Newbie Intro/14y/o daughter w/Crohn's

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

imaboveitall

imaboveitall

Joined
Feb 9, 2012
Messages
968
Hello all,
I've just joined as my 14y/o daughter w/Crohn's is about to start Humira tomorrow.
She was dx in Sept 2008 and has been on nighttime formula feeds via NG ever since, (she places the tube each night and removes it upon awaking), which has allowed her 3.5 med free years and normal growth/development.

Now due to worsening labs/extreme malaise which has led her to require homebound instruction since Oct, we are reluctantly about to start a 3mo trial of Humira.
We're not happy about it. If not desperate for her to have her active life back, we wouldn't do it.
Any mothers with chlidren on Humira?

Thanks in advance!

Julie
 
Hi Julie,

I'm so sorry to hear that your daughter has not been doing well. I can certainly understand your fears in beginning a new medication but there are many members here who have done very well with Humira.

My son has also done EN feeds overnight since May. So far, it seems to be keeping the Crohn's under control, however, there is still some inflammation, so I'm not sure when we'll have to consider medications. But I will also find it difficult to take that step. :(

I hope the Humira works well for your daughter and that she can get back to her usual self soon!

:)
 
Welcome Julie!
I am so glad to hear EN worked as long as it did for you...so sorry that things have changed but 3 years is wonderful!
We tried EN for 1 month with an indwelling ng tube...it came out after 1 month and I didn't feel it was making a fantastic difference, nor did I have the heart to replace it. It is scary each time we start a new treatment...the risks seem so much more real when you are making a decision for your little one, no matter how old!

We start Humira tomorrow also...good luck!

I think we are getting three shots at once this time...I have heard to ice the area before and have heard differing accounts on whether the leg or the belly is more painful. I have also heard to leave the medication out for 15 minutes to let it warm a bit. hth
 
Hi and welcome. My son is the same age and has been sick since 2008 too - but his diagnosis is still uncertain. A rheumatologist is willing to start a trial of Humira this month ... but his GI is not as enthusiatic since he still is not convinced Danny has Crohn's. I hope this helps your daughter. Please keep us posted.
 
Thanks for the replies!

Tesscorm, V did have inflammation present for the entire 3.5 years. She just was able to function normally/grow/develop DESPITE active Crohn's. Sadly, the feeds haven't been able to entirely eliminate inflammation, and as of Oct, are no longer enough to give her QOL.

Izzi'sMom, you must be as scared as I am. Your girl is a beauty, by the way. I resisted drugs for these 3.5 yrs, and am absolutely terrified of the TNF blockers.

V's disease activity has always been restricted to her TI, so she has NO gut symptoms.
She just feels like a dishrag, and has brain fog.

I'm so afraid Humira will really damage her. But she's had zero QOL since October, so it's a desperation move.

HOW do I get a signature to appear on the bottom of posts?!? I don't want to have to write it out every time.Thanks


Violet age 14
Dx Crohn's 09/08
Tx: Vital Jr. 1200cals nightly via NG tube
250mg elemental iron per day
VitD3 1000iu per day
cyproheptadine 8mg per day for dysautonomia
Starting Humira 02/10/12
 
Hey Julie, I know I'm not a parent but I hope I can help cause I really do understand how scary Humira can seem, as I was in the same fearful position. I'm a bit older than your daughter but I started Humira when I was 18 and have been on it a little over a year. I hope I can offer you a little reassurance at least...
It's given me remission and I feel great...I'm living life as a normal girl. I don't have any side effects at all. While some other, "less scary" treatments actually gave me nausea, headache, etc, Humira hasn't given me a single one! Also it's a relatively easy dosing schedule, because except for 2 nights a month, you don't have to remember to take your medicine.
I really feel for her, the fatigue and pain can put you in such a low place. I really hope Humira does the trick for your daughter. Just remember that if it allows her to live life how she deserves it's worth it! :hug:
 
Last edited:
Thanks Emily, that's what we're hoping, that she gets her life back and fast.
Did it work quickly for you? I'm unwilling to keep her on it beyond a month unless we see results, then after 3mo I'm going to d/c it and see if she maintains.
Did you have extreme fatigue, and did that disappear quickly, or other symptoms went first and fatigue hung around?
Extreme weakness is her primary symptom.
 
Last edited:
It took me about a month or two to really work well, I'd give it time to allow it to work, since it's easy to want to give up without instant results. I've always had a lot of fatigue which went hand in hand with how my digestive tract was feeling. Both of these problems went away around the same time, although I still have a little fatigue due to various vitamin deficiencies and whatnot. I'd definitely recommend giving it at least 2 months, I know that can be a long time but maybe the inflammation can be controlled in the meantime with steroids (I did this with Entocort)?

Also about discontinuing after 3 months to see if she'll keep feeling better is a really bad idea in my opinion. Humira is a long term drug, and if it works, you should stick with it. Of course if it isn't working after giving it ample time, try something else, but if it does work you should definitely not discontinue it!
 
Welcome!

My 10-year son with Crohn's just started Humira after Remicade failed. These medicines are scary to give to our kids, but they are also amazing. It's always worth a try. Then decide the benefit vs any side effects. My son had more energy the next day, but I've heard it can take a few weeks. The loading dose earlier this week was tough (4x what will be his normal dose). He doesn't handle pain well and it really hurt. We used numbing cream, but I also recommend ice packs. The epipens made a popping sound that also startled him. We'll see how the next dose goes (2x usual). I'm nervous about learning to give it, though I've heard kids can quickly learn to do it themselves. Good luck!
 
Emily, thank you, I know stopping it sounds counterintuitive. What I'm hoping is, it will get things under control and then if d/c'd, the "effect" will last.
That may be delusional thinking driven by terror.

Sandoval, so your boy just started...but did feel better straightaway. That's encouraging. Re: pens, V looked up both the pens and the syringes on youtube and she didn't like the pen idea at all, partially due to the sound. She requested syringes; she feels she wants to control the rate the drug goes in. Maybe your boy would like syringes better.
I wonder what factors affect who feels better right away and who takes longer, as in, is it disease location, severity, immune system individuality, length of time since dx...I guess no one knows.
 
Hi Julie and :welcome:

I'm so sorry to hear about V but it is good to hear she was able to keep the status quo going with EN for so long! :)

I don't have any experience at my end with the biologics, both of my children are on immunosuppressives. I think all the questions you raise regarding response to treatment are valid and in my own mind I think the two that immediately spring to mind are location and severity plus if there are any undetected complications.

The decision to commence these drugs is the most difficult of decisions for a parent to face. I do think the angle from which a person is faced with it makes a difference, I don't say it is easier but more the ways the fears are driven. You have come from a background of treatment response and thankfully one that has little side effects so I can fully appreciate your hesitation at what may lay ahead. I came from a different angle and in some ways I think it was easier for me to make the decisions I wish I never had to.

Please have a read through this...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I wish you and your daughter all the luck in the world with the decisions and treatments. I hope she responds quickly and is again living life to the full. Take it each day at a time, breathe, change your mind as many times as you like about everything! and know we are here for you 24/7.

Welcome aboard!

Dusty. xxx
 
Dusty, thanks and yes, the condition in which the kid is when considering dangerous drugs does affect the view/perspective of one's fears. At dx, she was in such bad shape, had extreme weight loss (went from 78 to 59lbs in two months) and was at death's door so "scary" drugs would've seemed less "scary" at that time, when weighed against her precarious state.
But after 3 years of great global health, normal living and most confounding, ZERO GI symptoms to this day, it just "feels" wrong to subject what "looks" like a healthy kid to these drugs, even though she lives now like an invalid.
I said to her GI, if she were anorexic and cachectic like she was at dx, I'd feel better.
He understood what I meant by that weird comment. She's still on formula feeds, so she looks great and is a big ox. Just a big ox who needs a fainting couch in every room.

Thanks for the welcome!
 
Hey Julie,

Are you going into User CP...

http://www.crohnsforum.com/usercp.php

Then down to Settings and Options in the left hand menu and to Edit Signature.

Don't forget to save when you finish editing.

Dusty. :)

PS. As a space saving measure on the forum, your signature will only appear on the first post you make on a page in a thread.
 
Thanks again...now it is showing up. I didn't realize it only showed up on the first post per thread.

I don't think I shall sleep tonight...Humira loading dose at 9a.m. V isn't at all worried, she's asleep.
 
While the humira data is similar at weeks 4, 26, and 56, the remission rate rises between 4 and 26 weeks. I will be giving it a few months at least to work.
I know these drugs can be scary. I'm worried, too, though about the possibiity of colon cancer from chronic colon inflammation. So I guess we choose whatever scares us less. I am terrified of cancer...and would like to keep her colon as long as possible (haha no pun intended)
My daghter is relatively healthy looking...the steroids keep her looking healthy, she flares at times but has kept a relatively satable weight the past few months (unusual for her...she was my steady gainer 95th percentile kiddo). I sometimes wonder if I should leave well enough alone. But then she lays on. The floor in pain and I decide to try therapies until we find something that works for her.
Tough decisions, they are. :( super personal, also...what works for one doesn't qwork for everyone else 8 hrs till our humira...I'll be thinking of you at 9am!.
 
Dusty,yep, she has those done frequently. Iron is always low, despite being on a HUGE dose of ferrous sulfate, B12 is always normal. Not low normal, but upper 50% of normal range. Vit D normal, we just give that prophylactically.

Thanks, IzzisMom. I'll be watching your thread too. Yes, it took months of her not having a life for me to choose to add this drug to her regimen. If it works, it'll feel worth it. I want instant gratification, like her back to normal TOMORROW by 10am.
 
I think once you posted a certain number of time, the signature will start to show up on all of your replies. (funny thing ... I do notsee my sig on this reply ... suppose it will come)
 
> I wonder what factors affect who feels better right away and who takes longer, as in, is it disease location, severity, immune system individuality, length of time since dx...I guess no one knows.

It's the biggest mystery to me, how individualized IBD is! Alex really has no pain, no GI symptoms, mainly just fatigue. We only dx'ed after surgery for a fistula. Outwardly, he looks small, but healthy. We didn't see the weight loss, lack of growth for a year. Bloodwork, inside exams tell the real story.

He was only beginning to develop antibodies to Remicade and we got the first Humira dose in just before his next infusion was due, so maybe that's why it worked quickly? We'll see how his labs look later this month to know for sure.

Jennifer
 
OMG, Sandoval, your son has NO GUT sx either?
You are the first person I've heard say that. Violet's gut works GREAT. But she feels like a dishrag. Everyone thinks this is bizarre. Her GI says it is because her disease activity is confined to the TI.
 
Yep, he has a normal bm once/day. Other than over this past new years', no tummy pain or nausea. His inflammation is terminal ileum too. He had a fistula each January, the first led to our dx after surgery. The 2nd healed with IV antibiotics. He doesn't feel that bad, but his body doesn't absorb what he needs. He has other extraintestinal symptoms though: headaches, skin rash, canker sores, finger and toenail clubbing.
 
Wow. While I realize in theory, those w/TI disease often have no GI sx, you're the first "case" besides V's I've personally run across.
V's extraintestinal stuff is: kidney stone (as of last Sat), chronic intractable anemia, mouth sores occasionally. And now since Oct, extreme fatigue.
But she can eat ANYthing and does. Her doc never gave her any dietary restrictions, even at dx. And she produces one perfect stool per day.

Sounds like your guy is also at the beginning of his Humira journey. V's shall be three months in duration unless she gets dramatic result. I hope both of ours do get that , but I have little faith in it. I'm more scared than anything else.
 
Yes, extreme fatigue too. He was anemic for awhile too. Our doctor has him on low-fiber, lactose-free diet, mainly to avoid obstructions and irritations, which goes ok - we could do better. He's the pickiest eater. I hope as he matures, he'll make some better choices for himself, it's not a battle I can win at the moment.

Any reaction or improvement yet from the Humira? Alex got prickly red rashes on each thigh that are itchy, but not painful. He's still feeling good. With better energy comes a better mood, the whole house is chatty/laughing more. crazy. His quick reaction could be in part because he wasn't nearly so bad yet as he was before starting Remicade, I think it was still helping a little anyway. And it took about a week to notice the difference with Remicade. We'll know for certain with bloodwork the end of the month. I hate to wait... :)
 
Sweet that he feels better already.
V. is still a dishrag. A big healthy looking dishrag.

I want results like now. I'm sure you can relate.
 
The prickly red rash seems very common. EJ's has been pretty much eliminated by taking Benadryl an hour before and the morning after injections. I hope Alex continues to improve!!
 
Jennifer, my son was always a picky eater (still is!:ybatty:) and I always worried about his nutrient intake but, years ago I found a cookbook that hid all kinds of veggies in regular foods - spinach in brownies, squash in mac & cheese. I believe it was called Deceptively Delicious by ??? Seinfeld (Jerry Seinfeld's wife). The recipes were quite good. In all honesty, it didn't work great for my son - he ate most of it but it was all just 'okay' to him (the brownies were fantastic, but even those, he thought were just 'okay') but my daughter loved every recipe I made (too bad she wasn't the problem eater! :lol:) :)
 
V. didn't get an injection site rash; in fact she's had ZERO reactions, good or bad. If not for the pain when injecting, I'd think she got saline.

Re: eating habits, V craves what she "needs", even when that's a food she normally eschews. For ex, the day she passed the kidney stone, she ate an entire big box of blueberries, another of raspberries, and bananas. She normally NEVER eats fruit, doesn't like blueberries or bananas.
She eats a LOT in general and sometimes bizarre combinations. I've heard popcorn is forbidden by many docs; she eats it in quantity and has no issues. In her case, food seems to not be an influence on gut behavior.
 
On another thread, there was a discussion re kids who, prior to diagnosis, seemed to eat foods that accommodated vulnerable GI issues. From the time he began to eat, Stephen always preferred what I now know is a low residue, low fibre diet. Most of what he liked was beige or white - white bread, waffles, plain cereals, rice, pasta, chicken/fish over beef, eggs, etc. Fruits and veggies were a constant battle. And, he hasn't changed much! While waiting for his colonoscopy, the GI put him on a low residue diet - they were most of his favourite foods! :lol:

So I do believe that many kids do instinctively move towards foods that sit well with them (or for nutrients their bodies call for). My daughter has always eaten almost everything but when she was much younger, didn't like watermelon, all melons or corn. I always found this odd as she would eat the most exotic foods??? But, allergy tests revealed that she had a mild allergy to these foods and the allergist suggested that that may be the reason that she shied away from them.

Stephen has few restrictions on his diet, however, the dietitien did warn us to stay away from seeds, nuts, popcorn and limit veggie/fruit skins. This hasn't been difficult but unfortunate as two of the few fruits Stephen actually liked were apples and blackberries. Haven't given him any blackberries and apples only when peeled. Although it has forced him to make an effort in trying new fruits/veggies. :)
 
Oh, by the way, the dietitien explained that the limitation with the seeds, nuts, popcorn was more a concern in that if there was swelling, strictures, these foods were more likely to bulk up and contribute to an obstruction.
 
Interesting.
And yes, some are so in tune with their bodies they do this instinctively.
She will also "tangent" eat, i.e., eat nothing but say carbs for days and then nothing but red meat; eat three big bowls of romaine lettuce and then not touch it again for a month.
The lack of consistency is due to craving what she needs, nutrient wise, at the given moment, I think.
There is absolutely NO pattern to her eating habits except for avoiding fruits/veg most of the time.
 
To try and make you feel a bit more at ease about these meds, I just wanted to share that my child has been on Remicade, on and off for 14 years - and has never had any ill effect from the drug. We would also pre-medicate with Zantac, Zyrtec, Tylenol, and iv benedryl, and we never had a bad reaction or any long term ill effect health wise. I know that unfortunately everyone responds differently to different meds, and what works for one, might not for another.
 
Last edited:

Similar threads

C
Our SCD Journey
Replies
35
Views
8K
crohnsinct
C
dulouzz
Daughter Awaiting Mom's Crohn's Diagnosis
Replies
3
Views
1K
dulouzz
dulouzz
P
Newbie here, but not to Crohn's 30+ years...
Replies
4
Views
1K
Eridon2002
Eridon2002
C
12 Y/O daughter with Crohn’s. Remicade failing?
Replies
9
Views
2K
Farmwife
Farmwife
K
Grand-daughter with difficult case; Crohns and gastroparesis
Replies
11
Views
2K
kimmidwife
kimmidwife

Latest posts

Back
Top