I HAVE A 3 YEAR OLD WHO HAS GIVEN THE LIKELY DIAGNOSIS OF CROHNS DISEASE

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BSMOM
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Date Joined Aug 2010
Total Posts : 3
   Posted 8/19/2010 10:01 PM (GMT -7)   
My daughter has has blood in her stool off and on as well as seemingly constant diarrhea for as long as I can remember and although it has been brought up to her pediatrician it was dismissed as no big deal.  After I kept asking she finally got an abdomal xray which I was told she had inpacted stool and we just needed to change her diet. about 2 months ago the blood in her stool started to increase to actually being intertwined in her stool as well as dripping from her bottom.  I then damanded something be done and was referred to a Pediatric GI who gave her a colonoscopy and concluded that she had mild inflamation probably caused by a milk allergy.  A few day later she got what seemed to be the stomach flu and with that an extreme increase in blood in her stool.  She was passed around from doctor to er to eventually heading to the hospital where she had the colonoscopy done.  It turned out she had a bacterial infection but while investigating that this amazing doctor, the only one who put her history and her being sick together, found her whole intestines were inflamed when her colon would be the only thing inflamed from the diarrhea from the infection.  We are waiting on final test results to conclude if she has Crohns Disease or Inflamatory Bowel Disease.  She is currently on VSL #3 probiotic, a low sugar diet, and no dairy (or as little as possible).  Her bowel movements are still irregular with occasional blood so I'm trying to do everything I can to get this under control but it seems as though everything I read keeps contradicting itself.  The doctor is wanting to put her on prednisone tommorow but can she have a reaction to it since she is so young and her belly is obviously still sensitive.  So I guess I'm just looking for advice on what to expect as we go along and what can I do that has worked for others.  Also does anyone have small children that are dealing with this?  Thank u in advance for any kind of advice or guidance because it is truly an awful feeling to not be able to help your child. sad

vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 8/20/2010 1:24 AM (GMT -7)   
I am sorry but I don't really have any answers for you. I am sorry though that your daughter is having to go through this at such a young age. Someone may come along with some answers for you, could I suggest that you try posting on dragonpack IBDers, it is a parent support group and there are several parents there with young children who may be able to offer advice more relevant to your daughters age.
You must be feeling pretty daunted right now, there is a lot to take in but once they 'hit' on the right drugs things can stabilise(may just take a while to get there)
Good Luck

dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 8/20/2010 5:50 AM (GMT -7)   
Awww I'm so sorry. (((hugs)))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 8/20/2010 6:44 AM (GMT -7)   
I'm sorry. My four year old has UC and it is a living nightmare. Having said that, I've spoken to many parents who have treated their children's IBD naturally. Others prefer meds. It really depends on which route you want to try. I have tried many things which have worked for others but nothing has worked for us yet (including front line meds, and I'm not willing to go higher up the chain at the moment).
I'd start to look into dietary treatments first. Have you come across the Specific Carbohydrate Diet yet? Please google it and get Elaine Gottschal's book. It might be the key for you.
Good luck

potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 8/20/2010 7:03 AM (GMT -7)   
So sorry you are dealing with this in such a young child. I know the helplessness a parent feels when their child is ill and mommy can't kiss the boo-boo and make it feel better. I have a chronically ill daughter who is in her late 30's and been through so much (not Chrohn's) and my heart aches for her.

My advice is to find a GI you like and trust and let him guide you through decisions regarding meds, tests, etc. Prednisone is commonly prescribed to get the inflammation under control. And, in my experience (I've had Chrohn's since I was very young, but wasn't diagnosed till I was 19) prednisone worked well, even though the side effects are not pleasant.

If you need any help or just need to vent, you are in the right place. There are many caring and kind people here who truly understand the emotions and frustrations of having this disease and can offer advice or just lend an ear.

Sending my prayers and hugs to your daughter and you.
Potty Pooper

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2010 7:27 AM (GMT -7)   
Hey BSMom and welcome to Healingwell's Crohns Forum. I always hate to hear of little ones having this dreaded disease. First off I want you to know that its not a death sentence, but it is a chronic and incurable bowel disease. Alot of the stories you will read on this forum are usually those who are really sick right now, but there are others with Crohns who are out there living life so we don't hear from them. The Dragonpack forum is very good too, especially for young children such as yours.

As for the Pred, it is usually a short term med they try first to get the inflammation down. There should be another medication added to it, which will be the medication to help get the Crohns back into remission and be used as a maintenance med. I wish you the best of luck, and be sure she is always seeing a good GI "YOU" are comfortable with.

God Bless,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/20/2010 10:20 AM (GMT -7)   
Probiotics, no dairy, no sugar, all sound like an excellent start. Prednisone can be very helpful for the little ones, in short term lower doses. Make sure she takes it with breakfast.

The only other things I would recommend are giving her a very natural diet (no processed food) and maybe even try a gluten free or wheat free diet for a while, in addition to the no dairy and no sugar.

Give her lots of healthy food and natural food and low acidic fruits and veggies and preferably mushy/soft food too. You should probably cook veggies and some fruits very well, and use a little honey and olive oil or real butter for flavour.

If you get desperate, a lot of moms put their kids on the Specific Carbohydrate Diet or the Maker's Diet or both. Kids usually get some relief with these too.

I hope your child feels better soon.

Best wishes.

foxy48
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/20/2010 11:29 AM (GMT -7)   
BSMOM, Please, please also try the Specific Carbohydrate Diet. This is helping me, and it has helped so many other people and kids too! Buy the book Breaking The Viscious Cycle, and go to pecanbread.com for a quick start before the book gets to you. This could really help your child. The author of the book had a 4 year old who was sick too and this made her work hard on helping others.

I am so thankful for this diet. I am on no meds and so far hadn't had to be, but I did try the diet first to make sure it would work and so far it has.

Good luck to you, your family and your little one.

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 8/20/2010 11:52 AM (GMT -7)   

I have a 10 yr. old girl who was diagnosed with this last year at age 9.  First let me say, I'm so sorry you and your child are going through this. It's truly scary when you don't know what to do next, or how to help your innocent child. I've felt that same way. 

As for what to do, I would highly highly agree with those who have recommended that you read "Breaking the Vicious Cycle" by Elaine Gottschall.  This book may be a strong first step toward healing and understanding.  In our case, my daughter refuses to eat the recommended foods and so we went the medicine route. She is doing much much better a year later and has gone back to life as normal (most of the time), except for the fact that she now has daily meds to take. We did start her with prednisone, which had her gain about 20 lbs. and blow up like a balloon, but most of the swelling and about 10 lbs of the gained weight dropped off within months of stopping the medication.  Personally, I'm still hoping that when she matures she'll be more willing to try the Specific Carbohydrate Diet discussed in the book as I do believe it would promote better health and less Crohn's complications.  Perhaps since your child is only 3, you'll be able to manage her diet and change it quite easily.

Thank goodness you finally found a doctor to recognize what is happening to your poor baby! 


BSMOM
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/20/2010 1:32 PM (GMT -7)   
Thank you all so much for your feedback.  I know it's awful to know so many people have to go through this but I am thankful to hear that it is manageable (hopefully without meds or as little as possible) and I'm not alone.  When I try to talk to friends and family about it I get the "What the heck is that?" response which makes me feel so isolated and alone on this.  So I'm very appreciative for you all.  I will be getting the books mentioned as well as the diet info to try as well.  These sound like a great place to start and hopefully give me more understanding of this awful disease.  I wish you all good health and good health for you loved ones.

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 8/20/2010 2:29 PM (GMT -7)   
So sorry that you have to be here. The following is also a great forum for support especially for Parents of Young IBDers:

www.dragonpack.com/ibdsupport/parents/
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/20/2010 4:46 PM (GMT -7)   
Sorry it took so long to get your daughter diagnosed!
 
The SCD diet mentioned by MoobyDoo and foxy might be worth a try. It eliminates sugar (but honey, fresh fruit are OK), grains, processed foods, fluid milk but allows meat, poultry, fish, fresh fruits and vegies, eggs, aged cheese, homemade yogurt. More information about the diet, including the introductory version of the diet, is at www.breakingtheviciouscycle.info  The book, "Breaking the Vicious Cycle," is sold in many bookstores and on Amazon. 
 
Treatment options, including diagrams and pics, are included in this link to the Johns Hopkins Library: http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_id=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E 
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 8/20/2010 5:51 PM (GMT -7)   
OH...and we all forgot to mention this diet, help, recipes, etc. are also detailed on the website www.pecanbread.com.  It's a great site. Personally, I bought a Yogourmet yogurt maker and I do make yogurt even tho my child is not on the diet. Yogurt has many trillions of probiotics as compared to a packaged, capsulized probiotic.  If your child will eat it, the yogurt option is way better than any bottled probiotic IMHO. 

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 8/20/2010 8:47 PM (GMT -7)   
BSMOM said...
Thank you all so much for your feedback.  I know it's awful to know so many people have to go through this but I am thankful to hear that it is manageable (hopefully without meds or as little as possible) and I'm not alone.  When I try to talk to friends and family about it I get the "What the heck is that?" response which makes me feel so isolated and alone on this.  So I'm very appreciative for you all.  I will be getting the books mentioned as well as the diet info to try as well.  These sound like a great place to start and hopefully give me more understanding of this awful disease.  I wish you all good health and good health for you loved ones.
I'm so sorry 2 hear about your child I have had my disease now 4 24 years I was diagnosed when I was so sick and under weight with alot of pain I was 10 when my symptoms first started,,,I know its very overwhelming 2 get all this info chucked @ u @ once its scary and the not knowing is even worse,,,Lets pray that this little girl finds the answers she needs and u as well,,,I would contact a good GI one that is easy 2 take 2 and up-front,,honest,,and there just 2 answer your questions...My mom had a hard time dealing with my sickness @ first that didn't change much but now she is really informed and that helps me from having 2 x plane myself endless times and they included her in ever step cause she felt so helpless as u said but all kids sick kids really want is mom 2 tell us we r going 2 b ok,,my mom rubs my belly when I'm in pain and get cool face clothes 2 lower my fever just b there I'm now 35 years old and I call my mom not my husband 2 travel 4 hours into the city 2 c me cause my local hospital transfers me 2 an out of town hospital and its always late at night like 11pm ans if she can come in the ambulance cause she has work in the morning she calls in first thing in the morning and b there with me by 8am no later and she stays right in my room with me she either sleeps with me or a hard old cot the TV room in a broken chair or the Point Pleasant Lodge which is 4 people with low 2 moderate incomes cause it gets expensive 2 stay in the city sleeping/eating and traveling its a great organization,,they also have a shuttle 2 take u back and forth and anywhere else u need 2 go,,I felt better knowing she was there and getting her rest at night and not waken every time they came in to give me a needle or do my vitals....JUST B THERE MOM TAKE CARE OF YOURSELF FIRST CAUSE WE NEED YOUR STRENGH....))))hugs((((  <# <3 <3  ~jEN~

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

BSMOM
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/20/2010 9:39 PM (GMT -7)   
Thank u all again.  I am going to get right on those books and reciepes tommorow.  I tried to sign on that dragonpak website but I can't see the security word in the registration form. :(  Ill try again later.
 
onthecan:  Your message had me balling like a baby.  I seem to be the only one holding it together for my little girl because I don't want her to be scared.  My husband doesn't even like to talk about because he just wants to cry and the rest of the family seems to get frusterated and cry to me because they are worried and they don't think I'm giving direct answers.  The truth is though I am giving them all the information I do know it's just not clear for me either.  I have an 19 month old son and am due anytime with our second daughter which only gives me more anxiety because I don't want to have to stay in the hospital to recover with my c-section while my daughter is going through this.  Your post made me cry because sometimes when I have to be strong and almost handle all this on my own to protect her... dispite me getting torn up inside I know now that it is helping her.  Even though I feel so helpless in "fixing" her I guess I am doing something for her that does help and mean something.  Thank you.  I am doing all I can to be knowledgeble and understanding for what she is going through now and for what to expect in the future.  Sounds like you have a wonderful mom because I have that dedication to my babies also and sometimes it can be extremely rough and tiring but it's amazing the strength you get just from the love you have for your child.   :)  Even if this disease is not something you can avoid or change it sounds like there is a way to make it tolerable for her and I am so thankful to have found this website with all this support and understanding.  Thank u again and I wish good health for you!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/21/2010 7:47 AM (GMT -7)   
Just remember one thing here, no matter what diet you choose your child MUST include a maintenance med at all times. Diet and medications must be considered as complimentary of eachother. I personally follow the low residue diet and for "me" it works very good and its less restrictive than the SCD diet. But I also take my maintenance meds daily. Good luck and hugs to your little one.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 8/21/2010 9:53 AM (GMT -7)   

BSMOM - Oh, please don't cry!  Stay strong and do what needs to be done to help your daughter feel better.  Things WILL get better and she can lead a normal productive life with Crohn's.  As my daughter's doctor says to us regularly (which always makes us feel better)... "Crohn's shouldn't control you or your life.  We will help your daughter manage this disease so that she can live a normal happy life like everyone else." So far so good for us. Stay positive, it helps!

 

PS. Others here have found great help and healing by doing an elemental (liquid) diet.  Try looking into an option called EO28 Splash for children.  Some put their kids strictly on this liquid diet until remission of symptoms sets in...then reintroduce foods slowly. Others use it as a supplement to food.  You will find it if you Google it.  Good luck!  (My daughter drinks ENSURE regularly to keep weight on and for nutritional purposes...but only like a bottle to 1/2 bottle of it per day.)

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