Izzi update...

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D/c tacrolimus today, start uceris Monday.

She swallowed an empty tacrolimus capsule yesterday (ty mlp)-my fingers are crossed she can swallow her steroid! If she is still struggling after a week I will request prednisone instead.
 
Day three of trying to swallow uceris twice a day...No go. She has been home from school all week a s she is up 4-8 times a night in the bathroom-between fatigue, bathroom visits, and pain I'm reluctant to force her to go.
I truly think she can do it...She is sooo afraid.

We had a super frank discussion about untreated crohns and the risk of colon cancer (the discussion began with her complaint about trying new meds). Part of me feels terrible to discuss cancer risks with an eight year old, but it is a reality for her and as she matures and takes part in the decision making process she will need to understand her disease.

Hopefully I'll be back to post soon that she has done it...if she hasn't gotten it in a week will ask for prednisone. :)
 
We are ready to throw in the towel. She's tried for over a week to swallow uceris, and managed to get a pill that was cut into fourths by her dad down once, but hasn't been able to do it again. She cries twice a day when it's time to try. We have tried all different tactics to get it in her whole.

She is up every two hours at night with bloody d, has terrible fatigue, and a 101 fever. She opted to stay home from school today despite a wonderworks field trip-I'm just done. She tells me she wishes she wasn't alive. Time to move on (and get some therapy). I'm tired of being the bad guy. I have a call in to the gi to put her back on pred.
 
Oh Ang! What an horrible Crohn's day! I am so sorry.

Where are things with the Entyvio approval and processing?
 
Really sorry to hear, your poor little girl. Hope the pred works like magic :ghug:
 
So sorry your daughter and family have to go through this. Hope the pred helps fast.
 
So sorry you're all going through such a tough time. I hope the pred helps quickly and you all get some relief. Lots of hugs... :ghug: :ghug:
 
Never thought I'd ask for pred-lol. I will still have her try to swallow a prednisone pill twice a day, but if she can't I'll crush it in applesauce. Less pressure.
The gi decided to contact the manufacturer to verify the dose recommended by Dr Hyams. As entyvio isn't recommended for pediatric use, they declined to advise him. Seems they were waiting on this info before proceeding with the insurance company. #bang head here
Ty for all of the kind thoughts...:)
 
izzi'smom said:
Never thought I'd ask for pred-lol. I will still have her try to swallow a prednisone pill twice a day, but if she can't I'll crush it in applesauce. Less pressure.
The gi decided to contact the manufacturer to verify the dose recommended by Dr Hyams. As entyvio isn't recommended for pediatric use, they declined to advise him. Seems they were waiting on this info before proceeding with the insurance company. #bang head here
Ty for all of the kind thoughts...:)
Click to expand...

Angie, I haven't been on here for so long. So sorry to hear about sweet Izzi. Does the pills she is trying to swallow taste bad? I know prednisone is very bitter if it stays on the tongue. As for the Vedolizumab, they give my son the same dose they give adults. He is 15...but only 73 lbs, and 5'...
 
Ty briansmom-that is what the gi we consulted recommended, and izzi and Brian weigh nearly the same. She was trying to swallow uceris, which is enteric coated and not bad. Now I am making her try to swallow prednisone tablets, which are terrible, but I really want her to practice so when we DON'T have an alternative, she is ready. (I just crush the pill after she falls to swallow it).

She has not been back to school yet- 101 fever Wednesday and fatigue/cough/nasal congestion today-hopefully tomorrow! We have had fantastic weather, so she is enjoying her time off a bit too much lol
 
Hope the pred kicks in soon

I know it's a drug I love to hate
DS is still on it after three weeks
So want him off pred
 
Angie,
I just saw something cool on Facebook on a page called kids conquering Crohn's. They suggested to help kids who can't swallow a pill, wrap the pill in the top of a fruit roll up and they eat swallow the pill with the fruit roll up. I tried to find a link to the page but couldn't.
 
Grace's learned to swallow using pred.
She was allowed to bite it.
Of course she hated the taste but it took about 2 weeks to learn to swallow.
First she chewed it, than bit it in half and then could swallow.:D
Always gave her a piece of candy afterwards.:wink:
 
Our pred pills basically melt when wet-a bit gross. She still hasn't mastered it. She has attended half days of school this week-she has pain so bad she can't make it Ty though whole day (although we don't just sit at home, which I feel bad for). She has been completing the work the teacher gives her, but I think I need to pull her 504 and have someone in the school make sure she is getting everything she needs. We upped her pred from 20mg to 25-she is still having 14 bathroom trips daily. Entyvio is in the insurance pipeline.
 
Entyvio was approved-her first infusion was Monday. I will very cautiously say I think things are improving- she used the bathroom once last night (she is usually up every 2-3 hours.) I was expecting to wait fourteen weeks for results.

Izzis dad got her a dog a week and a half ago (we share custody, just like the kids lol) and I think it has done wonders for her disposition-she is sooo much happier!

She was approved for a tutor but they could only find someone to tutor her at the school, so we didn't utilize it.

I got her md to prescribe massage therapy but we haven't fought insurance to cover it. She and I will get a couples massage with a gift certificate I have...we 'll go from there.

Hoping things are looking up for her... :)
 
Dropping in for a quick update. I occasionally log in and catch up with you all but not posting.
Izzi hit the one year Mark on entyvio in June. She is feeling fairly well with occasional nausea, pain, and fatigue. She has put on a bit of weight-unsure if it is hormonal/age related or drug related. Her last scope looked better than ever, but microscopically shows new inflammation, which is worrisome.
Think of you all often! <3
 
Dropping in to say hello and update this dinosaur thread!

Izzi has been feeling rough the past couple of months-high inflammation markers, repeated illnesses, pain, nocturnal stooling, fatigue. We're having levels drawn in a few weeks to see how Entyvio is treating her/if she has created antibodies. She is being tutored at home (and her teachers are amazing this time around) which is helping tremendously. Entyvio has gotten us almost two great years, so I can recommend giving it a try, and I am secretly hoping we can up her dose or decrease the time between doses to get a while longer from it! :)
 
Sorry to hear Izzi is not doing well anymore :(. I hope you're able to stick with Entyvio - I know some parents have mentioned going to infusions every 4-6 weeks instead of every 8 weeks. Maybe that's an option?

Can I ask - how long did it take for Izzi to respond to Entyvio? My daughter is (hopefully) going to start Entyvio soon (if insurance cooperates). She's on steroids now and really wants to get off them. Her GI has warned her it could take a couple months before it works.
 
Hi Angie!
Great to hear from you but sorry Izzie is not doing great. Caitlyn did pretty well on Entyvio for a year and a half. Her doctor moved it from 8 to 4 weeks which worked better for her.
Unfortunately they started causing her really really bad migraines so we have had to stop it. We are about to start Stelara.
Wishing you and Izzie the best!
 
Hi Angie, I'm sorry too that she's having a setback ! I hope it can be resolved with a dose change. Would she consider doing a round of EEN to help get her back into remission?

Good luck! I hope whichever route you go gets her back to feeling good!
 
Maya142 said:
Sorry to hear Izzi is not doing well anymore :(. I hope you're able to stick with Entyvio - I know some parents have mentioned going to infusions every 4-6 weeks instead of every 8 weeks. Maybe that's an option?

Can I ask - how long did it take for Izzi to respond to Entyvio? My daughter is (hopefully) going to start Entyvio soon (if insurance cooperates). She's on steroids now and really wants to get off them. Her GI has warned her it could take a couple months before it works.
Click to expand...

Her response was immediate.
Even still, she goes into the infusion feeling terrible, and heads home worn out but feeling better. :) wishing the insurance fairies have mercy and that entyvio is your answer. 😊
 
Tesscorm said:
Hi Angie, I'm sorry too that she's having a setback ! I hope it can be resolved with a dose change. Would she consider doing a round of EEN to help get her back into remission?

Good luck! I hope whichever route you go gets her back to feeling good!
Click to expand...

We've tried EN without success in the past. She's barely eating because of pain-down to one meal a day. Much of it makes her nauseous.
 
Sorry to hear things aren't going well. Hope you can just adjust the dose to bring things under control
 
So after a MRE last year we discovered her pain/nausea was likely gastroparesis related, and she tried eryped with some success. She did well until Christmas, when she started having more pain and frequency. Her colon is much like it was, with diffuse inflammation throughout. Upper endoscopy was good, although her esophageal sphincter was so narrow he was unable to place a pill cam despite multiple attempts. We are waiting to hear from Hyams if perhaps we can try upping her Entyvio despite her trough levels looking good and no antibody formation.
 
Sorry to hear she is struggling. My daughter has Gastroparesis and after a lot of trial and error, we figured out a particular brand of erythromycin worked better for her. EES worked well, and tasted better. Eryped did not work as well for her. EES is also bright pink ;).

She is now on Domperidone and doing very well on it. Definitely better than EES. I think BCH has a clinical trial for Domperidone.

Stelara might be an option, if upping Entyvio isn't one. Sending hugs :ghug:.
 
Same here Ds has gastroparesis
Eryped did not work well for him
He does better on e.E.S. Granules
He has been on it for 2-3 years
He does drink half his calories in formula (neocate jr chocolate orally -no tube)
This helps him since even with ees he can’t eat enough

Maybe that’s an option

Hope her gut heals soon.
 
I hope she can find a sweet set of treatments to help again. What are they going to do about that sphincter?
 
The gastroparesis doesn't always bother her. Last summer she only took eryped before a large or fatty meal. The pain she's having now is despite fasting (I can't convince her to eat breakfast).
She isn't losing weight (she is actually overweight) so I can't complain.
Her doc isn't concerned about the sphincter. 😌
 
izzi'smom said:
The gastroparesis doesn't always bother her. Last summer she only took eryped before a large or fatty meal. The pain she's having now is despite fasting (I can't convince her to eat breakfast).
She isn't losing weight (she is actually overweight) so I can't complain.
Her doc isn't concerned about the sphincter. 😌
Click to expand...
Jae won't eat breakfast either.
 
So she's down about ten pounds. Doc hasn't given us a treatment plan (initially called him 12/20...he ordered fc, labs at my request, and scoped her, but zero meds), so I threw a fit and we're seeing another GI in the practice. He'll see her nexr t Wednesday after her infusion.
 
Poor Izzi!! And way to go Mom for getting them to pay attention. Completely ridiculous that you had to wait so long just to hear back!
 
^ YEAH!

Any word from the other doc who was giving you an answer on whether or not you can increase Entyvio?
 

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