My child has Crohn's

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MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/3/2009 6:41 AM (GMT -7)   
cry    Just posting to share my frustration.  I do not have Crohn's myself, but my daughter does. She was just diagnosed this past March after a few mysterious months of weight loss, stomach pain, diarrhea, fatigure and fevers. She lost almost 20 lbs.! She is ONLY nine years old. OMG. 
 
We are still feeling rather "new" to all of this. She was scoped, diagnosed and treated with predinisone which helped almost immediately.  She is currently taking Pentasa, along with omegas, probiotics (VSL #3 and a Custom Probiotics formula), Forvia multivitamins and calcium.  She "had" been doing well all summer up until about the last two or three weeks. Now she is just beginning a new school year and is experiencing pain and diarrhea and lots of gas.  What a horrible way to start a new grade.
 
Is there something I am missing?  I feel so helpless against this disease...like I am unable to help my own child feel better. Soooo frustrating.
 
Has anyone here tried probiotic enemas?
How about fecal transplantation?
 
 

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/3/2009 7:31 AM (GMT -7)   
No, I don't think you're missing anything! It sounds like you are doing everything you can think of! Unfortunately this DD is a huge mystery...

I can only share our experience, and I'm happy to do so. I feel your pain of the feeling of helplessness. There were times when it overwhelmed me... If you care to email me personally, you can click on the little yellow envelope under my name on the left.

Your story sounds a lot like ours... After his original diagnosis, my son had a setback after finishing his prednisone, then again about 3 months into following his new diet (we started with The Maker's Diet). His setback occurred after school was back in full swing in the fall... He followed a semi-elemental diet for 10 days (considered by researchers to be as effective as prednisone to elicit remission) and it really did the trick! That was nearly two years ago now. He has had no further setbacks and follows the SCD closely. Hope that helps a tiny bit... Oh, and welcome to the forum, but I'm sorry you have to be here... I hope your daughter feels much better very soon!
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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2009 8:00 AM (GMT -7)   
Could your daughter be stressing about the new school year starting? Sometimes an increase of stress can cause flare like symptoms. Just wanted to share that with you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*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 9/3/2009 11:21 AM (GMT -7)   

Thank you, both of you, for responding to my post.  At the time of her diagnosis, I remember asking her doctor specifically about dietary restrictions and he told us to stay away from nuts, seeds, rye, etc.  No problem, we said...she's only 9 and doesn't like those things anyway.

Other than that, he said diet does not play a part in Crohn's and did not trigger this disease in her.  I find that a little hard to believe. When she eats pizza and/or anything tomato sauce she gets an almost instant stomach ache.  Fried foods like french fries seem to be a trigger too. Other than that, I'm just not sure...maybe chocolate? Ice cream?  Hard to figure out just yet, but we are trying.

I do have a younger son, 6 yrs. old, who is not diagnosed with an IBD but who does have classic autism. I feel strongly there exists a gut brain connection with these spectrum disorders and do feel there's somehow a link between my son's autism and my daughter's IBD now.  I am familiar with the special diets associated with both, i.e. gluten free-casein free, SCD, Body Ecology, etc.  Being only 9 years old and not wanting a huge life change for my daughter, we were very happy when the prednisone seemed to kick Crohn's in the butt and she got better so quickly.  But honestly, I'm not a great fan of these heavy duty meds and am nervous now that she will need them too often for comfort.  Can either of you share your experience with dietary intervention? My daughter is extremely resistent to SCD and is a very very very picky eater which would make this all the more difficult.

Thanks so much.

P.S. I'm very seriously considering giving her probiotic enemas using the VSL#3.

youngun
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/9/2009 12:55 PM (GMT -7)   
i am so sorry to hear about your daughter it is not a nice thing having Crohn's... i am only 18 myself and have only been diagnosed with Crohn's this year. i am very worried myself about things that are happening to me and hope that talking will help. i was getting slightly better as the year progressed only to have a bit of a setback this last month.

Crohn's is a nasty thing because at the moment there is no cure for it only ways of supressing it temporarily. as for diets i have been told different people are affected in different ways and so it is really a case of trying different things and avoiding the ones that have the worse effects... for me personally i have had to give up beef which was a blow as it means mainly chicken for dinners leading to no variety.

in a way your daughter is lucky because she is able to learn about things she will have to face early and will b strong and confident later in life when it flares up but at the same time i feel pained that such a young person is made to suffer through this horrible ordeal. i wish i could help you i truly do. i wish doctors would find a way to heal people from crohns and make any proceedure such as seton placements less painful... its truly unfair

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/9/2009 1:14 PM (GMT -7)   
The SCD diet might help with autism as well as Crohn's. See link below:
 
 
Looks like the Pentasa, which is a fairly mild med and for many, not effective, might be running out of steam...what dosage is she on?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/9/2009 1:15 PM (GMT -7)   
I could be wrong, but seem to recall the fecal transplant helps Ulcerative Colitis rather than Crohn's.

vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 9/9/2009 5:06 PM (GMT -7)   
I have long suspected the MMR vaccination as being the trigger for my diagnosis of Crohn's and since your daughter has Crohn's and your son is autistic (which has also been linked to the MMR) is just too coincidental.  My first Crohn's symptoms occured 13 days after a MMR vaccination at the age of 44.

tnvolunteer
New Member


Date Joined Jun 2009
Total Posts : 14
   Posted 9/9/2009 5:16 PM (GMT -7)   
I have a very similar situation.  My daughter was diagnosed with Crohn's on 4/6/09, 2 days after she turned 8.  Her symptoms came on rather quick (that I noticed) right before X-mas in 08.  I did some research and had a strong suspicion it was Crohn's.  I took her to the GI, she was scoped & was given the confirmation that it was Crohn's down her entire GI tract.  While she has the disease throughout her digestive tract, it is sporatic.  She was hospitalized on gut rest for 1 wk.  We had to make a quick decision as to what course of treatment to take.  A friend of mine is an adult GI dr and when I told her the doc wanted to start her on Remicade (i freaked out), she told me that you have to hit the disease hard.  This is what we did.  We eventually weaned her off the Prednisone and Entocort (after she gained 14# in 2 wks).  When this all started she weighed 45 pounds, she is now a healty 68#.  She is on Remicade every 8 wks and Pentasa.  I also give her the usual, probiotic, 2 multivitams (one w/iron), Vit B12, B6 & Folic acid & liquid aloe.  She is doing much better.  I am the one who needs some valium because I am constantly worrying about her getting sick.  However, I have just come to the conclusion that I cannot prevent it, what will happen, will happen and I will deal with that when it comes. 
 
This is a crappy thing to have to deal with and I sympathize with you given that you have a child with autism as well.  I too suspect this disease has something to do w/antibiotics.   My child was on sulfa based antibiotic for 2 yrs as a preventative because she was diagnosed very young (6 mo) with urinary reflux.  She then outgrew this.  This is only my two cents.
 
Anyway, the disease is not a death sentence and kids are resilient and can become whatever they want.  I would do some research on the Remicade.  Perhaps she might have some luck with this. 
 
On a side note, I research this disease constantly and believe there are tons of new medications down the pipeline.  There is even a potential cure for MS (another auto immune disorder) for which physicians believe might also work on Crohn's and other auto immune disorders.  The "cure" was found in mice when scientists fused two human cells together.  Because the cells come from the body, there is no foreign substance and no side effects.  I pray every day that there will be a cure.  Treatment for this condition (and others) has come a long way in a very few years. 
 
Please feel free to contact me, I would love to be in touch with another who has a child with this condition.  My daughter will be attending Camp Oasis this summer (thru CCFA) to meet other children like her.  God Bless and take care.
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


curedcrohns
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/9/2009 7:58 PM (GMT -7)   
I'M SO SORRY TO HEAR OF THIS VERY DIFFICULT SITUATION THAT YOU AND OF COURSE YOUR DAUGHTER HAVE TO FACE.
 
I HAVE SPENT THE LAST 15 YEARS OF LIFE SUFFERING FROM CROHNS SINCE I WAS 13 YEARS OLD. BUT I HAVE SPENT THE LAST TWO YEARS CHANGING MY LIFESTYLE ACCORDING TO ALL THE RESEARCH AND INFORMATION COLLECTED BY DOCTORS(MAINLY NUTRITIONISTS) AND MY OWN EXPERIENCES. :-) PLEASE DON'T WORRY, I CAN GIVE YOU SOME VERY IMPORTANT INFORMATION THAT WILL! HELP YOUR DAUGHTER GET BETTER AND EVENTUALLY LIVE WITHOUT ANY SYMPTOMS OF CROHNS smilewinkgrin .
 OK THERES ALOT WHERE DO I START....
 
YOU ARE ON THE RIGHT TRACK WHICH IS GOOD CAUSE YOU CAN SEE YOUR DAUGHTERS REACTIONS TO CERTAIN FOODS
AND YES FOOD AND DIET IS THE #1 THING YOU HAVE TO TACKLE FIRST CAUSE IT AFFECTS EVERYONE WITH CROHNS.
THE REASON WHT SOME PEOPLE SAY DIET IS DIFFERENT BETWEEN PEOPLE IS BECAUSE EVERYONE HAS A DIFFERENT BLOOD TYPE AND YOU BODY REACTS TO DIFFERENT FOODS ACCORDING TO THAT BLOOD TYPE AND REACTS DOUBLE FOR PEOPLE WITH BOWEL DISORDERS. SO THE FIRST THING YOU SHOULD DO IS GET YOUR DAUGHTER TESTED BY NATUROPATHIC DOCTOR, THIS TEST SHE NEEDS IS CALLED "ELISA BLOOD TEST".
SHE WILL GET A LIST OF FOODS THAT ARE REACTIVE OR NON REACTIVE TO HER PERSONALLY.
IF SHE STAYS AWAY FROM THESE REACTIVE FOODS (INCLUDING DAIRY LIKE CHOCOLATE, WHEAT, ACIDIC FRUITS AND VEG LIKE TOMATOES, FRIED FOODS LIKE FRIES, RED MEATS LIKE BEEF, FOODS HIGH IN SUGAR) THEN SHE WILL BE ON TRACK TO FEELING BETTER.
 
I HAVE BEEN ON PREDNISOLONE AND PENTASA AND CALCIUM FOR 15 YEARS AND ALTHOUGH SOMETIMES I WOULD FEEL OK FOR EVEN A FEW WEEKS THE PAIN AND DIARRHEA WOULD ALWAYS RETURN.(PREDNISOLONE WAS THE ONLY THING THAT HELPED AND AFTER 15 YEARS OF TAKING IT I HAVE THINNING OF MY BONES AND MIGHT HAVE OSTEOPOROSIS) I HAD LOSS OF APPETITE AND COULDN'T KEEP MY FOOD DOWN AND LOST EXCESSIVE AMOUNTS OF WEIGHT. I HAD A VERY TOUGH TIME ENJOYING MY TEENAGE YEARS AND HAVING TO DEAL WITH CROHNS...............BUT :-)
FOR THE LAST YEAR I HAVE STOPPED ALL MY MEDICATIONS(WHICH I COULD NEVER GET OFF WITOUT SICKNESS BEFORE) AND HAVE HAD NO SYMTOMS OF CROHNS DISEASE AND I HAVE NEVER FELT HEALTHIER AND FEEL LIKE I WILL HAVE A VERY LONG AND HEALTHY DISEASE FREE LIFE NOW.
ALL BECAUSE OF A FEW SIMPLE THINGS.....BUT
 
IT'S NOT JUST HER DIET THAT WILL HELP. PROBIOTICS ARE GOOD AND SO IS CALCIUM BUT PURE COD LIVER OIL IS THE BEST SUPPLEMENT SHE COULD TAKE.
I HAVE BEEN SEEING A CORRECTIVE CHIROPRATOR FOR A YEAR, I KNOW YOUR THINKING WHAT? MY DAUGHTER DOESN'T HAVE A BAD BACK! BUT CHIROPRACTICS ALIGNS THE SPINE WHERE YOU DON'T KNOW IT'S BENT AND HELP THE BRAIN SEND THE MESSAGES TO YOUR BODY ORGANS TO KEEP THEM DISEASE FREE AND HEALTHY. ALL THE NERVES IN YOUR BODY BODY RUN FROM YOUR BRAIN THROUGH YOUR SPINE AND TO ALL YOUR ORGANS.
SO IF YOUR SPINE IS ALLIGNED PROPERLY THEN YOUR BODY CAN START TO HEAL ITSELF WITHOUT MEDICATION THE WAY IT WAS MADE TO DO.
 
I KNOW I WROTE ALOT BUT THERES ALOT TO TELL YOU, I'M TRYING TO FIND A WAY TO TELL EVERYONE. I WAS AT THE POINT IN MY LIFE AS A GROWN MAN WONDERING WHAT ELSE MY OPTIONS WERE OTHER THAN SURGERY(THATS WHAT THE DOCTORS SAID, BUT THEY DON'T KNOW MUCH about CROHNS DISEASE)AND TAKING DUGS TO HELP ME THAT WILL ONLY MAKE YOU SICKER IN THE END AND WONDERING IF I'D EVER LEAD A NORMAL LIFE WITHOUT HEALTH COMPLICATIONS.
 
 AND AFTER A LONG ROAD OF DICIPLIN TOWARDS HEALING MYSELF WITH GOOD DIET, EXCERCISE AND CHIROPRACTICS HERE I AM, smilewinkgrin LIVING PROOF THAT THERE IS A CURE TO CROHNS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! BUT IT'S NOT MEDICATION skull   PLEASE CONTACT ME WITH ANY QUESTIONS, I HOPE I HAVE HELPED YOU TOWARDS HELPING YOUR DAUGHTER. X

ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 9/9/2009 8:45 PM (GMT -7)   
curedcrohns: I would love to hear more about the diet you used to relieve symptoms...

curedcrohns
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/10/2009 9:40 PM (GMT -7)   
It's pretty straight forward and obvious once you realize we were born to consume raw natural foods that come from the ground and not processed foods and fast foods with harmful and unnatural ingredients.
Start by cutting out all fast food, that's the most important
Then cut out any frozen or microwavable foods
Cut out highly sugary junk food.
Try to cut down on intake of red meats, chicken and fish is ok
Cut out dairy products, these are highly reactive to Crohns
 
Now that you've cut out the bad...eat the good
Eat as many raw and fresh fuits and vegetables as you can everyday.
Eat fresh herbs and spices, all these are healthy
Take supplements, some good ones are:
-iron
-a good probiotic
-slippery elm bark powder
-vitamin D
-calcium
- *** FISH OIL ***(cod liver oil) this is highly beneficial in many ways
there are more depending on the individual
 
Get lots of excercise!
 
If you stick to this diet and cunsult a Nautropathic Doctor for more info you will notice a difference quite quickly but it does take a while to heal scar tissue that has been inflamed for months or in some cases like mine, years. If you try this for a week and think "I'm doing good I'm going to go have a meal at Mc Donalds" then you've basically wiped out the week of good you've done for yourself. Believe me I've tried it. It takes dicipline and understanding. If you don't think that fast food is bad for you and a few veg wont help then you can't be helped. It took me a long time to really understand enough to help myself but now it's all I know and I've never been healthier. smilewinkgrin
 
Good Luck
 
P.S. Corrective Chiropractics is the Final step but theres not many of them around, there not your normal one crack your better
Chiropractors. But they've cured many illnesses and diseases
 
 

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/11/2009 6:58 AM (GMT -7)   

I'm in agreement with most of what curedcrohn's said, except:

Raw foods can be very hard for Crohnies to digest. In fact, as the SCD diet recommends, with active inflammation and especially strictures, it's often best to cook vegetables like carrots, broccoli, etc., until they are soft...otherwise, particles can become stuck or cause lacerations in inflamed intestinal tissue.

Furthermore, our bodies are often better able to digest cooked, rather than raw, foods. For instance, the vitamin A in carrots is more bioavailable when they are cooked -  also, cooked carrots should be served with fat added....olive oil, butter, etc...because vitamin A is fat-soluble, so the fat helps to absorb it.


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/11/2009 6:59 AM (GMT -7)   
 
TN Volunteer:  Sounds like we are in the same boat. Email anytime. blush   
 
CuredCrohns:  I am very intrigued. Have pursued this natural/biomed route for our autistic son with no results, but do believe in the power of natural healing and diet.  I will definitely look into the Elisa Blood Test. Knowing her food triggers would be a HUGE help... I know it's happening, but right now knowing which foods are setting her off is just guesswork. She's nine and as such is very sad to think she may not be able to eat her favorite things. And YES, her favorite things are happy meals, hot dogs, steak and ice cream.  She HATES fish. Very frustrating to see my child suffer.  Please pass along any additional info. you have. Thanks so much. idea
 
*I have removed your email from your post so the spammers don't start hitting it.  Please post it in your profile, so others can email you from there*  :)

Post Edited By Moderator (Nanners) : 9/11/2009 8:06:07 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2009 7:07 AM (GMT -7)   
Mooby Doo and CuredCrohns, I want to point out one MAJOR fact to you both. There is "NO" cure for crohns. You can go into remission, but there is no cure at this time.

Regards,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*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 9/11/2009 8:02 AM (GMT -7)   
Nanners:
 
Thanks and don't worry. I know there is no cure for Crohn's, although I truly hope and pray there will be someday. Right now, I'm going for disease management to help get my little girl into remission so we can both actually enjoy life and sleep at night. shakehead
 
As for my profile, I would like to add my email but sadly I can't figure out how to edit my profile. Can you help? Thanks!
 
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2009 9:57 AM (GMT -7)   
Yes up top is "control panel" go into that and then click edit profile.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/11/2009 10:58 AM (GMT -7)   
In the same boat also. My other DD came down with stomach flu at Christmas 2007. Older DD caught it ( or so I thought) but it wouldnt go away. She lost 20 pounds in about 6 weeks and had a colonoscopy and was told about the Crohns. Dr.wanted her on Remicade and I cried and cried (in private of course) but relented.She was literally wasting away,losing her hair. She had her first infusion and for us anyway it was a miracle.SHe literally was better overnight.She was like that for 7-8 months and I almost thought dr. was wrong or a very mild case.

She became allergic and we havent been able to find anything else to work.Humira didnt work.Now we are on 6mp and Pred.We'll see what happens.

It is devastating and I feel helpless at times but I do believe that modern medical science will figure out the why of Crohns and then will be able to treat it or maybe even cure it effectively.

If you would like to chat I would also like to hear from others with kids going through this. My dd started middle school this year which is hard enough when you are healthy!

Hugs to all of you that have been afflicted with this @#@## disease.

Fran

kandc88
Regular Member


Date Joined Sep 2008
Total Posts : 65
   Posted 9/11/2009 8:43 PM (GMT -7)   
There has been quite a shift in treatment since I was diagnosed 12 years ago.  I wish I had been treated much more aggressively.  A start with less severe drugs and a progression to harder core drugs as failure to remain in remission occurred...Which may not be too bad a plan if you stay on top of the inflammation and progress rapidly from drug to drug if treatment fails.  What I've found to be the case is that doctors don't readily admit when a drug isn't working until things are so bad that they have progressed from inflammation to scar tissue that requires surgery to remove.  I've gone this route 3 times and now have a lot less intestines than I wish I had.  A more aggressive treatment protocol would have definitely been in my best interest and so I'm suggesting that you seriously consider some of the drugs that may seem scarier to you.  If at all possible look for a doctor who specializes in Crohn's.  I just switched to one and she said that most GI's probably only have 5% of patients who have CD.  She was very confident about my treatment path going forward and I sure hope her aggressiveness is exactly what I need to keep me healthy after my third resection.  I'm currently 4 weeks post op and am able to eat most things.  I was told to wait till week 6 when most of the swelling will be gone to try introducing raw fruits and veggies and salad.  I am able to eat cherries, strawberries, blueberries, grapes, onions, and many things that I have not eaten in YEARS!
 
Best of luck to you and your daughter.
 
PS.  I think a diet of "real foods" is the best plan of attack.  That means for me limiting all processed foods.  If it can sit in the pantry for a year and still be edible, I don't eat much of it!  I also take vitamins and probiotics.

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/12/2009 12:01 AM (GMT -7)   
My daughter exhibited her first symptoms of Crohns at age 5 and was not diagnosed until age 18 just before her first fistula appeared. Because she was tall for her age and on the chubby side the GI dismissed her symptoms. One thing that might help your daughter reduce the stress thing is to make sure her teachers all know that when she has to use the bathroom it's RIGHT NOW, not when they think it's appropriate. Not all teachers are aware of the diarrhea side of Crohns and a note to them might give them a bit more understanding.

Please tell her she is not alone in this. Wish there were a kids with crohns site.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2009 7:01 AM (GMT -7)   
Jeannie there is a site for parents of children with Crohns. Its called dragonpack ibd. I think you can google it and find the address.

Hugs

Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Crohn's Kid :(
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 9/12/2009 10:30 PM (GMT -7)   
Mooby, a few random thoughts. 
 
My 13yo son ('m dad) was diagnosed about 3.5 years ago I wish I had started him on remicade right away.  It really does help.  This past summer at Camp Oasis the DR told me rem has changed everything.  Kids at camp rarely have pred because so many of them are doing great on rem. It makes my son feel a lot better, he looks forward to getting it.  Unfortunately his perianal fistualas haven't healed like we expected, and he actually gets rem every six vice four weeks.
 
Went to an EXTREMLEY informative IBD conference in Atlanta last month.  Mayo, Cinci Childrens, DR K or Emory...all the brains.  Learned alot..... here's what I took away:
 
Get this.....you know how many drugs are currently approved for use by the FDA for CD??????  ONE (remicade).  All the others that are used are not indicated specfically for CD.  And rem has only been around for 10ish years (don't quote me).  YOU READY FOR THE GOOD NEWS? (forgive my yelling moderators, I'm excited wink ) Right now there are 25 drugs in the pipeline (and close to coming out) which attack FIVE different aspects of CD (immuno, cellular, etc).  Plus, get this, they have ID'd something like 25 genetic markers for IBD.  One DR (DR K) said that in a few years he see's a time where they won't say you have CD,UC...but IBD 17, or IBD 5.  Then, they won't putz around with drug A...they'll jump to drug F which they will know is more effective against your particular strain (?) of IBD.  As he put it, you wouldn't go into a shoe store and see a pair you like and try it on....you'd measure your feet and limit your 'try on's' to shoes of your size.  I said all that to say this.... TIME IS A FRIEND!!!  With each passing day, new stuff is coming!
 
This next concept has literally taken me three years to grasp.  DON"T think long term.  If your child's treatment leads to a good quality of life...that's what you look for.  That's what the docs discussed.  Is she okay in school, have a social life, generally happy, able to keep a job.....you get the point.  That's my new mantra with my sainted wife when we get our thrice weekly teary-wet pillow parties.....our son is a great kid with friends.  He does well in school.  He wakes up smiling every morning despite his constant reminders on his bottom.  What else could a parent ask for.
 
Lastly, be your kids advocate.  We talked to every one of my son's teachers from the fifth grade up until now.  We laid out the deal, and he has a no questions asked hall pass.  He sits back by the door in all his class so he can slip out need be.
 
No way around it.....THIS SUX!  But you know, I told my wife on day one, if we hear Himalayan camel wee cured someones CD.....we'll pack our bags, study how to ID Himalayan camels against others, and build up a thirst for camwee.  That's what parents do.  To date, those miracles don't exist.  Hit is hard medically from the go and BIDE TIME.

Post Edited (Crohn's Kid :() : 9/12/2009 11:33:08 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/13/2009 6:53 AM (GMT -7)   
Crohns Kid just wanted to welcome you to Healingwell.  I am so glad to hear your son is doing so well, and I have to tell you I love your outlook for your son.  I think you will be a comfort to the other parents we have on this site.
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Crohn's Kid :(
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 9/13/2009 10:35 AM (GMT -7)   

Thank you.  It took me awhile to get here.  I've always been a whimp when it comes to my kids....overly smoochy, hopping in bed with them in the morning and singing goofy songs to wake them up....lot's of kisses and hugs.

It's cliche', but true, I'd give my health, my pension, my home......all of it, to have a healthy son.  I fight the urge to be jealous of healthy friends of my son (hey, I'm human).

But at the end of the day it comes down to an old story I heard about a man who found himself in a dream standing in a big room of crosses (fill in the blank for Stars of David, etc).  He tried lifting several and couldn't.  Finally, when he found one he could lift he looked on the back and there was written his name.  Right then a voice could be heard and it said: "Those other crosses weren't yours to carry.  The one with your name was given to you because I knew you could carry it."

BIDE TIME.  Live life.  Hug, hug, hug.

 


joe m
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/18/2009 2:01 AM (GMT -7)   
hi moobydoo,
hi everybody,
im 39 now and ive had crohns for about 18 years, and all of the specialists that ive seen said that diet does not play a part in Crohn's. i know that we are all different but with me the docs are wrong.
when i first got crohns i was about 21 although i wasnt diagnosed till i was 25 when i got a perferation and had to have a resection.(i was eating a lot of nuts at this time and think this had apart to play because of there abrasiveness).
at the beginning i didnt have much(if any) control of my bowels, the thing that helped me the most was cutting out dairy,and beef it was hard because i love milk and cheese.
i also know that the single worse thing that i eat is KFC, it goes through me like a rocket, but i love it and still treat
myself a couple of times a year, drumstick in one hand toilet paper in the other. i have known about the kfc thing for a long time but never looked into it until recently, anyway after a bit of googling i came accross this and think that its something we should know about. its about msg, and it is added to loads of things.

www.msgtruth.org/whywe.htm
www.healthy-holistic-living.com/msg-side-effects.html
www.healingwell.com/library/allergies/kaemmerer4.asp

all the best to you all
joe
"NEVER TRUST A FART"

Post Edited (joe m) : 9/18/2009 4:36:33 AM (GMT-6)

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