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Crohn's Disease Forum » Parents of Kids with IBD » Weight percentile, being a teenager, and family stress


 
04-25-2014, 12:08 PM   #91
Clash
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Just reading this site

http://www.feedingtubeawareness.org/...ing-tubes.html

I would say you are dealing with more than an ng tube. NG tubes can be placed by nurses and/or patients/parents but NJ or ND would require docs, radiology or specialized nurses.

Is her inflammation located in her stomach or does she have any other stomach issue gastritis, severe GERD etc? Those are usually the reasons that the NJ or ND tube would be opted for.

You may want to take a browse through the link I posted it has alotbof great info about the different types of tubes pros and cons. Take note that NJ tubes and ND tubes are the third ones discussed, after the NG and G tube(which of course is inserted through small surgery to tummy). Also at the bottom there are links to more in depth info and I believe they have some info on the issue of nausea.

I hope the tube stays in and she doesn't have any more vomiting.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-25-2014, 12:41 PM   #92
SupportiveMom
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No inflammation in stomach but worst part of the crohns in her esophagus is where it connects to the top of the stomach. Her small intestine has healed and shows no more signs of crohns. Her worst parts now are a part of her colon in the middle and her termial illium (and still her esophagus). I'm going to read the link. I appreciate you sending it over!

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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05-14-2014, 06:54 PM   #93
SupportiveMom
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So a quick update... went to the GI today. D gained 10 lbs since she checked into the hospital April 15th! She gained 1/2 of an inch! Now the 10 lbs are probably completely due to prednisone but a 1/2 inch!!! She hasn't grown in 2 years! This is incredible!!!

Now here is the strange part. Looks like we will probably be stopping Humira. We are waiting for the antibody level & drug level blood tests to come back to be sure but the doc thinks there are no antibody issues with Humira, she just thinks D isn't responding to it. If the levels are low we will double up (1 needle a week), but she is doubtful.

So D isn't in remission (not even close still 12x a day), but we drop a drug? I was confused with this, but there are no other biologics approved for kids in Ontario except for trials. The plan is to stay on prednisone (booo!), add Imuran & keep Methotrexate for a few months so Imuran has some time to start working, then drop Methotrexate, or reduce it to a small amount. Still going to continue with the enemas.

Now just crossing my fingers & waiting on our appointment in August at SickKids to continue with our second opinion. I am starting to wonder if the plan is for D to try every IBD medicine. Oh... and no LDN- I tried, not approved...
05-14-2014, 08:01 PM   #94
greypup
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Glad you got some good news - 1/2" is excellent!
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Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
05-14-2014, 08:07 PM   #95
Maya142
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So great to hear that she grew! Doesn't that mean that Humira/Methotrexate are doing something, just not enough? I'd be hesitant to drop something that's even working a little bit since there are so few options for kids.

My daughter stopped Humira about two years ago when she had completely stopped responding to it and then tried it again this January. She did respond to it the second time (but not as well as the first time) so perhaps if your daughter gets worse, you could try it again?

Sending hugs, I hope things turn around soon
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-14-2014, 09:18 PM   #96
SupportiveMom
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I am hesitant to drop something too but the GI thinks the results she is getting isn't from the Humira, or if it is Humira, it is so minimal it isn't worth taking. I don't think D has ever had anything work for her except prednisone, and even that is minimal.

There is another test we will probably take in a few months (I want to have a couple of negative c diff tests first) on her inflammation in her stool. Since I have to pay for it out of pocket I don't want a chance something else could skew the results. I was told if she gets c diff back in the next 6 months we are probably then a candidate for fecal transplant. I think I'd rather hope for no c diff. C diff is almost as bad as crohn's!
05-14-2014, 09:33 PM   #97
Maya142
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Could you wait until your second opinion to drop it?
I think there are studies in the research section that show the the combination of
Remicade + Imuran was better at inducing remission than just Remicade and just Imuran. I wonder if there are similar studies for Humira?
05-15-2014, 11:57 AM   #98
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IF you have to go to a fecal transplant, and I truly hope you don't have recurring c diff., make sure you read the thread that WildBill maintains in research. There are impressive remission stories that crohn's patients are receiving w/the fecal transplants.
05-15-2014, 02:53 PM   #99
SupportiveMom
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I thought about waiting the second opinion, but since that isn't until August now, I'm not sure I want her taking Humira if it shows it is in the blood stream at the right amount but showing no effects of working. I don't understand enough about the medicine adhering to the cell changing the cellular component to understand why I would want to keep/drop something. I am just going by what I can see symptom-wise.

I swear the only time we get c diff is after visiting a hospital. Otherwise it clears up when she gets it. So if we can stay away from the hospital we can stay away from c diff! I am kinda warped in my thinking of kind of wanting c diff just so she could get a fecal transplant in hopes it helps the crohn's...
05-15-2014, 02:55 PM   #100
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I can't wait for fecal transplant to be a real option for crohn's therapy. I understand your thinking.
05-15-2014, 04:55 PM   #101
my little penguin
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How long has she been on humira?
DS it took 6-8 months to really work so much so we were thinking of dropping it in August past year.
Adding Imuran or Mtx does increase the effectiveness of humira as does increasing dosing .
Can you bug sick kids to get her in sooner ??
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05-15-2014, 08:11 PM   #102
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Only hv a minute but wanted to suggest something (if u hvnt already tried this??)... If u can't get sick kids to move up apptmt, if/when u feel she needs to go to ER again, take her to sick kids ER - she'll see their GI then. It's what our ped suggested bfr S was diagnosed and what we did. That is how S was diagnosed and ended up being an outpatient with their GI until his transfer to adult GI. Even if you font want to move her ftom your reg GI, you may end up with your second opinion sooner.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-15-2014, 09:06 PM   #103
SupportiveMom
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D has been n Humira 6 months as of the 22nd. It will now be hard to know if it ever works because she is on prednisone which masks everything. I will wait for the blood results to make a better decision. I do know I don't want her on Humira, Methorexate & Imuran + prednisoone. That is overkill.

Tess, Honestly I want to avoid the hospital. The last 2x she has been in the hospital she has picked up c diff. If she has to go to the ER at this stage it is because something unpredictable happened.

I have done that trick before going to ER @ SickKids. It is the only reason we got seen by a peds GI in 4 months instead of 6. They have seen us for a preliminary already. Our follow up is what is taking so long, almost 5 months since we went in the 1st time. I am glad for the 2nd opinion but if I had to deal with this as a sole source of treatment I would go mad. I see our GI now every month, and in the last 6 weeks have spoken to her directly every week.
06-06-2014, 12:27 PM   #104
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Latest news - Humira levels are right in the blood. After a 30 minute discussion via phone we are deciding to drop the Methotrexate & add Imuran to the Humira (keeping the dosage at bimonthly). While the one less needle a week is fantastic, I am no more hopeful for this treatment than any other we have tried. Ugh... at least after this change we will have tried every drug available for pediatric Crohn's so we don't have to do the wait game...

Either way we are now stuck on prednisone longer as a 'bridge' to changing meds. oh what fun...
06-06-2014, 12:38 PM   #105
Maya142
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Hope this combination works for you! We just added Imuran to Remicade (just started yesterday!).
06-06-2014, 01:45 PM   #106
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Maya I hope it works well for you. Let me know if any side effects pop up.
08-06-2014, 08:16 AM   #107
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Yesterday we were at SickKids for most of the day. Seems we are now changing her diagnosis, AGAIN to Indeterminate Colitis. I know this is part of the purpose of getting a new team of doctors & second opinions but this was not what I was expecting from the visit. It has let me feeling more anxious and uneasy.

Because she responds to meds like she has UC, but her 1st MRE & scopes showed Crohn's they are now unsure. The slides from the previous MRE's are being pulled in storage (glad we got them done at SickKids!) and our new doc says he probably wants a new scope even though the last one was done in January 2014.

The plans are this:
Promethus test for determining UC or CD (not 100% reliable)
Scope
Added Mezavant
Imuran levels tests & possible adjustments to prescription

get off of Prednisone if possible

If UC -
Jpouch surgery
potential drop/change in meds

If CD -
probable colectomy, possible Jpouch surgery (less likely)
keep readjusting meds

D is the best she has ever been after she added Imuran, going 4-7x a day, It doesn't appear to be blood & no more waking up at night (though I think she tweaked her schedule to stay up past midnight when she would normally go and then goes to sleep, not sure on this). Pain is better. She is up to 110 lbs! The thing that is concerning me is her CRP jumped high at the blood tests 2 weeks ago (don't now levels as our regular GI is on vacation) & her iron is very low. New blood work was taken yesterday so there will be some comparison.

I am freaked out about potential surgery. I knew this was a possibility and why we were being moved over to SickKids and getting a 2nd opinion, but hearing it from another doc made me scared. How do I accept this? Is accepting surgery giving up on any chance things could get better?

I am the one in the house that knows all this stuff. Everyone looks to me for answers so trying to make a decision on this with my husband isn't much help. He typically defers the decision to me. Leaving the appointment D gave me her thoughts on this new revelation, but they were mostly how things would look on the outside that people might see (which I would expect to be a concern from a kid, especially a teenage girl). Now waiting for our next appointment the end of this month....
08-06-2014, 09:56 AM   #108
Clash
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I'm choosingg to face C's possible surgery as a tool that may give C the ability to gain weight on his own and possible vertical growth. That is not to say I'm not nervous, I truly am. Our surgery won't involve the creation of a jpouch since he has CD and his CD doesn't involve issues with the colon(excepting the cecum).

I truly hope the tests go well for her and the final decision gives her a full life with long remission! I'm sending hugs your way!
08-06-2014, 10:43 AM   #109
SupportiveMom
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Clash what type of surgery is he facing?

D is now gaining & growing finally. I do like the thought of surgery helping her to maybe reach her potential.
08-06-2014, 11:56 AM   #110
Clash
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I'm just assuming since the consult is next week but I think they'll be suggesting and ileocecal resection.
08-06-2014, 03:48 PM   #111
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How are you going to decide to go forward or not? I wish this was just a decision about my own health. Then only I would live with the consequences of the decision.
08-06-2014, 05:30 PM   #112
Maya142
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Didn't D have disease in her esophagus and terminal ileum? Just wondering how that could be UC and not Crohn's?
Sending HUGS
08-06-2014, 05:50 PM   #113
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Yup that is what I know, esophagus, terminal illium throughout her colon. I don't know how that equals UC.

The 1st scope was when she was inflamed everywhere as she went 7 months without a diagnosis losing weight etc. The 1st MRE was after she started Remicade and looked better than the scope but still was elsewhere. I think the doc is hoping it wasn't actually CD but the lack of treatment. Her last scope in January shows no inflamation anywhere except her Colon.

She responds better to UC meds than CD meds for those that it is more prescribed for one or the other.

I can't imagine coming back with a UC diagnosis.
08-28-2014, 07:02 AM   #114
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We had our appointment 2 days ago at the hospital to confirm what has been the obvious, D has crohns. I know she was being thorough when suggesting maybe not crohns at our 1st visit. She has it in her small bowel, or at least did in Nov. Of 2012. He last MRE didn't show it and she is guessing it healed at that time. As they say... pathology doesn't lie.

This makes surgery more problematic. We have been given 2 last options before surgery: Stelara (which is still under trial here) & some type of 4 antibiotic cocktail (docs words not mine!) That contains Flagyl, Amoxicillian, and 2 others. We started the approval for Stelara yesterday in hopes to do the 1st dosage next week. The cocktail is a last resort due to d's allergy to penicillin. They will find a replacement for it but it loses its effectiveness somewhat with the replacement. Stelara should show a change in 2 weeks (by 2nd dosage). If not we will give it a month and then move to antibiotics.

In the next 6 weeks we are scheduling a pill cam to check out the small bowel and see what areas we would cut if surgery happens. She also will get another colonoscopy & maybe MRE. That will make her 3rd in 2 years. We will have a surgery consult mid october to explain everything. Doc said it is highly likely she will have a permanent ostomy.

We both cried when the doc said that. I never wished more that she has UC so she could have a j pouch instead. I know this crushed her. She never shows her mid drift except for swimming but she got really down about it. Another tough fall & winter is ahead I think. One positive, we drop 1 med, mezevant, which did nothing but bring in some headaches I think. Still waiting on confirmation on if we do Humira & Stelara or we also drop Humira.
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