# Welcome to Parents of Kids with IBD



## Guest (Jul 13, 2010)

we have set up this section of the forum specifically for parents or guardians of children who are suffering with Crohn's, Colitis, or any form of IBD.

sadly it seems there is a need for this, as more and more parents are joining and posting about their child's experience with IBD issues.

in here you can share your experiences, and ask anything you wish - you will be amongst others who are in similar situations, and who understand.

this section of our forum has two Forum Monitors - DustyKat and Dekxy - who will be on hand in here regularly to help you, in addition to our other members and staff.


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## Silvermoon (Jul 13, 2010)

Awesome idea!!  And you couldn't have picked two better monitors, Ding!


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## belle1999 (Jul 13, 2010)

Very good idea!


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## Dallies (Jul 13, 2010)

This is a great idea, I am sure we can all support each other through good times and difficult times.  Thank you xxx


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## qfu (Jul 13, 2010)

can't wait to get some helpful ideas


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## gypsigirl28 (Jul 23, 2010)

awesome idea, I am so glad I found this site


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## momtocrohnsgirl (Sep 5, 2010)

hi everyone. new to the site. just joined last night. so my daughter has crohn's. any suggestions on good snack ideas for a 10 yr old, that is no wheat, no dairy, no nuts, seeds or popcorn. all the traditional grocery store kids snacks are out...they mostly ALL contain wheat. and raw fruits and veggies are too hard for her to digest. so there goes another catagory. and yogurts/cheeses don't work either. we scrap for ideas. anyone w/ good suggestions...please step up!!!


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## Crohn's 35 (Sep 5, 2010)

:welcome: momtocrohnsgirl!  So glad you joined our family type forum!  Diet is very hard and everyone is different.  I use to make zucchini loaf (kids dont know it is there) and used all the gluten free products and made lots so I could freeze it individually.  There are muffins, and cookies you can make too. The ingredients are in the health food store except the zucchini of course, the bigger the better.  I used to grate it when they got big, and put them shredded in the freezer.  It is a natural way to make things moist. Fat and oils are hard to digest. I use Rice milk for alot of my cereal which most 10 year olds wont like but she will learn to like it, or she pays the price.  Applesauce homemade is great, or rice crackers, yeah have to check the labels. One good brand of cookies in the health food stores are Snickerdoodles, they are high in calories and no gluten I love them but I have to stay away from them... I dont have a problem gaining weight .  

Others will come on and help as lots of parents here who have to deal with the same issues.  Welcome again, hope you get the information that helps. Good luck!


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## superbloop (Oct 24, 2010)

Hello momtocrohnsgirl, I'm not a parent but a child-turned-adult of crohns and there are a few snack ideas I got from my experience. If your little one likes ice cream you can try a dairy free rice milk ice cream found with the other alternative milk products. It's called rice dream, if you have an issue with that you can always make your own ice cream using rice milk and an ice cream maker. You can also try soy cheese for pizza if that helps


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## Starfish7 (Nov 23, 2010)

*My lil girl 11 has Chrons, she is an amazing kid, stronger than I*

:hug:Hello, I  just joined this forum, my daughter is 11 and was diagnosed with CD in March 2010. I was hopeful when she was released from the hospital with Pentasa, and a 53-day steroid regimen that it was manageable. She was on Homeschooling, and was eager to return to her friends. She did go back to school, with her chipmunk cheeks! She missed about a month of school. I thought it would empower her to do the walk to raise $ for CCFA, and we raised $600.00/ in 5 days. We did car washes, bake sales, wrote her story and had it bound, and we appealed to friends and family on facebook. She finished the school year and I was expecting to see good results on her upcoming MRI. The strange thing about this disease is ,she appears normal and healthy but her MRI and bloodwork told a different tale. She has Hydronephrosis on her rt Kidney and scar tissue in her terminal illeum - Chrons complications. They put her one a month supply of Cipro - 0, she then went on Remicade for the induction period, - 0 and we are now seeing surgeons. I am told its rare, but she has back flow on the right kidney and if it doesnt get addressed , she will loose her kidney function. She will need to get a ressection surgery, and it will fix the Kidney backflow issue. I try to speak privately to the doctors about her condition, and save her stress and/ grief but tommorow we meet with the pediatric surgeon. I am privately grieving over an illness that has impacted my daughter and our family in a huge way, I am afraid whats in store in the future. In closing, I also want to say that strangely a woman in our neighborhood recently confronted me regarding my approach to my daughters disease. Apparently , she thought I should have said nothing (in the beginning, when she was out of school and hospitalized etc) and when she returned to school w/ moon face - and kids asked her what happened? I havent spoke about it since, as its her business- however if she had juvenille diabetes, maybe this wouldnt be an issue?


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## AZMOM (Nov 25, 2010)

Hi Starfish - I'm pretty new here too.  You can see our story on New to the Forum.  Anyway, I'm proud of you being an advocate for your daughter.  It's good for her to "do" something towards a cure.  While her Chron's is not ALL of who she is, it is part of who she is.  Whoever, that woman is - I'm confident she doesn't have a child with a chronic illness.  You have nothing to be ashamed about and your approach was clearly right for your family and most importantly, your daughter!!!  I'd tell her that quite frankly, she doesn't have to be involved but she is also not your censor!  And, given the day, I might not say it that nicely lol.  So much for us southern girls and our manners.  

One thing that helped us during our most recent hospitalization was having the child life specialist talk to our daughter about the upcoming procedure.  We learned it was important that she be aware of what was going to happen.  Not necessarily all the "what ifs" but what was happening.  Maybe if you are going to a pediatric hospital, there is someone you and your daughter could meet with to help her get ready???

Thinking of you both - 

Claire's Mom


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## troydanielbecker (Jan 31, 2011)

Yes, this is what I was looking for.  Our 2yr old son Isaac has UC.  Currently he is doing pretty well, but the past five months sure have been a crazy ride.

He is weaning off some steroids, taking sulfasalazine, and also getting some probiotic supplements.  His diet is not quite vegetarian.  Soy products cause an immediate reaction in him, and cow's milk seems to loosen up his stools, but not so bad as soy.

The UC he has in his whole colon, but he seems to have been doing fine developmentally, and all around, if you didn't know about his poop history, he seems to be a healthy happy child.

We would love to make connections though with other similar families.


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## Dexky (Jan 31, 2011)

Troy, start a new thread in this section.  As you can see, your post will likely be missed in this intro thread.  Julie's just above you was in Nov. last year!!


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## Max's Mom (Feb 10, 2011)

Dexky said:


> Troy, start a new thread in this section.  As you can see, your post will likely be missed in this intro thread.  Julie's just above you was in Nov. last year!!


I was just wondering if anyone knows if IBD for sure affects growth. My boy has Crohn's and for about 2 years he had lots of inflammation. He is about a head shorter than the average 5th-grader. Do they usually make up for the loss in growth later on?,when in remission.


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## justchrissey (Mar 12, 2011)

I am grateful to have found this site. As a mom of a daughter who was diagnosed at age 12 with UC we have been through much. She has been in remission for 7 years and for the last six months became quite ill. This was different this time as it included nausea and the trip to the ER was a result of a protruding abdomen tight and painful. After surgery to insert a tube into a hemotoma and anitbiotics we thought we were home free and this was thought to be a result of an injury. It came back.... after another trip to the hospital they decided to do a colonoscopy  crohns...now what??   She had a TB test and will begin treatment on Humira twice a week for a few months then some kind of medication. These drugs scare us...quite frankly.


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## DustyKat (Mar 12, 2011)

Hi justchrissey and :welcome:

I am so sorry to read about your daughter, . Good to hear she had 7 years of remission but OUCH, what a way for it to reappear! 

There are many here that have a diagnosis of UC only to have changed to CD further down the track. Would you like to repost this in the Your Story forum? That way more people will see it and will be able to welcome you.

Plenty of kindred spirits here with the whole drugs freaking us out thing.....:eek2:. We have a Humira club here, so have a browse through there and if you have questions relating to it feel free to post away there.......

http://www.crohnsforum.com/forumdisplay.php?f=59

If my son hadn't developed the problems he did we may have been facing Humira as well. There is another parent here who is facing having there child start Humira soon. It is so damned hard isn't it? In my own kids case their disease is severe from the outset so I choose between their disease having the potential to become life threatening or the drugs, I choose drugs because I never want to experience again what I did with my daughter. Everyone is different though as is their response to treatment. 

Do you mind revealing a general location of where you are? That way others here can offer greater advice about the docs and hospitals where you are. 

I hope your daughter starts feeling better soon and that Mom is okay too. Good luck and welcome aboard!

Take care, 
Dusty


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## justchrissey (Mar 13, 2011)

Thank you for your kind words. I live in Medford Oregon, she is in Eugene. I can attach more information as we get it. She had a TB test yesterday and is still fighting the infection from the abcess. All new and scarey.


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## vcp420 (Apr 7, 2011)

Noticed not much activity on this thread lately. Hope everyone's children are ok.  I am new to the forum and facing my child having to possibly go on something stronger than pentasa.  He was doing well until the flu made him go downhill.  I am majorly into nutritional management and make a lot of things that actually taste decent.  Even my co-workers think my chocolate chip cookies(no flour,no refined sugar,all organic). My husband is in some denial which doesn't help my kid face the reality of slowing his life down. He is a junior in high school looking at competitive colleges.  I am afraid of thisp screwing up everything he has worked so hard to achieve.  Of course a 16yo boy doesn't tell his parents what he really feels so it is hard to be sure he is ok with everything emotionally. How cruel it is that this disease can also screw up you and your family emotionally.


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## Saphira (Apr 7, 2011)

*My son Brandon*

Hi there,
We have a 9 year old son Brandon who may or may not have Crohn's after 7 years of strange GI symptoms, he had blood in his stool an endoscopy and colonoscopy and the GI diagnosed crohns.  they put him on Asacol and he went into remission for 2 years, with only mild stomach aches.  he is allergic to eggs, and if we stay away from they he was fine.  Until November, when he had a flare up.  His GI no longer took our insurance so we went to a new one.  He won't make the crohns diagnosis until they get the results from the Promotheus test not covereed by our insurance, so we finally agreed to pay for it.
He had endo and colonoscopy and grossly everything looked good except a severely fragile and hemoragic terminal ileum.  The path report found chronic colitis and mild oesophogitis.  They put him on Entocrot that almost killed us financially it was $1200 a month and the insurance only paid $1100.  It seemed to work for a month or so, the blood went away and poops decreased to about 5 a dya.  The pain continued though.  Pain is tough at least 4 days a week he wakes up in the middle of hte night with pain, and ends up coming home from school in pain for at least 3 days aweek.  The pain episodes last 3-4 hours at a time.  He regularly goes Poop about 5 times a day.

We turned to Prednisone two weeks ago.  The first week apart from being hyper showed great improvement in his pain so we decreased from 40mg to 30 mg and now the pain is coming back.  I don't know what to do.  He is puffy, he gained 5 pounds in 2 weeks on steriods.  i get the feeling the Dr may not  be sharing all the information with us.  They said his inflammatory markers are normal (While on Asacol, entocort, prevacid, levsin, tylenol, omega3, omega 6, probiotics and a multivitamin, and almost imply this means he doesn't really have crohn's.  But in the next breath they told us to look at Remicaid.

I am just so confused?  The steriods were working but not so much now.  Abdo pain R lower quadrant and whole right side with painful joints (Mostly knees and ankles but sometimes back) and very painful eyes are the syptoms keeping him from getting to school and living his life.

I really don't know what to do.  We did the prometheus test 2 weeks ago but no results yet.

Any ideas would be great.

Trina and Lee


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## vcp420 (Apr 7, 2011)

Don't know if it will help, but I have found any pain and cramping in my son to be totally dependent on what he ate. I started reading everything I could and now combine a bunch of stuff. I do the homemade yogurt thing descibed in the scd diet book and he doesn't eat hardly any refined carbohydrate. The" comfy belly" website has amazing recipes as does the book "cooking with coconut flour". I try the recipes out on coworkers so that I can tell my son they are edible. Great resources for treats that are easy on the stomach.  No doubt that yogurt and vsl3 probiotic have made a huge difference. Making it at home makes the bacteria count much higher. He has it daily in a smoothie. Another thing he finds easy on the stomach is" naked fruit" drinks. Great way to get some green vegetables down.


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## DustyKat (Apr 8, 2011)

Hi Saphira and vcp, :bigwave:

Welcome aboard! It would be great if you could both repost in the Your Story forum, that way heaps more people will see your thread and you will get the welcome you deserve.

@Saphira, I'm so sorry to hear about your son. 

His symptoms certainly sound like Crohns and his EIM's (extra intestinal manifestations - sore joints and eyes) are spot on as well. Just my two cents worth but I reckon his severely fragile and haemorrhagic terminal ileum warrant far greater investigation as I would be hard pushed not to think that is the source of much of his right lower quadrant pain. Oral medication can only do so much if there is extensive damage. 

Is the GI your son sees a Crohns specialist? It may well be worth getting a second opinion.

I will try to revisit the thread later, I'm hit and miss on the forum at present.

@vcp, I see you have asked about college in another thread. I will get back to you later on that one!

Take care guys, 
Dusty


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## huni (Jun 12, 2011)

Hello, my son was diagnosed with crohns in march last year it was horrible to see him the way he was,it was his last year in primary school when he was feeling unwell.He looked ghostly couldnt keep of the loo, and vomiting.He had no appitite at all it was awful to see him like that,i am so glad i found this site to get advice from others and for me to give advice back if i can.


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## DustyKat (Jun 12, 2011)

Hi huni,

I'm glad you found your way to the parent's forum. There's loads of love, laughs and support here! 

Would you like to start your own thread in the forum? I know everyone would love to meet you and your thread may become lost in here. 

Dusty. xxx


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## SAHM (Jan 28, 2015)

:ghug: I'm home again with my son who is 13.  I'm grasping for answers. I have lots of great recipes to share. But it just takes one wrong thing or a stress event to send mine into a flare.... thinking of upping his meds.  He is on Lialda and Imuran.  Thoughts?


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## vcp420 (Jan 28, 2015)

So glad that you revived this thread! Much has happened to my son since my last post. He wound up on Remicade late in 2011. It worked at first, but by fall 2013 he would have 1 OK week and 7 bad ones. He was about to go back to sophomore year at college and weighed 110 pounds. The doctor wanted to either up the dose or the interval of Remicade but needed a $2500 test to see which way to go. It was early August and I knew he would never be able to finish a semester with the way he looked. I discussed trying the specific carbohydrate diet with him. He was so desperate that he wanted to try it. We used a step by step guide available over the internet called "SCD Lifestyle" and followed their very specific instructions closely. Within days his night sweats stopped. Then his BM no longer had that awful smell and became normal. By October he had gained 20 pounds. This was a child diagnosed in 2010 at 115 pounds who over the course of 3 years and multiple drugs had LOST down to 110. Now on the diet he gained 20 pounds in 2.5 months! The SCD diet truly gave him his life back. He is still on it and now eats RAW fruits and vegetables! We are now discussing stopping the Remicade instead of upping the dose. I also talked a friend with a newly diagnosed son into trying the diet before the Remicade and he has gained 9 pounds off medication with no symptoms while on the diet. My GI and my friends GI are amazed. Even if you need to be on the medicine, the SCD diet seems to help keep the dose stable. You have nothing to lose and your child's life to gain.


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## lenny (Jan 28, 2015)

We tried to do the SCD twice.  The first time for about a year and my son did okay, but the second time, we didn't make it past the intro diet.  My son just kept having pain and bloody stools.  As soon as we started EEN it stopped.

We have another family member whom the diet has worked perfectly for, however.  No meds.  9 years.  Wish it worked for everybody!


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## vcp420 (Jan 28, 2015)

I agree that it doesn't work for everyone. If it did, there would be no more need for any meds. However, for most people, there is no harm in trying with a big potential gain. I personally did not like the "Breaking the Vicious Cycle" book. It gives lots of information, but is light on how to go about things. The resource I referenced is helpful for that. It breaks it down in small stages and gives specifics on how to cook things. It progresses the diet very slowly and you don't move on until symptoms are under control. I encourage anyone to at least try before escalating medicines. I wish someone had encouraged me before my son started Remicade. Now we are stuck with whatever long term effects that might have. I don't know for sure it would have worked then, but I will never know.


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## SAHM (Jan 28, 2015)

I know lots of people think the Blood Type Diet is a bunch of hooey, but I am wondering if you guys know your kids' blood types. I wonder if they are different and if that is why one diet works for one, and not for another child.  There are definitely overlapping good foods in all of these diets.  I've noticed lately that my son has been consuming more sugars, which can't be helping...Not an easy thing to cut out for a kid who is struggling.  I'm baking for him, but maybe too much.  I have been holding off on Remicade, hoping we could take care of this with diet, but I just don't know if it is working.  This week, I found out that my son's meds (generic) contain cornstarch, which he seems to have a strong sensitivity to (unless I'm making this all up in my head??!).  His sickness has increased since his med brand got changed last month.  So I asked the pharmacy about that, and they said that all the meds contain cornstarch (and lactose btw) as fillers.  So I got my doc to prescribe the Brand name, which contains Potato Starch instead of corn. My son started it yesterday.  I had no idea about these "inert" ingredients.....so....hoping that the extra $75 a month for the brand name makes a difference. Crossing my fingers...and now, going to make a few less sugary treats for a while.  Meat and veggies for my type O kid, and backing way off the carbs.  He sees the doc in 2 weeks.


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## crohnsinct (Jan 28, 2015)

SAHM: While I am not ready to pull my daughter's meds and go all diet for the management of disease, I do think diet matters.  I put my daughter on a clean, mostly plant based diet partially for it's ant inflammatory benefits but also to support her overall health.  Given the drugs she is on and the effects they potentially have on her liver and kidneys etc.  She is doing very well with it.  She wasn't having any symptoms but I have heard that diet helps a lot of people with the management of abdominal pain etc.  

But like everything else with this disease what works for one doesn't necessarily work for others.  

Good luck with your diet and food journey


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## lenny (Jan 28, 2015)

I don't believe in the blood type diet, but I do know that the person in our family whom the SCD worked like magic, is A+.  I don't know my son's blood type, for whom the diet did not work.

Corn is a no no on the diet, so I'm sure none of the SCD supplements have cornstarch.


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## vcp420 (Jan 28, 2015)

My son is type B. Interesting thing for him was that I always saw a correlation with food and symptoms, so from the beginning I went gluten free, very little dairy, baked with nut flour, no simple starches, etc. I didn't expect much out of SCD since his diet was pretty close to it already. It was only with wiping the slate clean with the 3 days of chicken soup followed by the slow introduction of pureed foods that healing actually occurred. He was just going through the motions before then, but once his gut got the time to truly rest, his energy level picked up and symptoms improved. I have heard some GI's say there is a difference between fistulizing and non-fistulizing disease. His has always been non-fistulizing. No doubt that stress is a big thing for patient and caregiver. I practice mindfulness based stress reduction. There is a ton of good research behind it and it is being used by companies like Google for employee wellness. It has proven anti inflammatory effects and has been shown to help several autoimmune diseases. Best of all, it's free!


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## vcp420 (Jan 28, 2015)

If you Google "specific carbohydrate diet Seattle childrens" you can find some information about a study they did on 7 children they care for currently on SCD. They published it in a journal about a year ago. It gives some background on their histories. Don't get me wrong, no one should just go on the diet and stop their medicine. That is not what the diet is about. It is about trying to minimize symptoms and use diet to work alongside any needed medications. My son plans to try to stop his Remicade next year should his symptoms and lab work continue to look good. Not because he is on the diet, but because his GI says it is reasonable to try after 3 years of remission if he wants to. We were told that the latest research says 50% of people will succeed and 50% will fail and need to go back on anti TNF drugs.  Some GI's feel you should never go off. That is something between each patient and their doctor based on personal history.


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## crohnsinct (Jan 28, 2015)

SAHM said:


> :ghug: I'm home again with my son who is 13.  I'm grasping for answers. I have lots of great recipes to share. But it just takes one wrong thing or a stress event to send mine into a flare.... thinking of upping his meds.  He is on Lialda and Imuran.  Thoughts?


Just also wanted to add that I would call his GI and let them know what was going on and see if they will see him or see if they want you to run any tests etc. 

Forgive me if you already mentioned you have a doc appointment...old brains:ylol2:


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## SAHM (Oct 22, 2015)

Ok fellow parents...I'm tired of having long distance medical care for my kid! I'm ready to drive the 3 hours tomorrow to make them take care of him... He is on Remicade, and he has had increasingly more flare ups - esp since school started. So, the miracle isn't working anymore.  Who out there has had this happen, and what did you do? #homeagain


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## crohnsinct (Oct 22, 2015)

Hsvr they tested his remicade levels and antibodies?  Have they adjusted his levels or frequency at all over time?  Has he gained a good deal of weight and had his dose adjusted accordingly?  Remi is prescribed in total volume so the mg per kg changes as they gain weight so if they don't adjust the total he could. He could be getting less drug


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## vcp420 (Oct 22, 2015)

SAHM said:


> Ok fellow parents...I'm tired of having long distance medical care for my kid! I'm ready to drive the 3 hours tomorrow to make them take care of him... He is on Remicade, and he has had increasingly more flare ups - esp since school started. So, the miracle isn't working anymore.  Who out there has had this happen, and what did you do? #homeagain


Yes, you are not alone. Same story for my son. Remicade was great, then not working 18 months later. He was about to start sophomore year in college and was 108 pounds. We were told to get the antibody test and he would need higher dose. He decided to try the SCD diet and it was a miracle for him. 3 months later, he had gained 20 pounds and was asymptomatic. He has been in complete remission for over 2 years now. He never increased the Remicade and has his doctor's blessing to stop it whenever he wants. The diet has literally been the difference between graduating in 4 years and enjoying life versus continued problems and probably having to delay school. I remember all the sleepless nights worrying about how he was doing. It is horrible. My life is so different now. If you want to know more about the diet, I think there is a way to private message me.


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## Farmwife (Oct 22, 2015)

SAHM said:


> Ok fellow parents...I'm tired of having long distance medical care for my kid! I'm ready to drive the 3 hours tomorrow to make them take care of him... He is on Remicade, and he has had increasingly more flare ups - esp since school started. So, the miracle isn't working anymore.  Who out there has had this happen, and what did you do? #homeagain


This is happening for my 6 yr old also. 
The doc has upped her to every 4 weeks at the highest dose possible (for her age) of Remicade and changed her meds from mtx and sulfasalazine to Azathioprine.
So far all is looking well.:shifty:

CIC is right, have they checked his levels?


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## pdx (Oct 22, 2015)

Yes, my daughter had to have her levels checked twice; the first time her infusion frequency was switched to every 6 weeks and the second time her dose was increased to 7 mg/kg.  The changes helped.  Good luck--I'm sorry that you have to drive so far for your son's care.


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