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Crohn's Disease Forum » Parents of Kids with IBD » Parents of Pre-Teens and Teens with IBD


 
04-16-2014, 08:47 PM   #31
my little penguin
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DS has been on humira for almost a year now give or take a few days.
He reacted to remicade twice even though it was working well for him.
Humira took longer to start working since a) we didn't do a loading dose and b) we started at the lower pediatric dose ( 20mg ).
I inject DS with a syringe every other week.
His Rheumo prescribed lidocaine to add to the humira syringe to reduce the burning of the shot.
The lidocaine increases the pH I think.
We take the shot out of the frig
Draw up a fresh syringe of lidocaine
Add the lidocaine per his doc to the pre filled humira syringe
Then inject.
He gets to pick a movie to start watching during the shot.
He also has squeezy stress balls he holds in. Each hand.
Or a laughing happy pill to squeeze during the shot.

Seen here
http://m.youtube.com/watch?v=5L0wt2HoZgQ


He gets doughnuts or ice cream after the shot.

As far as fatty area -DS has been supplementing his diet for over three years now with en ( peptamen jr ). He drinks 2-3 a day so an extra 500-750 calories a day.
This helped him gain over 30 lbs since dx. And start growing again.
I don't plan to let him stop till he is 18 at least.
He is 10 now .

Good luck with the humira .
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DS - -Crohn's -Stelara -mtx-IVIG
04-16-2014, 09:48 PM   #32
kimmidwife
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What a great idea to start this! Caitlyn is 16 and Mugsymagoo we are also in Florida. Super sorry to hear about your daughter experiencing a perforated intestine I know they list that as a possible complication though rare thank goodness. Hopefully she will have the reversal and all will go smoothly. Is she in college?
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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.
04-16-2014, 09:55 PM   #33
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Where in FL are u guys? Yes I pray she can have the surgery this summer! She is currently a freshman at the University of Florida!
04-16-2014, 09:58 PM   #34
kimmidwife
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We are in South Florida.
04-16-2014, 11:27 PM   #35
Mehita
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For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-17-2014, 02:37 AM   #36
Willowcat05
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Were in, my son is 14 diagnoised feb 2012 currently in remission due to surgery and methotrexate


Past meds
Azathioprine
Ferrous sulphate

Right hemicolectomy
Methotrexate 0.3ml
Folic acid
04-17-2014, 02:41 AM   #37
Chester31
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We're in too! Son diagnosed June 2013, is now aged 15. Back on EEN while waiting to see if he generates antibodies to chicken pox vaccine before going on to AZA.
04-17-2014, 02:45 AM   #38
Willowcat05
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Mehita,
I find it really hard to tell the difference, with the easter hoildays just now my son is sleeping to 2pm in the afternoon .he is not having any crohns symptoms so hope its just him being a teenager.We are also waiting on tests coming back to confim that he has Gilberts syndrome which can also make you tired.
04-17-2014, 06:38 AM   #39
greypup
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Mehita, the teenage fatigue that M has is easier to overcome and doesn't have other IBD symptoms that show up with it. Does that make sense?
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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
04-17-2014, 06:48 AM   #40
SupportiveMom
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I am glad my other teenager in the house went through sleeping a lot and no energy. If she didn't I probably would have been more concerned when D has it. I admit though it is hard to know the difference between teenage tiredness & IBD tiredness. When she is overly tired I start looking for other signs of issues but not to hard until I see something else. Raising a teenager itself is hard!

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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 ☆
04-17-2014, 07:52 AM   #41
Clash
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I think C's fatigue is a combo of things, incl. Chronic disease, lowered iron, possibly active disease and a messed up sleep schedule.

My college age daughter slept a lot as well in high school and was tired but it seemed comparable to the amount of activity she was exerting, not the same with C. She is in college now and will sleep all day on off days but she carries a full academic load, works two part time jobs and carries on a full college social life so it makes sense for her.
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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
04-17-2014, 08:11 AM   #42
positivemum
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Another teen here DS 15 and controlling his crohns through EN. a good idea to have a teens support
04-17-2014, 08:19 AM   #43
Ands
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Fatigue is awful with J, not 13 until August. Bloods currently OK but very erratic BM, mouth ulcers, sore eyes.... Hoping FODMAP will help with some of this, slightly nervous about starting but are going to do 6 weeks. J sleeps from 8.30pm - 6.30am and is just as tired when he wakes up!!!!!
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Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
04-17-2014, 08:42 AM   #44
SupportiveMom
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Cool the 'mum's both doing EN at the same time. How is your 15 yr old managing it? Tube or orally? Any issues getting him to start it?

04-17-2014, 09:27 AM   #45
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I'm joining this group too! My son is 14, got diagnosed last year right before he turned 13. He is now on remicade and methotrexate, things have been going well until last week when he got a stomach bug and that caused a flare up. I think this support group is going to be great for us parents with teens!
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Son, Nathan 14, diagnosed in January 2013

prednisone: 01/13-03/13, 04/13-05/13
pentasa: 03/13- 11/13
6MP: 06/13- 01/14
Mtx: 01/14- still taking
Remicade:01/14- still on it!
04-17-2014, 10:44 AM   #46
Maya142
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I think when my daughter is tired and it has to do with active disease, no amount of sleeping or rest really helps. If it's just regular teenage tiredness then a nap or going to bed earlier helps.
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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
04-17-2014, 10:59 AM   #47
Chester31
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Hi SupportiveMom
My son takes EN orally - he doesn't really mind it any more. We 'paid' him to do it first time around but he's keen to do it this time to avoid going on to stronger medication. Unfortunately I think we're heading down that path anyway but I'm keen for him to keep going with the EN in addition as I'm sure it helps to maintain his weight.
04-17-2014, 12:37 PM   #48
SupportiveMom
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Well keep up the EN orally. Good for you. Learning the hard way there is much more to this EEN than I'd like. So wish I could get her to stick to oral EN. We are already on the strong meds so I appreciate waiting for them as long as possible.

04-17-2014, 12:55 PM   #49
positivemum
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Hi supportivemum

my son was diagnosed 3 years ago and initially did EN for 8 weeks - didn't want a tube so went for it orally - brilliant willpower at the age of 12 and he only likes one flavour! It helped a bit but damage so great we ended up with prednisalone course then 2 years AZA with Pentasa. Did work. But last Aug he felt ' not right' and decided to go back on shakes exclusively for 6 weeks. really did the job this time - is still on 6-8 shakes a day and a meal sometimes 2 a day but very restrictive diet at the moment. However, he is off ALL meds at the moment and school attendance 100% better this year etc. He sometimes says he needs to line his stomach with a shake before food and he seems to have it all worked out at the moment. After his exams etc this year we will try to add more food in. EN does work!
04-17-2014, 01:25 PM   #50
SupportiveMom
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I wish more doctors pushed it in the beginning. Many step right up to meds. D was so bad I know we had no choice but to do meds. I'm glad to hear he is making it to school more. That is our goal too!

04-17-2014, 07:02 PM   #51
kimmidwife
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I too wish doctors pushed EN. I only knew about it from the forum and that was after we had tried many meds first.
04-17-2014, 07:16 PM   #52
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I am a new member so not sure if this is the right spot to post this...my son Sean age 15 was diagnosed in jan when a bout of salmonella landed him in hospital. We think he most likely suffered in silence for about a yea before. He had lost tons of weight, never ate much and was always tired. Spent most of his days glued to his computer. Over this past four months has had steriod treatments and now on maintannce meds while weaning off steriod. Has has two flares already. When he's not flaring he's feeling fine but I've noticed tons of brain fog? He was a straight A student before this all happened and now is having a hard time. Has anyone else noticed short term memory loss? Has anyone done something that helps?

Taking
Prednisone..started 50 now down to 20
Imuran
Asacol
Multi vitamin
04-17-2014, 07:19 PM   #53
kimmidwife
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Welcome Spershick,
I am sorry to hear about your son but glad you found us. There are many things that could cause brain fog. It could be exhaustion from the illness. It could be from the medications. Are you making sure he gets enough sleep? I know this is a battle with my teenager. I have to literally take away the computer and make her go to bed. She needs 8 to 9 hours of sleep to really feel good. How much sleep do you think he is getting? Maybe he needs more.
04-17-2014, 07:25 PM   #54
Mehita
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Has he had his Imuran levels checked, spershick?
04-17-2014, 07:47 PM   #55
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Yes he has blood work done every 2 weeks..do you think it's the imuran causing the memory loss?
04-17-2014, 07:51 PM   #56
Spershick
 
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Yes kimmidwife I think he is sleeping ok, he likes his sleep unlike most teenagers who stay up till all hours of the night...I'm guessing it's most likely just the whole "crohns" stuff that is making him foggy. I'm sure all the pills don't help too
04-17-2014, 11:00 PM   #57
DustyKat
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@Spershick

Where is your sonís Crohnís located?

If it is in the small bowel have they done testing for levels of B12, Iron Stores, Vit D, Magnesium and Zinc?

Dusty. xxx
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04-17-2014, 11:28 PM   #58
Spershick
 
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Hi Dusty, yes most of his inflammation was in colon but some in small bowel was seen with MRI so crohns was his diagnosis. I really don't know all the blood work they do..every 2weeks because of the start of the imuran. I will ask the GI nurse about all of those you mentioned. Thanks so much. I see you have 2 kids with crohns. I have been wondering about my sons older brother..I heard its common in siblings. I also see yours are both on imuran. I have been worried about this medication and all the scary things that could happen..this is all new to our family and so glad to see positive advice from other parents out there.
04-18-2014, 12:44 AM   #59
DustyKat
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@Spershick,

Your lad has ileocolitis which is the most common type of Crohnís. Generally it affects the last part of the ileum known as the terminal ileum and the first part of the large bowel or the ascending colon.

Since he does have ileal involvement, and because you feel that he has had symptoms for some time, he is at higher risk of having issues associated with malabsorption. The vitamins and minerals I mentioned above are the ones most likely to be affected if there is a deficiency and may well cause the issue you are speaking of, particularly the B vitamins and iron/folate. It is very common for those with Ileal Crohnís to be deficient in Vit D and also Magnesium and Zinc. All these play various roles in the normal functioning of the body and some play a critical role in the immune system and healing. Symptoms of deficiency do involve such things as weakness, tiredness, lightheadedness, depression, impaired memory and cognitive function, loss of appetite. I have picked out the particular issue you are dealing with right now so you can see how malabsorption may be playing a role but as you can imagine the symptoms of deficiency of each of these things has quite an extensive list. Unfortunately a multivitamin wonít cut it with these sort of deficiencies.

I have my own views on what level should be aimed for when supplementing so should it ever come to you needing to do that and want my opinion I am happy to give it.

They wonít necessarily be tested for unless you specifically ask or unless the GI is on top of things.

Having one child diagnosed with IBD means the risk of another developing it is about 30%. We lucked out on that one and although I am not the only one here with more than one child affected there are loads that donít.

Yeah, the drugs suck ay? But then so does under treated Crohnís.
Our introduction to Crohnís wasnít a pleasant one, as if any are!, my daughter went undiagnosed for 18 months and ended up getting her diagnosis via emergency surgery. We nearly lost her so I must admit I grabbed onto those drugs with glee!
Seriously though mine have been on Imuran for nearly 8 years and 3.5 years respectively with no issues, touch wood! The main thing is to ensure that you regularly monitor their bloods whilst ever they are taking the drug, that is at least every 3 months.

Dusty. xxx
04-18-2014, 12:57 AM   #60
DustyKat
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For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?
@Mehita,

With Matt it was how he looked. Pale, drawn and dark circles under his eyes. His lethargy was almost palpable.

When his long hours of sleeping wasnít related to Crohnís he looked rested and had that bounce about him, when he was awake!

Does that make sense?

Dusty. xxx
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