5, recently diagnosed with Crohn’s. At the current time he is only taking omeprazole and starting Pentasa as soon as we get it straightened out with the insurance company. He is anemic (as I think most kids with Crohn’s are?!)
Oral iron of course does not work for him, so he’s going to need regular iron infusions. Hemotologist has told us that for now he’ll need a set of four infusions. She’s given us the option on how frequently we have them done. We could go for days in a row and be done with it. We could go once a week for four weeks, etc. looking for any ideas or suggestions on this. Thank you
**ETA: if your child gets the iron IV, do you continue giving them oral iron as well ?
 

my little penguin

Moderator
Staff member
Please understand that monotherapy of using only pentasa users no longer recommended for kids with crohns . Crohns affects the entire thickness of the intestine. Drugs like Pentasa are 5-asa and are the equivalent of using an aspirin to treat a brain tumor not going to hurt but not going to help much either .
Pentasa onky treats the top layer of the intestine which is why it works well for ulcerative colitis but not for crohns
Some insurance companies require you go from the bottom up
Meaning you have to fail each drug level first before moving to more effective drugs
5-asa are the lowest level -least rusk but least effective
Immunosuppressants (methotrexate) is next level
Biologics remicade humira highest level most effective

most kids with crohns are not anemic after they are treated properly and inflammation is under control.

iron infusions are hard on the body so spacing them out would make more sense .
Especially on a 5 year old

also understand very early onset ibd is very difficult to treat
Kids diagnosis under the age of 8 with ibd have veo ibd
There are specialty centers in the US for these kids
Please get a second opinion
Children’s hospital of Philadelphia has an excellent veo ibd program
Highly recommend it
Ds was dx at age 7
He started Pentasa
And like you I was a mess trying to figure out what I didn’t know
He got sicker while on Pentasa
Switched to 6-mp which helped a tiny bit (they no longer recommend 6-mp due to high lymphoma risk )
Then to methotrexate and after a year of being a ness they started him on remicade
Suddenly the kid who I didn’t think was that sick
Thought he was ok
Was magically getting into trouble causing mischief growing and full of energy

Ds is now 16 and on Stelara /methotrexate due to crohns /arthritis
He is doing well

good luck
 

Maya142

Moderator
Staff member
My kiddo had iron infusions. Her Ferritin was very low and we tried oral iron supplements for a while but they caused GI side effects and her Ferritin became even lower, so she ended up needing infusions. She had them weekly for 4-5 weeks. They worked very well and her Ferritin became normal. We did not continue iron supplements orally while she was having infusions or even after infusions. We did, however, start her on a multivitamin for teen girls (she was 15 at the time) after she was done with infusions, which did have some iron in it. It was recommended by her pediatric hematologist. She has not needed iron infusions since, because her IBD has mostly been under control with medications.

Like MLP said above, children should not need iron infusions regularly due to IBD. Anemia is common in kids with IBD, but usually only if the disease is not under control. So controlling the disease should be a priority and studies show that Pentasa does not work for Crohn's disease, by itself. Usually kids need an immunomodulator like Methotrexate or 6MP (although 6MP comes with higher cancer risks so is not used as much now) or a biologic like Humira or Remicade. My daughter has been on a biologic for her Crohn's for many years and her Crohn's has been very well controlled AND she's had almost no side effects at all in 10 years or so.

The iron infusions themselves were pretty easy. Hers were about an hour long. No side effects or issues that I can recall. Make sure he is well-hydrated before the infusion - that will make it easier for nurses to get an IV in. Good luck!
 

my little penguin

Moderator
Staff member
Buzzy for shots can help your child not feel the pain of the iv and works for blood drAws as well
It’s great for little kids

Ds has has his “bee” for 12 years
Still works although he rarely needs it now
They only had one size and kind then 😂
 
Thank you so much for the information. I’ve read this post over and over again but I just couldn’t respond.... We are now on our 3rd GI and found someone we feel comfortable with. The first doctor we saw I just took the first person I could get an appointment with, because I never in 1 million years thought it would turn out to be something serious. This doctor definitely did speak to us about the other drugs, but is also OK with us starting out at the lowest level. Kind of funny in a not funny way what you said about the insurance company, because we are quickly realizing that they cover nothing!!! I am terrified what’s going to happen if we need to continue on with the higher level/more expensive drugs. I will definitely be looking into the patient assistant programs as I’ve seen you mention before. Thank you again
Please understand that monotherapy of using only pentasa users no longer recommended for kids with crohns . Crohns affects the entire thickness of the intestine. Drugs like Pentasa are 5-asa and are the equivalent of using an aspirin to treat a brain tumor not going to hurt but not going to help much either .
Pentasa onky treats the top layer of the intestine which is why it works well for ulcerative colitis but not for crohns
Some insurance companies require you go from the bottom up
Meaning you have to fail each drug level first before moving to more effective drugs
5-asa are the lowest level -least rusk but least effective
Immunosuppressants (methotrexate) is next level
Biologics remicade humira highest level most effective

most kids with crohns are not anemic after they are treated properly and inflammation is under control.

iron infusions are hard on the body so spacing them out would make more sense .
Especially on a 5 year old

also understand very early onset ibd is very difficult to treat
Kids diagnosis under the age of 8 with ibd have veo ibd
There are specialty centers in the US for these kids
Please get a second opinion
Children’s hospital of Philadelphia has an excellent veo ibd program
Highly recommend it
Ds was dx at age 7
He started Pentasa
And like you I was a mess trying to figure out what I didn’t know
He got sicker while on Pentasa
Switched to 6-mp which helped a tiny bit (they no longer recommend 6-mp due to high lymphoma risk )
Then to methotrexate and after a year of being a ness they started him on remicade
Suddenly the kid who I didn’t think was that sick
Thought he was ok
Was magically getting into trouble causing mischief growing and full of energy

Ds is now 16 and on Stelara /methotrexate due to crohns /arthritis
He is doing well

good luck
 
He has had three infusions now. After the first we got to go to a different infusion center, and they were fabulous! They had a freezing spray they use before the infusion, and then Buzzy as well. Thank you!
Buzzy for shots can help your child not feel the pain of the iv and works for blood drAws as well
It’s great for little kids

Ds has has his “bee” for 12 years
Still works although he rarely needs it now
They only had one size and kind then 😂
 
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