Crohn's Disease Forum » Parents of Kids with IBD » Newbie here, son has first Remicade apt on Thursday

09-01-2014, 06:45 PM   #1
Cordelia525's Avatar
Join Date: Sep 2014
Newbie here, son has first Remicade apt on Thursday

Hi -
So glad I found this forum. My head is spinning with the diagnosis and the treatment options.

My 10 year old presented with several "extra intestinal" symptoms, without the typical Crohn's symptoms, except weight loss. He had an unexplained fever for about five weeks, starting at 99.5, then creeping up to 100.5 then staying at 101. And he had erythma nodosum on his legs. I was convinced he had some sort of tick bite or infection. When I brought him to the doctor and they weighed him was when I discovered he lost about 10% of his body weight. Flash forward to the endoscopy and colonoscopy and it is confirmed Crohn's. So I am a Crohnie mom but I'm still having trouble wrapping my brain around this because he doesn't have the GI symptoms.

Any words of wisdom for a newbie Crohnie mom with a spinning head?
09-01-2014, 06:57 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

Sorry to hear your son has crohns. We have great parents here.

Try and take it a day at a time. There is a grieving process you need to go through. Learn as much as you can - knowledge is power.

I was diagnosed young. Their are times when I've had to make adjustments but I've done everything I've wanted too. Sending you both my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

09-01-2014, 07:25 PM   #3
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Location: Michigan

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HI and a lovely welcome. Im sorry you find your way here.
My 5 yr old was a lot like your son.
She never had horrible GI problems at first and still not as bad as some.
She does have a few EIMs and as for years.
My dd also is having her first round of EN spots on her legs. It looks dreadful.
My baby also as JIA (arthritis) its real bad right now
but hopefully with the start of Remicade
she will be back to driving us nuts sooner than later.

Please know theirs a grieving period for everyone.
No its not cancer but it is a chronic life long battle that will not only test their limits but yours as well.
The good news is our kids are tough and will prevail because we parents are just to stubborn to let anything else happen.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
09-01-2014, 08:16 PM   #4
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CrohnsKidMom's Avatar
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Location: (Canada), Nova Scotia

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Welcome to the forum, but so sorry to hear about your son. My son is 9, and he was dx'd last yr at the age of 8. It is very difficult in the beginning. You feel like you've been thrown into something that you weren't prepared for. But your head will soon stop spinning and you will find a new normal. Do lots of reading, but that can get overwhelming, so be sure to give yourself a break from it. And feel free to post your questions here. This forum has been a wealth of knowledge and support to me. Take care. I hope your son responds to treatment and gets back on the the road to feeling well.
09-01-2014, 08:19 PM   #5
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Welcome and I'm sorry you have to be here. I have no words of wisdom as I am in the same boat with a new diagnosis for my own son. I was stuck in the grief stage through much of the waiting period, but he just completed his first Remi infusion last week and we are moving on.

You will find the kindest most knowledgable folks here to answer any question. Though I don't have a lot of answers I can lend an ear any time you need.
14 yr old son dx Crohn's 7/14

Severe inflam. in small intestine
Delayed growth & puberty, malnourished, anemic
Remicade & Methotrexate 8/14
Vit D, folic acid, supplemental EN
38 cm of distal ilium removed 7/15
09-01-2014, 08:33 PM   #6
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Join Date: Jun 2013
Location: Wallingford, Connecticut
Hi! Just sending a note of support and giving you advice of taking it one day at a time. You have come to the right place for support. There are so many wonderful knowledgable people on the forum and honestly - it is comforting to have others who know what you are going through.

Good luck with the Remicade on Thursday. Many people on the forum have have great success with remicade. My son had his first treatment a month ago (also 10 with no GI symptoms but he had not been growing). I hope your son has positive results too!
09-01-2014, 09:32 PM   #7
my little penguin
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Sorry you had to find is but very glad you are here...
DS was dx about three years ago at the age of 7.
No diarrhea just constipation , rectal prolapse, abdominal pain and slow weight loss despite increasing calories.
It took us eight months to scope and a year to move up to remicade- did all the lower level drugs first
Remicade was liquid gold it was the only med that gave my kiddo a normal life ( almost ) and forget he was sick.
He had to switch to humira after eight months due to allergic rxns but DS is a very allergic kiddo to begin with.
He was recently dx with juvenike spondylarthritis associated with Ibd in his hands .
That really needs a shorter name
Remicade is scary at first but once it works you never want to change.

Infusions were my sons favorite - warm blankets , his own tv to watch movies , snacks all day plus the day off school with his dad.

Humira is less fun - it burns a lot and I get to give the injections .

Remicade typically works quickly it took about 3 infusions or a little over 8 weeks to get to a really good spot.
DS - -Crohn's -Stelara -mtx
09-01-2014, 11:42 PM   #8
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Welcome, Cordelia...

I'm going to jump to the Remicade advice since that is coming up for you. The day before, have him drink lots and lots of fluids to plump up his veins for an easier poke. Some centers offer Elma (numbing) creme for the skin so the poke isn't as bad. Our hospital offers jtips which are awesome. I've heard other talk of a butterfly needle, but have to admit I don't know what that is.

Pack up a bag of goodies to keep you busy during the infusion. You'll be there around four hours. For the first infusion, the nurse will hover a lot or might not even leave the room. They're watching for allergic reactions. Unlikely, but possible, so don't be alarmed if they stick around. My son is given a Tylenol and Benedryl as a pre-med. different places do things differently, so just a heads up.

Centers vary, but ours offers lunch, video games, TV and movies. They also have a snack cabinet. Pack what you need to stay busy, well fed and hydrated.

After, he may be sleepy or have other symptoms. Don't hesitate to call the infusion center if something doesn't seem right to you. My son took to Remicade very well and very quickly. Just after his third infusion he was in clinical remission and it's been pretty amazing ever since.

I'm sorry you've had to join our group, but there are a lot of wonderful parents here, many who've walked in the shoes. We get it, we understand, and we're here for you.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-02-2014, 02:56 AM   #9
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Hi and welcome. Sorry to hear about your sons diagnosis. This forum has been the best thing I found. I have found out more here and been more informed when talking to the GI. The GI nurse quite enjoys our conversations and learns new things from me sometimes. We didn't have typical Crohns symptoms either, just sore tummies that went away completely for weeks - no weight loss, no diarrhea, no nausea, so it came as a shock to us too. It is difficult at the start, you grieve for the childhood they won't have - the one without all the hospital visits, etc. However, life keeps going, and this becomes the new normal. Children adapt so quickly sometimes. My son actually likes hospitals and enjoys blood tests now - strange I know . I suppose his brain has adapted to make it pleasant for him. Good luck for the Remicade
09-02-2014, 06:08 AM   #10
Senior Member
I'm sorry you are dealing with this new diagnosis, but this is an awesome place to seek advice, comfort, information, or just to vent. My daughter does not have IBD but does have Crohn's-like symptoms so I come here often. People here understand when it seems no one else does.

Like Sascot's son, my daughter enjoys seeing her doctors and has been looking forward to her infusion later today. Our hospital is very peaceful and not intimidating which was just one of the many reasons we chose to go there. Finding the right doctors and hospital is so important because the wrong fit can make things more complicated than they need to be.

Good luck with the Remicade! Hope it is his "magic potion"!
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
09-02-2014, 07:46 AM   #11
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Oh, I forgot to mention that after my son's first Remicade infusion last week he rested for about 30 minutes after we got home then went swimming and jumped on the trampoline for the rest of the afternoon! I'm not sure if that is normal, but he had almost no side effects after his first time.
09-02-2014, 09:26 AM   #12
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My son will be going for his 7th infusion tomorrow. He actually looks forward to them because he feels so much better after, full of energy, hungry and he can for the most part forget about Crohn's for the next 8 weeks.
I know a lot of people are tired the day of and the next day after infusion but my son is bouncing off the walls because he feels so good. We get about 1/2 way through the infusion before he says he is starving and so eats a huge meal right after. We bring snacks, he plays games on a tablet or watches movies, sometimes he even does homework (although not very often). He has his infusions at his GI office and they have DVD players and Ipads for infusions.
For what it's worth, my son's symptoms have consisted of lack of growth and eczema until he gets really bad then we'll have stomach pains in the morning and fatigue.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-02-2014, 12:21 PM   #13
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Maya142's Avatar
Hi and welcome!
My daughter is also on Remicade. Like most of the kids here, she looks forward to her infusions, partially because she likes the day off from school (gets to watch tv and read) and also because it makes her feel better. My daughter is usually very tired the day after the infusion but that seems to be quite individual - some kids are completely fine.

There are quite a few parents on here with kids who don't have GI symptoms. My daughter initially had stomach pain when she was diagnosed but really no other symptoms - no diarrhea, bleeding etc.

The best advice someone gave to me when my daughter was diagnosed, is that this is "a marathon, not a sprint". Some kids do get better very quickly, while others take a long time. Hang in there!
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
09-02-2014, 12:30 PM   #14
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Location: Chicago, Illinois

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My son also gets a burst of energy from his remicade infusion. He gets to order off the hospital menu, and sometimes I am embarrassed to call in the large food request, but hey, if he wants to eat, let him!

Good luck and I hope the Remicade does the trick!
Son diagnosed at age 12, December 2014

Current meds: Remicade every 8 weeks (May 2014)
Past meds: Prednisone, 6MP and 3000 mg Pentasa

Crohn's Disease Forum » Parents of Kids with IBD » Newbie here, son has first Remicade apt on Thursday
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