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03-02-2015, 03:09 PM   #301
lenny
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What are the odds that Remicade will work? And for how long??
03-02-2015, 03:29 PM   #302
crohnsinct
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Loads of studies stating the effectiveness. I can't recall what percentage they all hover around and quite honestly depending on when the study was done the percentage changes but it worked here and for three yeas and running!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-02-2015, 08:30 PM   #303
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That sounds great! Exactly what I am finding...
There is a lot of information out there on anti inflammatory diets as most diseases start because of inflammation somewhere in the body. However, I used Clean Cuisine (an 8 week anti inflammatory diet) written by Ivy and Dr. Andy Larson. They also have a website and facebook page. They are wonderful and encouraging people and take time to personally respond to questions about the diet etc. She has MS and has been able to control it in large part through diet. Her neurologist suggested this way of eating.

O's doc was adamant that diet wouldn't make a difference but now he can totally tell when she is off her diet. Nothing really bad happens but I imagine some values move a little and he calls us out on it. He does think that diet combined with meds makes for a great treatment and says that researchers are working on identifying types of Crohns and being able to customize diets for each type.

It takes a lot of patience and persistence but it is worth it when you see the payoff.
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"One man's food is another man's poison."
03-02-2015, 08:46 PM   #304
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I do not know what I am doing with this whole reply thing...there are so many threads! So I am posting a reply/update about my13 year old with Crohn's. First of all, YES, I think it makes a difference how old a kid is in how they deal with Crohn's. My son is so embarrassed by things that it definitely factors into the equation. His "role" in school, his identity, perse, is wrapped up in being an excellent student...so going to school without enough energy to be that person is off the table at this point in time. As for exhaustion and figuring out what is normal, and what is Crohn's, I can comment on that. My middle son is fit as a fiddle and here is what is going on with him: He stays up too late and then has trouble getting up in the morning. It seems to be his natural "schedule". He is totally "out of it" some days...especially in the morning when he is waking up. When he sleeps in, not being able to get up despite his alarm clock, he usually seems to have grown! But he can put in a full day, and he can do his schoolwork, and he can exercise without a problem. Maybe a complaint, but not a problem. He has been tested and he is in excellent health.
As for my 13 yr old... We started him on Remicade a week ago. He gets his next infusion this week. He just was getting sicker and sicker as we went from Fall to Winter. No blood in his stool that we saw, just fatigue, cramps, reflux, headaches, etc. We had his blood tested and his inflammation and Crohn's numbers were up. So I threw in the towel. The kid has been SO good about his diet, but either we haven't rid of the one thing that is causing the problem, or who knows what, but we decided it was time to try Remicade. This has been too much stress for one little boy, and seeing as stress make Crohn's worse, we saw that we were working against ourselves. I am quite hopeful that Remicade will be the key to his return to good health. We are continuing on the no corn, no wheat, organic, low carb diet, and other suggestions of the Blood Type Diet System...but we are going to allow in some foods, like some cheese every once in a while, if we can get him feeling well again on the Remicade.
03-02-2015, 09:06 PM   #305
Jmrogers4
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I hope it works wonders for him SAHM. I have been in those shoes and can only say I'm glad I threw in the towel this last year and just a bit have been a different world. He is happy, healthy and the energy is there. Sure he stays up too late on occasion and pays for it the next day but he is not falling asleep in class. The fatigue is no more than any other teenager. Growth has been phenomenal (7" since starting remicade Jan. 2014) weight has gone from 4% to 50%.
I totally get it you get to the point where you just want them to feel better and the big meds don't seem as scary if they will give you your child back.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-02-2015, 09:21 PM   #306
my little penguin
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I think it has a good success rate .
On here alone I know only two kids that it didn't work for .
Otherwise nothing but happy success stories
It worked wonders for DS
We only switched to Humira after an allergic reaction( DS is allergic to lots of drugs and everything in between)
Since being on biologics SAHM DS has gained 36 lbs and grown 8.5 inches
Granted he is only 11
He is back at the 70. & 75% for things again
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DS - -Crohn's -Stelara -mtx-IVIG
03-03-2015, 08:24 AM   #307
CarolinAlaska
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SAHM, we will likely be doing the same (going to a biologic), and I have a lot of hope that we'll finally see the same results as so many others.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-03-2015, 11:13 AM   #308
araceli
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I hope Remicade works for both of you kids (CarolinAlaska, SAHM). 2 years plus and working wonders for my Daughter.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-03-2015, 08:32 PM   #309
CarolinAlaska
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I heard from the GI office today. Scopes are scheduled for the 18th.
03-03-2015, 08:45 PM   #310
SupportiveMom
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Glad you are getting a scope so soon Carol
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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
ibdsupportivmom.wordpress.com ☆
03-09-2015, 01:16 PM   #311
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Hello everyone! We've been a bit busy these last few months with a new GI for our 12 year old son. The first GI, the one who diagnosed him with Crohns just wasn't as I'm sorry to say smart or informative as the one our son has now........ Even though he is just as young or maybe be even younger then the last doctor he's more understanding, listens, remembers and yes takes our constructive impute with stride (learning as he goes). Unlike his young nurse who is still taking my calm, stern impute as hate rather then help. I can see it she'll come around. I tell her things I discover in hopes she won't tell the next parent the same and find they may not be as friendly as I.

But after the Yoyo effect of deciding if our son should or should not be on Remicde to bring him to remission. We finally decided and he will be starting as soon as his pre testing comes back. I am scared, my husband (ie. who is Feels Great on here) is too..............for our son, he hasn't said much. Like most things it'll be in the car on our way there or maybe even right when we get there.

I do wish he knew other kids his age with Crohns in our area but we don't know of any. Also my son is getting infused at an infusion center in our town instead of at his GI's office 1 1/2 hours away. Which is great but they told me even though they do have kids come in they've never had one as young as he is. It's an infusion center in a bone and joint center. It might be fine though? He connects well with older people. He will have his laptop and tablet to keep him busy. Also school work!!!
03-09-2015, 01:27 PM   #312
Jmrogers4
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Good luck! Hope it works wonders for him. It has been a miracle drug for us after we finally made the decision a little over a year ago.
Jack has his done in the GI office but he is in a room by himself and just has his laptop to keep him busy. It would be nice if he did his homework then but he looks at as if he has to be there doing that then he shouldn't have to do homework. He looks at it as free time.
We knew of no other kids in our area with Crohn's until he went to Camp Oasis and has met several kids who he keeps in regular contact with.
03-09-2015, 01:55 PM   #313
crohnsinct
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Good Luck! Remicade has been great for my daughter.

She has her infusions at the GI's office with up to two other kids in the room and they rarely talk to each other. They either have their noses in their books or their phones or head sets on. I think at the center you describe he will probably be spoiled. The little prince. Everyone will think he is adorable and feel bad and dote on him. Tell him to eat it up while he can!
03-09-2015, 07:24 PM   #314
kimmidwife
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Good luck! A lot of doctors want the infusions done in the hospital or an infusion center. It is not uncommon. Keep us posted!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-10-2015, 04:19 PM   #315
CarolinAlaska
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We will likely be following suit. We live 2.5 hours from our GI. I was worried about the logistics. Hopefully Jaedyn can get her infusions locally and not have to miss any school.
03-10-2015, 04:51 PM   #316
my little penguin
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Carol regardless of where the infusions are located they take at least 4 hours
Without travel so school is generally missed infusion day
03-10-2015, 05:21 PM   #317
Maya142
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Yes, definitely have to miss at least half a day of school, if not the whole day. My girls loved the day off! It was a chance to relax, nap and watch TV! The nurses also really spoil the kids at pediatric infusion centers/hospitals.
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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
03-10-2015, 05:24 PM   #318
crohnsinct
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O is down to a 2 1/2 hour infusion (they get faster once they get through 6 or so and now her dose has been lowered). We get the first appointment of the day (7:30 a.m.) The center is about an hour and a half away. So I usually get her back to school for a few hours of the day.
03-10-2015, 05:43 PM   #319
Farmwife
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Grace's first infusion was 6 hours. They were worried about her past history of allergy reaction.
Now she's finishes in 2.5 hours.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-10-2015, 06:14 PM   #320
DanceMom
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2.5 hours would be lovely! A's infusions take 5-6 hours (if all goes well). We use that time to watch movies, relax, and play games. She actually doesn't mind it.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
03-10-2015, 09:39 PM   #321
Jmrogers4
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Yep miss a 1/2 day here and it's only 15 minutes away but lunch for him starts at 11:46 and it is just easier to take him from school then and get food on the way. We like afternoons then he only misses 3 periods instead of 4.

On another note Jack had a huge project for English due today which he has not been very good about getting things done ahead of time for it. He stayed up till 1:00am last night to finish and he has had no issues today because of it. In the past the stress of the project combined with a late night would have caused issues and taken days to recover from. I'm glad he is healthy enough to be able to pull an extremely late night and not pay for it more than any other teenager. (And he got 235 out of 230 points).
03-11-2015, 06:21 AM   #322
SupportiveMom
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Fantastic for Jack!
03-11-2015, 06:40 AM   #323
Clash
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C's infusions took about 2.5 to 3 hours and since we traveled to his GI IV lab he missed the whole day.

Way to Jack, jmrogers4 I know it has to great to see all of these changes.
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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
03-11-2015, 10:18 AM   #324
CarolinAlaska
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That is great about Jack's paper.
03-12-2015, 08:25 AM   #325
CarolinAlaska
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High School Struggles: Is anyone else having them? Your kids all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having a bit more of a struggle when it comes to high school.

Jaedyn has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you orally without any problem. I will admit, I've been lax on making her do the written stuff, because I know that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I here her saying things like, "I don't think I can do ________" because I won't be able to go to college. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.

We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Jaedyn is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.

Thanks for any advice or encouragement you may have!
03-12-2015, 10:04 AM   #326
Jmrogers4
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Oh goodness, writing is our biggest issue as well. We have actually found that the public school has more to help him out. Jack went to a private school last year (Freshman) and struggled with his health and especially in English class even though it was essentially a repeat of his 8th grade year and covered the same curriculum. (A in 8th, C in 9th).
We struggled with where to place in Accelerated English (which was the track he was on before transferring to the private school) or Regular English. His counselor was great he suggested we try Accelerated and could always drop him down if it was a problem. The first semester was a bit of a struggle and his writing was okay if I went over it and pulled more details from him and really helped him. They have a writer's block at his school now on Mondays and Wednesdays at lunch, which is essentially seniors in the AP English class go over your papers and help you with the writing. This has been amazing for us. Current grade in English A. I think his improved health has helped as well as the fatigue isn't a huge issue anymore and I think in the past he just wanted to hurry through it and get it done it so he could rest.
While he will not be doing AP in English next year, we've figured it is just not his strongest subject and that's okay.
You of course know your child best and we found visiting the high school and counselors and even the 504 manager (who happens to have Crohn's and is on humira) just made a great fit and he is happy and thriving.
03-12-2015, 11:07 AM   #327
my little penguin
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Other thing to suggest is dragon naturally
A software program where you just speak
The program types out what you say
The difference in writing content from spoken word to trying to type it/write by hand is amazing .

Second testing for special education
Sometimes there are things going on ( not major ) that can cause issues with writing/processing -simple aids ( not a special class ) may be all that is needed .

Good luck
03-12-2015, 03:27 PM   #328
crohnsinct
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For starters my oldest daughter had average grades. Average student. Took only one or two honors courses. English (her worst subject) she took very basic level...not even college prep. Her SAT scores were dead on average for the country which in our area would be a pathetic score (very competitive). She applied and was accepted to 12 colleges and got scholarships to all but one...her first choice and the one she is attending...go figure! She was chosen for a very competitive program. 1,100 applicants and they accepted only 100. On paper she was not a candidate for the school but she tried anyway. I think what got her in was her mission work and investigation in her chosen field (she shadowed an OT for 40 hours and had a sister who underwent OT). My point...don't worry about the transcript. Her comfort with the subject matter and her growth is what is important. Colleges look at the whole individual and really look to the essay to understand the person. She will go to college if she wants!

Jae seems very intelligent and driven but really how can anyone expect her to perform at such high levels when she is not feeling well, fatigued and mal nourished. I really think when she is healed up and able to absorb all her nutrients and they feed all her systems you will probably see a very different girl.

O is in all honors with the exception of English...her worst subject. She is also in basic level...like her sister. I worry she is taking too aggressive a schedule next year and that she needs some down time to be a kid and also in the back of my head wonder, "what if she flares".

T is a nightmare when it comes to school. She has severe dyslexia and like Jae if she experiences a set back she gives up. Everything in school is a constant struggle for her and she also feels she will never go to college. She went to a private school and then public. She likes the public school better. Larger, more diverse community of learners. She isn't so obvious anymore. Lots of services. They are also amazing with the 504 and all kinds of support for her with regard to her Crohn's.

I would echo MLP's suggestion of learning testing. There could be an issue you haven't discovered. After T was dx'd we tested her sisters and guess what...Dyslexic! Every one of them. But the older girls somehow learned a way around it so if it ain't broke don't fix it.

If you are able to identify a learning difference they have to make accomodations for that just like with IBD. Maybe oral testing for non English classes etc.

Good Luck!
03-12-2015, 04:30 PM   #329
CarolinAlaska
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Thanks, Ladies. Do I call and set up a meeting with her counselor they assigned us to to discuss these things?
03-12-2015, 07:40 PM   #330
SupportiveMom
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I would Carol. Maybe they have options you haven't thought of. When D started high school I sat down with guidance and principal and was introduced to a class that I didn't know existed. it's like. homework helper and that teacher is my go to person to gather homework when D can't get to school, and it gives her a place to catch up on concepts she might have missed. I didn't even know it was an option. Maybe the school has an alternative you don't know of. Big hugs.
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