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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » 12 Year old son struggling!


10-19-2011, 04:52 AM   #1
Bubbly
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12 Year old son struggling!

Morning, new to this so just hope this works!

My 12 year old son was diagnosed 2 weeks ago after having a colonoscopy (top and bottom) only happened very quickly in total 4 weeks from first mention of symptons to diagnosis.

He has been put on Modulen 5 x 500ml a day, and started on Monday, really struggling with it, he hates it and hasnt been to school at all this week. He is struggling with drinking the full amount, dietician has told us to half them, and also to add Nesquick, which he tried and said it tasted slightly better.

He has never had a big appetite or drank alot, and always hated milkshake type drinks, so not good to start with. Just worried that he isnt drinking enough, or taking in enough of the modulen.

Any help of support would be very welcome, especially from anybody that has a 12 year old going through a similar thing. Also have an older boy who isnt being very nice at the moment, been calling him names and hiding his things, he is 15 and in his gcse year at school, so to be honest all a bit horrible at the moment.

Sorry for the moaning and rambling.

Look forward to reading any replied, and thankyou.
10-19-2011, 06:58 AM   #2
zilla7777
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Welcome to the forum! It's really nice to see you are going out of your way to learn more about your son's condition.

That's a quick diagnosis! It took me 6 months! I feel sorry for him. I'm 15, but I was diagnosed when I was 12. Did he lose much weight? If he can't stomach it (which I cant blame him, tastes terrible,) have you tried low residue foods like rice? In the diet and supplements section there is a sticky with foods that tend to be easier on people with crohn's. I'll try to link it soon if I can. School is really difficult with crohn's, especially with a flare up. He probably will be out of school for a while. Make sure you let the school know that he has it, and is in and out of the hospital. I've found the schools I've been to are much more lenient with attendance and handing things in if they know about it, it will help him so much (it did for me.) I've missed the last 2 weeks from my flare up, but I'm now on prednisone and it's getting better. One more thing, If you find it isn't helping him, and he is getting worse don't hesitate to tell the doctor that it just isn't working. Different people react differently to different medications, and there is different options out there. Hope he feels better soon!

EDIT: The link is here. Tt's very helpful, but take it with a grain of salt. Safe and unsafe foods vary between everyone. http://www.crohnsforum.com/showthread.php?t=17707
10-19-2011, 07:00 AM   #3
Gwen pippy
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Hey Bubbly and welcome to the site.
I can relate to your son, I was 11 when I was dx with crohns, I struggled with meds, nutrition,school attendance and the older sibling!!!! my sister is 3 years older than me and she would shout out that the light on the landing was keeping her awake when my parents were nursing me as I lay on the floor to weak to move after a several bathroom visits. That was over 20 years ago, I got good marks in school, I managed to hold down jobs, got married and have two kids now.
I know its hard to come to terms with, but he will find his feet and taking the modulen will hopefully get easier for him. You are doing a great job supporting him, I would have been lost if it hadn't been for my parents esp mum.
You are def not rambling or moaning and we are all here to listen, there is a section for parents of kids with IBD in the support section and it has some great advice in dealing with any situations that may arise. I'm here if you want to chat.

Gwen xxx
10-19-2011, 10:51 AM   #4
Bubbly
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Thankyou both for replying, nice to hear from people who understand what we are all going through. School has been very good as far, told to attend just as and when he can. A friend has told me she understands what my son is going through as she did the same thing twice, while waiting to have a gastric sleeve fitted for weight loss!! Dont think she had Modulen so she doesnt really understand the pain that also comes from Crohns. Have to admit finding some people annoying at the moment, alot think we are making a fuss over nothing, or maybe its me being over sensitive at the moment!

He was diagnosed really quick, which we are thankful for, just noticed he wasnt growing at all, height and weight small for age, and he also kept developing a crack on the side of his mouth, and the only thing was that he wasnt joining in with sport as much as he wanted. Took to GPs, diagnosed with anaemia, prescribed iron tablets, took various bloods and stool sample, then refered to hospital for more bloods and stool sample, results on the wednesday, hospital on tuesday, immediate diagnosis, all a bit of a shock really!

I am a stay at home mum, which i am grateful for, especially at this moment in time, the hospital have been great and all the staff, lots of information given and also always on the end of the phone, they have all been great.

Thankyou also both of you, its good to hear from you both and all the positive sides of things, at the moment it all seems pants!!

Will go and have a look at the other section for parents with kids with IBD, only just finding my way around this!!

Thanks again for your support and will keep in touch xx
10-19-2011, 12:25 PM   #5
Gwen pippy
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It's good to hear that your son's school and medical team are supportive and understanding, it can really help things at this stage, don't need anyone on your cases right now. Have to say that was a very quick dx, for some people here it has taken years, from symptoms to dx was 4 months for me.
Is there any chance that they could change the modulen for anything else? as zilla7777 mentioned, diet can really help but I have to say it took me years to find what worked for me as back then their answer to diet was complete different to what it is now. they believed diet had nothing to with symptoms, I was the first to fight the case of bowel rest to my GI's and they laughed at me, now it's common practice.
Don't let anyone make you feel like you are fussing, you are a mum, a worried mum trying anything to help your child, nobody here would fault that for a second.
Your right it is pants but it can get easier, I have been through remissions and flares but I live my life as best I can.

I know you will find great strength from others here, I have.

Gwen xxx
10-19-2011, 12:42 PM   #6
Tesscorm
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Hi Bubbly

Sorry to hear your son must deal with Crohns. My 17 year old son was diagnosed in the spring. He was put on enteral nutrition diet in an attempt to induce remission. We were not given the option of 'drinking' the formula (Modulen) and he ingests his formula overnight through an NG (nasal) tube. This has worked very well for him. Many people have said that they have had difficulties with the NG tube but, in all honesty, my son has had quite an easy time with the tube. Of course, he would prefer to not need it, however, he would not enjoy drinking shakes (especially if their flavour is 'questionable' LOL) and is able to insert the tube at night, have the formula and remove the tube before school. If your son is having a very difficult time drinking the modulen, perhaps tube feeding is something he would like to consider.

The treatment has helped my son considerably so, in my limited experience, I believe it is a treatment well worth attempting. There is a section under Treatment - Enteral Nutrition(???) where you will find much more info. This is the link - http://www.crohnsforum.com/forumdisplay.php?f=161

Don't ever worry about moaning and rambling here!! LOL We've all been there! Feel free to ask lots of questions, there are lots of knowledgeable members who will help you.

Good luck! I hope your son is feeling better soon!
10-19-2011, 03:27 PM   #7
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Bubbly....welcome to the forum. Sorry to hear about the struggles with your son. My son (10 1/2) was recently diagnosed after 6 years of trying to put the puzzle together....so you are very fortunate to have found a diagnosis so quickly. Our son was also having trouble in the growth department and also suffers from the cracks in the corners of his mouth as well. We were given the option of using Vital Jr for a liquid diet....he would have had to drink 1500 calories per day.....I can't even get him to eat that with solid food half the time.....and he is awful at drinking anything....I really have to stay on him....so I empathize with your struggle with that. We chose to start him on Apriso and added vitamins and supplements to his diet instead.....this was all finalized yesterday....so I have no update on his response to it as of yet. It is hard to go through for them and for us....have you investigated any support groups for yourself and for him? It certainly helps my son to talk about it and to let the disease have a "place at your table" make it an open conversation and include your oldest as well....this is kind of funny....but if you google famous people with Crohn's disease and point them out to your son it might help him feel a bit better about his situation....I did this with my son and he was really interested in it.....it also opened up conversations between he and his siblings.....just a thought. Hugs to you! You are not alone!

Farran7
Son dx with Crohn's 7/11
Apriso
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10-21-2011, 01:46 AM   #8
zilla7777
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Hmm, what do you mean by "cracks" in the side of his mouth? I was asked to join a test to see if something that I had was in relation to Crohn's. It was almost like an ulcer, but like the gum in a way separating lengthwise parallel to my teeth. Kind of in between your gums and your lips. They stayed for a month or so then dissappeared. Was what he had/ has anything like that?
11-01-2011, 08:50 PM   #9
kimmidwife
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My Daughter is really struggling too. She just started the the EN fully this week. Last week We let her have dinner. SHe is sad about everything and she is normally a very happy person except when having a bad flareup.
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11-02-2011, 01:17 PM   #10
Bubbly
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Sorry havent been on here recently, thought i would just update you all on progress.

Nightmare with modulen, ended up in A&E, he had lost 3kg in a week!! Put him straight on steriods, nasal tube wouldnt have worked for him at this time, due to he sometimes struggles to swallow, feels like he has a lump in his throat (his words).

Didnt really want steroids but have to admit the change in the last week has been amazing, been very cheeky, just like he used to be. Does get very weary, but generally doing really well.

Early days still, but fingers crossed things going in the right direction.

Thankyou to you all for your support so far x
11-02-2011, 01:38 PM   #11
Clarej121
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Hi Bubbly
Welcome !
My heart goes out to you & i can relate to your story.
My son was 13 when diagnosed, now 14.
We live in Dorset & Bailey is under Southampton Hospital.
Bailey did Modulen for 8 months via an ng tube, he was very confident & no one was horrible to him..
I don't blame your son for not wanting to drink it, Bailey wouldn't.
It is great for growth & giving him all the nutrients he needs.
i feed him every 3 hours & there is a machine your son can put in a back pack to get out & about.

So if you ever need to fall back onto Modulen don't rule it out.

I wish you all the luck, & if you need to chat i'm here

Love
Clare x
11-02-2011, 04:25 PM   #12
happy
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Bubbly,
Great news that your son is feeling better.

Sorry to hear that he had so much of a struggle to get there though

May he continue to improve, whatever treatment you, your son and the docs choose.
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11-02-2011, 10:12 PM   #13
Dogluv
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Hi! I am also a teen and my main form of treatment is the elemental diet. I did it for the whole month of June and it definatley wasn't easy! I use the peptamen formula and I add Hershey's syrup but it still tastes awful! After the month was over I got blood tests which showed that I was doing well so right now I'm currently doing 3 drinks a day with food and I also take pentasa.
When I was on the diet I felt so left out watching everyone around me eating I know how hard it is. Is he allowed mints and Popsicles? When I was on the diet it was a relif to have something that seemed somewhat solid. How long is he on the diet? A month went by pretty quickly for me and I found the best thing was to keep busy.
01-07-2012, 05:14 PM   #14
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My almost-12 year old son was diagnosed with ileocolonic Crohn's in December. He has been on exclusive enteral nutrition for 3 weeks. We are using Boost (1.5cc). He had blood tests at a little past 2 weeks and it had resolved his anemia and his nutritional profile is good. He still has an elevated ESR (Sed rate) and was throwing up in the evening recently, as we increased calories to 1800. Am curious as to what amount of calories any of you who did this used. My son is 58 lbs - a little over 1,000 calories is his basal level, and he was tolerating the Boost at 1,400 - 1,600 calories a day. We pushed up quickly to 1,800 calories (as weight gain is a goal) but since he isn't tolerating it, we aren't pushing the calorie increase.
01-07-2012, 05:30 PM   #15
Johnnysmom
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My son was diagnosed in October at the age of 11. Here in the States EN is not used so our Dr. prescribed Prednisone and 6mp for his maintenance medication. My son was losing weight and not growing as well. It was a struggle to get him to eat anything. The one great thing about the prednisone is that it increases their appetite and he was finally able to eat again. I didn't push the shakes too much because it was just making food and eating a struggle and in the long run I think it was just another bad experience that he related to eating. Johnny went from 89 lbs in September to currently 116 lbs. His ESR also went from 36 to 10 just 6 days after starting prednisone. He had a few minor side effects but otherwise it was not a bad experience at all. I felt like it was a good decision for us because I just wanted him to start eating normally again. I hope you find the right path for you and your son. It is such a hard decision and there isn't any right choice for everyone. We all just do the best we can. Hope your son is gaining weight and growing again soon!
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01-07-2012, 05:31 PM   #16
daisychain
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Hi
I have only joined this site tonight due to my son not being well and feeling as though I needed a bit of support.

however I know exactly how you must have felt my child was diagnosed at 9 years old and he is twelve next month. It has been a rocky ride and difficult for my 10 year old daughter. i do feel as though some people just do now understand

i just looked at the date of your message - can i ask how you son is now hopefully he is alot better .

Last edited by daisychain; 01-07-2012 at 05:47 PM.
01-07-2012, 06:22 PM   #17
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Thanks Johnny'sMom - for the info and the message that there is an "other side.". I am a bit scared of Prednisone as I hear most about the side effects first, but I know it is potentially a much faster route to remission than enteral nutrition. We are also in the US, at a teaching hospital, so enteral nutrition is not their standard first approach.
01-18-2012, 10:54 AM   #18
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Hi Ladies (and gentlemen!)

My son was diagnosed with Crohn's in November 2011 (he is 11 years old), after months of what we thought was lactose intolerance. Blood tests revealed high inflammation markers and anemia. He was 76 pounds at the time of the colonoscopy and endoscopy on November 18th, which showed mild inflammation at his terminal ileum. He was started on Prednisone 40mg and is just now tapering off. (5mg every other day). Currently he has no symptoms and is 90 pounds. However a Barium X-Ray showed narrowing in his small intestine, that his pediatric GI worries will form a stricture/blockage. She initially recommended Methotrexate injections once a week, but both my husband and myself are so scared of the side effects of long-term use.

While many doctors in the US do not push for enteral nutrition therapy, my son's doctor is from the Children's Hospital of Philadelphia (CHOP has a big enteral feeding program) and is very willing to do nasogastric feeding over night to try and reduce the inflammation, avoiding the use of some hard core medications.

I have so many mixed feelings about it. I am so scared for him. He has such a long way to go and is such an amazing and strong boy (as I am sure many of yours are!!) He got up this morning and was crying because he is so afraid of what is to come. Anyone out there have any experience with night feedings that I could share with him. He is worried that he is going to be sick all night throwing up and feel awful. His doctor is very positive and says the kids adjust quickly, but I know that my nerves are probably making his worse!

Thanks for all your help!
Jackman

Currently on 5mg Prednisone EOD - last pill 1/23/12
Pentasa 500mg 2, 3x a day
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01-18-2012, 12:41 PM   #19
Tesscorm
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Hi Jackman,

I'm so sorry your son has to deal with this! My son is a bit older, 17, but when he was diagnosed in May, his doctors recommended EN therapy using an NG tube (overnight). He did six weeks of the formula only (was allowed clear liquids, jello, broth, etc.) and then reintroduced all foods. His maintenance treatment has continued to be EN therapy. He ingests 1/2 the dosage nightly, 5 nights per week.

Keep in mind that my son is older and this may have had an impact on his experience with the EN therapy. He has had no problems. He learned to insert the tube very quickly - he was in the hospital when diagnosed, the nurse inserted the tube the first time, he did it the second and had the opportunity to practice a few more times before being discharged. He was 75% comfortable with the insertion within a couple of days and 100% comfortable within a week. I'm not saying it wasn't uncomfortable at first - he said it felt like getting water up your nose. I helped him with it for the first few weeks but he did learn the insertion fairly easily. He also had no problem with the tube with regards to friends - if a friend was over, his friends were curious about it and he had no problem letting them watch him do it. He actually had a friend stay over during the holidays, I asked him if he wanted that night to be one of his 'off' nights, but he said no because his friend wanted to watch him insert the tube! I guess 11 or 17, boys will be boys!

The formula has never made him feel nauseated. At full dose, he was ingesting 2000 ml per night (at approx. 200 per hour). The hospital started him at a much lower rate (I think at 20 or 50 ml/hr) and moved him up to 200 by the second day. They gave him the option of trying up to 300 ml per hour. We did this once in a while if the full 10 hours would have interfered with a later night or earlier morning. Now, he runs its at approx. 250/hr (with only half the dose, it runs for only approx. 4 hours and doesn't impact his schedule at all).

He also hasn't had any issues with the actual tube - some others have found that the tube can irritate the inside of their nose or the sensation of the tube is bothersome and painful (this sensation did bother my son for a few days but it was never painful and I think he just became accustomed to it).

I'm not sure if your son will also be eliminating food for a period - for my son, I think that was the most difficult part. While he wasn't 'physically' hungry during the day, there was 'behavioural' hunger when all his friends sat together at lunch. By evening he was feeling hunger as his feed would have ended by 7am and wouldn't start until 9pm. Broth, jello, helped but just a bit!

My son has had a fairly easy time with it but I don't want to imply there were no frustrations - being hooked up to the pump for 10 hours, at the beginning, was annoying and frustrating for him, although he has any two nights 'off' per week, he feels the loss of spontaneity (last minute sleepovers, etc.) at times and he's worried what will happen at university in the fall (should he go out of town).

I hope this helps and I hope your son finds it as easy an adjustment! If it works and for as long as it works, it's a great treatment option.

Good luck!
02-09-2012, 10:18 PM   #20
imaboveitall
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My girl, age 14, has been on NG formula feeds since dx, 3.5 years now.
I cannot say enough good things about its benefits.
She was in a very precarious place at dx, with extreme and rapid weight loss; at first, she was put on 3000cals/day, to be given over 24hrs. This lasted for a month.
She gradually reduced the time on the feeding pump and amt of formula needed, until now she is only using it at night during sleep.
I will add that she was never on "exclusive" enteral feeds; her doc allowed her to eat anything she felt she could tolerate, and at first she ate almost nothing. But within perhaps three months, she was eating EVERYthing and continues to do so.

She did have the NG tube indwelling for the first three months and went to school that way; then she began to remove it and insert it herself. The nutrition these kids get from this method cannot be beat. Though still with active disease, her nutritional status is not compromised.
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