Need advice w/8 yr old daughter w/crohn's

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tnvolunteer
New Member


Date Joined Jun 2009
Total Posts : 14
   Posted 10/23/2009 1:37 PM (GMT -7)   
My daughter was diagnosed w/Crohn's 2 days after she turned 8 in April this year.  She has the disease from her esophagus & throughout her entire digestive tract, although it is sporadic, it is all over.  Anyway, we did the usual coarse of steroids and remicade & then weaned her off the steroids.  Now she is on Pentasa, Prevacid, Remicade.  (in addition to fish oil, pro biotics, multivitamins, ect).  Anyway, she has diarrhea the day of her remicade.  not sure, could have been from the hamburger we ate after the IV (most likely was).  Her energy level has been up as as her appetite.  She no longer complains that she wants to go to bed at 6:00 and she likes to be playing with her friends and has good color in her face.  Additionally, she is not complaining of being achy.  Poops are usually solid, but quite large.  Sometimes they are green and occasionally sometimes there is blood in the stools.  She also can go a few days w/out belly aches, but she still does have tummy aches.  Is all this normal?  Is she considered to be in remission?  I don't know & I get so many conflicting stories I don't know what to believe.  I need some guideance.  Is the remicade not working?  I don't want her to go back on steroids.  They were horrible.  she gained 14# in 2 weeks.  Also, her weight increased from 45# to 68# and she is now at about 64-66#.  should i be concerned because her weight has dropped some or is this still from the steroids which caused her to pack it on?  Just looking for some answers.  Thanks all
TNVolunteer Mom
-------------------------------------------------------------------------------------------
Mother of 8 yr old w/CD
DX: 4/09
Pentasa 500 mg/bid, Remicade, Prevacid 30 mg/day
Fish oil, Probiotics, Miltivitamin, Liquid Aloe, Folic Acid, B6, B12


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/23/2009 1:50 PM (GMT -7)   
Well I wouldn't want to say whether or not she should be back on steroids since I'm not a dr. However, I think her disease remains active (maybe -see below) - but stable - from your brief description. The weight loss could be from the withdrawal of steroids - if she's in the normal weight range for her age I wouldn't worry.

The blood indicates either disease activity or hemmoroids, the latter being less of a concern. If her energy is good, her gut doesn't hurt most of the time and her weight is normal than I'd say the remicade is doing what it should. As for remission I guess it depends on where the blood is coming from. The green stool is somewhat unusual. I wonder if it's bile...
 
What does her GI say?


33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


tnvolunteer
New Member


Date Joined Jun 2009
Total Posts : 14
   Posted 10/23/2009 2:17 PM (GMT -7)   
Her weight is probably where it should be.  She looks healthy.  Dr is not concerned about greenish stools and the blood is only occasional.  It is lighter blood which likely means it is from the lower end of the GI tract which can likely be from a hemorroid. 
 
My husband thinks she likes to "play me" at times when I say something she doesn't like.  IE, eat your green beans... Oh, my belly hurts.... do you want ice cream after dinner?.... yes,.... my belly is better now?  Make sense? 
 
I guess this will just be something that we'll both have to learn to deal with until better treatments are developed (and I'm told that there are a lot currently in the developmental stages). 
TNVolunteer Mom
-------------------------------------------------------------------------------------------
Mother of 8 yr old w/CD
DX: 4/09
Pentasa 500 mg/bid, Remicade, Prevacid 30 mg/day
Fish oil, Probiotics, Miltivitamin, Liquid Aloe, Folic Acid, B6, B12


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/23/2009 2:28 PM (GMT -7)   
Haha, yes there could be some manipulation going on there. I know this disease is hard on the whole family.

Yes, try to be positive about it - I think there will be many new treatments coming on-line soon.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 10/23/2009 5:24 PM (GMT -7)   
Hi Tnvounteer,

My 12 year old started with Crohn's on 5/07, and was finally diagnosed on 10/07. She is 12 years old now. She also has the disease in all the digestive track, even on her upper lip.

The first time around she responded very well to treatment with PRednizone. She also went on 6-mp. She had a new flare in June (probably because she skipped doses), and the Prednizone did not work.

We were faced with the possibility of Remicade. The same day the GI spoke about it I got a book from the Public Library about enteral nutrition. The book is brand new, (june 2009) but the treatment has been around since the 60's and has tons of clinical trails to prove it is effective especially in children. Enteral nutrition is the first line of treatment in other countries as Great Britain and Japan. I don't undersatnd why doctors don't suggest this line of treatment here. My GI said it wa beacuse it is hard to do. The book is "Beat Crohn's Getting to remission with enteral nutrition" By Margaret Oppenheimer.

Basically my daughter is drinking a formula (called an elemental formula) as her only nutrition. She will be doing this for 6 weeks. The formulas we have tried are Peptamen Jr., Vital Jr. and now Splash E028 (the best tasting one). It is not easy, but the disease symptoms disappeared immediately. Even when we were giving her the formula as a supplement of her regular diet, her Bowel Movements were less frequent and formed. Before that she was having constant diarrhea, pain, cramps, vomits. With enteral nutrition she is Symptom free, and her sed. rate (indicator of inflammation in the blood) came down from 53 to 23 in a week!

You might want to discuss this with the GI.

Wishing you and our family health and happiness.
Mom of a 12 year old girl diagnosed on Oct. 2007.
Prednisone (tapering off)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Total enteral nutrition with Peptamen Jr and Vital Jr.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/23/2009 7:19 PM (GMT -7)   
tnvolunteer said...
I need some guideance. Is the remicade not working? I don't want her to go back on steroids. They were horrible. she gained 14# in 2 weeks. Also, her weight increased from 45# to 68# and she is now at about 64-66#. should i be concerned because her weight has dropped some or is this still from the steroids which caused her to pack it on? Just looking for some answers. Thanks all


I would guess the weight drop is still from the prednisone. Just a guess, though...

I am so sorry your daughter is having to deal with this! I remember the heartbreak (for both my husband and me) of the first many months. In fact, it was about a year after my son's diagnosis when we all collectively exhaled and felt like we could relax a bit. We had been following the diet for about 9 months and he had been in remission for several months at that point.

Probably no one here can tell you if she's in remission or speculate on whether the Remicade is working. Her GI should be able to answer those questions for you. Don't hesitate to call them and ask more questions! Speak with your GI and/or his/her nurse as often as you need to! Never think you are "bugging" them. That's their job!

Yes, I remember the steroids...they were horrible. I believe it was the prednisone that convinced my son that he would try *any* diet put before him rather than to ever have to go back on it. We started the Maker's Diet and followed with the Specific Carbohydrate Diet (book "Breaking the Vicious Cycle", by Elaine Gottschall) and he's done amazingly well ever since! If you care to read more discussions about the diets, click on the links below in my signature. I'm just sharing the diet info because it might be something you would want to do in conjunction with your daughter's meds.

Also, as Catasmom said, total enteral nutrition is an option that, for some strange reason, doctors do not inform you about. As she mentioned, the book, "Beat Crohn's", by Margaret Oppenheimer is an excellent resource! My son also once did total enteral nutrition for about two weeks to stop a flare. It worked like a charm!

I hope your daughter continues to show progress! :-)
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 10/23/2009 7:47 PM (GMT -7)   
being this is a chronic disease one needs to make some wise decisions on what foods to consume. Diet has a connotation of weight loss, but this is not for weight loss, rather to avoid foods that might aggravate her. She needs to figure out which ones, and have some responsibility for learning that. so you/she can better determine if the cause of the tummy aches might have been from food. You should let the doctor know about them however as they might be from the disease or from the meds.

The idea of having a few extra pounds is better than being underweight because if the disease becomes more aggravated having some weight to fall back on can be helpful to get through a rough bout of symptoms. should you be concerned about significant weight loss, yes. about 3 or 4 pounds um well as you said she is no longer relying on the prednisone which has the ability to cause weight gain. so this is the time to get to whatever weight (plus a few pounds) where she should be at this age for her height.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/24/2009 6:58 AM (GMT -7)   
Hi, Volunteer Mom,
 
You've already received plenty of great tips. I just had one thought to add. I noticed your daughter is taking aloe. Aloe is a laxative and can be tough on the gut when taken internally. Maybe it might be worth stopping the aloe to see if she has fewer stomach aches. If constipation is a problem for her, there are other remedies that that could be gentler on the stomach; I'm sure your GI could help with suggestions.
 
Hope she continues to respond well to the Remicade. It's good she looks healthy and has energy.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/24/2009 7:17 AM (GMT -7)   

Speaking as an adult with disease in her throat, mouth, and spotty throughout I think it is might be questionable to ask someone with disease in that location to eat green beans. That could be like taking sandpaper to open wounds.  

Plus sometimes you just want to be normal and so you try something that would cause you pain.

Plus lets face it ice cream is also comfort food.

I personally lived off of milkshakes for about a year, because my disease was just too severe to eat normal food.  I still cannot eat beans or leafy greens, because not only do they cause me pain, bleeding, plus the chemical burn of the RING OF FIRE, and they come out a couple hours later just like they went in (you see the tooth impressions). I suspect that the green stool and bleeding is probably more like too fast of a transition time (Rapid Transit Time)  from mouth to anus (it can also be from green foods or food dyes), one of the stages of digestion in the small intestine is the green bile, so the texture (inadaquately digested food) of the food is scraping her tender intestines as it passes thru too quickly (the stool would be brown if it spent an adquate amount of time in the large intestine).  Think about when you have had bad d and your stool was green and you had it so often that you bleed from it, not a fun experience.  

What do you like to eat when you have acid reflux (not saying she does have it, but she might not be able to articulate the chemical burn of the pain, but if she is craving milk products I wonder if her body has just figure that home remedy out) and the stomach flu?

See if her tummy aches are due to acid reflux?  I found a combination of acid control and pain meds work ok, but I do have constant abdominal pain and will distend due to eating and therefore get more pain around my waist band.

I know this sounds weird, but I have found a fuller fat menu (but not greasy menu, just more cream base sauses, soups, etc), as it slows down transition time.  Plus watch the texture of her food (about mash potato consitancy, very creamy mac and cheese are about as exotic as it gets).  Nothing acidic, no roughage, nothing you would not give to a kid that only has two teeth.  I noticed a difference within a couple of days, but I still cannot eat applesause(because it is still too rough somedays), no corn, no roughage (unless juiced but you have to wait until the bleed stops).

Plus I have found those viactiv calcium chews help a bit too with slowing down the transition time (but it might be too much and make her too solid).   

Just a caveat... I am a former marathoner, who became overweight with disease.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/24/2009 1:57:55 PM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/24/2009 10:52 AM (GMT -7)   
Her daughter didn't say the beans hurt her - she said her belly hurt - and then she said it felt better when she was offered ice cream. I would do the same thing if I was 8.

But I don't claim to know what her daughter it thinking, you could be right. Perhaps a visit to a dietitian is in order. I'm not going to get into an argument about this - and will extricate myself from this thread to avoid getting off topic.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/24/2009 11:30 AM (GMT -7)   
I just wonder if she might not have the ablility to articulate that in the face of such an attitude from father. It is different for boys then it is for girls (not that we are all little angels or little demons from time to time). I also trust a mother's instinct. Is it possible that she could be "working" being ill: Yes.  But at her emotional and physical developmental stage it could be much more damaging to "not" believe her.  Frankly I would not discount bleeding so easily at that developmental stage.

It was hard for me to articulate the pain that I was feeling and the symptoms I was having when I was 29 and getting a couple of doctoral degrees. When you are really sick it can cause cognitive problems.

By the way I am certainly not saying no veggies forever for her. I am just saying you might have to change the texture of them in order for them to be more digestable. I am also all for the sneak veggie (i.e. spinach/beans food processed/milled in the avacado and salsa dips). Once she stops bleeding.

Just as someone who has disease in their mouth and downward, I just get that ice cream is very soothing.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/24/2009 12:42:35 PM (GMT-6)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/24/2009 12:26 PM (GMT -7)   
Thanks, MMMNavy for rewording. After I read it, I deleted my own post, since it no longer applied.

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 10/25/2009 8:37 PM (GMT -7)   
I would recommend reading Breaking the Vicious Cycle and also Jini Patel Thompson's book. It's worth a shot, especially early in disease course.
Crohn's Colitis diagnosed 6/08
SCD since 4/09
Remicade since 6/09
Boswellia + Acidophilus
Remission

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