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Help my 14 year old son?

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Crohn's Disease
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Posted 9/2/2007 9:26 PM (GMT -6)
I cant sleep tonight! My 14 year old was dx with CD at 11. TO make a long story short he is on maximum treatment and failing. He has severe malabsorption problems and his Vit. D is  LOW. We are going to blast him with half a million units of Vit. D over 3 weeks period. I am scared to death. He can have kidney problems so were adding a diuretic and some other meds to help his kidneys. I am nervous. Pleeeeeeeeeeease tell me someone on this board has gone through this and been ok?
Posted 9/3/2007 6:59 AM (GMT -6)
I Have not been through all what your talking about but I do have the malabsorbsortion, went from 285ilbs to 160lbs in about 12 months and Im sorry to here about whats going on. What medications has he been on. Have you tried any of the Bioligcals? Remicade? HUMIRA? Ive only been on HUMIRA about a week and I already have noticed a change for the first time. Have you considerd changing GI's? Maybe a fresh perspective could shed some light or offer a new treatment option. We'll keep you in our prayers.
Posted 9/3/2007 8:01 AM (GMT -6)
HI Chaya I was wondering if your son gets any sunshine absorbing Vit. D threw sun.lol gail
Posted 9/3/2007 1:06 PM (GMT -6)
Of course he gets sunshine lol. All the ways to get Vit. D have been explored and he has 4 hospitals working on his mal absoption problem. Boston childrens, CHOP AI and not sure where the research Dr. is from. They are doing everything possible he is just a non-responder to treatment so far. Hopefully the half a million units will work! knock on wood

Posted 9/3/2007 5:17 PM (GMT -6)
Knock, Knock!! Seriously though, I sincerely hope the drs get things figured out soon. I hate to think of a child suffering with this dd. We'll pray for your family.
Posted 9/3/2007 9:44 PM (GMT -6)
I hope they find the right treatment for him. (((hugs)))
Posted 9/4/2007 6:23 AM (GMT -6)
Hi Chaya So when do the treatments begin? Sure sounds like you have plenty of hospitals working on this.Was wondering if he has tried Remicade and Hum.? You mentioned all tretments have failed so was wondering what has failed him in the meds.Much love being sent your way. lol gail
Posted 9/4/2007 10:24 AM (GMT -6)
I have not been through this, but wanted to let you know I will say a prayer for your son, the doctors, you and your family.
Posted 9/4/2007 10:36 AM (GMT -6)
My daughter suffered from growth failure because of malabsorption. She did a NG tube at night and was able to absorb nutrients that way. Just my thought on my experience. She was finally able to grow. Chaya, you are in my thoughts and prayers. Let us know how it goes.
Posted 9/4/2007 10:48 AM (GMT -6)
Try the maker's diet, it increases vit. and mineral absorbancy. It also reduces crohn's inflammation.

The first 30 days are hard, but after that it gets easier.

Post Edited (Roni) : 9/4/2007 10:54:36 AM (GMT-6)

Posted 9/4/2007 8:27 PM (GMT -6)
Right off the top I'll tell you that I haven't got any advise for you on this. I can only extend my compassion and prayers. I too have a 14 yr. old with CD. Other than the malabsorbtion, how is his treatment going? Best of luck to you.
Posted 9/4/2007 9:09 PM (GMT -6)
I was dx'd at 12 and symptoms since 5. I fully believe that your son will get this under control. It takes time to get this disease under control sometimes.
Posted 9/5/2007 3:37 AM (GMT -6)

dear Chaya:

i hope that when you recieve this message your son is very well..

i don't have an advice but i can tell you that iam 23y old and i also have problems with kidney since i was 16y old and because of it i had 3 surgeries(one in 2000 and two in 2004)! before the last two surgeries my maximum weight was 43kg now i am 49kg and even with this problem i don't feel that it controles me at all..it comes and goes sometimes without any clear reason..i wish that your son will not see what i saw with surgeries..but it is not too bad as it looks..

but i don't understand what is (Vit. D)..?

i will pray for your son,

Posted 9/5/2007 10:49 AM (GMT -6)
Wow, tough thing to go through at 11 years old. Tell him to hang in there.

A lot of Crohn's patients have various malabsorption problems, but it sounds like your son's is pretty extreme. I personally have a problem with vitamin B12. I take B12 injections every month as a treatment.

As for the diuretics, I'm on those too. I was tend to loose a lot of calcium, and that creates kidney stones. The diuretics work pretty well. That and a lot of water keep things flushed out.

I really hope and pray that things turn around for you son very soon. It must be extremely difficult to see your child going through this. He's lucky to have someone there with him.
Posted 9/5/2007 10:13 PM (GMT -6)
get on a cod liver oil supplement for vitamin D. garden of life and carson labs make good ones imho. but it must be cod liver - that is higher quality than say a fish liver oil.

if the meds arent working perhaps it is time to look into naturopathic/alternative medicines? i'd do diet changes first. check out the maker's diet and the specific carbohydrate diet. people with CD and UC have reported good results with these (maker's did wonders for me). i'd go organic and gluten free. and eliminate dairy for a while to see if that helps too.

might be worth getting a vitamin b-12 supplement. you want a subingual one (ie under the tongue, either in drops or a lozenge that dissolves). or get injections.

this is what immediately comes to mind. best of luck!
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