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05-25-2012, 06:11 PM   #31
Farmwife
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Great news Mom. I'm sure he's feeling wonderful too.
It's funny, I would love to see my ribs again.

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05-25-2012, 06:18 PM   #32
Mom2oneboy
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LOL Farmwife! This whole concept of trying to put on weight is SO foreign to me!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
05-25-2012, 06:19 PM   #33
DustyKat
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Woohoo for S! What a fab update!

Long may it continue...


Dusty. xxx
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Mum of 2 kids with Crohn's.
05-25-2012, 08:55 PM   #34
crohnsinct
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YAY! We needed some good news around here! Keeps us all keeping on!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
05-25-2012, 09:16 PM   #35
my little penguin
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LOVE it when they gain weight.

Glad its working for you
05-25-2012, 09:33 PM   #36
Twiggy930
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Fantastic news!
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
06-04-2012, 02:10 PM   #37
Tesscorm
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Just thought I'd bump this thread up as there are a few new parents who may not have been informed about Enteral Nutrition and it's safety, nutritional benefits, success at inducing remission, etc.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-07-2012, 11:47 AM   #38
Jmrogers4
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I've been reading through all the EN threads as we are trying to figure out how to put weight on J. He has grown 1 1/2 inch in the last year but only put on a pound. He is now 76 pounds and 49/5". Not what you want to hear for a kid that will be 13 next month. He is currently on Imuran along with allipurinol to make it more potent as we had a hard time getting to theraputic levels with the Imuran and he was taking a higher dosage than his father who also has Crohn's. Blood test came back looking great so we can't figure out why he is not gaining weight, nor growing much taller. We are doing a calprotectin test this week to see if there is inflammation that the blood test is not picking up. He has been feeling pretty good except for a little bout about 2 weeks ago which I think was caused by too much stress and not enough sleep. He was playing baseball just about everynight, had several choir concerts and studying for end of year tests, he really stresses about his grades - he is a straight A student in accelerated classes. Then again maybe he just had a virus, sometimes it is so hard to tell.
His GI wants to switch him to LDN next month as he doesn't like to keep teenage boys on Imuran. I've been reading some good things about LDN and I hope it works for him.
GI gave us a huge bag of different ensure type drinks to see if we could find one or even a couple he will drink, he is such a picky eater. We are hopeful that we can jump start his growth and weight with some increase in calories, but if that doesn't work I'm glad I'm able to read about NG tubes and other ideas. I'm new to the forum and wish I would have found this earlier.

Jacqui
Mom to Crohnie dx 1/2010
currently: Imuran and Allipurinol
Wife to Crohnie dx 3/1993
currently: Imuran
06-07-2012, 12:43 PM   #39
Tesscorm
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Hi Jacqui,

Glad to hear your son's feeling good! And so great to hear that he's feeling well enough to participate in his activities and school! Woohoo!

As you probably read in this thread, my son has done well on EN (not completely in remission but feeling well). It certainly helped him gain back all the weight he'd lost plus some and has kept his weight stable. And, as he is also a picky eater, it alleviates my worries that he isn't getting the necessary nutrition. My son uses an NG tube at night and, due to both his pickiness and convenience, I don't think my son would switch from the tube to the shakes. Weeks ago, we were given some Modulen for him to try and, as yet, he has had no interest - is fine with the tube and overnight formula. Inserting the tube was truly not difficult for my son to learn but, he is older and I know some have a harder time with it... But, worth a try!

I also think it's fantastic that your GI is suggesting LDN!! Wow, that's the first time I've heard of a GI making the suggestion! It is what I would like to have my son try before he's moved onto medications.

Good luck! If you have any questions re the tube, etc., just let us know... There are a number of kids here using the tube. And, please keep us posted on your son's experience with LDN!

06-07-2012, 01:06 PM   #40
Mom2oneboy
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Welcome Jacqui,

I think EN is a wonderful way to put some good weight on him! My son takes his via NG tube at night but I'm also looking into getting the Resource Breeze Fruit Beverage. It's supposed to be more fruity tasting and less milk shakey and 8oz is 250 calories. I can't find it in any local store here but nestlenutritionstore.com has it and you can try a six pack for $12.99 versus buying a case of 27. If he likes the taste of it, I'll add that in addition to his nightly feeds. Seems my new mission in life is to see how many calories I can pump into my son each day...LOL. The other day he said, "Mom, you're not going to make me fat are you?" I told him no I just want to make him healthy!

Good luck with whatever you decide. There's no right or wrong thing to do. You just have to do what will work for you and your son.
06-07-2012, 01:42 PM   #41
Jmrogers4
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I will definitely update you on the LDN after reading about it on here I'm kinda excited to try it but at the same time worried about taking him off what seems to have been working for him so far. I also love that his doctor is open and reading about new therapies. We are really lucky since there is only one pediatric GI office in town with 3 doctors in it.
He did try the Boost Resource Breeze in both orange and wild berry so far. Orange was not a winner as he said it had a nasty after taste which his brother agreed as he took a sip as well. However the wild berry was pretty tasty we all tried a sip and it really tasted like a Capri sun juice box so I ordered a pack of it. I'm hoping we can find another flavor that he likes so he doesn't get sick of it and not drink it. He is trying the peach flavor today.
He is really worried about having an NG tube. He goes to Camp Oasis and I know one of the boys in his cabin last summer had an NG tube so maybe he can talk to him first hand this year and get some first hand info. I love the friends and support he has made a camp.
Thank you for the support and response.
06-07-2012, 01:54 PM   #42
Mom2oneboy
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Oh, that's good to know about the Breeze drinks. I had planned to order the wild berry as he's not a huge orange or peach lover. Think I'll go do that now while I'm thinking about it. Thanks!
06-07-2012, 07:41 PM   #43
crohnsinct
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Posted on O's thread but just so we have it here in EN thread:

Got O's blood results at the 5 week mark with EN and the nurse reports that all her basic bloods have improved! Doc didn't call me right after results came in requesting to see us again and that is a first since diagnosis 4 months ago.

She still hasn't gained any weight since starting and energy hasn't gotten to pre crohns level but we are avoiding adding another drug to Remicade and that was our goal.

After 4 months of fighting I finally feel like I can rest.

Oh and for those of you considering EN...O's Crohns is in her entire colon, some stomach and rectum and she has used Prednisone prior....so please don't let colonic involvement or prior prednisone use discourage you!

We are waiting to hear from doc on how to proceed but I plan to have her continue 2 shakes a day even after transition.

Thanks to everyone for your encouragement and advise!
06-07-2012, 07:43 PM   #44
Farmwife
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See I'm even happy for you on this tread!
06-07-2012, 08:37 PM   #45
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Yay so happy to hear about O's improved bloodwork!! Time for the happy dance in CT!!!
06-18-2012, 07:53 AM   #46
Mom2oneboy
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bump
06-18-2012, 05:20 PM   #47
ChickensRule!!
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Hi everyone!! I Currently am the ensure diet and have been for 4 weeks! I am petrified of the tube so I chug back 8 a day. It is REALLY hard you get horrible food cravings and it is hard not to just quit somedays. Only one week left yay! It does work really well though and I think it put me in remission, still really new to this I am also taking prednisone with the en, because my case was severe. Good luck!
06-18-2012, 05:24 PM   #48
Mom2oneboy
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Hi everyone!! I Currently am the ensure diet and have been for 4 weeks! I am petrified of the tube so I chug back 8 a day. It is REALLY hard you get horrible food cravings and it is hard not to just quit somedays. Only one week left yay! It does work really well though and I think it put me in remission, still really new to this I am also taking prednisone with the en, because my case was severe. Good luck!
Congrats on making it this far!!!! I admire all who do this...including my son. It cannot be easy but hopefully you have gotten some good results from it that make it worth while.
06-18-2012, 05:31 PM   #49
ChickensRule!!
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Thank you! Congrats to your son to!
06-18-2012, 08:57 PM   #50
crohnsinct
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Holla chickensrule! Just like my little girl! She is petrified of the tube and agreed to choke down whatever and however much the doc wanted! You go! I can't imagine going 6 hours without food let alone 6 weeks. I hope you are seeing the same success that O is seeing and that it is all worth it for you!
06-21-2012, 02:05 AM   #51
secondday
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My son was diagnosed with CD in March. He's 11yo, has stunted growth and was suffering from stomach pain, fatigue & constipation. We live in Italy and his doctor put him right on Modulem with NEC as a suppliment to help the taste. My son was on the liquid diet for 8 weeks and began adding solid food about a month ago. He still has inflammation but it was reduced by half. He no longer has any stomach pain or fatigue and his appetite is back. I've started him on SCD in hopes of allowing him to heal without strong medication. He now eats a solid diet of select foods, drinks a ltr of Modulem a day, and takes an anti-inflammatory with each meal. But he's not gained any weight. (I thought he had gained a couple pds but yesterday morning he weighted himself and his weight was back where he started.) His doctor wants to put him on Remicade. It seems like such a dramatic response. We head back to the states in a couple months so I'm thinking perhaps we'll wait until we move to take the next step. But still I worry. My son's an identical twin and his brother is 3 inches taller and 15 pds heavier.
06-21-2012, 09:38 PM   #52
momoftwinboys
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My 10 yr old son was dx last October and he is an identical twin too. His brother is 20 lbs heavier and a little taller. I do think he has closed the gap some on height. It is difficult seeing the difference every day, a constant reminder. We do not have experience with EN or remicade. I think if you post your story in the parents of kids with ibd you will get a bunch of info of parents with more experience.
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
06-22-2012, 10:56 AM   #53
Tesscorm
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Hi secondday,

As momoftwinboys mentioned, you will likely see many more responses if you post a separate thread in the Parents' forum

I don't have experience with Remicade but my son has done EN (initially, formula only and now, as maintenance, with food). However, he did gain a considerable amount of weight. He had lost approx. 25 lbs prior to diagnosis and, within 3 months of starting EN, had gained back 30 lbs.! While on the formula only, his weight gain was small, 10+ lbs., the bulk of the gain was when we reintroduced foods (no special diet). His GI and dietitien believed that, while on the formula only, he had a limited number of calories (3000 per day) but he was very active (2+ hrs per day of phys.ed. plus two hockey teams) and this combination prohibited him from gaining more weight. Once he added back food, he was able to instinctively adjust his caloric intake (and then gained much more). Is your son very active, perhaps, his activity is keeping him from gaining more weight?? Not suggesting to limit the activity! But, perhaps more calorie dense foods would help (I'm only barely familiar with the SCD diet).

I would also be a little concerned about beginning the Remicade now... side effects are always a concern for all of us , however, my concern would be more re your upcoming move. I know little re Remicade, so please look for more info , but my understanding is that very often, once you discontinue Remicade you build up antibodies and can't restart. I would be worried that there might be a break in his treatment during your move and time to resettle and then you may have a problem restarting the remicade??? Just something to consider and discuss with your GI as delaying any treatment may not be a good idea either

Good luck!
06-23-2012, 01:02 PM   #54
crohnsinct
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Hi secondday, my daughter (12) was diagnosed 2/1/12 and was put right away onto Remicade and prednisone. She gained 10 pounds right away but I think that was due to prednisone. When we discontinued prednisone symptoms and inflammation returned and she stopped gaining weight (actually lost 2 pounds). Doc suspects now that we are introducing food weight will come on.

Just a thought, if there is inflammation perhaps he isn't absorbing his nutrition to the best of his ability?

I would be interested in waiting to start Remi until in the states and settled with a new doc. Perhaps a course of prednisone to get inflammation under control until you get here (but yes I know none of us likes steroids and maybe a couple of months is too long for steroids? I am not very well versed on steroid use).

Tess corm is correct in what she says about starting and stopping Remi so you would probably have to time everything very well.

Tough decisions...Good Luck and keep us posted!
06-27-2012, 03:30 PM   #55
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has anyone found a way to supress food cravings whilst on enteral nutrition, if you have please help, im 15 and have at least a month left to go and i'm finding it really hard not being able to eat, thanks
06-27-2012, 03:51 PM   #56
Tesscorm
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Hi there,

My son did the six weeks of formula only last year, he was 16. Are you allowed clear fluids? He was allowed broth, clear juice, etc... he would have broth when he really wanted 'food', wasn't great but it was, at least, something.

He had the formula overnight through NG tube, so other than the broth, he had no shakes or anything during the day... so, as well as the cravings, he often found he was 'hungry' by dinner so he tried to distract himself and make plans for the evening, even if it was just 'meeting' up with friends online.

If you're having shakes during the day, I'm pretty sure you can freeze them - I know the taste is the same but, at least, it'll 'feel' like you're eating.

I wish I had better suggestions for you! Maybe someone else can come along and suggest something!

There's also a teen forum here - I know lots of teens are on EN, you might be able to get suggestions from members on that subforum too!

Good luck!!!!!!!!! Doesn't help much while in the middle of a craving but it really is a great treatment, helped my son tons and has no side effects!
06-27-2012, 04:04 PM   #57
crohns1996
 
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i'm only allowed water and no added sugar diluted juice, i don't have any shakes because the taste of them makes me feel really ill how do i access the teen subforum as im new here haha, thanks for your help anyway!
06-27-2012, 04:19 PM   #58
my little penguin
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Do NOT freeze the shakes- unless they are "extras" for the day.
this will destroy any nutritional value they have.

Chewing ice chips helps- We were allowed plain sugar so we would sprinkle some. BUt usually he just chewed the ice.
06-27-2012, 04:20 PM   #59
crohns1996
 
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thanks for the advice, unfortunately i have quite sensitive teeth and even ice poles sometimes hurt them, but i'll try anyway, thankyou
06-27-2012, 05:47 PM   #60
Tesscorm
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Thanks for jumping in MLP!! I wasn't aware that freezing would damage the shakes!

crohns1996 - I think if you try to access the teen forum (I believe it's under the Support forum), you'll be prompted with instructions to gain access. Hopefully, David or Dusty can jump in with instructions.
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