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Crohn's Disease Forum » Parents of Kids with IBD » Anemic and not getting better


09-08-2017, 09:18 AM   #1
amw2003
 
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Location: Deland, Florida
Anemic and not getting better

My daughter (14) has advanced Crohn's and she is anemic. Has been taking 2 Ferrex 150 capsules daily with no change. She had an iron infusion a couple weeks ago and still has an iron infusion level of 4. Has anyone else had this happen?
09-08-2017, 10:23 AM   #2
Guerrero
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Iron infusions increase more ferritin than iron levels. How was her hemoglobin? Is she is anemic you should monitor that even if it could take few months and more infusion to got hemoglobin and iron levels back to normal. Usually i got significant results in terms of hemoglobin increase at least 3 weeks after the infusion, while iron increase slightly but ferritin goes eventually higher normal range.
Hope she'll be fine soon
09-08-2017, 12:45 PM   #3
Maya142
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It happened to my daughter too. Do you mean Ferritin or total iron? Ferritin is what they should be following. My daughter needed 4-5 infusions over a month or two (now I can't remember exactly what we did - it was 5 years ago!) to get her Ferritin level up. Her hemoglobin was 9 but her Ferritin was VERY low - something like 3 I think.

We tried oral iron first but it upset her stomach and it didn't help her Ferrritin levels at all.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-09-2017, 11:05 PM   #4
Jabee
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Has his duodenum been scoped? I am more anemic if there is any inflammation there (as opposed to the rest of my small intestine). Also, have you tried different types of iron? Sometimes people respond better to one than another. I take ferrous gluconate every day. It's done a fairly good job; I am always slightly anemic, with my hemoglobin hovering around 10-11.
09-09-2017, 11:54 PM   #5
Catherine
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Has the hemoglobin level gone up at all?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-14-2017, 11:10 AM   #6
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
Her iron saturation level is 4. Wondering if she should see a hematologist or stay with Gastroenterologist for this issue also.
09-14-2017, 11:15 AM   #7
Maya142
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We were referred to a hematologist. He was more interested in Ferritin - those are iron stores, but also looked at iron saturation.
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