03-04-2018, 07:44 PM   #1
Join Date: Jun 2017
Location: Deland, Florida
Entyvio for Kids

My daughter met an 11 year old with Crohn's whom is seeing a Doctor that has only been in practice about 5 years. He put her on Entyvio and sent her to an infusion office that only deals with adults and they put three separate IV's in her home at same time with the drug, another with fluids and another with something else. he also told her she can eat whatever she wants. This girl is not doing well at all. My daughter also has sever Crohn's but she gets Remicade and goes to Children's Hospital for infusions, we both live in same area. Also our Dr. has over 20 years experience. I did not know that Entyvio was allowed for kids. My daughter also does not eat strawberries anything with seeds, fruit with skin on, etc. follows a Crohn's type diet so she does not have flareups but has a problem with iron. I am concerned about her new friend getting proper treatment.
03-04-2018, 08:20 PM   #2
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Maya142's Avatar
Entyvio is not approved for kids, but it is being used on kids who have failed Remicade and Humira. There are so few treatments for kids - Remicade and Humira are the only biologics - that kids who have developed antibodies or didn't respond to Remicade/Humira HAVE to try the newer biologics that are only approved for adults - like Entyvio, Stelara, Cimzia and Simponi.

We have found the number of years a doctor has been practicing can mean nothing. We have had younger docs who have been wonderful and very involved and up on the research and older docs who have many years of experience and so dismiss any of the problems we mention.

So it really varies.

Some kids do have to have infusions at adult infusion centers - sometimes that is dictated by insurance.

I have not heard of 3 IVs at once, but I doubt it harmed her. It was probably fluids, plus Entyvio plus Solumedrol (a steroid) which is sometimes given to prevent a reaction.

As for diets, every kid is different, but most GIs say no nuts, seeds or popcorn for kids with Crohn's.
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
03-05-2018, 01:55 PM   #3
Senior Member
Join Date: Mar 2012
Location: California

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I am not sure about the three IV's but Maya's explanation makes sense to me.

We see plenty of kids on Entyvio at our infusion center so while it isn't typically the first line drug, it is used with kids.

As for diet, my daughters' only restriction is popcorn. At the beginning when my daughter's disease was VERY active, the GI restricted seeds, nuts etc and put her on low fiber but as she healed all those restrictions were lifted. They have both seen three GI's...two older guru's and now one younger less experienced doc. They all agree on the diet and I dare say we like the younger less experienced doc waaaaay better than the two older gurus.

This young lady is lucky to have a fiendlike your daughter and you who are concerned and looking out for her. Nice that your daughter has made a friend who understands the disease to!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-05-2018, 02:36 PM   #4
Join Date: Jun 2017
Location: Deland, Florida
The other girls Doctor also send her for 3 blood tests a month and did not tell her to take Caltrate which is something every Doctor we have seen says to take. Crohn's kids are more likely to have brittle bones let alone problems with their teeth if they do not take it. We are sticking to the diet of restricting certain items since she is used to it and I believe they could cause a flare.
03-05-2018, 03:02 PM   #5
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Join Date: Mar 2012
Location: California

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Both of my daughters had dexa scans at dx. One was told to take calcium and the other wasn't. It is all individual I guess. Interestingly enough, the two docs we saw after dx never mentioned calcium one bit to us and either of them knew the results of the exa scans AND we are vegetarian/vegan and limit all dairy! Not saying you need dairy for strong bones...this is a debate for another forum BUT most docs here vegan and freak about calcium and neither of the new docs batting an eye.

Food does not cause a flare. However, if you are in a flare or have some ongoing inflammation or strictures it could make you more uncomfortable or cause problems. If your daughter is early in diagnosis, absolutely restrict what the GI is asking you to restrict.

I also subscribe to the theory, "if it ain't broke, don't fix it!".
03-05-2018, 04:55 PM   #6
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Maya142's Avatar
Some doctors only recommend Calcium when the kiddo is on Prednisone. Others recommend it all the time. If the child has had a Dexa scan and has low bone density then it is almost always recommended.

But if the child has normal bone density and is not on steroids, then not always.

My daughter has low bone density (confirmed by numerous DEXA scans) and she takes Calcium daily.

Vitamin D - our GI recommends it only when my daughter's results show she is low.

It does vary depending on the doctor.

As for food, it is also very individual. Most doctors suggest low fiber when the kiddo is very inflamed. But otherwise it depends.
03-05-2018, 06:17 PM   #7
my little penguin
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Join Date: Apr 2012

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Honestly you canít compare kids at all
Your child is being given advice by your GI based on your daughters history and your GI experience
The other child may have different history and different medical needs
That is why everyone sees there own doc
Itís not one size fits all
Even with the same GI

We know other parents who see my sons GI
Treatment and testing is different
Even in the same household
Both my kids have asthma
But his they are treated and tested is very different

Ds is in Stelara
And no itís not approved for kids
Does he need it you bet
Does he get blood work more often if he isnít doing well
Yes definitely
When he is doing great
Not so often

Does he take calcium
Nope had a Dexascan and us followed by Endo for adrenal insufficiency
But does not need supplemental calcium

My kiddo takes 50% of his diet as amino formula as part his Crohns treatment
It works for him
Do other kids with Crohns need this
Probably not

Vety individual
Being at this for over 7 years now
No two kids have the same treatment

So glad your Dd is doing well
DS - -Crohn's -Stelara -mtx

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