# Thoughts on stelara or entyvio?



## kimmidwife

Well we are running out of things to try now that Caitlyn had an allergic reaction to the cimzia.
Has anyone's kids tried stelara or entyvio?


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## Clash

I think Brian'sMom has a son on entyvio. Our GI had mentioned entyvio. I know at the time hementioned it the Office was struggling with insurance coverage for it, I can't remember the details. I can only assume the group came to agreement because at C's last remi infusion there was an 18 year old girl getting entyvio.

There is a thread on the forum for both entyvio and stelara. My mobile is acting up but a quick search of thread titles would show them.


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## Brian'sMom

Yes, my son started entyvio August 8th. The thread on here has all adults and I don't care for it. My son has no bad side effects from the infusions. Its the easiest so far. Its a 30 min infusion. He loves it over all the shots he was getting. As for if it is helping... Jury is out on that. My sons rectum was in such bad shape that they aren't sure anything but surgery will help. The mouth ulcers and his eyes cleared up while on this... His small bowel is still doing good. We head to Mayo in January and they are doing a colonoscopy and we'll know more.


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## Maya142

Tagging AZMOM - her daughter is on Stelara.
M's rheumatologist had good things to say about Stelara but her GI has never used it. I believe it will be approved for Crohn's quite soon, like within the next year.


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## Jmrogers4

tagging vtfamily I believe her son has been on stelera for quite some time now


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## ronroush7

I myself am on Stelara.  They switched me last month from 45 Mg. to 90.  I don't feel like it has done much but that is just me.

 2


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## AZMOM

Overall, we are having a good experience with Stelara.  Claire is 11.  She is also still on MTX.


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## Brian'sMom

In case This is helpful... Our Mayo GI had us do another Vedo (Entyvio) yesterday at 4 week Mark instead of 8 week because of the issues we've been having in rectum. They do labs prior to starting it. CRP is 1.7 down from 3.0 and SED is 31, down from 45. We have appt here in KC tomorrow and we have one at Mayo in January. So even tho he had some issues last week... Inflammation is down.... Could Vedo be helping! Also, again... No side effects from infusion. We went to dinner and then to school Christmas band concert afterwards.


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## MamaHenn

Our GI just mentioned Vedo when we where there last week. We're currently doing diet/LDN and are re-doing calprotectin and labs in March. Currently ds's calprotectin is around 240 ish but this seemed to be the med the GI was pushing. Although I'd imagine that given that we haven't done any of the other "big guns" it might be a fight to start with this one? Brian'sMom, I hope it is working! It sounds like you guys need a break.


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## kimmidwife

Thanks for the info, I am really thinking entyvio is what they are goi g to push next!


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## AZMOM

I think you are right since it is approved for Crohns already.  We started Stelara before Entyvio was released.


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## kimmidwife

Spoke with Caitlyn's doctor and we are going forward with entyvio. The doctor's office started the process today of getting it approved. Hopefully they will agree to it without to much trouble. Keeping my fingers crossed.


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## Maya142

Fingers and toes crossed that it will be Caitlyn's miracle drug!


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## my little penguin

Fingers toes and noses crossed


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## Jmrogers4

Good luck hope it works amazingly and with no issues


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## Tesscorm

Sending you luck too!  I so hope this is what Caitlyn needs! :ghug:


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## vtfamily

Brian'sMom said:


> Yes, my son started entyvio August 8th. The thread on here has all adults and I don't care for it. My son has no bad side effects from the infusions. Its the easiest so far. Its a 30 min infusion. He loves it over all the shots he was getting. As for if it is helping... Jury is out on that. My sons rectum was in such bad shape that they aren't sure anything but surgery will help. The mouth ulcers and his eyes cleared up while on this... His small bowel is still doing good. We head to Mayo in January and they are doing a colonoscopy and we'll know more.


Kathy,
I'm hoping you get some good news in January! Sorry to hear that there hasn't been any improvement with the rectum.  Praying for you guys.
Cheryl VT


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## vtfamily

Jmrogers4 said:


> tagging vtfamily I believe her son has been on stelera for quite some time now


Hello to all.

Gus started Stelara in February 2013.  I can't believe we are coming up on two years with it!  That is the longest any medication has remained effective for him, and for that I am very grateful!!

When both Remicade and Humira failed, there weren't any other new Crohn's drugs available.  Gus spent a year in a horrible state of limbo while our docs tried to figure something out.  Although Stelara wasn't approved for Crohn's, it was our best bet...so we took the leap into the dark.  Thankfully, our insurance didn't oppose the treatment.

Even Remicade and Humira seemed to do more to manage Gus' pain than they did to manage his disease.  Stelara seems to be controlling both very well.  Gus was able to make it through his entire 8th grade year without any pain or hospital days.  He has been able to enjoy his freshman year of high school, stronger and more active than ever.

The GI docs are excited about Vido because it was designed for Crohn's.  I really hope that it does bring patients the relief they are seeking.  If it doesn't, don't be afraid to ask about Stelara too.  It hasn't easy for people to get their insurance to approve it, but for those who have been able to make their way through the paperwork, it does seem to be effective.

Gus is 14 years old.  He weighs about 89 pounds.  His Stelara dosing is 45mg every eight weeks.  Our doctor is happy to discuss it with any physician who would like more information on how it is going with a pediatric patient.

Best Wishes to all.
Cheryl VT


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## vtfamily

Kim,

Prayers for success for you and for Caitlyn.  I'm looking forward to your updates.

Cheryl VT


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## rollinstone

Hey guys, sorry to but in here, I have no experience w stelara or cimzia, I am on remicade, but just wanted to chime in and let you know there are some other options that the GI's may likely not have mentioned, the first one being anti-map therapy which is a regime of three anti biotics, and has quiet a high efficiency, supposibly higher than remicade and humira.. The other thing for those in the States is cannabis oil, if you get higher cbd and low thc as well as giving it at night it will mitigate any psycho active effects. I must say the oil fixed me right up. Happy holidays and best wishes to all, hope your little ones get better soon! God bless!


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## Sascot

Good luck, hope this one works well with no reaction


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## Jmrogers4

Problem with MMJ in any form is it's still illegal in most states and not sure how it would effect growing developing bodies.


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## mugsymagoos

YES to Stelara!  My daughter has been on it close to two years and is doing amazing!  She failed all other biologics, and was able to have her ileostomy reversed because Stelara cleared up the inflammation in her colon when no other meds would.  My insurance covered it also.  I would absolutely recommend giving it a try!


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## rollinstone

Jmrogers4 said:


> Problem with MMJ in any form is it's still illegal in most states and not sure how it would effect growing developing bodies.


There is a thread on here somewhere, tagging coltyns family, I think that's the only med they use and he's in complete remission now, he's fairly young too. As for how it effects developing bodies, as long as steps are taken to mitigate the psychoactive effects I'd see it being a lot safer than any crohns pharmaceutical as it's natural. Best wishes to you all whatever paths you take, hope your kiddies find remission very soon!


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## DustyKat

Thank you for your thoughts and suggestions rollinstone. 

Due to marijuana, including MMJ, being illegal in many states/countries and also the concerns of some forum members about the open discussion of marijuana across the forum it was decided by admin some time ago to create a separate forum for MMJ, located here:

http://www.crohnsforum.com/forumdisplay.php?f=63

Normally posts discussing the drug's use are moved to the MMJ forum but since your post is not specifically about MMJ I am happy to leave it here. 

I would also like to add a note of caution to any parent thinking about the use of Medical Marijuana for their child. It is imperative that you establish not only the legal status of Medical Marijuana in your state/country but also what implications there may be for you as an adult administering/supplying the drug to a minor. If MMJ is legal where you reside then a prescription from a doctor in the name of your child would cover the legalities of administering MMJ just as it does for any other scheduled drug.

Dusty.


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## Brian'sMom

mugsymagoos said:


> YES to Stelara!  My daughter has been on it close to two years and is doing amazing!  She failed all other biologics, and was able to have her ileostomy reversed because Stelara cleared up the inflammation in her colon when no other meds would.  My insurance covered it also.  I would absolutely recommend giving it a try!


Since there aren't any kids on Vedo here.... I'm stuck looking at the adult thread.  I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel and something about the dosing. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here. I hope I'll be posting soon that Vedo finally kicked in. At least we still have Stelara in the wings... but you all know how hard it is to keep starting over with a new med.


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## kimmidwife

I know exactly what you mean! Well at least soon we will have each other to talk about I with! Keeping our fingers crossed that the insurance approves it quickly.


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## kimmidwife

Was on the phone for an hour and a half with the insurance company today about the entyvio. They don't cover it. We are going to have to have our doctor go through a medical necessity appeal which goodness knows how long that will take! I am so annoyed. The Cimzia took six weeks for approval and that was a formulary medication. These I surances are so frustrating!!!!!


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## Jmrogers4

Sorry you are having to do the insurance fight again.  Thanks to both of your kids for being trailblazers in case any of our kids have to go down the same road but I'm truly sorry they have to be.  Hoping this is the magic medicine to get them to a long lasting remission


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## Farmwife

My deepest sympathies. It took 3 denials for the doc to say file a grievance. 
I haven't done it yet but will start next week.


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## kimmidwife

So I was on the phone again with the insurance and her case manager came up with a plan. Since this is an infusion given in a hospital setting she is going to see if they can get it covered through medical benefits instead of pharmacy or combined with pharmacy. Hopefully they will figure something out. Keeping my fingers triple crossed!!!!


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## DanceMom

Our prescription plan will only cover $4000/month for A's medication so our medical insurance covers the rest, minus a monthly co-pay. Our specialty pharmacy was instrumental in getting this coverage approved and they did it fairly quickly. They are awesome! Are you dealing with a specialty pharmacy that can help you out?


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## my little penguin

They cover remicade at the hospital for Ds through the medical side completely -not the pharmacy side-it was a procedure just like a scope -remicade just happened to be the med given .
That meant we paid x% of the total cost.

Humira is given at home so that is solely through a specialty pharmacy good luck


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## Brian'sMom

kimmidwife said:


> So I was on the phone again with the insurance and her case manager came up with a plan. Since this is an infusion given in a hospital setting she is going to see if they can get it covered through medical benefits instead of pharmacy or combined with pharmacy. Hopefully they will figure something out. Keeping my fingers triple crossed!!!!


That is totally how it is for us. Infusion done in the infusion ctr at the hospital... goes under our medical side of insurance. Only the injections that were delivered to our home were handled under our pharmacy side.


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## kimmidwife

You know that is what I thought from the begining that it should be covered by the medical side. Maybe the case manager didn't realix it was an IV med at first, even though I told her it was. Anyway hoping to hear something by Monday!


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## Mehita

Ditto on the medical coverage here too. All DS's Remicade infusions are covered that way, plus Remistart.

Is there any manufacturer program with Entyvio?


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## kimmidwife

Mehita,
 I am not sure but my next step was to look into that.


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## Brian'sMom

Mehita said:


> Ditto on the medical coverage here too. All DS's Remicade infusions are covered that way, plus Remistart.
> 
> Is there any manufacturer program with Entyvio?


They have a program called Entyvio Connect Co Pay Assistance. But you have to be 18 yrs or older. I have exhausted trying to get them to add my son. Cimzia did the same thing but then changed their criteria. The case worker at Entyvio said that since this drug just got FDA approval for adults in June of 2014... they are being very strict so far with the 18yr old guidelines. Let me know if you hear anything different. The phone number for their program is toll free 855-368-9846 and open 8am to 8pm eastern time m-f


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## Mehita

So it's mostly because it's not FDA approved for pediatric use then? Or because it's so new?


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## Brian'sMom

I guess both. I said to her about the FDA for adults thing; "Well so is Humira and Cimzia and we were allowed into their co pay program" (When we were starting Cimzia  Sept of 2013 they also told me the 18 yr old thing but later let us in). She said, "Well, Vedolizumab is so new at the moment, those others have been out longer- keep checking back" -- The case worker I talked to is covers the 913 area code -- Kansas-- She did also say that as more and more kids are started on it (and she said they are) then that could change it too.


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## vtfamily

Makes sense.  The insurance companies don't really know what to do with the new meds or protocols in the beginning either.  The more people who use them, the more established the protocols and usage become.


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## kimmidwife

That is so true!!!! Still waiting for the darn doctors office to send in the referral. Getting super annoyed at this point.
Brian's mom,
What is the starting schedule with entyvio?


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## Brian'sMom

It's given at 0 week, 2 week, 6 week and then every 8 weeks. The infusion is 30 minutes!


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## AZMOM

Brian's Mom & kimmidwife & vtfamily - 

I'm disappointed to report that we've had another dramatic rise in calprotectin (1156 this week) and arthritis flare in the ankle.  

Not sure Stelara will be our silver bullet.  :-(  Starting with this Friday's dose, we are increasing from 45mg to 60mg.  Repeat labs in 2 months.  

Crossing my fingers........  

Julie

PS I may be asking the entyvio questions sooner than later.


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## kimmidwife

Julie so sorry to hear! Please keep us posted.


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## kimmidwife

I am ready to scream! The doctors office still has Not sent in the paperwork to the insurance company! One little piece of paper they need to fill out and every time I call yes it's being done! I don't know who else to call at this point. I am so frustrated with them!


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## vtfamily

Julie,
I'm so sorry things have taken a turn for the worse.  It would be great if the bump in dosage works.  Do the docs suspect a build-up of antibodies or something else?
Cheryl VT


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## kimmidwife

Hi everyone! I hope you are all having a good weekend. We are still up in the air on the entyvio. I don't know what will happen with it at this point.  they can't seem to get their act together.


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## Brian'sMom

Kim, Our insurance took about a month. My husband started a new job in November... so we had to have our new insurance approve. Which they did without problem. (It was even on their 'approved drug list'). Your daughter has had allergic issues (we did with Remicade)... Once you have tried all 3 biologics.. then I think there isn't much resistance to approving use of Entyvio (VEDO).  Keep on them. Sometimes its the GI staff, etc. that are the problem.(THey need to state to insurance all that your daughter has tried and her allergic reactions to TNF drugs).  Our GI office is part of the hospital so I could call the Pre Authorization dept of the hospital to check on the status. I've been told more than once by KC and Mayo that this drug doesn't have all the warning the others do. It's gut specific and doesn't affect the whole body. I just pray it works for many!!


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## kimmidwife

Brian'smom,
The GI office is a huge part of the issue. Now they are saying they are not sure where we can give her the Infusion they have to set it up. I am like you have patients on remix add right? Yes. So wherever remixade is done we can go to do it.
Well it has to be set up it is a New drug etc etc. ugh!


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## my little penguin

Is there another Ibd clinic near you ?


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## Brian'sMom

kimmidwife said:


> Brian'smom,
> The GI office is a huge part of the issue. Now they are saying they are not sure where we can give her the Infusion they have to set it up. I am like you have patients on remix add right? Yes. So wherever remixade is done we can go to do it.
> Well it has to be set up it is a New drug etc etc. ugh!


Any infusion center can do it. IV... then give drug at rate on instructions! And any pharmacy should know how to mix it and get it ready. That has got to be so frustrating. So are you saying you have pre authorization done... just waiting on where to do it?


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## AZMOM

vtfamily - Doc didn't say anything about a build up in antibodies to Stelara.  I guess I hadn't even thought about that being an issue!  I'll ask.  We increased to 60mg Friday without incident.  I think she looks pale but I'm paranoid.  :ybatty:  We are back on supplemental EN because of the falling albumin.  (We took a break for the month of December.)

I hate waiting for the other shoe to drop.  I wanted this to be our "sliver bullet".  We all feel that way with every change though - I know.  

kimmidwife - Ride that GI office.  Good grief!!!!!!!!!! :ymad:

J.


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## Sascot

Hope it gets sorted soon!


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## kimmidwife

Brian's mom,
We are still waiting for both things. MLP, I wish there was another IBD center nearby. There is basically one left that takes our insurance but she is a single practitioner and is overwhelmed with patients. Her coverage for when she is out of town is not the greatest so I really think we are stuck at this point.


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## my little penguin

That stinks
Any adult Gi centers that take teenagers 
She is 16 right ???


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## kimmidwife

Yes she is 16. We are really limited by who takes our insurance. There is only one major IBD center and that is university of Miami. We are currently in their Peds department. We will move up to their adult at some point not sure when or we may look into other adult places. I heard some decent things about Cleveland clinic. I want to wait as long as possible though before moving because one she is not ready to be treated as an adult and two we had a bad experience with the adult GI I we did try already.
Meanwhile there is still no answer on when the infusion will be done.


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## kimmidwife

Still no word on entyvio. I am so angry with the doctors office! I am disgusted and fed up!


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## my little penguin

Can you try to insurance market place or medical assistance for her to see if it would open up anymore options ??


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## Clash

Sorry I'm late to the latest updates. I just wanted to send hugs your way! I hope the GI gets their butts in gear and pushes this through for you guys or you are able to find a better option!


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## Maya142

Poor, poor Caitlyn, I feel like she has been suffering for so long. 
I hope her GI's office can get their act together. Ridiculous that you both have to go through this. Sending hugs.


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## crohnsinct

This is insanity!  They delay and your daughter suffers!  How can they treat a person like that and a kid at that!


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## Farmwife

I fell your frustration completely! At least Grace gets hers every 8 wks but what their doing to you guys is just crazy!  HUGS


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## kimmidwife

Caitlyn has an appt Thursday with the doctor and believe me I will be giving them a piece of my mind about how angry I am with this incompetence on their part!!!!!!!


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## kimmidwife

Hi All,
So My daughter's doctor called last night. She apologized and said they have been trying to get the entyvio set up but the hospital has been giving them issues because she is under 18 and it is not approved for under 18. 
Anyway the office is trying to work it out but it is very complicated.


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## Sascot

Hope they can sort it out soon


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## Tesscorm

Ugghh, I hope they can resolve the issues and move on with this!  So unfair that Caitlyn must continue to suffer! :ghug:


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## Brian'sMom

kimmidwife said:


> Hi All,
> So My daughter's doctor called last night. She apologized and said they have been trying to get the entyvio set up but the hospital has been giving them issues because she is under 18 and it is not approved for under 18.
> Anyway the office is trying to work it out but it is very complicated.


If she's failed the other ones, Remicade, Humira, Cimzia (which she has) the age shouldn't matter.


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## kimmidwife

Brain's mom,
This whole thing hias been beyond complicated. It is ridiculous. I have given up at this point.


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## AZMOM

do NOT give up!!!!!!!!!!!!!!


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## kimmidwife

I have unfortunately run out of strength.


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## Maya142

Is there someone else who could take over fighting with insurance/her doctor's group/the hospital for a while? Your husband, or other family (grandparents?). Or could you ask your insurance for a case manager for Caitlyn, since she is kind of complicated?

Sending hugs:ghug:


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## Farmwife

2 months or just shy of that for our battle with the insurance. I feel for you Kim.

Do you have a case worker at the insurance company. 
How about a social worker at the GI clinic?


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## crohnsinct

Oh mama:hug: Take a breather and get back at it.  Totally understandable why you feel the way you do.  But like a prisoner planning a prison break can dig for years before they are free.  If they only think about the digging they would give up.  But they think about the freedom so they press on.  Think about the end result of getting your daughter the drug she needs and her feeling better...not the digging!


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## kimmidwife

Thanks all for your support. Caitlyn does have a case manager unfortunately she is only able to help so much. There are a few things complicating everything. But hopefully it will eventually work out.


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## CrohnsKidMom

If the FDA has not approved Entyvio for anyone under 18, the insurance company would be hesitant in paying for it because of what it could mean for them legally.  Has the GI drowned them in medical evidence showing it's necessary?  And is there a 3rd party, an ombudsman, that could take your case?  I hope this gets resolved for you soon.


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## kimmidwife

Crohnskidmom,
It is not only the insurance giving the issues but also the hospital itself. It is crazy also because we have been traveling back and forth to New Jersey for medical treatments for me. Now we won't be back for a while which has messed things up even more. We were hoping to get the first two doses done before we went back to NJ but it didn't happen. I don't know what to do now.


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## my little penguin

Can she get treatments at DuPont in New Jersey?
They have a good Gi dept .


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## kimmidwife

MLP,
 I never heard of DuPont in New Jersey where is it? We are in north jersey.


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## Maya142

Are you close to Hackensack? We have also heard that there is a good pediatric GI dept at the hospital there (the head of the dept trained at CHOP I believe) but have never been there.


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## my little penguin

http://m.nemours.org/LocationsDirections?mobile=true

They also have one in Florida 
Not sure if that's where Dancemom goes or not


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## my little penguin

Might be worth it 
If both locations work together might be an option for you longer term


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## DanceMom

Nemours Orlando! Amazing place! A showed me an iMovie she made on her phone this week about her hospital....said that Disney wasn't the only magical place in Orlando!


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## vtfamily

kimmidwife said:


> Brain's mom,
> This whole thing hias been beyond complicated. It is ridiculous. I have given up at this point.


Hang tough!  There has to be a good reason that so many GI docs are excited about Vedo.  They just have to help the parents advocate with insurance to make it happen.  Unfortunately, subscribers have very little power with the insurance companies alone.

Hug x a million!
Cheryl


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## kimmidwife

Maya142,
We had a terrible experience at Hackensack this summer. We will never go back there. MLP I will check it out.


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## Maya142

Yikes, good to know, we won't go there either!


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## my little penguin

Hugs
It shouldn't be so hard to get meds for your kid


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## kimmidwife

Hi all I just wanted to stop in and update. I am in the hospital myself. A little bit of craziness in ,ice. It this was planned so not unexpected. The meds they are giving me are making me extremely loopy so if my typing is a little off please excuse me. I won't be on To much until I am out anyway but I like to check in as much as I can and see what is happening. Hopefully I a a,omg sense here as these meds have me all loopy. Please know I a, thinking of you all and wishing good days for our children!!!!


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## crohnsinct

You make complete sense but I have had a drink or two so.... 

Sorry to hear you are in the hospital again.  Glad to hear it was planned and not a surprise.  Hope you get better super fast!


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## Sascot

Hope you aren't in too long. Feel better soon


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## Tesscorm

Take care of yourself!


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## Jmrogers4

Hope you are feeling better soon.


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## my little penguin

Sending healthy vibes your way


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## kimmidwife

Crohn's instinct,
I feel like I have had thirty glasses of wine with all

 These drugs they are giving me I am so freaking dizzy. I looked up all the meds and every single one has dizziness as a possible side effect WTH!
On the plus side last night I had these crazy dreams from the meds and I dreamed I was on Las Vegas with Jonnie Depp in his movie fear and loathing in Las Vegas!


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## DustyKat

Can I have some of what you are having? I wouldn’t mind being in Vegas with Johnny flying the Jolly Roger! :eek2: 

I hope you are soon on the mend Kim. :ghug: Sending loads of love and healing thoughts your way. :heart: 

Dusty. xxx


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## kimmidwife

out of la la land and back to reality. I am feeling very weak. No improvement in pain yet. But they said it may take time to see results.
Caitlyn is status quo right now. She is very tired of being on prednisone.


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## kimmidwife

Hi everyone!
Haven't had great internet but it seems better today.
I am still very out of it. 
But getting better every day.
I have a question, My daughter has been having bright yellow poops. Really yellow. I can't remember ever seeing that before. Does anyone know what it could mean?
I have a call into the doctor but who knows when they will call back.


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## DustyKat

I’m not sure Kim but this site gives some suggestions:

Yellow Stool

With my two their bile salt malabsorption diarrhoea without using using a bulking agent can produce yellow stool. 

Thinking of you both. :heart:

Dusty. xxx


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## kimmidwife

thanks Dusty!
Would her resection possibly be a reason for it?


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## DustyKat

I wouldn’t rule it out Kim. :hug:


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## Sascot

Glad you are a bit better. As Dusty mentioned I seem to remember reading something about yellow stool and bile malabsorption


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## kimmidwife

Brr. It is so cold here!!!!
It is snowing like crazy too! 
So I didn't have a chance to post yesterday but I complained to the office manager about my daughter's doctor not calling us back. She said she would try to find out why she has not returned our calls. Hoping to hear back on Monday about what is going on.


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## DustyKat

I hope you hear back Monday Kim. :ghug: 

I think I need a lazy Sunday afternoon nap…I read post and office manager, I then put the two together and wondered why you would be complaining to the Post Office manager why the doctor didn’t call! :yfaint: :lol: 

Dusty. xxx


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## ronroush7

I don't know about entyvio but my doctor is considering taking me off of Stelara.   He says it is not doing me any good.

 2


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## kimmidwife

ronroush,
our doctor says stelara has very low success rates for crohn's disease. she said she doesn't even bother with it.


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## ronroush7

kimmidwife said:


> ronroush,
> our doctor says stelara has very low success rates for crohn's disease. she said she doesn't even bother with it.


Cimzia worked for a while and then it failed.  I was om.Remicade twice.  I developed a rare side effect :folliculitis.  I don't know what my doctor will put me on next.

 2


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## crohnsinct

ronroush7:  do you mind me asking why they took you off for folliculitis?  MY daughter has been fighting it off an on since the summer and no mention yet of stopping Remicade.  Maybe her case is nore contained?   

Sorry for the hijack Kim.


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## kimmidwife

No problem crohnsinstinct!


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## SupportiveMom

Just catching this thread. Have to ask rollinstone did you try the antibiotics treatment? My kid did. it is brutal and not for the faint of heart. Even though it might have triggered my kids 4 month remission I would NEVER do it to her again. Side effects were worse than Crohns symptoms themselves.


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## kimmidwife

SM,
We did just flagyl.
Anyway great news, we finally have a plan for her to get her entyvio done! The first dose is next week. I will let everyone know how it goes.


----------



## SupportiveMom

That is great kim!


----------



## Maya142

That's wonderful!! So glad it finally got worked out. Hope it works like magic!!


----------



## Clash

That's so great to hear! I hope all goes well!


----------



## DustyKat

At last! Woohoo! I hope all goes smoothly from hereon in Kim and it works wonderfully well for your lass. :ghug: 

Dusty. xxx


----------



## CarolinAlaska

Yea!  Here's hoping it does wonders!


----------



## Sascot

Hope it works great!


----------



## ronroush7

Is entyvio related to Remicade?   I had a rare side effect and now can't do Remicade or Humira.

 2


----------



## kimmidwife

Ronroush,
Entyvio is a brand new class of medications that is not related to humra or remicade. My daughter is allergic to those and cimzia. Cimzia is the same class of drugs. She is also allergic to imuran. We have had a rough time with allergic reactions. Fingers triple crossed for her to tolerate entyvio.


----------



## kimmidwife

i picked up a patient guide to entyvio at my GI doctor appt and now I am getting nervous about it. It says there is a reasonably high rate of people having allergic reactions to it. With Caitlyn's history that makes me nervous. Also it says it does suppress the immune system which was not what her doctor told me. I am surprised her doctor didn't want to do a TB test before she started it. Luckily she did have one before remicade so hopefully not something we need to worry about.
The infusion itself only takes 30 minutes but then I heard they have to observe for several hours afterwards to make sure she doesn't have a reaction.


----------



## SupportiveMom

Cimzia is still a TNF blocker like Remicade & Humira. Though all TNF blockers have the potential of antibody development, the newer ones are showing less and less risk. Just because you have a reaction to one TNF blocker does not mean you will have one to another. Meds like Cimzia & Simponi are really reducing reactions in patients from what I am hearing. I would mention it to your doc Ron. 

I hear you being cautious about another TNF blocker. After my kid went into Anaphylactic Shock & was sent to the ER & hospitalized on Remicade, so the thought of another biologic was not on my list to chance trying again. She has no issues with Simponi. There are enough differences even if they fall into the same classification. Hope that helps.


----------



## my little penguin

Also it could have been the additives to the iv when they mix it with the drugs
You can be allergic to anything


----------



## kimmidwife

I almost had a heart attack this morning? They called and told us they moved Caitlyn's infusion to Friday without telling us. I was like no we can't come Friday we have other appts already scheduled for then. I called her doctor and thankfully her doctor called the infusion place and told them they had to get her in for tomorrow. But the stress unti, we got it resolved! I am still shaking I was so upset with them!


----------



## Maya142

Good luck tomorrow! Fingers and toes crossed that she tolerates it:ghug:!!


----------



## SupportiveMom

I hope all goes well! let us know how she does on Friday.


----------



## my little penguin

Good luck 
Fingers and toes crossed


----------



## kimmidwife

SM,
She is going tomorrow not Friday! Keeping my fingers and toes crossed too!!!


----------



## Farmwife

I pray all goes well.


----------



## SupportiveMom

I'm glad you have your dates straight cause I am obviously confused. I had to reread it again. Good luck TODAY!


----------



## Sascot

Really hope it all goes well tomorrow! Keeping all my fingers and toes crossed too.


----------



## kimmidwife

At the hospital. Because of her multiple medication reactions they decided to premedicate with Benadryl and want us to stay for two hours after the infusion. They are also going to run it over an hour instead of thirty minutes.They were supposed to start it at 8am. The pharmacy still has not sent it up to them. Typical hospital just like the military, hurry up and wait!


----------



## kimmidwife

Finally started about fifteen minutes ago. They decided to give her Benadryl and prednisone prior. The Benadryl knocked her out. She is fast asleep.


----------



## Jmrogers4

Hope it all goes well


----------



## CarolinAlaska

How is she doing now? What kind of allergic reaction did she have in the past? Do you have an EpiPen to use at home in case she has a latent reaction? I'm thinking of you and your daughter today and praying that she will have a good response without side effects to this one.


----------



## Tesscorm

Hope all is going well  :ghug: :ghug:


----------



## kimmidwife

Sorry I didn't post earlier but I am fuming!
So Caitlyn started to feel ,Ike she was having some chest tightness. It it ends up she was dehydrated and they had given her Benadryl and zofran and finally steroids before the entyvio. I think it was just a lot for her. The nurse called the doctor to come evaluate her. We did not think she was having an allergic reaction to it but the nurse must have said something to the doctor about an allergic reaction because the doctor came in and starts going off on how Caitlyn is fine and this is not an allergy and how she didn't have an allergy to cimzia because then the nurse practitioner would not have let us leave. She was basically accusing us that we made up the whole allergic reaction thing! She was not there when Caitlyn got the cimzia the NP was there. She was out on sick leave.
I am so pissed. I did not make up Caitlyn turning red and splotchy or her getting a low grade fever within 15 minutes of the shot and then having itching all over her face and chest. Plus the nurse practitioner saw this and is now denying seeing it. She told us to go out and get Caitlyn the Benadryl right away (we had it in the car) and that if she didn't get better to take her to the ER. She even asked us if we felt comfortable leaving or not and we said since I have experience in the medical field we felt comfortable. After two doses of Benadryl all the symptoms resolved except for a terrible headache Caitlyn had for several days after.
I am beyond angry and I don't know what to do about this. Obviously the nurse practitioner lied because she realized she made a mistake letting us leave. But how dare she lie!
I didn't want my child to have an allergic reaction. I was very happy for her to get the cimzia. It is a heck of a lot easier then having had to deal with this whole entyvio business. 
How do you all think I should handle this? 
We are kind of stuck at this piont as the other doctors in the area feel Caitlyn is to severe a case for them to handle.


----------



## kimmidwife

PS! This whole thing has me really down.


----------



## my little penguin

Typically any time there is a allergic reaction to any meds in a hospital setting
The room is swarmedby mass amounts of people including a doctor to assess the situation
It it then documented in the charts 
If it's multiple system ana - a fast ride down to the ER if your currently outpatient.

Was she given the Cimzia at the hospital clinic or a seperate general office facility ?
Wasn't there any doc present in the building ?
I know for DS he is not permitted to even get an allergy shot in any building unless there is a doc on the premises somewhere .

What do her medical records say from the date of the office visit ?

I know DS can't have remicade . He had two seperate reactions at the infusion center 
But since the docs didn't put it offically in that he was allergic to it .
It doesn't exist 
Although there are multiple correspondences stating from all his specialists that he did react and should never be given the drug again.

I think your best bet would be to get a copy of the medical records.
I also take pics of any and all rashes etc during a reaction so the docs that were not there could actually "see" what happened .


----------



## DanceMom

At A's last infusion she experienced chest pain/tightness.  At the mere mention the nurse shut off the pump and called her doctor.  He wasn't able to come and see her so she was rushed down to the ER.  It was deemed that she was actually having an asthma flare (just happened to coincide with infusion), but it was still charted as a "possible allergic reaction" and the rate was decreased significantly for the remainder of the infusion.  If Caitlyn truly had an allergic reaction to the Cimzia she shouldn't have been allowed to leave without being evaluated by a physician.  I'm not saying she didn't have a reaction....I'm saying I wouldn't trust a medical professional that allowed her to leave.


----------



## Maya142

No advice Kim, but sending hugs.
What a horrible experience for you and Catilyn. :ghug:


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## kimmidwife

MLP,
I haven't seen the chart but after today I am sure it does not reflect what happened. 
Dancemom,
being a medical professional myself and seeing that the Benadryl eased her symptoms and the fact that we live under five minutes from a pediatric ER (very small hospital but their Peds ER is actually pretty good). I felt comfortable with taking her home and observing her.
Oh MLP it was in the office not the hospital.
She also was not having an anaphylactic reaction though I know it could have worsened but the Benadryl definitely helped. It eased the flushing and her temp didn't rise anymore. She was 
97.8 when we arrived and her temp rose to 99.8 after the shot.


----------



## my little penguin

Temperature typically does go up with biologics 
At least it did for DS with remicade and in the beginning with Humira .
If your still in NJ can you get in to DuPont or CHOP for care ?


----------



## my little penguin

One last thing the insurance may be your key
They would not approve entivio unless it was documented that there was a valid reason for stopping the already approved cimizia .
Might be worth getting those records 
Hugs


----------



## CarolinAlaska

Ugh, Kim, don't people make you mad sometimes?  I'd probably be arguing back at the doc and leaving in tears!  I hope you fared better, at least publicly.  I hope she was just having a bad day and apologizes later...  Ugh, ugh, ugh!


----------



## Farmwife

Get records!
I hope your girl starts feeling better soon.


----------



## SupportiveMom

Oh gosh what an ordeal! Hugs for both of you!!!

It is frustrating when they would lie to you like that. Always take pics of an allergic reaction for future. If it is spreading draw on her skin a pen mark to see if it gets worse or better. I think the reason D went into anaphylatic shock was because at the infusion prior she started to get chest pains and a rash and the doc came in and told the nurse it was fine and to keep pushing through just slower. It was the NP that was saying for us to go back to the doc and tell her. It is why at the last infusion D had she was getting the antibody test. Even at that infusion I had to get them to stop twice & check with the doc and thank G*d when he had the NP start again I asked him to stay for 10 minutes and watch her. Those docs get paid for our kids being there. They can do their job and check more thoroughly. It was then that D vomitted violently, and then passed out. I still regret letting him have the NP start the infusion again. If I wasn't so freaked out that I thought my kid just died in front of me I would have hit that doctor.  By the time she was settled into the ER the clinic was closed or i would have gone off! Glad you trusted your instincts and did the benadryl and checked in with the ER.


----------



## Tesscorm

I would also request the records but, can you send an email to request the records? 

Asking because in the email I would note everything that happened to Caitlyn, her reactions during/after, etc. and then mention that you would like the records to clarify as there seemed to be some confusion re what happened when you spoke with the doctor.  They may not change what they're saying but they will definitely be on alert next time knowing the incident is now in writing.  Not sure how it happens there but my emails to S's GI are added to his file.


----------



## kimmidwife

I am feeling a little better right now. I spoke with the office manager for about 45 minutes. She was very nice. She sent an email to the head doctor explaining exactly what happened. She said the head doctor will call me back later today.
I told her I am not some crazy baron Von Munchausen by proxy parent. I reminded her that I too am a medical professional. I told her my goal is to have my daughter healthy. That we were happy about the cimzia and really wanted caitlyn to have it and had no anterior motives. Trust me I wish she could be on the cimzia. The entyvio is a pain in the neck. We have to travel far to get to that hospital to get it done and we would much rather have had the cimzia work out. So I am waiting to hear back.
Meanwhile Caitlyn is really not feeling well today but I heard that is not unusual.
I also realized that she has not had labs done since November and when I spoem with the office manager I asked if we can get some labs done as well.
I will update as soon as I hear back.


----------



## CarolinAlaska

Thanks for the update, still no word?


----------



## kimmidwife

No word. But she said to give the doctor until tomorrow. If I don't hear by then I will call again.


----------



## kimmidwife

So still no call back from the head doctor. I spoke with the office manager again today. She was surprised we had not heard back. She sent another message to her.
Caitlyn's headache is finally better. She still doesnt feel well every time she eats but she is not complaining as much between meals.


----------



## CarolinAlaska

Sorry to hear it about the doc.  Glad to know that Caitlyn is getting better.


----------



## SupportiveMom

Now that Entyvio has been approved in Canada (though not for kids) doc wants to put D on this. she says We have 6 months to wait as there is currently none of the drug in Canada but her GI says that should be sorted out in the next few months she hopes. Then she has to appeal to let D go onto the med as she is only 14. I'm getting tired of being the guinea pig for these meds. Plan is to start this after surgery. Not looking forward to going back to infusion appointments. Please tell me this med is worth it.


----------



## Sascot

Can't believe they haven't phoned. Glad the headache is easing off, hope she starts to feel better soon


----------



## kimmidwife

SM,
The doctor says it takes a while to work but the longer people are on it the better the results.
Anyway the doctor in charge finally called. She said she is not sure why the misunderstanding occured but that the chart reflects that Caitlyn had a reaction to the cimzia. She is going to speak with our doctor and get it straightened out. She also will find out about labs for her.


----------



## SupportiveMom

I am glad you got that figured out.  I recently found out there is no antibodies test for Simponi. Made me wonder with the newness of Entyvio is there one for it? Not that I wish my kid to go through that again but the thought comes to mind.


----------



## kimmidwife

SM,
They haven't talked about it being an issue with entyvio.


----------



## SupportiveMom

ah makes sense with the human side versus the mouse component with infliximab.


----------



## my little penguin

There probably will be an antibody test eventually 
There is one for Humira now
You can build antibodies to any drug 
Remicade just has a higher probability of allergic reaction due to the murine protein.
Once you have antibodies the drug is less likely to work as well or stop working completely .


----------



## Maya142

Yes, we were told there will eventually be an antibodies test for Simponi, especially now that it is approved for UC. For whatever reason, GI's seem to use antibody tests way more than rheumatologists and while it has been approved for RA/AS for years, it was only just approved for UC.

Glad you get everything straightened out Kimmidwife!


----------



## kimmidwife

Sorry I was MIA for a few days. I had my next infusion and was totally out of it for a few days. Anyway I spoke with the doctor and she wants caitlyn to do an MRE tomorrow, blood work and a fecal calp. I suggested it would be a good idea to see what is going on and get a baseline as well for the entyvio treatment. Her next infusion is Wednesday.


----------



## izzi'smom

Wishing her luck tomorrow!


----------



## kimmidwife

So fed up with this hospital! Her appt was 1:15, 2pm they gave her the contrast and after 4 they finally took her back!!!


----------



## kimmidwife

Finally done!!!!


----------



## Farmwife

I'm glad it's done.
How long till you get results?


----------



## Maya142

Glad you're done. Hope you get results SOON :ghug:


----------



## my little penguin

Glad your done 
Contrast is suppose to take two hour to move to the right places before the imaging 
Hope you get results soon


----------



## kimmidwife

MLP,
In the past they took her back after an hour and then again a second time. They took her back 4:30 and didn't finish until 5:30. We are all exhausted. I am not sure when we will get results. When we go for the entyvio on Wednesday I will ask the nurse practitioner if the results are in.


----------



## my little penguin

Kim
We were surprised at his MrE in jan
A lot of the studies changed how they do the contrast ( timing movement etc ..)
To improve the images vs his last time .

Fingers crossed for inages Wednesday


----------



## crohnsinct

Hi Kim, 

That schedule is exactly what happened with T.  Arrive a half hour before starting to drink, to do paperwork etc.  Drink for two hours, then imaging for 45 minutes to an hour.  

Results were to our doc next day.  Hope her results are there Wednesday!


----------



## Sascot

Glad it's over, awful having all the waiting around. Hope the results are okay. Hope you are doing better after your infusion


----------



## kimmidwife

Unfortunately my infusion results only last until today. The last time when I had the five days it lasted a month. I am a bit down about it.
Fingers crossed for all to go smoothly at the infusion tomorrow. Her joint pain is really bad. I am going to ask the doc possibly about trying methotrexate again for the joint pain. I have read about some adults doing well with the combo of entyvio and methotrexate.


----------



## kimmidwife

At infusion. Going well so far. She is fast asleep from the Benadryl.


----------



## kimmidwife

The infusion went well today. She is not feeling great now but I expected that. We will see how tomorrow goes.


----------



## crohnsinct

Hope she is good tomorrow!  Were you able to ask about the MRE results?


----------



## kimmidwife

CIC,
The nurse practitioner gave us a vague answer about them. She didn't really want to discuss them bit wanted us to discuss with doctor. She said they didn't show any wall thickening but that was about all she said.


----------



## Maya142

How's she feeling today?


----------



## kimmidwife

Maya,
She has the headache again but not as bad as the first time. She is also having a lot of stomach pain. She is generally not feeling great all over like last time but not as severe as last time.


----------



## ronroush7

Went to a specialist yesterday.  If my Crohn's is active, Entyvio is one of the medicines they might consider.

 2


----------



## kimmidwife

Ronroush,
Let us know what happens.


----------



## kimmidwife

Wanted to update. Yesterday was awful. She had horrendous stomach pain and the headahche as well as bad nausea all day. Today though she seems better. Still very nauseas  it not complaining yet of the bad headache and stomach pain. Fingers triple crossed that she is on the upswing. I hope this gets better with time. Hoping she won't go through this after every infusion.


----------



## Sascot

Poor girl. Really hope it resolves quickly


----------



## Maya142

Poor Caitlyn  hope she feels better soon.


----------



## CarolinAlaska

I hope not!  Hopefully just a coincidence.


----------



## kimmidwife

We see her doctor tomorrow. Will let you all know what she says.


----------



## kimmidwife

Had a productive apt with the GI today. She said for the amount of pain my daughter is having she was surprised at how good the MRE looked. All her blood work came back normal but that is not unusual for her. Still awaiting the fecal calp. results. She thinks the prednisone did what it is supposed to thankfully. Now we just need the entyvio to work.
She wants her to see a pain management doctor and to see the immunologist again about a possible mast cell disorder. She also wants her to do a 24 hour urine to check for one more thing which I am not exactly sure what it is but it has to do with the gut making some type of abnormal cells.


----------



## Tesscorm

Glad MRE results are better than expected but I hope the entyvio begins to bring greater relief for Caitlyn!!  

Hope you are able to move fairly quickly with the pain management and immunologist apptmts...  :ghug:


----------



## CarolinAlaska

Praying for the Entyvio to kick in soon!


----------



## DustyKat

How are you both going Kim? :ghug:

Dusty. xxx


----------



## kimmidwife

Ugh Dusty. I have a kidney stone, I am really suffering. The pain started last night. It is awful.
Caitlyn is doing better. She seems to improve the second week after the infusion but she still has a lot of pain whenever she eats. We started her on Amitryptalline. I am really hoping it helps.


----------



## izzi'smom

Ugh. Hoping things improve. 

I wanted to mention also...izzis gi considered taking a pay cut to work at DuPont-he was super impressed with their program. I can't imagine traveling between states to get medical care for both of you...hugs!!


----------



## kimmidwife

Caitlyn's fecal calp. Result was 350 down from her last one of 450 so a little better which is good.
Myself I am not doing well. I have another kidney stone!!!! It hurts even worse then the last and is in the opposite side. UGH!!!!


----------



## CarolinAlaska

Poor Kim!  That is terrible!  I hope it passes quickly!


----------



## kimmidwife

Caitlyn has been having terrible pain all week which got significantly worse over the last 24hours. Now in the ER waiting eval.


----------



## Sascot

Sorry to hear that, hope they can help. Sorry I missed your posts about your kidney stones, hope they have passed and the pain settled


----------



## kimmidwife

They did an ultrasound checked for a uti and sent her home with a scrip for codeine and that was it. 
They didn't want to deal with it and said see your GI to follow up.


----------



## izzi'smom

Oh, wow! Hope the codeine helps (surprises me, as a lot of ers here won't give anything), that she can be seen soon and is feeling better!


----------



## CarolinAlaska

Aw!  Poor girl.  I hope she is better today...  Did you get to talk to the GI on call?


----------



## Rose

Hi Everyone,
I was hoping that someone could offer an update on how they are doing on Entyvio or Stelara. My son is currently on Remicade with questionable results. Doc says Entyvio may be next step. My son has Crohn's Colitis. Any shared experience negative or positive would be appreciated.


----------



## kimmidwife

Hi All,
We got an ASAP appt with this new pain management doc for Thursday. Fingers triple crossed that he can offer some help for her. We really need something to help her.
Rose,
My daughter goes for her third infusion this week. She has had no improvement yet but the doctor says it can take a long while to see results with this drug.


----------



## Maya142

Good luck Kim, will be thinking of you and Caitlyn! Really hope the pain management doc has ideas.


----------



## Rose

Thank you Kim. Please keep me posted. I pray everyday for a cure!


----------



## SupportiveMom

Rose I don't have any update for you with Stelara or Entyvio but I am sure someone will soon. My kid is moving to Entyvio shortly so I just follow this thread. She also has CC. Have you asked about Simponi? It helped my daughter significantly. It was the only medicine that gave her any remission at all since diagnosis. It is super easy to administer & done at home. I am not saying Entyvio isn't right for you, just want to share some other options. How about Humira? Has he tried that?


----------



## Sascot

Hope the pain doc can help. So awful watching when our kids struggle


----------



## kimmidwife

They are admitting Caitlyn to the hospital to try to figure out what is causing the pain. I am both happy and unhappy as it means we had to cancel the appt with the pain management doctor tomorrow. However I spoke with his office and they said they would speak to the doctor and maybe he can see her in the hospital or at least speak with her doctor there. Also her doctor is away at a conference so the doctor we are dealing with is a new one. We never met her before but really like her she seems to think outside the box. May be a good thing to have a different set of eyes looking at her. This doctor is actually a GI surgeon. She specializes in transplants and GI resections. They debated on giving her the Entyvio or not but decided to go ahead with it in the end as soon as it is done they will move her up to a room from the infusion place.


----------



## DanceMom

Keep us posted!  Fingers crossed you get answers this time!


----------



## CarolinAlaska

Thinking of you as you shift gears for this unexpected event.  Praying that this ends up being a very helpful inpatient visit.


----------



## Farmwife

I'll be praying for you guys.

HUGS


----------



## Maya142

Really really hope they can help her :ghug:

When M is inpatient she generally sees the inpatient pain management team who contact her pain management doctor. Then they come up with something to keep the pain under control. Not sure if that might be an option, if you can't see her doctor?

Good luck! Thinking of both of you.


----------



## pdx

Hope it's not too hard a stay, and that you get some answers to help you move forward.


----------



## Sascot

Good luck, hope you get some answers!


----------



## kimmidwife

She is still in the hospital so far they did blood work, collected stool, and an X-ray and that is it.


----------



## DanceMom

Have they helped make her more comfortable?  Any results yet?


----------



## my little penguin

Hugs that was our experience as well


----------



## Maya142

I hope they're at least giving her something for pain? Thinking of you both :ghug:


----------



## kimmidwife

Nope nothing for pain.


----------



## Jmrogers4

Thinking of you both, big hugs!


----------



## DanceMom

A was given morphine and tramadol and we found that to be very helpful in her recovery.


----------



## Sascot

How frustrating! That's awful they aren't giving something strong for the pain


----------



## kimmidwife

Just spoke with the doctor. They decided to do scopes tomorrow's. Discussed the possibly of a pill camera. They are going to discuss it and see.
Her last scopes were November. Do you guys think it will really show a huge difference in this short amount of time?


----------



## kimmidwife

They are finally giving her some pain meds. Her pain got even worse from the prep. My poor baby!!!!


----------



## Sascot

Poor girl. Andrew had a lot of pain with the prep, it wasn't nice to watch. Hope the scopes go okay.


----------



## my little penguin

Good luck today
Inpatient prep is the worst imo.


----------



## kimmidwife

She had s terrible night and is still having terrible pain. They just gave her something for pain. But it makes me so mad that these doctors don't think ahead.
Order pain meds as needed so the patient doesn't have to wait and also anti nausea meds. It is ridiculous!


----------



## kimmidwife

Scopes are cancelled for today. They couldn't get an anesthesiologist! After my baby suffered so much with the prep! I am fuming!!!!!!!
How could a children's hospital not have an anesthesiologist?


----------



## Tesscorm

That's awful!  Lots of hugs for both of you! :ghug:


----------



## pdx

So so sorry to hear this.  Were they able to reschedule the scopes?  I really feel for you and your daughter.  Hospital stays are so hard--everything seems to move in slow motion.


----------



## kimmidwife

So I made a bunch of calls and contacted the CEO of the hospital. Within 15 minutes they came down and said they were going to resolve this. They got the head of anesthesia and they took her down for the scopes. I need a glass of wine!
:wine:


----------



## Farmwife

GOOD FOR YOU!!! 
:ymad: So maddening on so many levels. 
I pray scopes can give you an idea of what's happening.


----------



## crohnsinct

YAY YOU!  :tank:You deserve a case of wine!


----------



## Maya142

Way to go Kim!! You deserve many glasses of wine :drink:!
I hope scopes give you some answers and Caitlyn starts feeling better soon :ghug:


----------



## kimmidwife

She is in recovery. Her insides showed severe inflammation and ulcerations from her mouth to her anus. 
The doctors are not sure if this is some infection, from the entyvio, or from the Crohn's. They sent stat biopsies that we should get preliminary results on tomorrow. They also put in a PICC line to give her supplemental nutrition.


----------



## Farmwife

So sorry Kim. Hugs to you both and prayers coming your way.


----------



## pdx

Oh no--no wonder she has been in so much pain.  Good for you for getting the scopes done today so that you and her doctors know what you're dealing with.


----------



## Maya142

I'm so sorry to hear that, poor Caitlyn! That explains all the pain  I hope they can figure it out soon and get her feeling better.
Sending hugs :ghug:


----------



## DanceMom

I'm so glad you're getting answers and her pain is validated. I know the results aren't what you wanted to hear, but now they have to listen and do something.


----------



## Mehita

Your poor girl. Good for you for pushing them!


----------



## xmdmom

Thinking of you guys and sending healing thoughts!


----------



## kimmidwife

Finally got the prelim results back. No infection was found as of yet. It appears to be severe Crohn's inflammation.. They are wondering if the entyvio is actually making things worse instead of better. I don't know what the next step will be we are running out of drugs here.


----------



## MamaHenn

Lots of hugs. I can't imagine how difficult this is for you.


----------



## kimmidwife

They started her on the steroids late last night. We are keeping her on a very limited diet for now. She seems a drop better today. Still no word on when she might come home.


----------



## Maya142

I'm so glad she's feeling a little better! Hope things continue to improve :hug:


----------



## Tesscorm

Wish I could do more than just send hugs :ghug: :ghug:  You have both been through so much lately, I hope they can come up with a good treatment plan soon, and something to alleviate her pain now!

Thinking of you :ghug: :ghug:


----------



## kimmidwife

Still waiting to hear from the doctors today. I really really want my baby home! Since she has the PICC line everything they can do for her there we can do at home. I am not sure how long it will take to get set up with the home health though?


----------



## my little penguin

Isn't she in iv steriods ?
Plus in hospital they can do monitering and testing with daily GI access until she improves....
Why isn't she doing an ng or nj tube for feeds since there is less risk ?


----------



## DanceMom

Don't rush the discharge.  I know being in the hospital is no fun, but it sounds like she is seriously ill and she probably needs to be monitored closely.  I'm glad they are finally taking her case seriously.


----------



## kimmidwife

MLP,
She is on IV steroids. But we can do them at home with the PICC line. I am not sure why they went with TPN in the end over a feeding tube. We discussed both. 
Dancemom,
They are awful at this hospital. You call the nurses and it takes them hours to come. She is just miserable there. It is also over an hour away from us which makes it hard. Plus they want her to have an appt with the outpatient pain management doctor as soon as possible but I can make the appt until I know when she is coming home


----------



## my little penguin

I am sorry she is having a rough time there 
I know your sleep deprived and stressed so take this next part kindly
Most kiddis hospitals are never close an hour or slightly more is considered good 
Some folks drive 3-4 hours which is why Ronald McDonald house started.
Every hospital really is slow too many patients too few nurses 
Some are worse than others 
5 minutes means at least half hour to hour or more .
Is someone staying with her 24 hours ?
I know our hospital requires one parent present 24/7.

Maya can speak on this but I think pain management typically will not touch them if they are actively flaring ( which they know in her case ).
Typically they only get involved if there is pain even if the inflammation has been reduced .

Second the not pushing to get out. No one likes hospitals and they are a pita for all involved .
If you don't like the hospital or GI then after this is done look to transfer 
But if she is severely inflamed let the docs get her to a better place first .

Plus how much rest would she get at home ? ( aren't there 4 other little ones that are homeschooled at home ??) and your left playing phone tag with the GI office again without a real plan since steriods are only short term .


----------



## kimmidwife

MLP!
I am not taking it as a criticism but we are stuck with this GI practice (supposedly the best in This area)and unfortunately they use this hospital which is not a good one. The pain management team at the hospital want her to see the outpatient doctor as soon as possible because they said they a re very limited in what they can do for her and that he may have better suggestions.
I know other people travel further but it is just hard with three other kids at home.


----------



## Maya142

The inpatient pain management team generally has helped M when she had been in the hospital - couldn't they call the outpatient pain management doctor and see what he suggests?

However, since Caitlyn is flaring, they may not want to give her opioids and that kind of limits her options. There are drugs like Gabapentin but if I remember correctly she had a bad reaction?
We were told Nubain (which is kind of like an opioid I think) is one of the best drugs for GI pain since it doesn't slow the gut down in the same way that oxycodone or Vicodin do.

I hope they can get Caitlyn feeling better SOON. Did they decide whether she's staying on Entyvio?


----------



## xmdmom

I am wondering too about NG feeds. I think I recall she didn't want the NG tube  (that's understandable!) but enteral nutrition seems like it could be helpful if the doctors think it's save, as an adjunct to whatever treatment they are recommending. I don't get the PIC line since you can give much better nutritional support enterally than IV.

I am so sorry that you guys are dealing with the pain and flare.  Hoping you guys gets a good longterm plan soon!


----------



## kimmidwife

Maya,
 They are giving her dilaudid since it also comes in pill form and so she can go home with some. They are hopefully arranging for the outpatient guy to come see her. They won't be discharging her until later in the week at the earliest.
Xmdmom, 
I am not sure why they decided on the PICC vs the NG tube, but I got the impression that Caitlyn's doctor who is back today from being away is not happy about it. I think if she had been here they would have done the NG tube. But now she said maybe they would take it out in the next few days but I am not happy about that. If it is in already just leave it and let her get some extra nutrition for the next few weeks. So we discussed that and she is going to think about that.


----------



## Maya142

Would Caitlyn even be able to tolerate the NG tube with her gastroparesis? M had a really hard time with her NG tube as she developed gastroparesis - she had bad nausea and even vomited. An NJ tube worked but she hated it so much that it only lasted 10 days or so.

I'm glad they're giving her something for pain. Hang in there :ghug:


----------



## kimmidwife

Maya,
I would be really worried about it. When she had the NG tube for eight hours for one of the gastroparesis studies she vomited almost the entire time nonstop. It is one reason she is so adamantly opposed to it.


----------



## xmdmom

I don't know what the rate the NG tube was going or if it a bolus was given when she vomited with her test.  I would think that they could start at a very low rate of NG feeds and slowly increase up as tolerated; NJ may be a possibility if NG isn't tolerated- I really don't know.

You might want to find out how many calories she is/will be getting via the IV  and how often she'll need blood work while on it.  When tolerated, enteral nutrition can give more calories/nutrition than IV assuming the gut is absorbing the nutrients.


----------



## kimmidwife

XMDMom,
When she had the tube last time nothing was going through it they were using it to measure the pressure in her esophagus and stomach.
She couldn't tolerate the actual tube.
The doctor doesn't want her on it long maybe a couple of weeks.


----------



## Maya142

An NJ tube worked MUCH better (NO nausea) than the NG tube for M but she hated having the tube in all day and it's a thicker tube so more uncomfortable (she didn't mind the feeling of the NG tube at all, but absolutely hated the NJ tube).

Don't really blame Caitlyn for being against the NG tube if she vomited the whole time, poor thing! Hope TPN goes smoothly.


----------



## my little penguin

http://community.kidswithfoodallerg...cle?reply=33953729404533538#33953729404533538
Kim
Look here for mast cell activation syndrome 
Flushing a big issue


----------



## kimmidwife

MLP!
 I am convinced this is what she has. The doctor agrees it is a possibility that is why she wants us to go back to the immunologist. She is also doing a special 24 hour urine on her.

Gurus,
I need your opinion,  Caitlyn just had her first real bowel movement since the colonoscopy on Friday. (She has not really been eating until today so hasn't gone.) it was pure blood. Could this be from the colonoscopy?


----------



## xmdmom

Are you thinking that the mast cell activation syndrome is causing the IBD or a result of it or a coincidental issue?

Did they take biopsies and if so, can they stain for mast cells? IDK!  I've read that mast cell are thought to play a role in regular IBD.


----------



## kimmidwife

Xmdmom,
I think they are thinking it is a coincidental occurrence but I will ask her Dr. About that as soon as I speak with her this morning.


----------



## my little penguin

Biopsy slides need a special stain to reveal mast cells
Additionally mast cells are increased in general with Ibd
Mastocystosis is rare but mast cell disorder is not
Top doc in the country for ped mast cell
Dr castells in Boston


----------



## kimmidwife

MLP,
I emailed her last year and she said she would be happy to talk with our doctor. I am going to ask the immunologist to speak with her when we see her.


----------



## kimmidwife

I forgot to post they decided to start Caitlyn on methotrexate as bridge drug until the entyvio kicks in. (Or perhaps I should say I asked the doctor if it might be a good idea to use methotrexate as a bridge drug. Don't you love when we have to do the thinking for these doctors?) She was on methotrexate alone as a treatment several years back and it worked for a while then stopped working. I forgot how long it takes to kick in. i am really hoping it can help as she does not want to be back on steroids for a long time again.


----------



## crohnsinct

Methotrexate can take up to 12 weeks and at a minimum 8 weeks...according to our GI...this is why we had to decide EEN or steroids to get T's inflammation under control until the Mtx would kick in.  :ghug:


----------



## kimmidwife

Thanks crohns instinct,
She will be on steroids I guess at least eight weeks minimum then.


----------



## Sascot

Seems like it's really a struggle in the hospital for you both. Hope they can get the pain mgt guy to see Caitlin soon. I really hope something they do will start helping her as soon as possible.


----------



## Farmwife

I hope the bridge works. They added sulfasalazine as Grace's bridge and it worked....... kind of.

I hope she's resting better. How did the test go? Was her stomach better or worse?


----------



## kimmidwife

FW,
We just got the results and they show her gastroparesis has improved greatly. It had shown improvement last summer and now showed more improvement. So one thing of good news. 
We are having a huge fight with her doctor right now about the PICC line and TPN. She only had the TPN for two days and the doctor wants to pull it out and send her home. I am fine with the sending home, but what the heck did they out it in then for!!!!!!!!!!!
I have been trying to reach the head GI doc all day to no avail. The patient rep is here trying to reach her for us. We are looking for a new GI ASAP. We are done with this hospital and this GI!!!!!!!!!!!!!!!!!!!


----------



## Maya142

So glad to hear her gastroparesis improved!!
Really hope you can get TPN sorted out. This is so ridiculous :ghug:


----------



## xmdmom

Great news about the gastroparesis.   If it was a mistake to put it in, let them pull it out. Keep it in only if there are some really good reasons. If it were me or my child, I would want the line out unless there was no other way to get nutrients in since there are some potential serious complications and I am risk aversive.

Am I remembering correctly that she got admitted by a GI surgeon? (Maybe I'm making that up.)  If so, pic lines are so usual for surgeons that they don't necessarily think about the pain or trauma of putting one in. My experience with surgeons is that many can be pretty shortsighted and often do things as a reflex without a lot of thought.  I  know this isn't true about all of them!

Hugs!


----------



## Mehita

Is it possible you'll be doing IV abx at home? That would be a reason the keep the PICC for a bit - or at least until you know the game plan.


----------



## kimmidwife

They pulled the PICC line out. The head doctor never called us back. She is coming home and we are looking for a new GI doctor.


----------



## kimmidwife

Update,She was doing better for a few days and then yesterday started getting pain again.
Gave the second methotrexate last night. Really hoping it can bridge the gap unti, the entyvio kicks in.


----------



## CarolinAlaska

I'm glad she had a few good days...  Here's hoping that the methotrexate does its stuff.


----------



## kimmidwife

She is still having a lot of pain. Got the appt with the pain doc rescheduled since she missed it when she was in the hospital so it is next week. Visit with the old doctor is Wednesday.


----------



## vtfamily

Kim,

Just catching up.  So sorry you guys are having such a difficult time.  The Crohn's is bad enough, but to end up in the hospital with little/no relief is maddening.

Did you end up doing the pill cam?

As for the PICC line and the TPN, from your description of her inflammation, it makes sense.  The TPN through the PICC line would give her nutrition and fully allow her entire digestive tract to rest and heal.  Nutrition through NG tubes still have to process through the gut and colon...which sounds like needs healing with sores from the mouth to the anus.  When Gus' gut was a gooey mess, the PICC line and TPN were the route we used.  The hardest part was that Gus still felt hungry and wanted the oral satisfaction.  After about two weeks he finally got permission for gum and hard candy...in small doses.

We too were out of med options at the time, entyvio wasn't in the picture yet.  Tysabri was out, due to the PML risk, so we had to go with Stelara.  Gus was not quite 13 yrs old at the time.  So happy we took the chance on Stelara.  It went to work quickly and he has been doing great for two years now...the longest he has ever been flare free.

I hope the entyvio does the same for you guys.  Prayers for answers, guidance and relief for you both.

Cheryl VT


----------



## SupportiveMom

I posted this in its own thread, but because this is sponsored by Takeda I thought I'd share in the post too. Hey all, I thought I would share this webinar from Crohn's and Colitis Canada happening tomorrow! It is supported by Takeda, maker of Entyvio (or supplier, I am not sure) Here is the details: 

Crohn's and Colitis Canada invites you to join us this Wednesday for our online 2015 Spring Webinar! This online education event will focus on the topic of Current and Emerging Therapies in IBD featuring leading gastroenterologist Dr. Remo Panaccione. This webinar will also include an interactive Q&A period, make sure to bring your most pressing Crohn's and colitis questions!

About Dr. Panaccione...

Dr. Remo Panaccione is an internationally recognized expert in inflammatory bowel disease. He is an Associate Professor in the Department of Medicine and the Director of the Inflammatory Bowel Disease Clinic (ranked among the top five units in the world).

Dr. Panaccione's special interests lie in the implementation and performance of clinical trials of new therapies in IBD. He also performs research in identifying new targets to develop new therapies in Crohn's and colitis.

Webinar Details: 

Wednesday May 13th, 2015
7 - 8 pm EST

Online via GoToWebinar 


Learn more about current and emerging therapies that help you manage your disease, reduce symptoms and attain a high quality of life!

For more details and to register visit, www.crohnsandcolitis.ca/learnonline 

Webinar log-in information will be emailed to registrants the day of the event. 

This webinar is Supported by Takeda


----------



## kimmidwife

SM,
I am going to check out this seminar!
Cheryl,
Very glad the stelara is working so well for Gus!
Caitlyn's appt is tomorrow. I will keep everyone posted.
She has been in terrible pain tonight. The prednisone does not seem to be helping this time. I am not sure why.


----------



## kimmidwife

Hi all! 
I am really pleased with how the appt went! He is wiling to take her back. He will see her until age 21.  he increased hey methotrexate,  he increased her LDN to 8 mg. He increased the amitryptalline to 50 mg. Which I am pretty sure was the dose she used to take but get other doctor refused to increase it. He said he just needs to check  blood work in a month. He also told us we are his pioneers. Since he saw us last he put 2 more patients on LDN and now caitlyn will be his first patient on Entyvio. It might be a little bit of work for his nurse to get it set up but he already has her working on it. I feel like a huge load has been taken off and feel so much better I can begin to tell you.


----------



## Tesscorm

I'm glad it went well!!  Just knowing there's a light at the end of the tunnel is a huge relief!

One question...  it's been a while since I've done any reading on LDN but I think I remember reading that LDN and the biologics and/or immunosuppressants work against one another??  Just wondering why her LDN is being increased now??

:ghug:


----------



## kimmidwife

He didn't seem to think they work against each other. I hope they won't.


----------



## my little penguin

http://www.gidoctor.net/client_files/file/LDN-for-IBD.pdf

Use with biologics and LDN


----------



## Tesscorm

I going to tag Kev - it may have been one of his posts that mentioned this...


----------



## vtfamily

Kim,
That is wonderful.  Breathing a sigh of relief for you too!  Fingers, toes and shoelaces crossed that entyvio works for you!!
Cheryl VT


----------



## kimmidwife

We finally saw the pain management doctor today. I was very impressed with him. He spent over an hour with us. He did a really thorough exam on Caitlyn including neurological. He had a lot of good thoughts. He wants to take things slowly but move forward. He also discussed how teenagers are developing myelin along their nerves now and how if your body is not absorbing nutrition properly then you won't build that myelin properly and that is what causes people with illnesses like Crohn's to get neuropathies. (Meaning you get numbness in areas). He said she already has some neuropathies but they can still be reversed at this age. He wants her to take a really good multivitamin and to watch what she is eating carefully. He also wants her to try neurontin again. In the summer she tried it and I am pretty sure she had a bad reaction to it but she says she does not think she did and wants to try it again. Then he also have her a prescription for a pain med to be used very sparingly and continue with the Amitryptalline at the higher dose.
All in all I am very pleased.


----------



## vtfamily

great news


----------



## Tesscorm

Glad the apptmt went well! 

FWIW, S`s GI once suggested that if S were to take a multi-vitamin, that children`s vitamins are absorbed higher up and may be absorbed more easily.  Not sure if this is an issue specific to S as it was his TI that was always his main area of inflammation but, thought I`d pass it along.  :ghug:


----------



## awmom

Hi Kim, just catching up and am so sorry Caitlyn has been going through so much.  I know it has also been rough on you.  It sounds like you are comfortable with the medical team and hope the Entyvio works wonders as well as the pain management recommendations. Sending warmest thoughts.


----------



## Sascot

Glad the appt went well, hope it all helps


----------



## Maya142

Really glad the appointment went well!

M has been on Neurontin since last July. The only side effect she has had is being sleepy after she takes it, but that's fine since she only takes it before bed and it is supposed to help her sleep anyway. 

I don't think it has helped her pain much unfortunately - in fact, we are going to take her off it soon, since it doesn't seem to be doing much and she's on enough medication. 

Hope it works for Caitlyn!


----------



## kimmidwife

Okay Gurus,
Caitlyn took the neurontin last night at 11pm. It is. Ow almost 2pm. She still feels lightheaded and dizzy. It is the only new thing. Has this happened to anyone else?


----------



## xmdmom

"SIDE EFFECTS: Drowsiness, dizziness, loss of coordination, tiredness, blurred/double vision, unusual eye movements, or shaking (tremor) may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly." http://www.rxlist.com/neurontin-drug/consumer-side-effects-precautions.htm


This sounds like it's not that uncommon and perhaps gets better with continued use-- I'd let her doctor know and ask.

According to drugs.com, "Nervous system side effects have been common. Somnolence, dizziness, ataxia, headache, and fatigue have been reported to occur in more than 10% of treated patients. "  

and 

"Some of the side effects that can occur with gabapentin may not need medical attention. *As your body adjusts to the medicine during treatment these side effects may go away. *Your health care professional may also be able to tell you about ways to reduce or prevent some of these side effects. If any of the following side effects continue, are bothersome or if you have any questions about them, check with your health care professional: long list.......feeling faint, dizzy, or lightheadedness............."

http://www.drugs.com/sfx/gabapentin-side-effects.html


----------



## Mr chicken

How is she doing today ??
Any better ?
Is she eating enough ?


----------



## kimmidwife

Hi everyone,
Been a crazy few days so I have barely been online. The neurontin was causing sever dizziness and nausea so we stopped it. Fingers crossed but she has not complained of pain in a few days! I am hoping the methotrexate/entyvio combo is working. The doctor gave her permission to start weaning the prednisone last week and she has started it without an increase in pain like last time.
I am breathing a cautious sigh of relief.


----------



## kimmidwife

Last night my daughter came out the shower and told me she burnt herself on the water. The water did not feel hot to her feet when she checked it. We realized she really does have some neuropathies like the pain doctor said. Does anyone know what supplements are good for helping with this?


----------



## Mr chicken

Honestly I have been burnt by water that just heated up after I checked
If she has that severe of neuropathy you need to have the doctor check her 
Supplements are not going to cut it
Testing will be needed to determine extent by a neurologist and the drugs to treat it are among other nuerotin /gabopentin


----------



## Catherine

Look at vitamin B levels.  DH is dealing with diabetic neuropathy.


----------



## kimmidwife

MLP, (sorry I can get used to Mr. Chicken)
Her new pain doctor is also a neurologist. He said she has some neuropathy. He recommended a general multivitamin and some extra B vitamins as Catherine said. 
Great news, she has not complained of pain in over a week even with weaning the prednisone. I think the combo of entyvio and methotrexate is helping.


----------



## kimmidwife

Does anyone k ow if methotrexate can cause bruising? We noticed last night that Caitlyn's legs are full of bruises and she does not know where they are coming from.


----------



## Mr chicken

Wa s her last bloodwork normal ?
If so when was it taken?
That can give you a clue whether the bruises were an issue .
Did you tell her GI?
What does the doc say ?


----------



## Maya142

Is she still on steroids? My daughter bruises a lot on steroids, even on low doses. She never remembers where the bruises are from either.


----------



## kimmidwife

Mr. Chicken,
We just noticed it. She has a GI appt on Friday. We will mention it then. She last had blood work right before we started the methotrexate.


----------



## Farmwife

Kim, are the bruises just on her shins or over the whole leg? When did you start noticing it.


----------



## kimmidwife

FW,
Her whole leg. We noticed it late last night.


----------



## kimmidwife

Maya,
Somehow I did not see your post. Yes she is still on steroids. Though she is weaning down.


----------



## Farmwife

Do you see any that are coming up to the surface ( small blueish dots ( ranging in size from a dime at a quarter size))?


----------



## kimmidwife

You mean like petechiae?
 Nothing like that no.


----------



## Farmwife

No, I was thinking  Erythema Nodosum (EN).
Grace's resemble bruises more than raised lumps like some get.


----------



## kimmidwife

FW,
I thought of those as well. She only has one that looks possibly like an EN. I am keeping an eye on it.


----------



## kimmidwife

Saw the new doctor in the practice today. He seems pretty nice. He is not sure what is causing the shaking or the bruising but he ordered a bunch of lab tests and a fecal calp. Just to see how it measures.
Got a question for you'all,
Fissures what is the best way to heal them?


----------



## kimmidwife

Fourth entyvio this week. Not sure if the entyvio or the methotrexate is what is working but one of them seems to be helping. Fingers triple crossed for it to continue.


----------



## Maya142

Really wonderful news :dance::dance::dance:!! That made my day!
Fingers and toes crossed for you.


----------



## awmom

That is SO good that something seems to be working!  There is nothing like seeing them feel better!!


----------



## Mr chicken

Glad it's working


----------



## Farmwife

:dusty:
So happy it seems to be working!


----------



## Jmrogers4

Keeping fingers and toes crossed that it is working and will continue to improve


----------



## pdx

Glad to hear that she's doing better, and hope it continues!


----------



## Sascot

Yay, more fingers crossed here too!


----------



## kimmidwife

Infusion day!


----------



## crohnsinct

Awesome news!  

Figured this was just as good a place as any to post this: 
http://www.healio.com/gastroenterol...-shows-promise-in-pediatric-patients-with-ibd


----------



## kimmidwife

The infusion went great today. The nurse was wonderful and all went smoothly until the doctor came to see us.
Caitlyn's regular doctor is away and so one of his partners came to see her for a couple of issues she is having. She started having severe pain in her behind the past few days so we wanted him to check it.
I forgot how much we can't stand this guy. He barley spoke with is just said the infusion will help and left. We were so mad as soon as her infusion was over we went to the office which is across the street. I told the nurse what happened and she basically gave me a look telling me she knows and agrees that he is a jerk. She got CAitlyn in to see the physician assistant. He doesn't think it is an access or fistula. He wants her to try canasta suppositories for a few days and see if it helps. We were also having an issue with her methotrexate with the syringes they gave us, they gave us insulin syringes and the needle is to small so he wrote for new syringes for her.


----------



## Maya142

Glad it went well (besides the awful doc)! Hope the canasa helps Caitlyn.


----------



## awmom

Gosh Kim you were awesome advocate for your daughter and she got what was necessary!!!  It seems more and more we are having to do this and it's good for the kids to learn early on.  I hope the she feels better with the suppositories and that the infusion continues to help.  I never asked you how her trip went in January?!


----------



## kimmidwife

Awmom,
Her trip went really well.


----------



## Maya142

Any improvement with suppositories and infusion Kim? I hope Caitlyn is feeling better


----------



## awmom

I'm so glad her trip was good!  Hope she is improving daily.


----------



## kimmidwife

Had no internet for a few days! So glad it is back!!!!!
Things are status quo for now!


----------



## kimmidwife

Caitlyn is off to camp! This is the first year we have dropped her off. Usually she flies up with other campers. It was amazing to see how they welcome the kids. What an amazing camp! It is a camp for kids with any chronic illness. She absolutely loves it. Her counselor is amazing too. She was her junior counselor last year and this year is her full counselor and she loves her. They stayed in touch all year and have been planning for camp.


----------



## Tesscorm

Hope she has a great time!!


----------



## awmom

That is wonderful!!!  What a great experience to have> And the knowledge for you that she is at camp where her health is taken into consideration has to give a sense of security and relief.  Hope she enjoys to the max!


----------



## Jmrogers4

Hope she has a great time.


----------



## pdx

That's so cool that she has such a great relationship with her counselor.  Hope she has a wonderful time again this year.


----------



## Sascot

That's great, hope she has a great time!


----------



## kimmidwife

When she gets home we will post some pictures.


----------



## kimmidwife

Caitlyn is back from camp. She had an amazing time. She has been totally off prednisone now for two weeks and we are seeing a return of symptoms. She started having stomach pain again, bad nausea, and odd swelling on the middle joint of both her pointer fingers and her pinky toe. As well as other odd red spots.
Has anyone else had this?
She has occasionally had swelling of that joint on her finger before but never to this extent and never on both hands.
I am upset as I thought the methotrexate should have been working by now. She started it the end of April.


----------



## Clash

C's rheumatologist just pointed out the swelling in joints of two of C's fingers. The swelling in the other finger joint has gone since last visit. She felt that the increased dose of mtx and the time now that humira has had to work were the cause for the improvement (one joint swelling improved, other joints still have some swelling but C is not having pain since increased mtx dose). The span of the increased dose was from the first of April til now.

She said she didn't think it was the effect of one or the other but the combined effort of increased mtx dose and time for humira to reach therapeutic levels (in April he had only been on humira a lil over a month and half maybe)

Could the mtx dose be increased?


----------



## kimmidwife

Clash,
I am also wondering if the methotrexate can be increased.


----------



## Clash

Well, I hope the doc can quickly find something that will help. The hurry up and wait kills me when my kid is in pain.


----------



## Maya142

What dose of MTX is she on? Does Caitlyn see a rheumatologist? I know good pediatric rheumatologists are VERY hard to find but it's worth it! 

Glad she had a good time at camp.


----------



## kimmidwife

Maya,
We were not able to find a ped one but she can see an adult one possibly. I am going to start looking into it.


----------



## Farmwife

Hugs Kim.:hug:
Grace started with toes. You want to make sure to get it under control if it's arthritis.
Trust me it can cause havoc if not treated in time.


----------



## kimmidwife

Thanks FW? I am going to start looking for a rheumatologist for her. We will have to look for an adult one. The peds one we saw was terrible and it took six months to see him.


----------



## Maya142

An adult one should be fine, as long as you can find a good one. In our experience, pediatric rheumatologists seem to treat more aggressively than adult ones, but since Caitlyn is already on meds like MTX, it shouldn't be an issue.

I agree with FW, if it's arthritis you want it treated ASAP. We did not treat M aggressively enough and are really paying for it.


----------



## vtfamily

Overall, are you pleased with how the entyvio is working?  Any word from Brian's Mom lately?


----------



## kimmidwife

My jury is still out on the entyvio. Our doctor said give it six months to a year. We are only on the fourth dose so far. Next one is August.


----------



## vtfamily

Keeping you in our thoughts and prayers!!!


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## crohnsinct

Ugh!  6 months to a year is such a long time to wait!  You get to wear the waiting crown at the end of all this.  :king: Yikes!


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## kimmidwife

Caitlyn posted her camp album on my page. If we are friends on the forum you can see it.


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## DustyKat

Keeping everything crossed that the Entyvio works Kim. :ghug: 

Fab photos! Thanks so much for posting.  

Dusty. xxx


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## kimmidwife

She is feeling pretty good right now. Hoping it continues.


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## Gmama

Wow Kim the pics are great & the camp looks like an awesome time! Love all of the costumes too!
Happy to hear she had a blast:thumleft:


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## crohnsinct

Yeah great pics and C looks terrific!  But ugh all those costumes!  It is all I can do to get packed for a camp that just requires shorts, t shirts and bathing suits and now you ask me to be creative and gather all that other stuff...soooo not showing those camp pictures to my girls!


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## kimmidwife

Can methotrexate make you depressed?
Caitlyn has been having mood swings which is not like her at all.


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## DanceMom

A had mood swings with Prednisone and Neurontin. She also gets moody when she isn't feeling well. Not sure about mtx but I'm sure it's possible.


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## Mr chicken

DS has been on it twice 
No issues with mood
Only with pred when weaning each time 
He weans from a higher dose down for about twenty four hours


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## Maya142

M had mood swings with pred and Solumedrol. No issues with MTX but she also does get moody when she's in a lot of pain or feeling particularly awful. She does see a psychologist who works in the IBD clinic at the hospital who has been a huge help. 

Hope Caitlyn feels better SOON!


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## kimmidwife

I definitely think it is the MTX. She gets the MYX Wednesday night. She has been depressed and moody on Thursday through Sunday. This has been consistent for the past few weeks.


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## Maya142

Does she get nauseous or sick with MTX? M would feel awful - dizzy and so nauseous that she was in bed for two days after MTX (hers was kind of an extreme reaction). That certainly made her moody! It wasn't the MTX I think, just the feeling awful.


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## kimmidwife

She does get somewhat nauseas.


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## Mr chicken

Is she still on pred or did she just wean off???
Has she seen psych at all to talk to most kiddos need a therapist since the disease is horrid 
Especially during teenage years


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## crohnsinct

Neither O or T get moody but T gets super tired and I imagine in a teen the fatigue could make them moody.


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## kimmidwife

She is off of pred. She used to see a therapist but not any longer. I really truly think this is a medication thing. She is normally the happiest person even when not feeling well she doesn't stay down for long. This is very unlike her.


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## Mr chicken

But doesn't she really need the med as a bridge since without her insides were a disaster 
Have you spoken to her Gi ??
Just never heard of Mtx having that issue


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## Mr chicken

http://www.arthritis.org/living-wit...modifying-drugs/methotrexate-side-effects.php

Does she take folic acid and if so how much ???
DS had flu like symptoms with his Mtx until he was switched to folate at 2 mg per day everyday even pill day


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## kimmidwife

She is on folate 1mg per day. I am going to speak with the doctor today.


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## kimmidwife

Just wanted to update. Didn't hear back from the doctor on Friday. Will call again tomorrow


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## malorymug

We struggle with MTX too. I think it is getting better 6 months in and 2mg of folate the day of MTX and 1mg the rest of the week. We are doing the methylated folic acid and I think it helps. Good luck sorting it out.


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## awmom

If she is feeling even a little nauseous that could could do it....I think these kids get so tired of not feeling well.  It certainly has been the case with N.  Do you know if the nausea is a temporary side effect that will get better after her body gets used to the mtx?


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## kimmidwife

Awmom,
I am not sure still haven't heard back from the doctor.


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## kimmidwife

Never heard back from the doctor last week or today. We skipped the methotrexate last week to give her a break until we heard back from the doctor. I will keep trying them.


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## awmom

Has her mood improved now,that she has been off the MTX?   I hope your from the doc soon.....it's been way too long!


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## kimmidwife

Awmom,
 Her mood is very bad for two to three days after the methotrexate then she is back to normal. I finally spoke with the nurse. He wants to decrease the dose to 10mg a week (0.4ml). And I am waiting to hear back about increasing the folic acid on the day we give it.


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## Mr chicken

We have increased folic acid everyday not just the day we give mtx
So steady dose 
Works wonders


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## Maya142

We did the same. Made a big difference. Also a small dose of Leucovorin, which is folinic acid and a "rescue" drug for MTX used more in cancer patients. M also tried Kytril (Granisetron) for MTX related nausea (not sure that is Caitlyn's issue?) and it worked better than Zofran for her.


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## kimmidwife

Okay so I spoke with the nurse again today (I know an actual phone call from them two days in a row wow!)
So he does not want to increase the folic acid. But he does want her to take it the day she gets the methotrexate he also wants to start her on uceris and also cannasa for her continued pain in her butt.


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## kimmidwife

Okay. Looked up uceris and realized it is budesonide or entocort. Not sure why he wants to start her on that need to call again tomorrow.
Also forgot to tell you all that her fecal calprotectin is down to 147 which we are very happy about.


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## kimmidwife

I don't k ow if you all remembe but a while back I posted about My daughter having shaking in her hands on and off. We asked the doctor but never got an answer about what he thinks it might be. Caitlyn told me today that she noticed it gets worse after I give her the methotrexate. Anyone else notice shaking as a side effect of methotrexate?
I am not sure if she is accurate on it. She hates the shots and I know she wants to be off of it so I am not sure if she is just blaming it on that.


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## crohnsinct

Haven't had any experience with shaking but is it just the shot part that bothers her?  Can you switch to oral?


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## kimmidwife

We asked about switching to oral but her doc doesn't want to switch her. He says the oral is very hard on the stomach.


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## Maya142

No issues with shaking here. My daughters both had an easier time tolerating the MTX shot, though I have heard of kids who prefer the oral MTX.


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## pdx

No shaking for E either, although she does get a little dizzy sometimes the following day.  She takes MTX orally and it doesn't bother her stomach.


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## crohnsinct

Haha Maya..that would be my girls!  

Kim:  you cold switch pretty easily between oral and injection...we did that for T right now.  She started with injections due to inflammation and the doc wanting her to absorb as much as possible.  Then she had a little difficulty with the shot so switched to oral but kept all the injection supplies so when inflammation occurs we could switch back to shots.  So maybe you could give it a try and if it is awful switch back?  But I understand with her gastroparesis etc it may be a little more difficult.


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## Maya142

Another thought - I believe the MTX injection is "drinkable" (mostly given to little kids who can't swallow the pills and don't want a shot). I know with M's gastroparesis, she absorbs liquid medications MUCH better than pills (Oxycodone is a prime example - the pill used to take several hours to work while the liquid works in about 30 minutes). I wonder if the MTX liquid would be easier on her stomach??

Just a thought.

This is the link: http://www.kidsgetarthritistoo.org/...re/treatment/methotrexate-for-arthritis-2.php



> 7. The injection is “drinkable.” If your child’s doctor has prescribed oral methotrexate and she has trouble swallowing pills, ask the doctor about prescribing the injectable liquid, which can also be taken orally. While the medication has to be measured into a syringe (slightly more work for parents), it goes down easier than a pill – and it costs less.


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## my little penguin

Ds did better with the pills than the shot 
No shaking only when weaning Pred the first time but not this time
Much slower wean


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## kimmidwife

Thanks Maya! I am going to ask about that. I am thinking the shaking is probably not related but it definitely did get worse after her last shot and then improved slowly maybe just a coincidence. I will see what happens this week.
One piece of good news, she had Entyvio number five this week and tolerated it much better. She didn't get the headache until yesterday, the infusion was Wednesday, and she usually gets it the next day and overal just didn't feel as bad as she usually does after.


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## Catherine

Could the shaking after shot be a form of panic attack?  The shaking from my kid panic attack lasted 20 minutes.


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## my little penguin

Good point Catherine
Panic /anxiety disorders can have lots of physical symptoms that can be confusing to the child and the parent .- adolescents is a common time for them to surface


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## kimmidwife

Catherine, the shaking is on and off on and off. It seems to get worse the day after the shot. That being said however she definitely does have anxiety about the shot. She gets severely nauseas as soon as I give it and I think at least partly it is anxiety related.


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## awmom

Nothing to add Kim as we have no experience with methotrexate, just wanted to send warm thoughts in figuring this out.  I wish she (or any of our kids) didn't have to deal with this.  Did the doc say anything else about the entocort?


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## my little penguin

Panic attacks tend to happen before or after the event but not at the actual event
Sometimes they can't be predicted at all
Anticipatory anxiety can lead up to panic attacks
Does she have a therapist to help with the anxiety by using cbt ??
That help Ds Immensely 
We make sure he is actively talking and thinking during his humira shots and the pain decreased to next to nothing 
Good luck


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## Catherine

What about Flight response from the needle?  Rather that a full panic attack.


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## kimmidwife

Catherine,
I think that is what it is exactly. It is not a fullblown panic attack.  MLP, she used to see someone but doesn't any longer it might be something we have to do again. She really doesn't want to though.


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## kimmidwife

Starting a new thread.


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## dchad57

Following thread starting Entyvio wanting more info on Stelara also. Any feed back is welcome on both drugs. Thank in advance


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