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Crohn's Disease Forum » Parents of Kids with IBD » Using Stelara For Children With Crohn's


 
11-16-2013, 05:10 PM   #61
vtfamily
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Great news for Gus!! Kayla has been doing great on Stelara also! She is up in Gainesville at UF for College and is feeling really well! She now gets the Stelara injection every 8 weeks (90mg). I am so hoping that is gonna keep working!!
Looking forward to an update on how Kayla is doing over the break!

I'm so glad she is able to enjoy college.

Cheryl
11-17-2013, 08:40 AM   #62
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Hi Everybody! Things have been pretty rough around here, especially over the past 2 months or so. Liv has been on Stelara since May and had been tolerating the drug, looks fabulous and up until 2 weeks ago, was feeling good. Her labs have been slipping since August, and pretty steadily. Ferritin, Vit D levels low, FC over 1200, and her TSH levels are climbing. She is obviously not absorbing her thyroid hormone replacement, and Endo claims that because she has gained weight and "doing well" on the Stelara, she probably just needs more hormone...well she is now on a dose of 300mcg of Synthroid and her TSH is 95 this past week (supposed to be less than 1.0!!) If we are not able to suppress her TSH, she has a 30% chance of the cancer recurring...in the lymph, bone, lungs, anywhere. We can no longer do a wait and see approach, I fear the Stelara is not keeping CD at bay and it is time for change. Obviously she will be scheduled for scopes when she is home from college and I discussed with GI the possibility of adding methotrexate to Stelara, or perhaps increasing the frequency of the dose, she gets an injection every 8 weeks. Not sure if insurance company will agree with that plan, but we shall see. Also, in the past 2 weeks Liv has had some abdominal pain, rectal bleeding, and has something going on in her rectum. She said something is protruding, not sure if it's a hemrrhoid, perianal skin tag or fistula/abscess??? She also woke up with a red, swollen lesion on her calf 3 days ago...probably Erythema Nodosum...went to the local ER because she was having difficulty walking on it and thought maybe it was a bug bite that was infected. Well, the ER doc lanced the wound, and there was nothing there! They started her on Keflex...great, with a history of c-diff twice this year! Md's checked her rectum and told her it looked like a scrape with a scab on it, that was probably infected and is now healing???? This is so frustrating for me because she is 5 hours away, I feel so out of control. She will be home in 8 days and has an appointment with her GI.My 20 year old son with CD is also flaring and we had to increase his dose of Remicade this month, also started on a 6 week course of Cipro/Flagyl..he is scheduled for scopes Dec 17th. Needless to say my head is spinning and of course I am always sick with worry between the 2 of them.....interestingly, my 74 year old Mom (also has CD) ate some trail mix 4 days ago and aggravated her stricture...she awoke in the middle of the night to use the bathroom and my Dad found her an hour later lying on the floor moaning in pain and vomiting. I went through her cupboard and cleared out the remaining bags of trail mix, peanuts ect....yup, the fun never ends around here!
I do check in frequently to check on everyone's kids...I'm sorry, I don't always have advice to offer, but I do worry about all of these kids, and I love to hear about positive updates. I am of no use when things are bad here (seems it's been brewing for months)! I continue to pray for all of our children/loved ones and everyone who is suffering from this monster of a disease...please God, a cure!!!!! Kim
11-17-2013, 09:30 AM   #63
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((((HUGS))))) to you and your family, Kim. You are certainly dealing with a lot!

300 ug is a big dose-- what was her previous dose? It may help to know that Thyroxine can be given parenterally iv, im and sc (http://www.ncbi.nlm.nih.gov/pubmed/23569562) when absorption is a problem.

Is there any possibility that now that she's away, she's forgetting some medication at times? (I'm sure she knows how important the medication is, but even with that knowledge, many adults have difficulty taking all their meds.)

Really really hope things improve for you and your family soon!
11-17-2013, 09:42 AM   #64
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Thank You so much xmdmom! Her endo is accusing her of not taking synthroid properly, but when she was home, I personally made sure she took it early in the am, on an empty stomach, with water ect... and her TSH was still climbing,however, she did admit to drinking coffee with her roomate before morning classes...with milk approx 1 hour after synthroid, so maybe that is affecting absorption a little. Endo has switched her over to tirosint, levothyroxine sodium in a gel cap, apparently easier absorbed and used in many people with GI disorders. Her previous dose before the last labs was 250mcg for a TSH of 50..so levels have almost doubled in 4 weeks! I did ask endo about sublingual T4 and even called a local compounding pharmacy. I had to mention the tirosint to the MD, she had never heard of the drug, even though it was on her formulary to electronically prescribe it! So tired of chasing numbers, and once her gut inflammation calms down, worried about her TSH tanking with such a high dose! Kim
11-17-2013, 10:05 AM   #65
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Hope the gel cap is absorbed better. If absorption improves drastically, she could be overtreated so beware of those symptoms (sweating, fast heart beat, feeling hot...).

((To get an idea of usual T4 dose, I saw this article http://www.medscape.com/viewarticle/713972 (Table 3). Premenopausal women need higher doses per body weight than other groups. The average L-T4 dose to suppress TSH in premenopausal women seemed to be 2.98 ug per kg of ideal body weight. That is the average--some people need more and some less.))
11-17-2013, 10:34 AM   #66
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Thanks so much for the link...very interesting! Makes me feel a little better about her dose, maybe her
issue is not entirely related to her CD. Kim
11-17-2013, 02:17 PM   #67
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Kim...holy cow! My heart aches for you. I'm so, so, so sorry to hear about how difficult things have been for you and Liv...and your son...and your mom.

Liv is taking so many medications, it's almost like a symphony for wellness. I can only imagine how difficult it is to determine which aspect is out of whack when things aren't going well.

You are in my prayers. Prayers for peace. Prayers for wisdom and clarity for the doctors. Prayers for good health!

Even if everyone has to eat soup for Thanksgiving...I hope you have a wonderful holiday with the family around one table again!!

xxoo Cheryl
11-17-2013, 04:32 PM   #68
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Thanks Cheryl....So happy to hear that Gus's scopes were clean! I am hoping Liv is just flaring and this is another bump on the already rocky road, lol. Hoping adding methotrexate will boost the Stelara. Not sure what is left for Liv, besides steroids and more surgery at this point. She can't have any of the TNF blockers until she is 5 years cancer free. I hope you have a wonderful, festive and healthy Thanksgiving as well! Looking forward to hearing more good updates on Gus! Kim
11-17-2013, 09:06 PM   #69
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Oh Kim! You are so amazing! Dealing with all you deal with and advocating for Liv the way you do?! Truly an inspiration to us all!
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11-17-2013, 10:29 PM   #70
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Feeling a little sentimental tonight. I've been afraid to really relax and enjoy the wellness Gus has had since he started Stelara. Perhaps it's because he did so well on Remicade and we were really thrown for a loop when it stopped working.

He still has occasional bouts of gut pain, but they come and go pretty quickly. We are trying to figure out what that means. Hoping the pain is related to the G-tube and not the Crohn's.

So, the question of the day is...how do you know when your child is really in remission and when do you let your guard down?

Cheryl
11-18-2013, 08:30 AM   #71
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Is letting our guard down an option?? *LOL*

It is a really good question. I think my criteria would be normal labs, growth, and happiness. I can just look at my son and "know" if things aren't right. If I don't have that bad feeling for several weeks, I might let my guard down as well. He's never been in a good solid remission so I'm not sure really.

Good question though.
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11-18-2013, 09:13 AM   #72
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Depends what kind of remission you are talking about. Clinical remission? Absence of symptoms. Deep remission? When scopes and biopsies confirm mucosal healing.

O has been in a very good remission for a while now. Growing, normal labs, absence of symptoms. Sure there have been things that make me say hmmm but they could also be easily explained away as normal kid stuff.

When do you let your guard down? Funny you should ask. I just read johnnysmom's post about her friends being sick of hearing her. I pray that none of our friends ever have to worry that a cold might land their kids in the hospital or that they can just accept any meds a gp hands them without worrying about its affect on any of the other 4 or 5 that their kid takes.

So to answer your question, I don't think my guard will ever be completely down. Sure I have gone from red alert to blue but reserve the right to switch at a moments notice!
11-18-2013, 01:06 PM   #73
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@crohnsinct...thank you so much for the kind words! Everyone on this board has been inspirational to me as well! Thank You all for listening when I vent, offering such good advice and sharing your knowledge, and just helping me get through some very rough times!
@ Cheryl...I don't know how to let my guard down! It is terrible, I try to relax when things are "quiet", but i am always waiting for the other shoe to drop. The "what if's" and uncertainties of this disease always keep me anxious! Strange, but I find that I am a little more relaxed since Liv has gone away to college...I am so proud of how well she has been managing the disease on her own. Oh, I am still a nervous wreck not having her under my watchful eye, but knowing she can do this without me (including taking a cab to the ER by herself , giving staff a complete history, without me jumping in to fill in the blanks, enduring all noxious and painful procedures without anyone to support her, and than safely making it back to campus after being discahrged at 1am!!)..and, she has been making and keeping all her appts. for injections, labwork, ect....I used to manage it all, and it feels so good when she tells me, "Don't worry Mom, I got this!" Not too shabby for a kid who just turned 18! My son is also leaving in January to do an internship at Disney World, and will be living on his own with his crohn's...ahhhh, so much change! Still no remission for my kids, and I don't think my guard will ever be completely down either... Kim
11-18-2013, 01:48 PM   #74
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@Livilou...Kim, you can tell you've done a great job managing your kids' disease(s) because they are well trained and know what to do when they are on their own. You should be proud of that!


Allowing ourselves to "relax when things are quiet" might just be as good as it gets...and really that's not too bad either. A lot of life can be lived in those quiet times.

11-23-2013, 04:27 AM   #75
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@Livilou - My heart goes out to you Kim… You surely do have a full plate but my goodness, how well you manage that plate! Kudos to you mum, you truly are doing a brilliant job. I hope more than anything that things settle for your two, no doubt you are all well overdue for a break!

@vtfamily - Hey Cheryl… I too don’t think I ever quite let my guard down. My two are in remission…a combination of clinical and objective markers and just seeing them and knowing by they way they act, walk and interact that all is well. Admittedly I do more relaxing now and as each day, week and month passes the thoughts of Crohn’s becomes just a little less all consuming but deep down that spring is still wound ready to thrust me into action at the first sign of trouble! Boing!

Dusty. xxx
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11-23-2013, 02:14 PM   #76
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As much as Gus has had a fabulous year at school...no missed classed, no days in pain at home, and best of all, no hospital days...he has had a couple of pain events in the last two weeks that have been a little concerning.

First a week ago Friday, I found him lying on the ground crying when I picked him up from school. I asked what his pain level was. He said a "10." It must have been pretty bad, because he never says his pain is that high. Usually plays it off as a 5 or 6.

Then yesterday (Friday again), his music teacher said he had a bad episode. Her description: "it looked like Gus was shanked in the side and he dropped to the floor." In class, he dropped to the floor in pain! I asked him what his pain level was and he said...."5," I'm thinking the episode sounded more like a 7 or 8.

These pain episodes come on suddenly and end just as quickly. The pain is located around his g-tube site and the doctor is stumped. All we can do right now is start collecting "data" (duration, severity, frequency, etc) and let him work through it. Helpless mamma is not a role I like.

Thanksgiving break is here and we are all ready for a little down time.

Happy Thanksgiving everyone.
Cheryl VT
11-23-2013, 02:28 PM   #77
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When he has these pains do the spread?

How does the g-tube look? Any discharge?
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11-23-2013, 02:48 PM   #78
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When he has these pains do the spread?

How does the g-tube look? Any discharge?
Belly soft, no discharge, no crust, no redness or irritation...just pain. He said that the pain does radiate out a little, but the g-tube is the focal point. He describe the pain as something sharp and pointy pushing a boulder out through his g-tube.

Checked the g-tube, looks fine and is inflated properly. Length of tubing seems fine, still has a little "wiggle room."

Ideas?
11-23-2013, 05:04 PM   #79
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how about when you flush or draw out fluid?
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11-23-2013, 08:11 PM   #80
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Ok, some theories.

Does he gastritis? Can you ask his doc if maybe some tums or quick acting acid reducer might help? Maybe even a PPI?

Does he have gallbladder issues? I suffered for YEARS (20) with what I believe to be ulcer pains. It was right where my stomach was. Over time the pains that would last minutes to an hour kept lasting longer and longer. One day my hubby had enough and to the ER we went. I told the nurse how the pain starts in the front and goes to the back. She said that's classic gallbladder attack. I had it removed and problem gone.

Can pancreatitis cause these sharp pains? Hopefully someone else might know?

Last but not least, could Crohn's be popping up around the g-tube?
Spooky1 are you around? I believe you had Crohn's pop up around your g-tube?
11-24-2013, 01:35 AM   #81
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MLP - no problems when giving feed. Other than that, there are no flushes or draws.

Farmwife - will investigate your suggestions...anything is possible. As for Crohn's around the g-tube, he had a scope in Oct. GI got a good look all around the stomach and g-tube area, no signs of active disease. Yes, I know that status can change in an instant.

Part of what makes the pain situation difficult is that there doesn't seem to be a food trigger, or stress trigger, or any common trigger. The episodes are so spread out that it is difficult to know for sure if they are connected or separate. These two episodes a week apart are the closest he's had. I've even considered adhesions as a possibility.

The best I can do for now, is remain vigilant and take notes.
Cheryl VT
01-18-2014, 10:45 PM   #82
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We were finally able to relieve Gus' gut pain by venting his G-Tube. Hooray! So simple and easy. Kind of a "duh" moment. When your child is in extreme pain you never think of it as gas that is locked in the stomach!

I am so thankful that he has the G-Tube to make venting a possibility. If he didn't have the G-Tube, the gastritis would still cause the same gas build-up and we wouldn't have any means to relieve the problem.

Gus is six months out since his surgery and almost a year since starting his Stelara treatments. Nothing but GREAT news there! No missed school days, no major issues, no hospital days, no surgeries! This is the best six month period Gus has had in years!!!

Last edited by vtfamily; 01-19-2014 at 12:02 AM. Reason: accuarcy, spelling
01-19-2014, 01:00 AM   #83
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What a brilliant update Cheryl! Thanks so much for posting.

I am so happy for you and your lad and I have everything crossed that this lasts a very, very, very long time!



Dusty. xxx
01-19-2014, 07:20 AM   #84
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We were finally able to relieve Gus' gut pain by venting his G-Tube. Hooray! So simple and easy. Kind of a "duh" moment. When your child is in extreme pain you never think of it as gas that is locked in the stomach!

I am so thankful that he has the G-Tube to make venting a possibility. If he didn't have the G-Tube, the gastritis would still cause the same gas build-up and we wouldn't have any means to relieve the problem.

Gus is six months out since his surgery and almost a year since starting his Stelara treatments. Nothing but GREAT news there! No missed school days, no major issues, no hospital days, no surgeries! This is the best six month period Gus has had in years!!!
I didn't even think about venting. I have to vent Grace's once in awhile. It's a life saver. Does he know how to do it at school? That might help.
I'm so glad he's doing well.
01-19-2014, 09:49 PM   #85
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Cheryl,
So glad you were able to quickly find the problem and so glad he is doing so well. Hope it only continues!!!
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01-19-2014, 10:47 PM   #86
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FarmWife, yes, Gus knows how to do the venting by himself. Just need to get some extra tubes to keep at school and in the car.
01-19-2014, 11:04 PM   #87
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Wonderful update. Hope it continues for a very long time.
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01-25-2014, 09:35 PM   #88
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What's a Crohn's thread without a little poop talk??

Gus had a biggie the other day...probably 2+ days worth. Anyway too big to flush right away, which is the reason I actually had the opportunity to get a good look at it. I noticed something very odd. It looked like he had paper embedded in the poop. A few small "sheets" were sticking out (and up) from the stool. Note: the boy did not eat paper.

Took pictures and sent to GI and asked if I need to get a sample. His response: "Interesting. Not sure what to make of it. Don't keep sample. Do keep eye on."

Did a search and came up with a few likely possibilities: 1) mucosal lining, 2) lymph node, 3) parasite.

It did look like a sheet of tissue, so mucosal lining seems most likely. My imagination takes me in two directions. One is a totally normal shedding of the lining, as most skin cells shed. Two is top layer shedding because lower layer(s) inflamed and under auto-immune attack.

Any thoughts? Any experiences with anything like this? We see the doc in Feb. Will probe him further then!
01-26-2014, 10:29 AM   #89
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Thank you VT for all of this information. Please continue to update on his progress.

As you have responded to Dani's issues, I am watching this closely knowing we are currently out of options approved in Canada and are now looking at other options knowing that surgery isn't an option due to all the locations of the Crohn's in her digestive tract.

May Gus have many more days of energy to enjoy all that life can offer him. :-)
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01-26-2014, 10:36 AM   #90
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I too am watching this thread because it seems we are at the end of Cimzia. (Local doc agrees Mayo Doc won't admit that yet). Thank you for all your updates. I hope this recent discovery turns out to be nothing. Is your son still on total EN thru G tube? My son is scared he'll be doing the ng tube forever. Its in his nose-stomach. Since July 25th He was doing it every night... and Dec 9th went to 24/7. So total of 6 months. Our MRE is scheduled for Feb 1st to see if he's a surgical candidate. (His TI also) But he has had issues in his rectum also. I'm scared.
He vomits with hard cramps... and this weekend he vomited up the tube sat... its sun morning, he's kinda just refusing to put it back in. He'll be 14 Feb 18th and I think he's starting to become stubborn with it all.
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