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Crohn's Disease Forum » Parents of Kids with IBD » Were you diagnosed as a youth; I'm scared ****less for my son...


07-07-2010, 06:40 PM   #1
here4ourkids
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Were you diagnosed as a youth; I'm scared ****less for my son...

My son son is 11, prepubescent; his puberty is just beginning.

I read so much on malnutrition and the possibility in effecting his growth. My wife and I have come across the SCD Diet and know of someone on it with UC that has had much success.

We have purchased 4 SCD Cookbooks, Almond Flour, and the Yogogourmet maker. We have begun making things for him, he hates it and says, "I'm not eating that". The Doctor wants us to go on Imuran; we meet with him on the 14th to discuss. My son was diagnosed two weeks ago today, on June 23, 2010.

I'm so scared for him, but don't let him see that. What can I expect? Will he mature properly? Are we wrong for trying the SCD Diet, will I deplete him of what his body needs? Will this help in conjuction with the Imuran? Should we go on the Imuran?

At the diagnoses he had already lost weight; during the school year he was 103 and is now 91 lbs, he had 3 lesions at his rectum, and a couple small ulcers in the food tract. I'm so pissed at myself, I thought he was just losing baby fat and was looking good. I even would tell him how good he was looking, when actually he was ill.

I'm at a loss, I've been reading and reading for two weeks. I'd like to here from those of you with similar experiences or those with children of such.

Signed,

A frantic parent

Last edited by here4ourkids; 07-07-2010 at 07:07 PM.
07-07-2010, 07:08 PM   #2
Vivvian's Mommy
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I was diagnosed at 12 years and had symptoms since I was 8.I started my time of month and then it prolonged until I was 17.I was told alot of the reason my growth was stunted and purberty was slow was because I was put on Prednisone.I was to be as tall as my dad at 5'12" now I am only 5'3".I can't guarentee what will happen for your son but do know that if he is started on Prednisone look into it being that its a steriod.Lots of things can happen...basically I was told that I would be more built like a guy.Where as a guy tends to end up built like a girl.It was a very trying time in school because I always felt like the new kid.Whatever problems they have and believe me they will be hard with other kids picking on him.Listen to him,let him know that you are trying to understand and will help him to understand it also.I know when we found out I was diagnosed with UC and a year later with Crohn's Disease.I have had an ileostomy on and off and now its permnant.I have no rectum or large intestines and less then half my small.It sounds like you are on a good start food wise.Wish we had that advice when I was younger.Also to make him more comfortable maybe starting eating it with him.I know it can be hard at first for both of you but I always think that I want to know what I put in my daughter's mouth and if she doesn't like it I know why.Best of luck if you have any questions you can PM me.Sylvia
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Diagnosis-Crohn's Disease and Ulcerative Colitis since 1997 at age 12
Medication-Humira every 2weeks 40mg and Imuran 100mg,B-12 drops and Multi-Vitamin
07-07-2010, 07:18 PM   #3
here4ourkids
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Sylvia, I can only say, "Thank You" for sharing your story.

I'm sure we will talk again, as that is why I am here; in search of all the knowledge I can regarding Crohns.

With much respect and admiration,

here4ourkids
07-07-2010, 08:12 PM   #4
Procyon
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For one thing, don't blame yourself. There was really no way you could tell your son was starting to get sick. I was diagnosed when I was 9. (Am 19 now; come to think of it last week or the week before was probably my ten year anniversary. Yay? )

I've had various flares since I was diagnosed and while going through puberty and stuff. I never really used any particular diet or anything, and I'd say I matured pretty normally. I mean, I wasn't really an early or a late bloomer and I'm sitting at a pretty average 5'8'', ~165 pounds now. (The weight fluctuates a lot, and your son's might too, depending on flares, prednisone usage, etc.) But that said, I guess I can't comment on the effectiveness of any particular diets.

I will mention though, that I've always been a very picky eater, and I became even more picky after being diagnosed with the Crohn's, but in spite of that, the only deficiency I've ever had is iron. If your son starts running any particular nutritional deficiencies, it'll probably end up on his blood work, and his doctor can help you figure out a plan to combat a given defficiency. Diet's a tricky thing with Crohn's, because it seems everyone is affected differently by different things... What I guess I'm trying to say is, your son will learn relatively quickly what he can and can't tolerate, and he might not need a particular diet unless there's a real lot that he can't tolerate. For now, maybe it's just best to let him eat what he's comfortable eating. I mean, I realize that you're really concerned for him, and you want to do all you can to ensure his health, so a hands-off approach might seem like a weird/frustrating idea, but I've always done OK just going by the "listen to your body" approach, and eating around the foods that bother me.

If you have any particular questions I can answer, let me know.
07-07-2010, 08:17 PM   #5
Vivvian's Mommy
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You welcome...With imuran I have been doing better.It will lower his immune system more then what it already is and they will test for iron defiencies and liver problems.Basically I get blood work every month to see if my dose is too low or too high as it can damage the liver too high and too low means its not working.Also advoidance of sunshine is best if possible as you can burn easier and get tired faster.I learned my lesson the hard way.LOL.I fell asleep in the sun for what I thought was 5mins that actually was more then half an hour.Also if placed on steriods he can have what is called Prednisone rage is what my doctor calls it.I was sad one min.,happy the next and actually at one point in time bashed my brother face into the floor where my mother drag me off.Make sure that his principals in school and teachers know his illness and that he is to be allowed to leave to go to the bathroom without permission as to avoid accidents.It is a very trying time now and will be even harder now that he sound he will be enter middle school as I did when I first became ill.Hopefully he has some very good friends to stick by him.I know I had 2 that stuck through with me no matter what the other children said.
07-07-2010, 08:38 PM   #6
here4ourkids
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For one thing, don't blame yourself. There was really no way you could tell your son was starting to get sick.

If you have any particular questions I can answer, let me know.
Procyon, thank you very much for all of you information and relating to your personal experience. It is comforting to hear real life experiences. I have been living on the "net" the last couple of weeks, trying to find the "Cure".

The only thing I think I have found other than good people such as yourself, is that there truly is no cure.

Thanks again and for taking your time.

Last edited by here4ourkids; 07-07-2010 at 09:03 PM.
07-07-2010, 08:50 PM   #7
Dexky
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Hi again Frantic, when EJ was first Dxed last Dec, we went into overdrive and most of the conventional wisdom pointed to diet being less of a factor than seemed logical to me. So I read, and I asked and read some more. If you ask 50 experts you'll get 50 different answers. Procyon is right, you and he will learn what he can tolerate.

The med professionals are annoyingly unconcerned about diet with crohns. At least ours were. I would have expected diet to be their first concern but we didn't even meet with a clinical nutritionist until probably 3 months in. The only thing of any substance we got from her was to be sure EJ eats a balanced diet. He got that advice in pre-school.

I certainly would not be the one to tell you not to go the meds route. I doubt anyone here would. We had your same reaction when told to start the pred. My wife has a niece who while on pred developed diabetes. We were reassured that EJ's dosage was very low and only a six week course. The pred worked for EJ with no serious side effects. Before the pred, he had not had a blood-free bowel movement for 3 months.

I think I mentioned in your story that he also takes 6mp, mercaptopurine and that the GI did a blood test to be sure his body could metabolize it sufficiently to reduce the risk of the YES very scary side effects. We pushed back but were once again reassured and now he's been on 6mp for over 6 months with zero noticeable side effects.

EJ's case is not typical for all crohn's, well hell there is no typical crohn's, but EJ also has a liver condition that will eventually result in a transplant according to the docs. Because of this, we feel our hands are tied to do everything possible to keep crohn's at bay so not to stress his liver. They think his liver condition is related to his crohn's but like so many things about this disease there is no PROVEN connection.

I guess my point is please stay on top of his condition. There will be a lot of blood tests to be sure the meds are doing what's intended and not doing what's not intended.
I had the same concerns as you and still do in fact about his growth and development. Silver (aka Silver Moon) was dxed very young. She is a nurse and took the time to write me a very heartfelt response once to questions similar to yours. I have no doubt she would love to do the same for you. If you click on her name anywhere on the forum you can PM(private message) her. She will give you nothing but the unpolished truth about being a child with crohn's.

From a parent's perspective, I'd also seek DustyKat's advice as well. She's been nothing less than a godsend to me. She won't mind either, I promise. Good Luck.
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07-07-2010, 08:52 PM   #8
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hi there - i can't remember if i've mentioned CCFA to you before - but here is the link to the chapter near you - http://dogood.boston.com/nonprofits/...inois-chapter#

their main website has a really informative section on Kids & Teens - http://www.ccfa.org/kidsteens/?LMI=8


i suffered various typical Crohn's symptoms right from being pre-pubescent, and wasn't diagnosed until around 20yrs of age - and although i do have some issues which i've been told are due to having Crohn's from a young age (poor bone density for one), it hasn't affected my build or my height. i'm 5'4" - the same as my mother was at my age.

regarding your son's diet - maybe you could get him to cook his meals with you? i've found with my kids that if they're involved in the making of food (i did this mainly because they wouldn't eat veggies) they're more likely to eat it.

i can't advise on the imuran as that's something i don't have experience of, sorry.
07-07-2010, 08:54 PM   #9
Vivvian's Mommy
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I think we all wish there was a cure.I remember when I was younger feeling so selfish that it seemed they were always looking for a cure for cancer and AIDS etc.But I never felt they were looking for one for people like me.I always thought that I was the only one who had it cause you never heard about it.Now you see it broadcast across the screen it seems its taken a long time to reach the public eye on what we all have suffered through.But I always keep my head up and think if they don't find it in my lifetime maybe they will in my daughter's.My mom always questioned why it happened because we never even heard of it before I was diagnosed.It was never even mentioned to us about IBD with all my previous symptoms.Just remember you do what you can for your child.I know I always looked at my mom as a my hero cause she was a single parent with 2 children,working a job and traveling to Ann Arbor at the University of Michigan Mott's Children hospital on an emergency which was 4 hours away from us just to make sure I got the care I needed.She used up all her sick days and vacation days to make sure I was well.She even learned how to take care of my JP tube and ileostomy when they wanted to send a home nurse to us.My mom fight through thick and thin just to make sure I had the care I needed and took care of my brother all at the same time.I still thank her to this day.Just be there for your boy cause whether he thinks it or not you are going to eventually be the rock he has to lean on through those tough trying times.
07-07-2010, 11:54 PM   #10
DustyKat
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I'm so scared for him, but don't let him see that. What can I expect? Will he mature properly? Are we wrong for trying the SCD Diet, will I deplete him of what his body needs? Will this help in conjuction with the Imuran? Should we go on the Imuran?
Hi Frantic,

I don't have a lot of experience on the diet side of things as Roo hasn't needed to go down that path. In my own opinion though I don't think diet can be the total solution nor can it be discarded. I think it plays a part in many peoples lives in helping keep the active phases of the diseases at bay. As many have stated it will be a process of trial and error and I often think when you are dealing with children and adolescents moderation is the key to success, you really need to balance their mental health along with the other aspects of the disease.

As far as maturing goes you need to bear in mind that chronic inflammation and the resulting malabsorption also impacts significantly on their growth and development. Roo was 14 & 1/2 when she had her operation and did not even look like going through puberty for those very reasons. About 6 months post op puberty kicked in with a vengeance and she caught up. Imuran did not have any detrimental side effects as far as that is concerned. I am only in a position to comment on medication in our experience and Imuran has allowed Roo to maintain remission for 4 years with no apparent side effects. So if I was asked if I would do the same again I would say yes.

You have stated that you don't show him you are scared and that's fine but I would ask that you be honest and open with him. I don't wish to offend by implying that you aren't. You will achieve the greatest results by working as a team. Involve him in all aspects of his disease and management. Discuss his diet and why you think it's beneficial, then listen to how he feels about it, if there are differing opinions then negotiate and compromise. This applies to some degree in all aspects of his treatment, you need to keep the channels of communication open.

One last thing, we all have 20/20 vision in hindsight and that's our worst enemy - what If. You are not alone in that believe you me. If you feel the need to talk or get things off your chest you are more than welcome to PM me.

All the very best,
Dusty
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07-08-2010, 06:10 AM   #11
Claire617
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Hey there,
I just want to reassure you really, I was diagnosed when I was 11 I got through my education well and was one of the lucky ones not being affected too severely so as you know it's not the same pattern for everyone with crohns.
I was the shortest in my class and very underweight when I was 12/13 and by the age of 17 I was taller than most of my friends being 5"10, my parents decided to deal with the crohns with medication, Imuran is Azathioprine right?? I was on it for about a year and my academic attendance was fine brilliant during this time so I do feel the meds aren't as daunting as they may seem.
I wasn't on any particular diet either, as Dusty has said I can only comment on drugs from my experience but I do hope your son doesn't suffer too much as adolescence can be a really hard time without having crohns!
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07-08-2010, 12:43 PM   #12
iminflamed
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I was diagnosed when I was 8. I was put on prednisone around that time, which is proven to cause growth retardation in children (try to stay away from prednisone at this age). I also had surgery to remove a good portion of my small bowel when I was around 12. These two events seem to delay my maturation process. I didn't hit puberty until about my junior/senior year in high school. I was the littlest kid in high school up until around my junior/senior year. Somehow my body fought threw all that and I ended up growing to be about 5'11. I always wonder how tall I would have been if I hadn't had surgery/been on prednisone right before my puberty years. Try and stay away from prednisone/surgery, especially at his age. Be wary of vaccines, eat as best as you can, and tell him to try squatting (don't laugh).

You're on the right track with the SCD diet. I went on it and found relief, it's just very hard to stay on it because of the restrictions and the time you have to put forth for preparing the foods. Food DOES have an effect on this illness.
07-11-2010, 07:14 PM   #13
Jennifer
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Hi. Sorry for the late reply as I didn't see this thread. I was diagnosed when I was 9 and my sister was when she was 11. We were diagnosed the same year. I don't believe my sister's growth was stunted at all and I'm not sure if mine was of not because I am the shortest in the family, so who knows, maybe I was stunted or I'm the milk man's daughter. :P My GI back then said that more than likely taking Prednisone may stunt growth. I don't think you'll see anything majorly noticeable and your son should be fine as long as he continues treatment.

My mom started making more bland foods while we were sick like white rice, baked chicken breast and steamed veggies. No pepper or salt, only allowed a little lemon for flavor. When we went out for tacos she would make us take the cheese off but I was really just lactose intolerant and so far isn't directly related to Crohns. Once we felt better, we ate pretty much whatever we wanted and only had minimal symptoms. I think the only time we actually watched our diets were when we weren't feeling well.

Diet with proper treatment is always a wise step. I hope it goes well.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-12-2010, 09:03 AM   #14
bobby.parker
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I was 12 when I was diagnosed, I wasn't growing, putting on weight, not really hitting puberty either. I had the operation after 2 years of attempted meds and liquid diets. After I shot up in height, I'm not 19 years old, I've packed on a lot of weight, I've been able to add a good ammount of muscle, I'm fit and healthy and I maanged to get through my education.

The operation really did help me get through this, it's always worth thinking about as a last effort, if he ever wants a chat with someone who has gone through it - let me know!
07-12-2010, 11:07 AM   #15
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Thank you for sharing your feelings. I am a 19 year old with crohns disease recently diagnosed on 6.17.2010. I've been severly sick since I was 5 years old and now we finally have an answer. I am also starting a diet of not so yummy foods, but it's important to eat foods that will not aggervate your stomach. All I can tell you is to be supportive and understanding. He will have his good and bad days. I too am scared of treatment and what may come of it but also excited to see where it takes me. My doctor gave me the best advice and I will never forget it - take each day one by one and don't sweat the small things. Stress is a big factor and everyday is a blessing. I'm here anytime you'd like to chat!
07-14-2010, 09:14 PM   #16
kello82
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My son son is 11, prepubescent; his puberty is just beginning.

I read so much on malnutrition and the possibility in effecting his growth. My wife and I have come across the SCD Diet and know of someone on it with UC that has had much success.

We have purchased 4 SCD Cookbooks, Almond Flour, and the Yogogourmet maker. We have begun making things for him, he hates it and says, "I'm not eating that". The Doctor wants us to go on Imuran; we meet with him on the 14th to discuss. My son was diagnosed two weeks ago today, on June 23, 2010.

I'm so scared for him, but don't let him see that. What can I expect? Will he mature properly? Are we wrong for trying the SCD Diet, will I deplete him of what his body needs? Will this help in conjuction with the Imuran? Should we go on the Imuran?

At the diagnoses he had already lost weight; during the school year he was 103 and is now 91 lbs, he had 3 lesions at his rectum, and a couple small ulcers in the food tract. I'm so pissed at myself, I thought he was just losing baby fat and was looking good. I even would tell him how good he was looking, when actually he was ill.

I'm at a loss, I've been reading and reading for two weeks. I'd like to here from those of you with similar experiences or those with children of such.

Signed,

A frantic parent
hey! so the appt was today? how did it go? just curious.

i was diagnosed when i was 9 and i am now 20. i have also tried the SCD! sorry to say that i didnt have success with it, i ended up losing a lot of weight and had to trade the diet for just nutrition. but i dont think it was all the diet that made me lose weight so fast, i think it wouldve happened no matter what i was eating.
anyways jsut trying to say that even though it didnt work for me, i still see value in trying it. if you do this responsibly and in a healthy way then NO way at all are you doing something wrong by trying this for him! not at all. youre trying to protect your kid and unfortunately the world of medicine is a thing we need protecting from as well sometimes. it is evident that you have your son's best interest at heart and often times, decisions that need to be made regarding treatment options are ones that no one NO ONE can make with confidence. not even doctors unfortunately. though they might try and convince you that they KNOW what will happen, they dont. it is their best guess based on their medical knowledge and experience and YOUR best guess as a parent based on knowledge of your son and life with this illness is just as valid as a medical opinion.
it is up to you to lay all of these opinions out in front of you and choose the path or combo of paths that feel right.


if you decide to do the SCD, just make sure you keep tabs on his weight and nutrition. you would think a diet of veggies and proteins would be super healthy, but IMO an ailing digestive system cant really do much to extract nutrition out of a carrot. you know? so sometimes mac and cheese and crackers ARE better then your typical "healthy" diet. time will tell.

all this aside, all the troubles that he will have growing up, yeah i mean i cant even imagine how it is as a parent to know what your kid is facing. i often think that crohns has been harder on my family than it has for me. often.
but he will grow up to see life differently than most people even know is possible. does it make it all worth it? i dunno, it depends i guess. but at least its something.

heres a couple links i saved from when i was on the SCD:
to order premade baked goods:
http://www.scdbakery.com/products.htm

HUGE scd recipe collection:
http://www.scdrecipe.com/home/

some premade foods as well as supplies:
http://www.digestivewellness.com/

oh and i HIGHLY reccomend the pizza recipe thats in the BVTC book. its awesome. i mean its not like pizza from dominos, but its freakin awesome nonetheless.
i still make it sometimes haha!! and ive been off that diet for over 2 years now lol!
i reccomend montery jack cheese, parmesan, and bacon but hey thats just me


"only pain reveals pleasure. only tears teach us true joy. and only hell exposes our souls."
^^tis true. this dumb disease is both a curse and a blessing. its easy to forget in the midst of things, but keep in mind that the other side is always there, even if it is buried under 498032 tons of crap and struggle.


hoping that the docs appt went ok today, let us know what they said!

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little girl, you're in the middle of the ride.
Everything, everything will be just fine,
Everything, everything will be alright.

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07-15-2010, 09:06 AM   #17
here4ourkids
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I can't thank you all enough for your warm welcome and many responses and well wishes.

Yes, we did have his Appt. with the Dr. yesterday.

The Doctor's Plan

We have been given prescriptions for
Azathioprine (Imuran): 75mg
Entocort (Steriod, instead of Predizone) 9mg
Omeprazole (Prilosec) 40mg
Ferrous Sulfate (Iron): 325mg
MiraLAX: Twice a Day

We are scared to start this all. We picked it all up yesterday, just shy of $300 with my insurance CoPay; the steriod alone represented $250 of that.

His rectum with the posterior fishers is doing better, from the previous antibiotics. However, still not fully healed or closed (one oh them). The other two have closed and now he has a "tag", where the inflammation was.

I am looking to start this all possibly tomorrow; as today, I am awaiting a call back from a Naturopath, who is also a MD but wanted more for his patients. He was referred by some family and friends that have had success with various illnesses. I don't know if Crohns is something he could treat, but I am willing to listen to him. The only thing is I'd have to fly out to the west coast if we decided to try it.

Again thank you all,

Signed,

Still Lost
07-15-2010, 04:28 PM   #18
DustyKat
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Hi,

Good to hear that his fissures are starting heal.

To be honest, I think it's only natural to be scared of starting this process, I tend to be the other way and think there would be something wrong if you weren't scared!

I hope you can find the solution that you all feel is the best fit for your son. Remember we are here for you so please keep us posted and continue to ask questions when you feel the need.

All the best and take care,
Dusty
07-15-2010, 08:20 PM   #19
Dexky
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Hi again guys, I was just curious if you know what the naturopath's specialty was as an md. If he was a GI, I think that would add a great deal to his possible credibility.

What is your older son's situation now? How is he managing his crohn's?
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