Iron infusion and kids?

[griffin123]

My son is on 6MP and has been on it for a month now and has been doing really good. His GI specialist has been pleased with his lab results since he started the 6 MP but he's not happy with his iron levels, they have not budged at all. We doubled his iron pills but gave him a stomach ache and still his levels didn't move so his GI wants to do iron infusions once a week for 4 weeks. I was wondering if any other children have had iron infusions and if they worked for them or not?

Thanks

 

[Jmrogers4]

Sorry no experience with iron infusions but sending you loads of support. Do you guys see the St. Lukes Pediatric GI's or do you see someone in Caldwell?

 

[griffin123]

Thanks, we go to St. Lukes pediatric GI in Boise. we see Dr. Burpee. Is that where you guys go to? I like him a lot better than the doctor we saw at Doernbechers in Portland OR. We just moved from Oregon last month. This Dr. wants to fight it aggressively to get it under control now, the other doctor was just like a wait and see how things go type of thing.

 

[Jmrogers4]

We love Dr. Burpee! We see Dr. Ellison but Dr. Burpee is the chaperone for Camp Oasis so flew over with Jack to camp last month, he would definitely be my pick if we weren't already seeing Dr. Ellison who we absolutely love. I think they regularly talk amongst themselves about treatment and best treatment options for patients so it is like getting 4 doctors in 1 Plus how can you go wrong with a GI named Burpee.
Welcome to Idaho.

 

[griffin123]

We had our first appointment with him the week before camp and he told us all about it, our other GI specialist never mentioned the camp. Nathan is going to go next year, I would have signed him up this year if I knew about it. We really like having a male doctor, Nathan feels more comfortable with him, his other one was a female. Do you know if they have any support groups for kids in this area? I would really like for Nathan to meet some other kids going through the same thing he's going through since he's new to all this. Maybe we can plan a meet up with our boys since they are the same age. I can come to Boise since there's more to do there.

 

[Maya142]

My daughter had iron infusions last year. They were very easy and short (compared to Remicade), about 30 to 45 minutes. My daughter got to read or watch TV during the infusion and quite enjoyed the time to relax!
Her ferritin level (which was 4 before the infusions) was in the normal range after 5 infusions. It has stayed normal since then, and I just give her a normal multivitamin - no extra iron.

 

[griffin123]

Thank you Maya, the nurse didn't know how long it takes because she doesn't do it so she said maybe an hour or 2? I hope it's only 30 to 45 min that would be nice since I have to bring my 7 year old with me. I hope this works for him and brings his iron levels up. Nathan gets so tired in school and almost falls asleep in some classes so hopefully this will help when school starts.

 

[Maya142]

My daughter was just the same (though she was 15 I think, at the time). She was very pale and absolutely exhausted all the time before the infusions. Now that we've gotten her ferritin levels up she has a lot more energy.
Our infusion were definitely less than an hour - she had 5 over four weeks I think.
I hope they go help your son!

 

[Jmrogers4]

No support groups around here unfortunately. This was Jack's 4th year at Camp and the first time somebody else from this area went. A 15 year old from Nampa. I think Jack was starting to think he was the only kid around here with Crohn's. It would be great to get them together

 

[Crohn's Mom]

Sorry , we have no experience with iron infusions, but we have experience with anemia and being threatened with infusions ! LOL

I hope you you are able to have this be a solution :hug:

 

[plaidknitter]

I have IBD not my daughter but she has many medical issues of her own and had to have an iron infusion as a young toddler. She'd had IVs before, and it went fine. I do think it took longer than an hour, but it got her levels up after diet & supplements both failed.

 

[xmdmom]

Can anyone tell me at what level of Hemoglobin their doctors chose to do iron infusions? My son struggles with oral iron and his ferritin remains very low.

 

[griffin123]

When my son got diagnosed in January his Hemoglobin was 10.2 and it has now gone down to 9.5 so since it's going down and not going up his GI specialist wants to do the infusions. His old GI didn't even put him on iron until the end of may, that made me mad that she waited 4 months knowing he was anemic before she did anything. I think if maybe she started him on iron in the beginning he might have absorbed it some when he was on prednisone and the inflammation was down.

 

[Maya142]

My daughter's hemoglobin was 9.4 I think and her ferritin was 4. To do the infusions we had to see a pediatric hematologist. She did try oral iron supplements but they made her very nauseous so after a couple of weeks we decided just to go ahead with infusions.

 

[Mehita]

Are infusions better tolerated? We're kind of struggling with the iron sulfate pills here, but it doesn't sound like my son is nearly as low as all your kids. Maybe that's why we are on pills versus infusion? His last hemoglobin was 11.9 and ferritin was 10... both in the low, but normal range.

 

[positivemum]

They are interested in the ferritin level and it needs to be above 15. My son struggles and last year and this year has had a 4 week course. It works and boosts him but it doesn't last forever. He had the last 4 in Feb and we are back for 2 now but higher doses. He does struggle to have an iron rich diet despite loving steak and roast beef. The infusions take about an hour including flushing the line through. He is ok with them - just the canula part not good.

 

[Maya142]

Mehita -My daughter's hematologist was also more worried about ferritin than hemoglobin. My daughter also had to try oral supplements before we did infusions. We tried a few different kinds, including iron sulfate, but they made her nauseous and miserable so then infusions were recommended.