Iron infusion

[Lizette]

Hello, how long does it take for iron infusions to see difference In Michael he got his second IV today but last week he was tired and exhausted. They did a blood test today and his hemoglobin when from 10.3 to 10.1 we did not have the iron levels yet But to give you an idea of how low there where
June 7. Today June 21
Iron (65-75) 17
Iron saturation (20-50) 6
Hemoglobin(13.3-17.1) 10.3 10.1
Ferritin (22-322)
WBC (3.5-10.6) 11.3 10.1
RBC (4.27-5.69) 4.60 4.56
We try pills and liquid and nothing was bringing his iron up, so they decided to use IV after having Cdiff in March everything got worst. He lost 10lb for a kids 17 yrs he is now 89 pounds. They did not know if Cdiff activated his Crohn because for 10 yrs he did not have diarrhea, no stomach pain just fissures and abscesses wich they open all the time a drain. Due to the c diff and having pan colitis he is still swollen from intestines. Now he sometimes has the urge to go to the bathroom and sometimes just mucus comes along with drop of blood from anal fissure. Are this crohns flare ups? Having the urge and had to run to bathroom?
Thanks from your imputs.
Lizette
Michael 17 yrs penatsa,iron, vitamin D, probiotics ( past 6mp, Flagyl and cipro cause of c diff, asacol,)

 

[ronroush7]

I am going to tag Clash, Maya 142, my little penguin

 

[Maya142]

It can take a while. How low is his Ferritin? You have the range but not the number.

My daughter's Ferritin fell to about 6. It took several iron infusions before she felt better. She had a total of five over 5 weeks. Oral iron supplements also did not help her.

When she finally felt better (I think it took 2-3 infusions before she started feeling better), she felt MUCH better - we saw a miraculous change in energy.

Hang in there!

 

[Maya142]

It also sounds like his Crohn's is still flaring after the CDiff -- have they talked about trying a different maintenance medication to get that under control? Pentasa typically does not work very well for Crohn's -- is that all he's on now? Some doctors compare it to giving aspirin for a brain tumor -- won't really hurt, but won't really help.

 

[Tubes]

It took a good 6 months for my levels to improve while I started feeling better and had more energy after my 3rd infusion.

 

[Lizette]

It can take a while. How low is his Ferritin? You have the range but not the number.

My daughter's Ferritin fell to about 6. It took several iron infusions before she felt better. She had a total of five over 5 weeks. Oral iron supplements also did not help her.

When she finally felt better (I think it took 2-3 infusions before she started feeling better), she felt MUCH better - we saw a miraculous change in energy.

Hang in there!

Sorry The ferritin is 20

 

[Lizette]

It also sounds like his Crohn's is still flaring after the CDiff -- have they talked about trying a different maintenance medication to get that under control? Pentasa typically does not work very well for Crohn's -- is that all he's on now? Some doctors compare it to giving aspirin for a brain tumor -- won't really hurt, but won't really help.

You are absolutely right, we don't see that the Pentasa is working. To be honest, the doctor suggested Remicade, and that is not an option as of now. We might be doing canasa

 

[Maya142]

5 ASAs (like Canasa and Pentasa) typically do not work well in Crohn's since Crohn's affects all layers of the intestine and they only work on the top layer. If he has pancolitis that means his ENTIRE colon is involved but Canasa only works in rectum.

With fissures and abscesses, it sounds like he has quite severe Crohn's. Typically Remicade is used for severe Crohn's and works well in many cases. My girls have both been on it with no side effects, besides some fatigue the day of the infusion. No increase in infections or anything like that. I was terrified to put them on biologics, but honestly, it was the best decision we made and we've never ever regretted it, even for a second.

Now I'm just so very grateful biologics exist.

Untreated Crohn's can lead to numerous complications, including surgery.

I will tag some parents so you can hear their experiences:
crohnsinct
my little penguin
Clash
pdx
Pilgrim
Kimmidwife

 

[my little penguin]

Again why not an option
I personally fear the disease more than any med
Ds has been on biologics for 5 years
No issues
Gi tract is persistine
No damage which is unheard of given he was dx at age 7.
Each med has risks but using a med that isn't doing much really is taking all the risks but no benefit
Canasa isn't a maintence therapy as stand alone for crohns
Again just a 5-Asa
It can be used in conjunction with other meds but....

If you want no meds
Then EEN - no foods can be as effective for some as steriods
But it would need to be long term
Which is not ideal at all

I know your anti biologic but sometimes the disease has different ideas on what will and won't stop the damage and inflammation

 

[my little penguin]

Just as an fwiw my kiddo has been supplementing with en for the past 6 years.
He is currently on EEN for other Gi reasons
He is only 12 but weighs 99 lbs .
And is growing with his peers about 73 percentile for height

So even if your not doing meds getting inflammation under control can help get to a healthy weight and height for his age

 

[Maya142]

Inflammation often equals scar tissue which eventually leads to obstructions and surgeries.

It can also means fistulae, abscesses, fissures and other serious complications -- like perforation of the intestines and sepsis, which can be fatal.

The meds are scary, but the disease is scarier to us.

It sounds like your son is also underweight -- supplementing formula might help. Some kids choose to drink it and others aren't able to and so use feeding tubes.

 

[Lizette]

Inflammation often equals scar tissue which eventually leads to obstructions and surgeries.

It can also means fistulae, abscesses, fissures and other serious complications -- like perforation of the intestines and sepsis, which can be fatal.

The meds are scary, but the disease is scarier to us.

It sounds like your son is also underweight -- supplementing formula might help. Some kids choose to drink it and others aren't able to and so use feeding tubes.

Yes he lost 10 pounds because of the c diff he has supplements neocate.
He does have issues and absences that don't require surgery since they are draining all the time, no pain. Surgeon said keep using sit baths, and just use a cream around the anus.

 

[Lizette]

Just as an fwiw my kiddo has been supplementing with en for the past 6 years.
He is currently on EEN for other Gi reasons
He is only 12 but weighs 99 lbs .
And is growing with his peers about 73 percentile for height

So even if your not doing meds getting inflammation under control can help get to a healthy weight and height for his age

Yes he takes supplements. He is growing he is 5.4 considering that I am 5. And dad 5.5

 

[Lizette]

5 ASAs (like Canasa and Pentasa) typically do not work well in Crohn's since Crohn's affects all layers of the intestine and they only work on the top layer. If he has pancolitis that means his ENTIRE colon is involved but Canasa only works in rectum.

With fissures and abscesses, it sounds like he has quite severe Crohn's. Typically Remicade is used for severe Crohn's and works well in many cases. My girls have both been on it with no side effects, besides some fatigue the day of the infusion. No increase in infections or anything like that. I was terrified to put them on biologics, but honestly, it was the best decision we made and we've never ever regretted it, even for a second.

Now I'm just so very grateful biologics exist.

Untreated Crohn's can lead to numerous complications, including surgery.

I will tag some parents so you can hear their experiences:
crohnsinct
my little penguin
Clash
pdx
Pilgrim
Kimmidwife

The pan colitis was due to the severe c diff. that he had. The canasa is because his problem is perianal crohns, the canasa just works for the rectum. His crohns. Is only anal area.. And always has been. Even with 6mp the abscesses were always there. .

 

[my little penguin]

6-mp isn't designs to fix fistulas or abscess or perianal crohnd
Remicade has been studied numerous times and proven to help more than other drugs for perianal crohns /abscesses /fistulas .

I am glad he gets neocate
Ds drinks neocate Jr chocolate orally but 5'4 and 89 or even 99 is very low in weight
Can they increase his neocate intake ?

 

[Maya142]

6MP does not work well in perianal Crohn's. Neither does Pentasa. What works best according to studies is Remicade.

It sounds like he is very underweight, even for 5'4. My daughter had problems with her weight too. She's on Neocate. She had trouble drinking enough to gain weight and eventually had to go to an NG tube. It sounded very intimidating, but honestly, she got used to it quickly. She inserted it every night and took it out in the morning and no one at school had to know.

She feels much MUCH better now that she is getting enough calories. She was so malnourished and underweight that she was stuck in bed all day.

Part of your son's fatigue is the iron and the untreated Crohn's, but part of it may just be lack of calories. Are you working with a nutritionist? A teenager should really be growing and gaining rapidly and should be getting a lot of calories - at the very least, 2000 and probably more.

My daughter needed 2400 calories to gain weight and teen boys typically need more.

 

[Lizette]

6-mp isn't designs to fix fistulas or abscess or perianal crohnd
Remicade has been studied numerous times and proven to help more than other drugs for perianal crohns /abscesses /fistulas .

I am glad he gets neocate
Ds drinks neocate Jr chocolate orally but 5'4 and 89 or even 99 is very low in weight
Can they increase his neocate intake ?

He takes 2 cups a day of neocate with smothies, he has 3 flavors. He was 101 pounds before everything happens. My kids since they were born they were below de 50% always small and skinny. But now he is skinny bones, he started to eat more so hopefully he will start gaining his weight. Thank you

 

[Lizette]

6MP does not work well in perianal Crohn's. Neither does Pentasa. What works best according to studies is Remicade.

It sounds like he is very underweight, even for 5'4. My daughter had problems with her weight too. She's on Neocate. She had trouble drinking enough to gain weight and eventually had to go to an NG tube. It sounded very intimidating, but honestly, she got used to it quickly. She inserted it every night and took it out in the morning and no one at school had to know.

She feels much MUCH better now that she is getting enough calories. She was so malnourished and underweight that she was stuck in bed all day.

Part of your son's fatigue is the iron and the untreated Crohn's, but part of it may just be lack of calories. Are you working with a nutritionist? A teenager should really be growing and gaining rapidly and should be getting a lot of calories - at the very least, 2000 and probably more.

My daughter needed 2400 calories to gain weight and teen boys typically need more.

Yes, I'm working with the nutritionist. The crohns is not untreated, as a matter of fact at the mayo clinic they told me not to give him Remicade. My brother has crohns I know what it is . Know this disease for the past 25 yrs. but his was in the ileum. 10 yrs ago they remove all the colon. The only difference is Michael does not have the same syntoms as the normal crohns people. When we did the colonoscopy in April, the doctor said is either crohns or C diff he did not have a y fístulas . His Gi said the colon takes time to regenerate, and until then they won't know if he was on flare or Cdiff .. He just started yesterday making more solid stool, so that is a plus. He might be having a colonoscopy at the end of summer to check on colon. 3 years ago his colonoscopy was 100%fine, no gránulmas. So we have to want a little And see.
Thanks flor your imputs.
Remicade wil be The last option. I know people with remicade that still they fistulas.

 

[my little penguin]

2 cups is only 16 oz (480 calories ) so not much at all
Is he willing to drink more ?
Even without being "sick" from a flare ds was drinking minimum of 750 to 1000 calories of formula a day .
Especially if he isn't eating much
Teenage boys need close to 3000 calories a day

 

[Lizette]

2 cups is only 16 oz (480 calories ) so not much at all
Is he willing to drink more ?
Even without being "sick" from a flare ds was drinking minimum of 750 to 1000 calories of formula a day .
Especially if he isn't eating much
Teenage boys need close to 3000 calories a day

I know, is so hard to give him.honestly he takes it here and there. My husband already told him he needs to follow what the dr. Says. I wish I can give him more. The Hematologist told me once he gets the iron up , it is going to help with the inflammation, and he will eat more. If u have some Idea of what I can give him I will appreciated. He eats everything.

 

[my little penguin]

If he can't drink it most teenagers put an ng tube in at night
Get their feed an pull it in the morning
Neocate Jr just tastes bad
But ds drinks 66 oz a day
We pay him
At least for the first month

 

[my little penguin]

Tagging clash
Her son did similar for a long time same age

 

[Lizette]

If he can't drink it most teenagers put an ng tube in at night
Get their feed an pull it in the morning
Neocate Jr just tastes bad
But ds drinks 66 oz a day
We pay him
At least for the first month

Thank you. We are seen his Gi in July , if by then he is not gaining no weight I will suggested to his Gi. I know de neocate tasts bad. Good idea I should pay him
Thanks

 

[my little penguin]

If he doesn't have food allergies
Polymeric formula tastes a lot better and works just as well
Ensure
Ensure clear
Boost
Or semi elemental peptamen
Peptide etc....
Much easier to drink than elemental and as effective

 

[Catherine]

There are a number of causes for anemia.

The most common is Iron-deficiency anemia, which iron infusion should help.

Another is Anemia of Chronic Disease, where you need to treat the underlining disease.

If the iron infusion are working you should see a rise in hemoglobin and ferritin. If the hemoglobin falls/stay the same and the ferritin rises your dr should start to look at other causes of the anemia.

http://www.melbournehaematology.com...ourne-haematology-guidelines-iron-studies.pdf

 

[Lizette]

There are a number of causes for anemia.

The most common is Iron-deficiency anemia, which iron infusion should help.

Another is Anemia of Chronic Disease, where you need to treat the underlining disease.

If the iron infusion are working you should see a rise in hemoglobin and ferritin. If the hemoglobin falls/stay the same and the ferritin rises your dr should start to look at other causes of the anemia.

http://www.melbournehaematology.com...ourne-haematology-guidelines-iron-studies.pdf

Thank you so much. This Tuesday he will go for his 3rd infusion and then I can compare his blood test.
He did no want to do the 3rd infusion since he had a horrible experience with the nurse. But finally he said yes.. As a matter of fact this days he is feeling with more energy. Cross fingers he will do better each time.
Thank you

 

[Lizette]

Thank you all for all your imputs, I really appreciate all the replies , so much you learn in this forums, even the small things that sometimes we don't know, how can they help us. I just pray that every child that has crohns colitis or other autoimmune disease gets better . Be strong, as one friend told me 10 years ago. This is the cross that you have to carried, do your best..
Thank you all
I will keep you posted how things are doing

 

[Eridon2002]

I did the 5 weeks/5 infusions and I never felt any difference in my energy level or with the Crohn's symptoms. When my iron levels were tested a few months later I was still anemic.

 

[Lizette]

Hi all,
We started 3 week today, Michael felt much better last week he had much better and was and is very optimistic. We had the lab results from last week
Comparison with week one.

Iron 1st week. 17. Last week 24
Total iron binding 274. 255
Iron saturation. 6. 9
Ferritin. 20. 205
Hemoglobin. 10.3. 10.1. Today. 10.8

For some reason the C reactive protein is this high 38.90 more than when he had c did.
In November 2015 was <9.67
In FEbruary 2016 <2.90
begining of May he was 18.1
May 27. 10.8
Nothing has change in his bathroom habits, there is some inflammation obvious, he also has allergies to the air.. We know he has Eosinophilos Esophagaites but asytomatic. Could that be inflation since he gasp his thought a lot.?
Thank you. The dr will call me today or tomorrow with the iron levels from today.
Lizette

 

[Lizette]

I did the 5 weeks/5 infusions and I never felt any difference in my energy level or with the Crohn's symptoms. When my iron levels were tested a few months later I was still anemic.

Thank you. He is doing better after the 2nd infusion
He still has one more and maybe one more month weekly ..o bi weekly depends on his iron levels in 15 days
Lizette

 

[my little penguin]

EOE or even IgE allergies do not raise crp or sed rate
Ds is extremely atopic
Are you treating his EOE even though he is asymptomatic
For ds if one of his other systems is not under control then his Gi stuff joins the party as well

 

[Maya142]

His CRP is pretty high. That suggests inflammation. Have they done a Fecal Calprotectin recently?

 

[Lizette]

His CRP is pretty high. That suggests inflammation. Have they done a Fecal Calprotectin recently?

No Maya, as a matter of fact last appt with his Gi end of May I told him about that test he said he will do it latter since if will come positive for inflammation due to his c diff. So end of July we have appt. I will ask Kim again about that test.
Lizette
I was surprise his CRP was very high
Lizette

 

[malorymug]

Hi, my son has fistulas and abscesses too, diagnosed in January. Remicade has been great in closing up the fistula tracks and with the help of antibiotics, clearing up the abscesses. We still have a ways to go but definitely on the mend.

Are the docs talking about surgery to clear up the fistulas/abscesses?

 

[Lizette]

Hi, my son has fistulas and abscesses too, diagnosed in January. Remicade has been great in closing up the fistula tracks and with the help of antibiotics, clearing up the abscesses. We still have a ways to go but definitely on the mend.

Are the docs talking about surgery to clear up the fistulas/abscesses?

Hi Malorymug, sorry I'm late answering you, the doctors said he does not need surgery at this time , they said just keep doing the sitbaths and put anusol around the skin.
Lizette