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Scared what to do about my daughter

Daughter is 11. Newly diagnosed with Crohns after endoscopy, colonoscopy and bloodwork. Doctors placed her on a medication in a giant capsule that we have to put on applesauce for her to take. Been doing that for 1 1/2 month. It's not doing a bit of good and she keeps losing weight and vomiting is getting worse. I don't know what to ask/demand of the Nemours docs in Jacksonville, Fl -- and if anyone knows Dr. Dorsey or has advice I'd love to hear it. I don't want to lose my daughter, and she's getting so tiny (64 lbs) and weak that I'm fearful her little body is just going to shut down. Basically, I am petrified of all of this. Any advice or suggestion is appreciated.
 
I would suggest going to the ER. I am going to tag Clash Maya 142 my little penguin. Let us know how she is doing.
 

my little penguin

Moderator
Staff member
More than likely your dd is on pentasa(5-asa )
A blue pill with white beads in it
5-asa's are not approved as a monotherapy in Crohns
5-asa only affect the top most layer of the intestine and Crohns affects all layers
Most kids need an immunosuppressants such as methotrexate to help relieve their symptoms
Some like my kiddo do best on biologics such as remicade
Or humira
Ds takes humira and methotrexate combo to control Crohns

What was your dd given to induce remission?
5-asa are not enough and you would need steroids and/or een(exclusive enteral nutrition)
Een means formula only no solid food this heals the gut and lets the kiddo gain weight
Most are used for 6-8 weeks while the maintenance med gets up to speed
Pentasa only takes a month to work if it's going to work
For ds he just got worse

Flagging Dancemom her dd goes to Neumours I think so she could give you ideas for second opinion

Een can be polymeric such as kids boost or peduasure
But most kids need at least semi elemental such as peptamen jr

Ds drinks elemental (neocate jr chocolate)

Some kids have trouble drinking and use an ng tube that they leave in or put in at night and take out during the day


Come join the parents group here

http://www.crohnsforum.com/forumdisplay.php?f=49
 

Maya142

Moderator
Staff member
Hi and welcome!

Definitely join the Parent's Forum, you're not alone. I'm sorry to hear your little girl is not doing well. It sounds like she is on a 5-ASA, which isn't very effective for Crohn's.

I would suggest getting a second opinion, as soon as possible. Your daughter should not have to be so sick. Typically, like my little penguin said, a newly diagnosed child is put on a maintenance medication AND something to induce remission. For many kids, that's steroids but EEN is also a great option.

In terms of maintenance meds, typically GIs will start with either immunomodulators or biologics, or even a combination of the two. My daughter started on Remicade and Methotrexate and did very well on them.

The meds do sound scary, but honestly, the disease is much scarier, as you're seeing now, so it's important to treat it aggressively.

I would pursue a second opinion and talk to your current GI. Tell them your daughter is continuing to vomit and lose weight and that you are very worried and you think something needs to be done NOW.

In terms of her weight, I would definitely ask about supplemental enteral nutrition or exclusive enteral nutrition. You can start with shakes like Ensure and Boost because they taste best. If they work, then great! If they don't (some kids have trouble tolerating them), then more broken down shakes like Peptamen Jr or Neocate Jr are probably worth trying.

My daughter uses a tube to get supplemental EN every night. She finds it MUCH easier than trying to drink the shakes. We thought it would be really intimidating and scary, but after the first night, she was perfectly fine. I was shocked at how good she got at inserting her NG tube (she'd insert it every night and remove it in the morning, so no one at school had to know).

CCFA has a lot of good info about various treatments.

Good luck! Keep us updated.
 
Wow -- thanks for such quick responses and so much information. I'm trying to digest it all. The doc only gave her Balsalazide disodium -- twice a day. They wanted to try something else but under our insurance plan (what a joke of a name -- $17,000 deductible and $1300 per month premium) the meds would be $450 a month, which we cannot afford. So, they did this one that we have to mail order. It's not doing anything. Might as well flush the $75 cost down the toilet -- which actually is what we're doing if you think about it. I got a follow up appointment with the doctor that originally diagnosed her in December (we've been forced to see stand ins or nurse practitioners since). We are going in on Thursday. Should I just demand EEN? How fast will we see some benefit? My daughter went in late to school this morning and came home early due to symptoms. Vomited again tonight. Pretty sure we will see weight loss again on the scale tomorrow. What do you all do about the cost of the meds? What can I expect for costs of EEN? What if they want to put her on steroids -- that was mentioned by the stand-in doctor last month. Are they a good option or do the risks outweigh. Sorry so many questions, but I just want to have some knowledge base when I go in Thursday so I don't get steamrolled again and leave my poor kid still so completely miserable.
 

Maya142

Moderator
Staff member
Hang in there!!

In terms of costs, I would just talk to the doctor very honestly. EEN is sometimes covered, depending on your insurance. Our insurance covers all the formula and equipment (since my daughter is tube-fed), which is good because the formula is very expensive.

Sometimes they will not cover the formula if the child is only having it supplementally - it has to be the sole source of nutrition. Other times they won't cover it if the child is drinking it - has to be given through a tube.

It honestly really varies. I am going to tag my little penguin because she can tell you more.

Steroids are not a bad option. Yes, they come with a lot of side effects, but they are very effective. Sometimes you really just need them to get the disease under control quickly. My daughter is currently on Prednisone, in fact. We all say that we have a "love hate relationship with steroids" - we love how well and quickly they work but hate the side effects.

Immunomodulators like Methotrexate and Imuran are pretty cheap. So hopefully that is something she can try. However, they take a long time to work - think months, not weeks. So she would need to try EEN or steroids while you're waiting for the maintenance med to kick in.

Balsalazide is a 5-ASA - like we said, it won't hurt, but it doesn't really help much. The reason it won't work well is because 5-ASA's only target the top layer of the intestine, while in Crohn's all layers are affected.

I would talk to your GI very frankly - tell him/her how miserable your daughter is and that you feel that something needs to be done quickly. I would discuss both EEN and steroids - if you want to try EEN, you want to make sure your daughter is willing to do it.

I would also definitely talk about a maintenance medication.

I'm going to tag some parents whose kiddos have done EEN - pdx, Pilgrim, Farmwife, Jmrogers4, Clash

Good luck!
 
Wow -- thanks for such quick responses and so much information. I'm trying to digest it all. The doc only gave her Balsalazide disodium -- twice a day. They wanted to try something else but under our insurance plan (what a joke of a name -- $17,000 deductible and $1300 per month premium) the meds would be $450 a month, which we cannot afford. So, they did this one that we have to mail order. It's not doing anything. Might as well flush the $75 cost down the toilet -- which actually is what we're doing if you think about it. I got a follow up appointment with the doctor that originally diagnosed her in December (we've been forced to see stand ins or nurse practitioners since). We are going in on Thursday. Should I just demand EEN? How fast will we see some benefit? My daughter went in late to school this morning and came home early due to symptoms. Vomited again tonight. Pretty sure we will see weight loss again on the scale tomorrow. What do you all do about the cost of the meds? What can I expect for costs of EEN? What if they want to put her on steroids -- that was mentioned by the stand-in doctor last month. Are they a good option or do the risks outweigh. Sorry so many questions, but I just want to have some knowledge base when I go in Thursday so I don't get steamrolled again and leave my poor kid still so completely miserable.
Cheller, SO SORRY your daughter is going through this breaks my heart. Steroids would be a plus at this point there are side effects but they outweigh the risks by far. Short term if possible, the long term effects are life long. As for medicine costs If your Drs. are decent they can help with cost through the drug companies, they all have programs to help patients reduce or eliminate cost. My G.I's staff is awesome about this. Is she seeing a Gastroenterologist? If not she must ! My experience with primary care and Internal Med. Drs. is they DON'T have a clue ! You have to be tough and go with a list of questions don't let them steamroll you. Demand answers. All my best and prayers for you and your daughter.
 
Thanks. She has a GI doctor at Nemours. Hopefully they will get more aggressive with medical intervention on Thursday. I just hope I'll be able to pay the mortgage and feed the rest of my family after I have to pay all these bills. Since it's the start of the new year, I have to come out the $17,000 deductible again before insurance does a thing. I don't know if my daughter will buy in to the EEN, but the alternative is forced feeding in a hospital, right. She doesn't eat enough anyway and everything she eats now is coming out as vomit or diarrhea. We tried to get her to drink the Ensure supplements, but she doesn't like the thickness of them, so I don't know what will happen with EEN. Everything is just so new, but my instincts are something needs to be done now. She's almost 5ft tall and she's down to 64lbs. Can't go much lower.
 

my little penguin

Moderator
Staff member
Fwiw no kid likes EEN honestly
We treated like a med because it is medicine
Not optional they can chose how it goes in
Mouth or ng tube but it goes in
Seems mean but any other med you would treat the same
Ds vomited all the time at the beginning
No vomiting on een
Once we added food then he vomited
Most states have a medical assistance loophole for kids with chronic illnesses
This acts as a secondary insurance and is not based on parent income
Your hospital social worker should be able to help you to determine if your state has this

Some insurances cover formula through the durable medical equipment clause
As infusion therapy supplies
Not the prescription plan as formula
 

Maya142

Moderator
Staff member
My kiddo was like that too - she tried very hard to drink the shakes, but just could not drink enough. She couldn't even maintain her weight, much less gain any! Finally her GI insisted that she needed an NG tube if she could not drink enough.

My daughter was DREADING the tube. But amazingly, it was not as bad as we thought it would be. The first night her nose and throat were sore, but after that, she adjusted to it very quickly. She inserted it every night before bed, got her feed at night, and then took it out before school.

Often younger kids choose to keep the tube in all the time, but older kids - including your daughter's age - often prefer to insert it nightly so their friends don't have to know.

It's a tiny and flexible tube - like spaghetti. My daughter used to insert it while drinking water so it went right down. I was really shocked at how easy it was - it took about 15 seconds.

Once she started getting enough calories, she finally started feeling better - she had more energy, she wasn't cold all the time, she started gaining weight. She gained a total of 25 lbs and went from about 80 lbs to over 100 lbs (she is 5'2).

She now has a more permanent tube placed in her stomach. She says it is so much better than trying to drink the shakes. I just wanted to let you know, in case the doc brings up a tube. They're really not so bad.

There is a great website called http://feedingtubeawareness.org -- it has lots of info about tubes. There are also videos on Youtube of kids inserting their own tubes. If you look on the parent's forum, someone posted one quite recently, made by their children's hospital.

Some kids are able to drink the formula, so that may also be a possibility.

Also, if she is very malnourished, and it sounds like she might be, they may admit her to start either tube feeds or formula, to make sure she doesn't have electrolyte imbalances when she starts getting more calories.

Please let us know what happens at the appt. We'll be thinking of her.
 
Thanks. She has a GI doctor at Nemours. Hopefully they will get more aggressive with medical intervention on Thursday. I just hope I'll be able to pay the mortgage and feed the rest of my family after I have to pay all these bills. Since it's the start of the new year, I have to come out the $17,000 deductible again before insurance does a thing. I don't know if my daughter will buy in to the EEN, but the alternative is forced feeding in a hospital, right. She doesn't eat enough anyway and everything she eats now is coming out as vomit or diarrhea. We tried to get her to drink the Ensure supplements, but she doesn't like the thickness of them, so I don't know what will happen with EEN. Everything is just so new, but my instincts are something needs to be done now. She's almost 5ft tall and she's down to 64lbs. Can't go much lower.
If she would try it she would feel better, I can't imagine having to go through this as a child :(I am in a Crohn's flare now was in hospital for 5 days went down to 85 lbs. and was put on enteral nutrition on 12/30 via NG tube I'm home now and still on it have gained 14 lbs. but I also eat as much as I can tolerate (which isn't much) While I wait for the Ins. company to approve Entyvio. I don't know your personal or financial situation but that COPAY is insane ! There has to be some help available to help with the cost. Maybe speak with the Social workers at the hospital they are a wealth of info and available resources. Continued prayers and here for you.
 
I'll check with the hospital people since they are right next to the doctors office. I would love to have some help. When the kids go on EEN, can they vary the kinds of liquid or the flavors, or are they strictly on 1 brand and kind for every meal for 6-8 weeks? I know there is going to be some strong willed fighting back, but I agree -- it's going in 1 way or another. I can't stand to see her in this shape. One thing that blows me away is how fast it all started and got extreme. Last August, she was 80lbs and running around like a normal kid. Now, 64lbs and can barely get through the day. Vicious disease.
 

my little penguin

Moderator
Staff member
You tend to stick with one type but each type may have different flavors
So polymeric would be pediasure or kids boost
Hardest to digest but tastes the best and cheapest
Semi elemental -peptamen jr or peptide
Broken down formula easier to digest hard to drink

Elemental elecare jr or neocate jr
Made up of amino acids -easiest on the GI tract
Hardest to drink orally most need a tube
Ds drinks 50% of his calories a day from neocate jr chocolate
He is 13 and was dx at age 7
Has done three rounds of een so far
Never fun
But works wonders until you get the right maintenance med
 

Maya142

Moderator
Staff member
It depends on your GI honestly. Some kids do EEN with Boost and Ensure (which are easily available at drug stores) and choose any flavor.

Other GIs, like ours, want a semi-elemental formula used, like Peptamen Jr or Pediasure peptide, but we could choose any flavor (or flavors). There were several flavors - vanilla, strawberry and chocolate and my daughter liked chocolate the most. She also sometimes drank strawberry.

The semi-elemental formulas do not taste great, and are hard to drink, but some kids manage to do it.

Her GI may be able to give you samples to try out - we tried Boost, Ensure, Pediasure peptide, Peptamen Jr and later Elecare and Neocate (which are even more broken down - elemental - and taste even worse).

Some GIs will let you add things like honey, maple syrup or chocolate syrup to them to hide the taste.

My daughter preferred them cold and drank them using a straw (so she tasted them less). You can't freeze them, but cold is ok.

Some parents bribe, other parents treat the shakes like medication and others let their doctors do the insisting (that worked really well for us!). It really varies. Chances are, your daughter won't be happy about it but once she starts feeling better, it'll be worth it.
 
The Boost or Ensure would buy her time for a maintenance med to kick in. I believe that both Imuran and Methotrexate (these are immune suppressant meds) are relatively inexpensive. Boost or Ensure (we buy the store brand as it's cheaper will be between 1-2 dollars per bottle. At your daughter's weight I'm guessing she would need around 6 per day but you should get that calculation from a dietitian or her GI. There are "plus calories" formulations that can give you more calories per bottle but they are thicker.
It took three days of misery and NO food for our daughter to be ok with drinking the shakes. She was ok after that. She has done two 6 week sessions with no food. And she still drinks it in addition to food.
Bribery helps an 11 year old.
 
Sorry just will add a couple of things
We were able to get formula covered through insurance not for treatment of crohn's but under the failure to thrive and that it as his sole source of nutrition at the time. It was a pain and took lots of phone calls from me, doctor's and even the medical supply company to our insurance. It was finally talking to someone who knew the right code to put it under.
Son hated the shakes and it was a battle the first week. He would stand over the sink with a shake and a glass of water take a tiny sip, gag, drink some water, whine and start over it took over an hour to drink the first one. He was able to just drink one quickly after a few days and would just gulp it down but he never liked them in fact he still despises them.
As far as meds go my husband has crohn's in addition to my son and at one point he was without insurance and was able to get his Imuran(Azathioprine) through Costco for fairly inexpensive compared to every where else.
Remicade has a program called remistart which covers the cost of the remicade medicine except for I think $50, you just need to have insurance which you do.
Good luck at the appointment.
 
So sorry to hear about all that you're going through. The disease is hard enough, but adding the layer of figuring out how to pay for everything makes it even worse.

It sounds like your daughter really needs to be on either EEN or prednisone (steroids) as soon as possible. My preference would be EEN, but it is very expensive if not covered by insurance. When my daughter did EEN, it was completely covered if given by NG-tube, and not covered at all if she drank it. My daughter tried drinking it first, but she just couldn't do it, so she ended up with a tube, and thus our insurance covered it. I would check to see what you would need to pay for EEN, and if it's too much, then I would ask about prednisone. The hope is that steroids would reduce your daughter's inflammation in the short term, which might allow her to start absorbing nutrition from what she eats again, without the severe nausea and diarrhea.

Another option would be to start steroids right away, but then also pursue some low-cost options for EEN. There are several foundations that facilitate donations of formula to people who need it. The one I'm familiar with is the Oley Foundation:

http://oley.org/?page=Equipment_Exchange

As has been mentioned above, you'll want to start on a maintenance medicine too, that your daughter can use for the long-term. I agree that methotrexate and imuran are both possibilities that are not very expensive.

Remicade is another commonly used medicine for kids with Crohn's, and although it's insanely expensive, there's a very good patient assistance program called Remistart:

https://www.remicade.com/rheumatoid-arthritis/remicade-support/medication-cost-support/commercial-insurance

As long as you have commercial insurance, this program pays for your co-pay for Remicade, up to $20,000 per year. The big problem, though, is that it doesn't pay for the costs of administering the medicine, and it's an infusion, so that can be quite expensive if you have to pay for it out of pocket.

There's a similar drug called Humira that also has an assistance program, but I'm not personally familiar with that program. Humira is an injection that you give at home, however, which means there wouldn't be additional administration costs.

Finally, I agree that it's definitely worth talking to the social workers at your hospital, to find out if there are any programs that can help your family with the high costs of Crohn's treatment.

I hope that you can find an effective treatment, and that your daughter starts feeling better soon.
 
Thanks so much for everyone's advice. I am so thankful that in the middle of a horrible night, sitting and crying about all of this, I stumbled upon this website. I think you all are a Godsend. I'll let you know what happens Thursday and will definitely lean heavily on all of your combined knowledge and experiences.
 
We saw a GI at Nemours Orlando (we no longer see him). Their approach for my girl was to start with Pentasa as well. Getting a second opinion is usually a good idea.
 
OK -- been away for awhile. I took all of the information from all of you to my daughter's appointment in January and I felt empowered and informed. She was placed on Ensure with ng tube, along with prednesone and omeprazole. After 2 weeks, she was able to drink all of her needs and they allowed her to add jello and strained soup. Now comes the problem. We are in the process of weaning off the prenisone. We need to have a medication plan. Doctors want us to be opart of the "Combine" study -- we pay for Humira and they put us in double blind 50/50 chance of having methotrexate or sugar pill added to therapy. They are trying to study whether methotrexate is helping outcomes. What is everyone's experience with these two meds? Is there something better/ less intrusive (multiple shots) that anyone can recommend. I want real world experience from someone in the trenches, not just recommendations from docs that want us in their medical study group. Any advice/experience is welcome and appreciated!!!
 

Maya142

Moderator
Staff member
The only thing I can think of is doing Remicade vs Humira. Remicade is an infusion - so 1 IV every 6-8 weeks (can be up to every 4 weeks). The Humira shots are painful, so most pediatric GIs start with Remicade. Remicade has the additional advantage of being dosed by weight (for example 5 mg/kg), so as your kiddo gains and grows, they can change the dosage easily (whereas with Humira it's usually just 40 mg every other week or 40 mg every week). You also have more flexibility with the frequency for Remicade, so you could start at every 8 weeks (after the loading doses) and then go to every 6 weeks if that doesn't work.

They are both very effective. My girls liked Remicade better because the Humira shot does burn. There is supposed to be a new formulation of Humira coming out that does not burn - it's already out in Europe - but not sure when it will get here.

We did the Humira shot while the girls were distracted - watching TV - so they wouldn't focus on the pain. We also iced before the shot. Some parents add Lidocaine to the shot to make it less painful. It's the medication that burns, not the needle, so something like numbing cream typically does not help.

I'll tag my little penguin since she does that for her son.

The loading dose is the worst part - 4 shots on the first day and 2 shots 2 weeks after that. Once that's over, 1 shot doesn't seem so bad!

Humira worked very well for my daughters. My older daughter is still on it (plus Methotrexate).

It's wonderful that your kiddo is doing EN and managing to drink it! Way to go :)!!
 
Thanks for the info Maya142. It sounds like you started with Remicade, then ended up with Humira. Was there a reason for that? Did the Remicade become ineffective? How long have your kids been on Humira now? Did either of them just have methotrexate alone?
 

Maya142

Moderator
Staff member
My girls actually started with Humira. They were both diagnosed with juvenile arthritis at the time. The younger one was later diagnosed with IBD.

My older daughter is now on Humira for the second time. It is working very well for her, with MTX.

Remicade can become ineffective over time. Often the reason is antibodies - your body makes antibodies to the drug. That's why Methotrexate it is given with it - to prevent your body from making antibodies.

This can also happen with Humira, but is more common with Remicade, because Remicade is made of mouse protein. Humira is humanized.

Neither of my girls have been on MTX alone but some kids do respond to MTX by itself. It will take longer to work usually, than a biologic.

Allergic reactions are slightly more common with Remicade because of the mouse protein. That's why once you start Remicade (or any biologic for that matter), you are usually on it till it stops working.

There are MANY kids who have been on Remicade for years, so it's not like it will necessarily stop working quickly. It honestly depends on the kid.

Both drugs are really good options. Some kids prefer shots because they are quick and convenient, even though they hurt, and other kids prefer the infusions since they are infrequent and don't hurt, besides the poke for the IV.

My girls both liked the infusions better.

Good luck!
 

my little penguin

Moderator
Staff member
Not sure why they would need you to participate in the study
All studies offered to us were through a the research division and did not influence how we could proceed -our GI offered the best treatment for my kiddo regardless of studies

Mtx with biologics is extremely common
I understand docs /researchers need to find out
But honestly kids needs med wise are so vastly different

Ds was on remicade for 8 months at age 8
But he had an allergic reaction twice (two infusions in a row -second one they gave steriods first ) -no mtx and no antibodies found
So he switched to humira at the ripe old age of 9
He is still in humira at 13
And mtx to prevent antibodies and to treat his juvenile Spondyloarthritis

It's been almost 5 years so I do consider it to be lucky

Humira does hurt and burn
We add lidocaine to the humira syringe but it still burns
He is also at the max dose
One shot every 5 days.

Good luck
 
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