EndoScope, Coloscopy and Biopsy Results In

[amw2003]

Two years ago at age 13 daughter was diagnosed with Crohns and Colitis, esophagitis, iron deficiency anemia. Remicade every 8 weeks and now two years later she is on remicade every 4 weeks and a high dose. Just had another colonscopy,endoscope with biopsy end of April Crohn's is still active and severe and Colitis as well according to results and has never gone into remission. Tried to go to CHOA for second opinion as too next step but insurance will not cover. Obviously Remicade will quit working as some point as it is not staying in her body, so what is next?

 

[my little penguin]

When was her last scope
Before switching meds you need a new scope /imaging
Next step meds depends on what the scopes /imaging find
Those typically are humira
After humira they switch to cimiza -Simponi or Stelera

 

[amw2003]

She had a scope on April 24, 2018 due to everyone on this forum telling me she should have one. She also has iron Deficiency anemia and bleeding from several areas. They found everything above on the recent scopes

 

[Maya142]

Humira is a possibility. Does she have small bowel Crohn's as well Crohn's colitis (inflammation in her colon)?

If it's primarily in her colon, then Entyvio may be an option. It's a biologic but gut specific, so comes with fewer infection risks. The downside is that it can take 6 months to work and sometimes longer.

If it's both her small bowel and colon that have active inflammation, then Stelara is an option, if your GI does not want to try a second anti-TNF (like Humira). Stelara also takes about 6 months to kick in.

Humira, if that's what is chosen, works faster. It generally works within 3-6 months, though it can work much faster for some patients.

Honestly, it depends on the kid and the doctor. In the past, Humira was always done after Remicade, because that was the only option. Now things have changed - there are more options - so it really depends on the situation.

If she did respond to Remicade initially and later lost response, due to antibodies for example, then they may try Humira since blocking TNF works for her - it controls the disease.

If she never responded to Remicade in the first place, then it's likely blocking TNF did not work for her, so another anti-TNF won't help either. Then they usually switch to a drug with a different mechanism - such as Entyvio or Stelara.

Remind me, what dose is she on? 10 mg/kg? Because some GIs will go higher than that. My daughter went to 20 mg/kg every 4 weeks for her arthritis.

And is she on MTX too?

I'm going to tag a few parents who may have ideas:
my little penguin
crohnsinct
Tesscorm
Pilgrim
pdx
Clash

 

[Maya142]

Your daughter's doctor was the one who was denying her anemia was Crohn's related, right?? And he found bleeding areas???

That makes me so angry for your poor girl, who suffered much more than she needed to!! I know you have insurance constraints, but I wish she could see a second doctor. I can't believe they denied the second opinion :mad2:. This is so ridiculous.

Tell your sweet girl to hang in there. Hopefully they will get her feeling better soon.

 

[amw2003]

She has it everywhere and never went into remission. Was down to 60lbs when started 2 years ago. What about the liquid (Een) nutrition I have heard about.

 

[amw2003]

She cannot see an out of state Doctor on Medicade, wanted to take her to Atlanta since that is not to far and 4th best place for Crohn's in USA. They have had her on double iron infusions and every week for the anemia after we saw a hematologist since the GI thought for sure she had a blood disease.

 

[crohnsinct]

Did they do a Remicade levels and antibody test? It is possible she is not in remission because she is not on a high enough dose. Or she is building antibodies. If she is at the max dose your GI will consider, you can add methotrexate. At the beginning when my daughter was having a tough time getting to remission with Remicade alone, we added exclusive enteral nutrition. That got her to a point of remission where then the Remicade could take over.

O has been in a flare for almost two years now. She is currently on 10mg/kg every 4 weeks. Rather than change drug, her GI has her doing a two week course of Flagyl/Cipro and moved her to 15mg/kg.

If she continues to fail Remicade, his next drug of choice is Entyvio. I didn't get a chance to ask him why though. Typically they only move from one anti tif to another if you responded to the first and just lost response but if they think you truly never responded to the first anti tnf, they will usually switch to a drug with a different mechanism (Stelara etc).

 

[pdx]

She has it everywhere and never went into remission. Was down to 60lbs when started 2 years ago. What about the liquid (Een) nutrition I have heard about.

EEN is not a long-term solution, but can be used to induce remission while you wait for a maintenance med to start working. It might be a good short-term choice for your daughter right now. Check in with your insurance. Some insurance will only cover EEN if you use an ng-tube.

Hope you can find a treatment that works well for your daughter.

 

[Maya142]

Yes, you could use EEN but it's usually used to induce remission, in place of steroids. It works well, but your daughter would have to be fully on board - otherwise teens can easily get food from friends or at school. Some doctors allow kids to do 80% formula and 20% food, and that helps with compliance.

But the formulas can be expensive and insurance may or may not cover it. It is definitely worth looking into though (if your daughter is willing) because it works very well (mucosal healing is better than on steroids). Some doctors will use polymeric formulas like Boost and Ensure - those are most palatable.

Some kids can't tolerate those, especially if there is severe inflammation. So there are semi-elemental formulas, like Peptamen Jr and Pediasure Peptide, which are more broken down but do taste worse. Some kids are able to drink them and some need tubes.

There are elemental formulas too - broken down into amino acids and easiest to absorb. Some kids need these, including my daughter. Neocate Splash and Elecare are elemental. Most kids have a very hard time drinking them because of the taste.

A tube is less intimidating than it sounds and a good choice for some kids. My daughter inserted hers every night, did the feed and removed it every morning before school, so no one at school had to know.

EEN is not really used for maintenance because it's really hard for both kids and adults to give up food entirely, indefinitely. Short periods of times are hard enough, so mostly it is used to get the disease under control when it is flaring.

 

[amw2003]

She is now getting 400mg remicade since scopes.

 

[crohnsinct]

How much does she weigh now? A total dose of 400 mg comes out to 10 mg/kg for an 88 pound person so if she weighs about that she wasn't exactly on a high dose of Remicade yet. What is the interval? Every how many weeks? Loos like maybe she wasn't getting enough Remicade and hopefully this bump in dose will do it.

Really wish the GI would pull a levels test though because the dose isn't as important as how much is left her system at the end of the interval. If she has a sufficient level of Remicade in her system and she is still symptomatic and has inflammation then she is just may not responding to Remicade.

 

[amw2003]

Just arrived back from Doctor. She is now getting Remicade every 4 weeks at 400mg just started April 24th on this. The remicade level test was lost by the lab so next week when she goes for remicade will take another. He didn't think it was necessary to run an antibody test and thought insurance may not pay for it as they are now not paying for Calprotectin and saying it is not necessary or proven. He did say that if she wants she can instead go back to every 5 weeks for Remicade instead of the 4 weeks he told us last time but add in Methotrexate. After two years she has never been in remission. Weighs 110lbs. Unless she eats something she should not and that has only happened once she has no symptoms but going weekly for iron due to the iron deficiency anemia (several areas bleeding) is no fun. Her veins are so bad now they have to use an ultrasound to find them deeper). Remicade and MTX every 5 weeks or Remicade only every four weeks or get a second opinion? Thank you

 

[Maya142]

So she is at 8 mg/kg. There is definitely room to go up - 10 mg/kg is the FDA approved maximum, although more doctors are using even higher doses now. My daughter went up to 20 mg/kg for a while.

Honestly, both options are possibilities. Most GIs would probably add MTX at this point. If she is needing iron infusions so often, you need all the help you can get.

Would she consider doing EEN for a while until the higher dose of Remicade kicks in? Or did the doctor talk about steroids at all - to get the inflammation to calm down?

I still do think you need a second opinion, but I thought insurance was making that difficult?

 

[amw2003]

She has been on remicade for two years. Second Opinion outside Florida at one of the best hospitals/Doctors is what I was hoping to do which Atlanta has. Not many doctors available on our insurance. She was once given a very high dose of remicade when she came out of the hospital two years and her second dose of Remicade and lost most her hip length hair and then Dr. lowered dose and I put her on Biotin and folic acid and it stopped falling out. Doctor never mentioned een

 

[crohnsinct]

Sorry but I am going to knock your GI one more time! Years ago insurance wasn't paying for Remicade and lots of people were dropping the drug because they thought it wasn't working and the problem was thatchy just didn't have enough in their system but because they couldn't afford to pay for the test themselves it was cheaper to drop the drug.

Last year, Jansen realized this was happening and they now pay for up to 2 level/antibody tests per year. Your GI should know this and process the test accordingly.

110 pounds? That is quite a weight gain over two years and very encouraging. It means some healing is happening. However, 400 mg at 110 pounds is 8 mg/kg so she is still not on high dose Remicade. If this is an increase, she was definitely NOT on high dose Remicade and my guess is she just didn't have enough in her system but there is no way of knowing without the test.

It is really up to you which way to go with regard to mtx or the shorter cycle. Did he say if mtx would be injections or oral? There really isn't any benefit of one over the other. Mtx would help keep antibodies at bay and thereby helping keep her level up. However, Mtx does sometimes come with side effects. A shorter cycle also helps the level issue.

 

[Maya142]

MTX can also cause hair loss, though taking folic acid should help prevent that. Some kids have no side effects with MTX and some have nausea, fatigue etc. There are things you can do to help with the side effects (up folic acid, Zofran if necessary for nausea).

Some kids do better with the pills and some do better with the shots. The shots are not painful - they're given with a teeny tiny needle.

I think either option may work. It just depends on what she prefers - more frequent infusions or a new med. If she has trouble with her veins because of the frequent iron infusions, then maybe MTX is the better choice.

She has been on remicade for two years. Second Opinion outside Florida at one of the best hospitals/Doctors is what I was hoping to do which Atlanta has. Not many doctors available on our insurance.

So is a doctor at CHOA available on your insurance? Because if so, then I would definitely get a second opinion. I would want to discuss plan B with another specialist because your current one seems not to be up on the latest research and really dropped the ball with the whole bleeding issue. He should have scoped her long ago instead of just insisting she had a blood disorder.

Plus, 8 mg/kg is a higher dose, but it's certainly not the highest dose he could give her...

 

[amw2003]

The MTX would be pill form and he said it was up to us to decide. Decided to wait till the new tests come in and the remicade level test before deciding on the MTX, etc . he ordered for next week a cbc, ferritin, cmp, TNF, ag or ab levels (cannot read writing) and TNF levels. is there an antibody test in there and remicade levels?

 

[amw2003]

Our insurance will only cover Doctors in Florida. I was hoping that out of state would have their own charitable plan but what I was told that if I was not an American citizen then she could be seen for free at CHOA but because she is an American citizen then it is not free.

 

[crohnsinct]

Have you truly exhausted all pediatric GI's in Florida? If so, perhaps try to see if there are any highly regarded adult GI's. I know we are always saying on here that kids are not little adults and you need a ped GI but I follow a lot of adult GI's and they are all pretty much going the way of the ped GI's....hit disease hard, gain remission ASAP, mucosal healing, avoid surgery etc. Plus they hear ped GI's speak at conferences so are pretty aware of the growth issues etc.

Just thinking out loud...an great adult GI is might be better than a not so great ped GI.

Either way you are increasing Remicade and sort of have to see if it works. I just don't think he increased it enough. My daughter is now on 15 mg/kg every 4 weeks so there certainly is room to go up and many, many kids need 10mg/kg.

Did you ask Boston about a record review?

 

[amw2003]

Adult GI's will never see her at this age. Boston, Philly, Cincinnati, Atlanta will only do second opinions if you can go there and again our insurance will not cover. If we win the lottery then we would go to California.

 

[Scipio]

Dr. Maria Abreu is one of the top IBD docs in the US. She is at Univ. of Miami, and they take Medicaid.

http://ibdnordic.se/wp-content/uploads/2016/08/abreu_bio_2016.pdf

http://medicine.med.miami.edu/crohns-and-colitis/

 

[amw2003]

Miami ranked 34th on the list of best places for CD. I will look into it though. Thank you

 

[Maya142]

It doesn't really matter what exactly they are ranked as long as you see a good GI. You could be at the best children's hospital and if you're seeing a bad GI, you will get poor care. Similarly, you could see a wonderful GI who goes above and beyond at a decent (but not famous) hospital.

We go to one of the best hospitals for pediatric IBD. Does that mean that every GI we've seen (and we've seen many, since my daughter has been hospitalized there many times) has been good? Definitely NOT. We saw one really bad GI during a long inpatient stay.

The facilities are good and clean and they really take care of kids. They've very thorough about infection etc. The rooms are nice and have couches for parents to sleep on.

But this GI was just the worst - he just would not listen to my daughter or take her complaints seriously, and consequently drove us crazy for two weeks. My daughter was so happy to leave the hospital.

She is 14, right? Or is she 15? Because adult GIs might see a 16 year old, but I doubt they will see younger than that.

Anyway, what I'm trying to say is that the doctors in a hospital vary and I wouldn't just go by ranking. I would research the doctor and see if he/she do a lot of IBD research and whether you think they'd be appropriate for your kid.