• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Parents of Pre-Teens and Teens with IBD

My name is Lori Smith and I'm the parent of Antonio, my 15 yr old "Crohnie". Antonio was diagnosed in Sept 2010 with Crohn's Disease & our lives haven't been the same.

I'm creating this support group for other parents of pre-teen/teenage "Crohnies". I had no idea what Crohn's was and I work in healthcare.

The main thing we want you to know is that YOU ARE NOT ALONE!!!! We are here to provide a listening ear and great information regarding research, financial, medicines, etc. to help you make the best informed decision for your child.
 
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I actually really like the idea of a support thread for Parents of Pre-Teens and Teens with IBD. There are actually a number of situations unique to that age group and going through puberty and having to deal with IBD along with all that.
 
Thank you Julia...our son is 14 years old with delayed puberty, so we are definately looking for any ideas to continue progress. Last week we had scans, swabs and labs done to determine why our son was so tired for about two months...Is it Crohn's related or puberty? Still waiting on results. Will share any info that I receive from our experiences as well as looking forward to any of the info on here to help us!!!
 
DS hits 13 in August, so I think we fit the bill of this group! Just about to start on the low FADMAP diet, we know it won't be easy but happy to give anything ago!
 
K will be 17 in November. Diagnosed with Crohns in Jan 2010. Resection in July 2011. Hospitalized 2X in last 8 months for obstructions. Colonoscopy and MRE next week. Currently on Remicade and Methotrexate but GI says he sees Humira in near future.
 
Kyle's mom my son, C, is 17 now. He has been on remi since dx 2 years ago and mtx was added shortly after. He has disease progression now so we are going to be looking at changes in treatment as well.

How did Kyle do with surgery and where was his resection located, if I may ask?

I hope a change in treatment brings Kyle into remission and then long may it last!
 
Clash

K did well with surgery. They removed about 12 inches near the terminal ileum. We are hoping tests do not show scar tissue as the culprit for the obstructions. This disease has affected him so much. He was diagnosed with school phoeba after surgery. He now attends the ged program with only a few students. He does not like to see anyone that may know what is going in with him.
 
C's CD location is in the TI as well, it mainly involved the IC valve but now there is further progression in the in TI area.

I'm so sorry to hear that Kyle has school phobia. C goes to a flex school so he is either in class or doing independent study at home. For the most part he has done independent study this year. Especially after the ng tube, he can take it in and out daily but sometimes just leaves it in for convenience. On the days he will go any where in town with the tube in but won't go by the school.

I hope the program Kyle is in really works for him and helps with less stress!
 
Yes, he has an ng tube for feeding, it is really small, he places it in the evening most night and removes the next morning. He has not been gaining weight so we decided on the EN feeds to make sure he was getting proper nutrition. I think he has issues with absorption since it is his TI affected.
 
My son is 13 ( diagnosed in 2009 at age 8) with CD and UC. He is growing, finally gaining a few pounds, and his voice is cracking :) He is currently on Remicade, but developing antibodies, so we will see where we go from here. Great forum....I cannot wait to learn from other parents.
 
Hi - I am a mum of a newly diagnosed son aged 10 of severe crohns found throughout the colon, ileum and in the stomach. He has been on the modulen drinks for 2 weeks and just started azathioprine. His hair is already starting to fall out. I am so scared of the disease and the powerful drugs on such young children but feel like we have no choice.

I have a second son aged 12 who is in the process of starting tests as he has shown growth delay in the last 2 years, night sweats and eye inflammation. Docs dont seem too worried at the moment. This whole journey scares our family. I have been following some of the posts as I am not sure how much emotional support there will be from the medical side of things.
 
Thanks---it has been a tough year. Despite his remicade, he continues to have symptoms and may possibly need to move to Humira soon. I am not looking forward to the switch, hoping we can hold on to remicade a little longer. He has started to develop antibodies, and the GI said it is unclear how much longer remicade will work for him.

I hate to see him in pain. If I could trade places with him and take this all away, I would do it in a heartbeat.

Thanks for welcoming us to the forum, I am sorry we have to be here....but it is awesome that we are not alone :)
 
my little penguin's son although younger had to make that switch a while ago and her son is doing quite well on humira I believe there are a number of kiddos on humira who it is working very well. I hope it provides many years of symptom free relief for him.
I can certainly understand though when something has been working and finally brought some relief it is hard to let it go and once more venture into the unknown.
 
He is really afraid of the shot....he has heard that it burns, and that you need to inject into an area that is a bit more fatty. How in the world do these young folks find a place to inject themselves, when they are so slim ?
 
I believe they ice the shot spot, leave the shot out to warm up a little and some use a numbing cream. Maya's daughter is also on Humira. I'm sure more will chime in shortly with some of the tips/tricks.
 

Maya142

Moderator
Staff member
Hi Daltonsmom,
Both my daughters have been on Humira. The shot does burn a lot but they got used to it. We ice for 15 minutes and then inject into their thighs (they're both pretty skinny, so they don't have fat on their stomachs). We do it while watching TV so that they're distracted and after we have ice cream.
The shot is painful but we found that the relief they get for 7 days (they both do weekly shots though some kids do every other week) makes it worth it. Initially I did their injections but now they both do them by themselves. I've heard people say that the syringe is less painful (compared to the autoinject pen) because you can control how fast you inject it. We never tried the syringe though because neither of them wanted to see the needle. Also, we ice after the shot too.
Mylittlepenguin has found a way to make the shot less painful - I think she injects lidocaine into the shot itself. I'm sure she'll be along shortly to explain how she does it.
 
My daughter is on Humira. Not making a difference for symptoms, but according to MRE she is healing considerably so either that &/or the Methotrexate. Maya said it pretty well. We also ice, and we so it right before bed. It works for her best that way. Good luck!
 
Hello everyone,

My daughter is Kayla and she just turned 19 last month. She was diagnosed with UC 7 years ago and now is diagnosed with Crohn's. She is currently on Stelara every 8 weeks, and also has a temp ileostomy due to a stupid doctor perforating her colon during a scope. Am hoping that she can have the surgery to reverse that this summer. She is a Freshman at the University of Florida. We live in the Tampa area. She has been on every medication out there over the last 7 years, and so far Stelara has been the best. Next scope is in a month and praying for more improvement!!

Therese
 

my little penguin

Moderator
Staff member
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 .
 
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?
 
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!
 
For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?
 
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
 
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.
 
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.
 
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!
 
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.
 
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!!!!!
 
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?
 
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!
 

Maya142

Moderator
Staff member
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.
 
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.
 
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.
 
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!
 
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!
 
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
 
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.
 
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
 

DustyKat

Super Moderator
@Spershick

Where is your son’s Crohn’s 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
 
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.
 

DustyKat

Super Moderator
@Spershick,

Your lad has ileocolitis which is the most common type of Crohn’s. :ghug: 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 Crohn’s 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 won’t 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. :lol:

They won’t 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 don’t. :)

Yeah, the drugs suck ay? But then so does under treated Crohn’s. :voodoo:
Our introduction to Crohn’s wasn’t 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! :eek2: :lol:
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
 

DustyKat

Super Moderator
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 wasn’t related to Crohn’s he looked rested and had that bounce about him, when he was awake! :lol:

Does that make sense?

Dusty. xxx
 
Can anyone help me out with lab work results? D was in the hospital for labs and remicade on Monday 4-14-14. The GI called yesterday, said most counts look great, but anemia is still present.

What tests do they use to determine anemia? I have print outs from his last three lab results, and I can see drops in many levels ( WBC, RBC, Hemoglobin, Hematocrit, MCV, MCH etc.) Which drop in level should I be most worried about, they are all dropping-----not shockingly so, but dropping at each of his last three lab draws---January, March, and April.


Can someone please shed some light on the subject? He takes Vitamin D supplements and a multivitamin, and now we are discussing adding iron to the mix.

I would love some advice on what to look for, questions to ask :)

Thanks!
 
Thank you so much dusty I think some times parents know more than the specialist do! I think you are right about all the deficiency stuff. My Sean has always been skinny, pale, tired, cold, no motivation to do anything but sit in front of a screen. I will be calling my GI nurse after the weekend to get everything checked:)
 

DustyKat

Super Moderator
Good luck and let us know how you get! :)

If you do get bloods done be sure and get copies of the results. If you feel so inclined you can post them on the forum and we can all put our two bobs worth in. :lol:

Dusty. xxx
 
Hi! I am in! My son age 18 was diagnosed recently and the GI started him with a Top down approach and is currently on remicade . His disease is in the upper part of the small intestine. Glad to have this support group :)
 
Hello to all, this group is going to be such a benefit to Makayla who will be 13 in July. We live in the Tampa area also. Just finished 1st Remicade treatment last Wednesday and praying for good results, but I guess it will take time to see if it works.

Jo
 
This group is a great idea. My daughter is 13.

Our story: We were fortunate to get the definite Crohn's diagnosis only about a month after she got sick last fall -- she was totally healthy before that. Pediatrician kept saying it was probably a virus causing the fever and weight loss, but we insisted on blood work, which showed anemia and a lot of other abnormalities. Pediatrician said "I don't know, maybe you should see a rheumatologist?" My husband's brother is a doc and said he thought a pediatric GI would be a better choice. In our area it is very difficult to get an early appointment with either. I made appointments with both types of doc and asked to be on a waiting list for both, and the pediatric GI had an unexpected cancellation a week later.

Had the colonoscopy and endoscopy and biopsies and MRE, all said definitely Crohn's. Doctor gave her Pentasa and Prednisone, neither helped much, and the doctor started pushing 6MP.

We did a ton of research. My husband is a health care researcher by profession, and I know a lot of people, so between us we came across a lot of alternatives. Early on, someone told me about the Specific Carbohydrate Diet, and we got the book, but it sounded so goofy, we didn't take it seriously.

We tried a lot of dietary supplements such as turmeric, tart cherry juice, probiotics, cat's claw, wormwood, and some others. Also supplemented with B vitamins, zinc, Vitamin D3, and lactoferrin, because of her anemia and malabsorption.

None of these things seemed to help. The only thing that did was EEN which came about because she wasn't eating and we essentially bullied her into drinking Ensure shakes all day for a few days, which was followed by the all-liquid cleanout for the colonoscopy. Amazingly she felt great for about a week after that! When we told our doctor about that, she said "Oh yes, EEN can work well, but it's too difficult to stay on it." We were furious that she had known about it all along and had never bothered to mention it as a possibility! On the other hand, she was right in a way - when we brought it up as something we should try again, our daughter flatly refused.

So we're four months into this nightmare, and we went so far as to fill the 6MP prescription, but couldn't quite bring ourselves to start administering a chemotherapy drug to our daughter without trying one last thing. With no great expectation, but considerable desperation, we started the whole family on the Specific Carbohydrate Diet.

Our daughter had had a fever every day for four months, except for the week after the EEN. Sometimes as high as 103. She had stomach aches and fatigue every day. Weight loss. Facial flushing. No appetite even though she was on 40 mg of Prednisone.

Four days after starting the diet -- no fever. No stomach ache. Both completely gone. Tons of energy and appetite. It was like a miracle. After two weeks, all the inflammatory markers in her bloodwork were back to normal. In fact, low normal. After another month, virtually everything in her bloodwork was completely normal.

She's now been on SCD for two months. We tapered her off the Prednisone and other supplements, and now all she's taking is the Pentasa and zinc and Vitamin D3. (Not sure if the Pentasa is doing anything at all, but we will reassess when it comes time to renew the prescription.)

We just came back from a week in England over Spring Break, and she was perfectly fine the whole time. Eating was a bit difficult, but thanks to good restaurant advice from some Paleo blogs, we worked it out OK.

SCD doesn't work this well for everybody, but it does seem to help a lot of people. We have become SCD evangelists, spreading the word that this is something that is worth a try. At the very least, doctors should give the information to their newly-diagnosed patients, even while they are waiting for the first appointment or the endoscopy or for other meds to start working.

We know there will be some bumps in the road, that's the nature of this disease. Still, for now she's doing well, and we are continuing to educate ourselves.
 
Your doc is right, EEN is hard to stay on, and in my experience very hard with a teenager. We tried EEN orally and my D didn't stick with it. When the GI discussed it again this time she knew orally she wouldn't commit to it and actually opted for the NG tube to ensure you sticks to it. We are just about at the end of week 1 and so far so good. It has been a learning process with measuring bile in her stomach and how fast she digests. We have had 2 night passes and she was around food & people and wasn't tempted. She knows the risk in doing so and doesn't want a set back.

I do hope when she is reintroduced to food to try the SCD diet or low residue as that was one we couldn't really switch to with success mid stream of the disease. I have a while to think about sitting down at the family dinner table again so I have lots of time to read & plan. Be sure to post issues & successes in the diet section so I know what works & doesn't!
 
Ibligh - it's fantastic that your daughter is doing so well on the SCD diet. I also bought the book but didn't even mention it to my son as I thought he'd hate it and I couldn't see how to make it work for us as a family. He's had great success on EEN too but symptoms come back when he starts eating again. He's currently on EEN once more although his GI wants him on azathioprine once we've sorted out his immune issues. I am really struggling with the idea of Aza, particularly given his age and the fact that he's male, and would love to find an alternative. Please keep us updated - we just might have to give it a go!
 
We have been to every pediatric GI in the Tampa area since Kayla was diagnosed at age 12. Didn't like any of them! We started taking her to the Mayo clinic in Jacksonville 2 years ago, and we love it there!

Yes, Go Gators! Kayla finishes up her freshman year next week!!!!!

Therese
 
Changing to SCD was actually easy for us because for weeks we'd been eliminating every food that seemed to disagree with our daughter. Plus we had been doing what the doctor directed and eating "low residue." By the end it seemed as if she could hardly eat anything.

So when we started SCD it was such a luxury. Salads! Shrimp! Meat! Fruit!

We go to a whole lot of effort to make the food delicious. For the cost of one endoscopy, you can buy a whole lot of out-of-season raspberries! There is a new variety of bacon from Gwaltney that has no sugar or starch, and that's perked up our breakfasts a lot. I make a half batch of SCD-legal macaroons every couple of days.

It has helped a lot that the Paleo diet is so similar to SCD and is currently popular. There are tons of great recipes online. My daughter likes to look for recipes that sound good, and it gives her much more feeling of control over her diet.

Truth to tell, the rest of us sometimes cheat when she isn't around. But we only eat SCD-legal food otherwise. It's only fair, and it's actually a very healthy diet.
 
Hi Ibligh,
Such great news re your daughter and her success with the diet. Has the diet actually reduced her inflammation, besides symptom control? Its great that you are all supporting her in the change of diet.
What area is her crohns located ?
I have always been curious about the diet, but in my sons's case he barely had symptoms, so I didn't want to add another stress. I will do some research. Thanks for sharing!
 
My youngest saw Dr. Arasu for laryngopharyngeal reflux a few years back. We felt he was adequate but we were very unhappy with the hospital he worked out of. Ironically I worked for the same hospital a few years prior to taking her there.
 
Dancemom,

Where do you guys live? I am a dance mom too! LOL! Two of my girls dance competitively! We had a very bad experience with Dr. Cuenca who is in the same practice as Arasu. I hope I never see that woman again!

Therese
 
I bet we've passed each other at competitions! What studio are you at?

We live in Lakeland but use Nemours in Orlando. She saw Dr. Winesett at St. Joseph's, and though we liked her she just couldn't give us answers.
 
My girls dance at Dance Extreme Academy in Trinity! We are actually going to Headliners Comp this weekend in Orlando! What studio are you at, and what comps have you been to this season???

We saw a few docs in Winesett's practice also. Like I said, we have seen every ped GI doc in the Tampa area! lol
 
A dances for Tammy's Dance Company. This season we've done Showbiz, Hall of Fame, StarSystems, State Dance Championships, and StarPower. We will also be doing ShowStoppers and Thunderstruck. It has been a busy season! lol

Glad to meet a fellow Dance Mom on here!!
 
Pink, my daughter has (or had) patches throughout her upper and lower GI tract, but especially at the terminal ileum. She never had diarrhea or vomiting, though, just fever and weight loss and stomach aches. We were really surprised by the Crohn's diagnosis.

Anyway, all the inflammatory markers are now normal. In fact, they are low normal.

Now of course we are wondering how long she needs to stay on the diet. We are guessing a couple of years.
 
Hello all...my son is a newbie...diagnosed last tuesday. Glad I found others in my area. I live in riverview..just moved from Tampa. .love reading all post..I am learning a lot... I recently bought everything gluten free dairy free soy Because I heard this diet is good..also looking into paleo diet. Anyone been on this diet? My sons Gi wants to try remicade and 6mp soon. Hes currently on 10 Pentasas, 4 prednisones, 6 zincs, prilosec, vit d, k and pediasure peptide..I feel like he's getting worse..any advice..is this normal? Is there a group that meets in tampa..my son is a very mature 10 almost 11 yr old thats obsessed with mind craft :/ he feels alone. I was looking to take him to camp oasis in georgia. Anyone been there? Also hes seeing a doctor in st pete hospital named kargoo..anyone know of her...or anyone can recommend an swesome Gi around? Sorry so many questions..I have tons more..also heard of something happening at MOSI I believe may 17th or 19th I was thinking of going anyone else going the program about Crohn's but you have to RSVP for and then free entrance to mosey afterwards
 
Welcome nani0126, so sorry to hear about your son's recent dx.

There are some parents here who have tried SCD, paleo, gluten free etc. I haven't had experience with diet helping with my son's CD other than low residue when flaring. I'm going to tag some others whose children are following a diet plan I think Jenn has a son following low FODMAP, jmrogers4 I think has tried gluten free and maybe SCD or paleo, my little penguin has a son that may have tried some of these diets and Dusty has a daughter that has been on raw vegan maybe? A lot of us have done elimination diets to try and figure out what possibly could be triggering issues.
 
Nani,
I answered you about diets on the other post so wont repeat all that. I will say that Camp Oasis was a minor miracle for my son. He was also diagnosed at 10 and went to Camp Oasis (in Washington State) for the first time that summer. Before camp he was pretty depressed about the disease, didn't want to talk about it, didn't want anybody to know. He met some incredible kids at camp that are dealing with the same issues and he wasn't different there. They have maintained that friendship throughout the year and all look forward to meeting at camp again every summer. He came home from camp and had a completely different attitude. He may have crohn's but crohn's doesn't have him. He stood up in front of his entire 6th grade class at the beginning of the year and told them all about it. They were all really supportive. I was one proud mama!
In fact one camp friend who lives in another state has become one of his best friends and are each others go to person for support on the disease, they talk about medicines they are on, how they are feeling and just regular teen stuff. It is nice to have a peer to talk to that "gets it" kwim? My son's are minecraft freaks as well and he regularly plays minecraft together with his camp friend on both the xbox and computer. When he is on the computer he usually has my laptop next to him skyping his friend so they can talk while playing.
 
Thats hilarious jacqui...my son is always on minecraft with his friends and labtop at the same time ....thanks for the advice about Campo oasis... I think it truly will benefit him. I am excited for us to go please keep in touch, i very much appreciate yourS and everyones advice especially since we are new at this... ;)
 

my little penguin

Moderator
Staff member
Pentasa was. Useless for my kid .
We were told it either works or it doesn't but to only give it 30 days .
Diet helps crohn's but since most kids tend to have a more severe course more meds are needed.
DS tried free of this that and the other you name we tried it.
Nothing really helped
He also tried all the different meds.
EEN - peptamen jr helped him grow and gain weight but only remicade /humira got him back to being a kid again.
All the recent studies show remicade plus immunosupprent early on are the best way to reduce the risk of surgery later and stay in remission longer.
My son was 7 at dx and is now 10.

Sorry you joined the club
 
Welcome. We haven't tried any special diet for my son, now 12, I think maybe you meant the admin Jennifer . My son is doing well on Humira. The top down approach going for Remicade first usually gets quicker and longer remission. My son is hooked on Minecraft too. He plays it while listening to youtube videos of people playing it also. :) He has gone to Camp Oasis in CA once, absolutely loved it, and will go again this summer. Such an amazing place!
 
Nani, the Paleo diet is quite similar to the Specific Carbohydrate Diet which has been such a success for my daughter. The Paleo diet is popular now, and that has been great because people have posted great Paleo recipes online that I can either use or adapt slightly for SCD.

Because SCD is specificially designed for Crohn's and Ulcerative Colitis, you might want to focus on that diet, but I've heard of people having a great success with Paleo instead.

Some differences: SCD can have cheese and homemade "SCD yogurt" but Paleo is no dairy

Paleo can have maple syrup as well as honey; SCD is honey only

Paleo can have chocolate and SCD cannot (I still haven't figured out why)

Paleo can have potatoes and sweet potatoes, and SCD cannot.
 
Location
Canada
The FODMAP diet has greatly reduced my son's chronic abdominal pain. When he went on it all his inflammatory markers were normal but he was still having lots of pain.
 
I definitely have to look into both diets. Thanks. Were can I find posted recipes? and are there any favorites that your kids like?
 
We have tried a number of recipes from the "Comfy Belly" blog including a recent big success with Chicken Tikka Masala. I do a lot of recipe reading online, both SCD and Paleo sites.
 

DustyKat

Super Moderator
Thanks for the tag Clash. :)

@nani, I am so very sorry to hear about your lad. :ghug:

Both of my children are in remission following surgery that was required either at diagnosis or closely after it so their eating habits have been based on this state. Neither had the opportunity to use diet as a treatment when they were flaring.

With this in mind my son’s diet hasn’t really changed from pre diagnosis to post diagnosis. Having said that he has for such a long time preferred a very bland, somewhat low residue type diet even when in remission. I guess he became very in tune with his body a long time before any disease process showed itself and that style of eating became a comfort to him and it has remained that way. :)

My daughter, on the hand, has over time made a drastic change to hers. Her disease went unchecked for 18 months so the damage done was more extensive. :( She was 14 when diagnosed and had a difficult few years of adjustment, physically and psychologically, before she finally found her feet. She has transitioned from a ‘normal’ diet to pescetarian (fish meat only), then vegetarian and finally raw vegan. She states she feels the most healthy and energised on this type of diet but I do note there is some relaxation back to vegetarian as it does help in social situations. This type of diet certainly won’t suit everyone and I honestly don’t know how suitable it is for young, growing children as my daughter was an adult when she commenced eating this way.

Dusty. xxx
 
My son is 13, was diagnoised just over 4 years ago with crohns. He has delayed puberty, which we are hoping will sort itself out in the next year or so.
 
My daughter had a boyfriend briefly and he knew before they dated. Everyone in her school and her extended friends circle know she has crohn's though.Makes it easier. in the fall she starts high school with a whole bunch of kids she doesn't know. I am not sure what she will chose to share yet.
 
Jack has always been very open about it so not that he has had a serious or really non-serious girlfriend, there have been a few crushes but I think pretty much everyone knows he has crohn's so it has not been an issue but I think if it was someone new he would have no problem telling them.
 

Tesscorm

Moderator
Staff member
Stephen already had a girlfriend when he was diagnosed and he was completely open with her re his diagnosis as he was with most of his friends. Not sure how much detail he tells new friends/girls but I do know he's pretty casual about it if it comes up in conversation, ie when friends in residence asked about his Boost shakes, etc.

He's even used it to his advantage :lol:, he's never liked veggies and, his entire life, has had people say 'but just TRY it', 'Oh come on, it doesn't taste bad', 'just a bite', 'it's good for you', 'you're too old to be picky', etc., but now (he's told me) he just says 'oh I can't, I have crohns' and says no one ever bothers him again! :yfaint:

But, and I think this applies to anyone of any age, telling people you have crohns doesn't mean you have to explain every and all details. In reality, the details of 'your' experience with crohns may be very different from someone else's anyway...

With casual friends/acquaintences, I've heard S just say he has crohns which is an auto-immune disease that causes inflammation in his intestines so he just has to watch what he eats. If there's a reason, he will offer up whatever info is asked, ie another boy in his residence was diagnosed with crohns this past year and another friend's sister was recently diagnosed with UC, in both these cases, S offered up all the info he knew re tests, symptoms, etc.

Stephen was an older 'child' when diagnosed so his explanations have always been his decision but, maybe some of the younger ones just need to realize that keeping the explanation simple doesn't mean they're lying or hiding something, that how much or how little they explain is totally up to them and there is no wrong explanation.
 
M has had a boyfriend since Sept. She's in her junior year of high school. He and her close friends know that she has crohn's. She was pretty open about it all when it happened and they were super supportive. Her boyfriend is a very compassionate and thoughtful guy, which we are all grateful for.
 
We live in a very small town, and unfortunately some people can be very cruel when faced with a situation that they are uncomfortable with. My son does not have a GF, but he has a small circle of friends that know he is ill, and that he has to travel a great distance to a specialist to get treatment.

I know he shares information with his close friends, and coaches....but I don't think he is comfortable sharing information with just the average kid.

I hope when he gets more stable, that he can attemp camp and actually meet other kids who are dealing with the same issues. It may make him more comfortable. I know he feels alone some days, and I ( while attemtping to be compassionate) listen to him....but I can't possibly even understand what or how he is feeling.

He is on the quiet/shy side too, so that may be why he is not as open as other young people.
 
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