03-19-2012, 08:21 PM   #1
Jackman
 
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Join Date: Jan 2012
Location: New Jersey
Hi There!

Well...in November 2011, my 11 year old son was diagnosed with Small Bowel Crohns...his F-CAL levels were 1200 and he was experiencing abdominal pain daily....He was immediately started on 40 mg of Prednisone and Pntasa 3 times daily. Due to some small bowel stricturing, his doctor wanted to put him on Methotrexate, which my husband and I didn't really feel comfortable doing so we started him on a medical liquid diet (80% of calories) for 8 weeks...Well...his blood work came back normal in early Feb and we are now waiting for stool sample results to confirm "remission". He hasn't had a belly ache since December! However,we took him to CHOP (Children's Hospital of Philadelphia) today and they suggested two options...Maintenance of liquid diet (70% of calories) ...(He Loves the shakes btw way...weird kid..hahah) 5 days a week and two days of normal eating....or Humira injections every 2 weeks....Any thoughts??? Humira is a little scary, but just wondering if a liquid diet, albeit a medically supervised one, is realistic for a pre-teen?
03-19-2012, 11:02 PM   #2
mickey
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Had been hospitalized in late teens for two ulcers in esophagus and had to live on liquid diet for over a month. I felt fabulous; since I was getting vitamins, minerals and had healthy movements. If med doc is monitoring and approves it, try it. At the very least it has reduced his inflammation on his belly. NOw, figure out triggers that also cause the inflammation. That will help as you return him to a regular diet.
03-20-2012, 12:50 PM   #3
Angrybird
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Hello and welcome to the forum. I can see where the dilemma l with regards to the liquid diet but if your son is liking them and it has shown a result then perhaps this would be the way to go over a med for now. What does he think about being in the shakes more long term?

I am not sure how much of a nosy you have had around here yet but please do check out our parents sub forum: http://www.crohnsforum.com/forumdisplay.php?f=49, I think this will be a great place for you as there are other parents here who are in the same position who can give some great advice and support.

Good to see you here and I hope you son continues to do well on the decided treatment plan.

xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
03-20-2012, 08:15 PM   #4
David
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Welcome to the forum, I'm glad you found your way here I'm pleased to hear your child is doing well with the liquid diet. I'm even more pleased that it was presented as an option for you in the first place as often it is not and as you've found, it can work VERY well.

We're here for you anytime. If you need anything, please let us know.
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03-20-2012, 09:54 PM   #5
DustyKat
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Location: New South Wales, Australia
Hi Jackman and

Good to hear your boy is responding well to Enteral Nutrition, YAY!

Angrybird has pointed you in the right direction with Parent's Forum, we have other parent's there with children on EN and also parent's with children on Humira. Please pop by as they are wealth of information.

Perhaps also take a look at the Humira Forum and the Enteral Nutrition Forum.

Whilst ever your son is well monitored and his progress continues in a positive direction I do not see why he can't continue on an EN diet the way the GI has suggested. It is the effects of chronic inflammation that cause the issues with growth and development so while ever that is controlled/absent then all should be well.

Good luck! I hope your son continues to do wonderfully well.

Dusty. xxx
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03-21-2012, 07:35 PM   #6
Jackman
 
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Hi again!
We visited our regular GI this afternoon and things are going well...although his calprotectin was still high at 750, it was FAR lower than it was in November =over 1250... Basically off the charts she said. hisLactoferin was 93, still high, but down from 303! So, she was pleased and willing to allow Jackson to continue with the shakes for another two months, however she did want to increase the calories ratio to 90%.. Rather than 80/20. While she did not feel comfortable with LDN since she doesnt have a lot of experience or knowledge of it, she was willing to try riflaximin, which is a new antibiotic that studies seem to show some improvement in inflammation. She also said she simply didn't understand the medical basis for LDN and how an opiate blocker could truly help, but again, she was willing to do a bit of research! ( she really is an amazing doctor!)

Needless to say, my son was thrilled as are my husband and I. We r still a little scared of the Humira and maybe have a little bit of time to try and improve his numbers so that we won't have to go that route yet. She was happy with the improvement so was willing to give a little more leeway!

Anyway, just wanted to share. Love having the support of people on the forum and I only just got here...lol. It is nice to know your not alone and people are happy for your small accomplishments!

Wish us luck!
Good night!
03-21-2012, 07:46 PM   #7
David
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That's great to hear! And yes, it sounds like you've got an amazing doctor
03-22-2012, 02:16 AM   #8
Angrybird
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Really pleased to see those numbers dropping, it's also good that you have found a really great doc
03-22-2012, 08:46 AM   #9
Tesscorm
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Great news! I'm glad he's still doing well! I hope it continues for a long while

What a great GI you have Will be very interested in hearing her thoughts on LDN!
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Tess, mom to S
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
03-22-2012, 02:38 PM   #10
charlie
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Join Date: Oct 2011
Location: Ireland
Hi Jackman,

2 years ago I was very ill in hospital with crohns. Came close to losing my colon. I was put on remicade as a last resort and have been in remission ever since!!
Remi is a strong drug like Humira so if you go down this road it may work wonders. All drugs have possible side effects.

Charlie.
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