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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?
 
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.
 
Thinking of you as you shift gears for this unexpected event. Praying that this ends up being a very helpful inpatient visit.
 
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.
 
Hope it's not too hard a stay, and that you get some answers to help you move forward.
 
I hope they're at least giving her something for pain? Thinking of you both :ghug:
 
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?
 
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Poor girl. Andrew had a lot of pain with the prep, it wasn't nice to watch. Hope the scopes go okay.
 
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!
 
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?
 
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.
 
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:
 
GOOD FOR YOU!!!
:ymad: So maddening on so many levels.
I pray scopes can give you an idea of what's happening.
 
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:
 
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.
 
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.
 
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:
 
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.
 
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.
 
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.
 
I'm so glad she's feeling a little better! Hope things continue to improve :hug:
 
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:
 
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?
 
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 ?
 
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.
 
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
 
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 .
 
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.
 
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?
 
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!
 
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.
 
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:
 
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.
 
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.
 
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.
 
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.
 
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?
 
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.
 
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.
 
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
 
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.
 
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.
 
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:
 
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.
 
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?
 
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!!!!!!!!!!!!!!!!!!!
 
So glad to hear her gastroparesis improved!!
Really hope you can get TPN sorted out. This is so ridiculous :ghug:
 
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!
 
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.
 
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.
 
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.
 
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.
 
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
 
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
 
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.
 
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.
 
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:
 
Kim,
That is wonderful. Breathing a sigh of relief for you too! Fingers, toes and shoelaces crossed that entyvio works for you!!
Cheryl VT
 
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.
 
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:
 
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.
 
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!
 
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?
 
"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
 
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. 😊
 
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?
 
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
 
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.
 
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.
 
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 ?
 

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