New diagnosis - so lost!

[NewbieCrohn'sMama]

My son (14) was just diagnosed w/ CD last Friday after suffering with "constipation" for years. I finally found a doctor to listen to my concerns and sure enough, I was right, something was wrong with my son.

So here we are...help! We have some appts coming up soon, including MRI enterography but I'm so lost. He was started on Pred 40mg/day and Zantac 150mg 2x day for starters. No big improvements but definitely HUNGRY on the steroids! He lost 20lbs in 2 months so I'm happy he's eating again.

Does anyone see benefits with eliminating glutens from diet? I have noticed with pastas, breads, bakery, etc he has some trouble so we tried some gluten-free bread products. Let's just say it's impossible to tell a teenager he has to eat bread the resembles and tastes like cardboard. Yeah right.

Lactose/dairy is also a big trigger...knocks him to the floor with pain, sweats and nausea. No allergy to it though.

Suggestions, successes, fails? I am willing to hear anything and everything at this point! STRESSED!

 

[Sascot]

Sorry to hear about your son's diagnosis. It is a very difficult time. No great advice diet-wise, our dietician/GI just say let them eat what they want unless it causes pain. I do make my son (also 14) avoid popcorn, nuts and corn and I cook all veg and peel all fruit.
Good luck with the treatment, hope everything settles down quickly. One route to keep in mind is EN (enteral nutrition) - specially formulated liquid diet. My son did 8 weeks immediately after diagnosis, instead of the steroids and it definitely got rid of all tummy issues for a good few months until we had to go onto meds. He had to "drink" it through the NG tube as he couldn't stand the taste, but it was worth it.
This forum has been wonderful for getting support and answers to any questions.

 

[CrohnsKidMom]

Welcome! I'm so sorry to hear of your son's dx. My son is 8 and was dx'd in March. During the time on Prednisone (which was supposed to be 3 mos, but ended up being 5), the GI recommended a low residue diet. So, soft cooked veggies, low fibre, and no seeds, nuts, popcorn, or anything hard to digest or that could irritate an already inflamed digestive system, like spicy or processed foods. I did try to limit the amt of gluten, but it seemed to be lactose, spicy foods, and anything processed that gave my son the most pain. He had mouth ulcers at the time, and if he was eating something that hurt his mouth I figured it would hurt his intestines, so it would be eliminated from his diet. It's a bit of trial and error. I know there are some on this forum who have done specific diets, so I'm sure they'll have better advice than I. Hang in there. I'm sure your son, and you, will be feeling better soon.

 

[Jmrogers4]

Welcome,
It is hard to say with diet what causes issues with someone can have no effect on someone else so there really is no hard and fast rule. That being said a low residue diet in the beginning is not a bad idea so as to not irritate inflammed tissue. A good idea is to keep a food diary to identify triggers.
As Sascot said Entrenal Nutrition is something to consider as it has been shown in some studies to reduce inflammation and it is easier on the digestive system, it doesn't have to work as hard. Have a look here http://www.crohnsforum.com/showthread.php?p=694576#post694576.
Have they talked about a maintenance med yet? A lot of these take several months to work so many GI's start them while on Pred.
It can all be so overwhelming there is a lot of information here and some incredible people who are always here to support and answer questions.
My son is also 14 and was diagnosed at 10. Hope you find a great treatment path quickly so he can go on feeling and acting like a normal 14 year old boy!

 

[Dexky]

We've been doing gluten-free for my son for nearing two years now. There are some sandwich bread mixes that he likes, Glutino is a good one. The frozen loaves that he likes are Kinnickinick(something like that) and Udi's. The rest that we've tried are truly awful!!! Udi's also has hamburger buns, bagels, and chocolate muffins that are good. The buns and muffins are not frozen. The Kinnickinick brand is the cheapest we've found and he does like it but sometimes it's hard to come by. I guess we aren't the only ones who've discovered it

Good luck and welcome!!!

 

[Johnnysmom]

Welcome mom!

We can all relate to being scared and overwhelmed in the beginning. It's a lot to digest, but it gets so much better.

For my son, I tell him to avoid foods that make him not feel well. Our GI said nothing he ate would cause the progression of the disease. When my son was first diagnosed there were a few things we avoided, just because they gave him pain when he ate them. But now that he is healed up he can eat anything.

There is a blood test for Celiac disease, it is about 95% accurate. You might want to have one done if he seems to react to gluten.

 

[ChampsMom]

Hi NCM...

Welcome to the forum. I'm so sorry to hear about your son's diagnoses. My son was 13 when he was diagnosed, so I can imagine the state you must be in right now... There is so much to figure out.

You have received a lot of good information thus far. I have posted the following information at different times (so you might see it in another thread). This is what our nutritionist (who works closely with our GI team) recommended regarding food for my son. Outside a cheat here and there, he's pretty good at sticking to it (btw - he is now 16).

There are many here that say that there are no foods that are off limits and that foods cannot cause flares. Having said that, when my son my diagnosed his GI and the Nutritionist both stated, "When the average person eats a food and it "nicks" the lining of their GI tract, it isn't a big deal; however, when the same thing happens to a person with Crohn's it can be life altering." Hence, we have heeded to their advice and thus far he's doing well.

Here's the list:

NO popcorn - EVER!!
NO seeds - EVER!! (which includes seeds that come in fruits/veggies - ie, he removes the seeds from a cucumber, doesn't eat strawberries, unless he peels the seeds/outer skin, no raspberries, etc. a seed is a seed).
No nuts - EVER!! (except boiled peanuts, but he has to remove the skin if he eats them.)
NO regular dairy products (he drinks full fat lactose free milk, eats veggie cheeses, tofutti - it's like cream cheese made from tofu, lactose free ice cream, etc...)
NO raw veggies (except he can have a small salad of lettuce occassionally or one peice of lettuce on a sandwich, but not daily).
Low ruffage/fiber (he can eat potatoes, but no skins; apples - same thing; no celery, no corn - cooked or raw).
Low to no citrus (no organges, pineapple, grapefruit, etc...)
Low Sugar
Low Soda (maybe 2 per week)
Low fatty foods (he can eat steak, but not the fatty part).
Low greasy foods (he eats french fries, onion rings, but not daily)
Low to no spicy foods (though he will on occasion dip a chip into a mild salsa).

(I think that is everything...)

When they first told us I thought, "What on earth is he going to eat?" As it turns out - everything else! I chalk some of it up to puberty (which he took forever to get into in comparison to all his friends), but since diagnoses 3 years ago, he has put on over 70 lbs and has grown over 7 inches - most of it is muscle mass as he doesn't have a lick of fat on his body!

Here's the disclaimer - what works for one person does not always work for another. I know we have kids that eat peanuts, popcorn, regular milk, etc., without any issue. In the beginning start with easy to digest foods, be leery of any fad diets and focus on him feeling better...

Hugs & God bless!

 

[NewbieCrohn'sMama]

You are all amazing! My son hit his boiling point/wall of anger last night. My husband and I knew it was coming soon but he caught us off guard last night. He's not an emotional kid but the tears started as soon as we sat down to discuss what needs to be done for a food/med/pain diary. He's mad he has to do it, upset it happened to him and I think a good bit of him is hurting for me. He's a Mama's boy for sure and sees me suffering but trying to be the rock.

At first I was attempting to cook 2 meals so he didn't have to eat what may cause him issues since he has twin 6 year-old brother & sister who aren't so easy to adjust to new foods. I don't want him to feel isolated from everyone else and I think he does no matter how hard I try to pull everyone together. This is definitely a HUGE adjustment for just me so I know how he must be feeling.

He's on Pred and Zantac now until he can have some further testing done. They have to do gene testing to see if he can take 6MP without toxicity and MRI enterography to see if fistulas possibly seen on CT are true. Those are next week. We see our GI doc tomorrow for our first visit since being diagnosed so this is THE visit, the one we've been waiting for, to finally talk treatments.

Another question, when your children started Pred, what side effects were the most bothersome? My son cannot sleep at night and is drop down tired the rest of the day, has horrible headaches and mild stomach discomfort since starting it last Friday. Are these normal? Bothersome is Ok, I just want to be sure it's not an underlying reaction that I might not be aware of?

One day at a time....I'm stressed but pushing through!

 

[carla_marie]

I'm not a Mom to a Crohnie but a Crohnie myself and I wanted to give you a quick reply while I had a minute. I find with the prednisone, timing is everything. I take my prednisone at lunch, with my food. If I take it any later, I can't sleep well. I also found with the higher dose of it (I'm tapering off right now) I could eat everything in the house! So hungry all the time--which meant that I really had to watch what I was buying and keeping around. Which is something you might want to be aware of with a teenage boy, I can relate cause I have a teenage daughter who will eat all the junk food first....I did not find myself with headaches so I can't help there. The tiredness during the day is something I struggle with as well, but by taking the prednisone at lunch, it helps me sleep better at night, which helps me be more alert during the day. The pharmacist told me that I could even take it with breakfast if I wanted to. Will he be tapering off the prednisone soon? When I got about halfway through my taper, most of my side effects diminished.

Good luck with the GI visit tomorrow...

 

[NewbieCrohn'sMama]

Carla_Marie - he was just dx on Friday so he hasn't been on it a week yet. He has to take 40mg/day but 20mg in the morning and 20mg later. Lunch is too early since he has it in the 10a.m. hour at school - too close from his morning dose. Dinner is WAY too late so he's had to come home after school every day and have it with a snack so it's around 3p.m. but he's still an insomniac.

He has had an increased appetite which is causing issues. His go-to things are popcorn and ice cream! GRRRRR!!!! I bought popcorn without the seeds/hulls and he doesn't like them so that was a bust. Ice cream isn't so much a trigger for him, unless it's a large bowl of it and it always is with him He cannot drink milk. Something about just a glass of milk turns him sideways so we bought lactose free milk for him.

I am impatiently waiting for our appt tomorrow!!!

 

[Mehita]

Oh, prednisone! My son's doses usually starts at 40mg and he experiences an increase in appetite, insomnia, hyperactivity, major mood swings, increased hair on his face and neck, and "moon face"... a sort of swelling of the face. He always takes his whole dose in the morning with breakfast and still has insomnia. He just reads in bed when he can't sleep. Many here will say they have a love/hate relationship with prednisone.

We have two diets around here. The restricted "flaring" diet where we are more cautious... no nuts, seeds, popcorn, etc and then the "feeling good" diet which we are more open. My son has to have two months of good labs before I'll let him have the kernel less popcorn. Real popcorn is out of the question no matter what.

It might help him if HE kept a food diary to help him identify how different foods make him feel. Sometimes I think it's a live and learn experience for kids. You want to eat four scoops of ice cream? Ok, go ahead, but remember how it made you feel last time? Oh, yeah, that.

Hang in there! Good luck tomorrow at the appt.

 

[ChampsMom]

There are a variety of ice creams out there he might want to try: Tofutti, Lactaid, Rice Milk, Sherbet - my son like them all.

Prednisone - my son got the moon face, the mood swings, the food cravings, the insomnia, the, the, the... etc... seems to be part of the package.

Regarding the pain - keep good notes. Unlike when we get a headache and take 2 pills and it goes away the prednisone is a work in progress (and prayerfully it is working!). Given he just started it - he might be having residual pain from what happened.

Many folks here use a number system for pain: 0 - no pain, 10 - the worse pain ever. In our house we talk about it being a Crohn's pain or just a regular pain. (sounds odd, but my son swears he can tell the difference and well I'm not one to argue that!).

One thing if he is hungry a lot - is the school already working with you for him to have food/drink during classes? There is a thread here for 504 Plans and there is a template on the CCFA website for writing up your own. I *strongly* encourage you to do so (no matter how nice the school is being right now!).

Good luck at your appointment - ask for copies of all of his lab work, reports, etc.! That way you can always have a record of it.

((hugs))!

 

[Clash]

My son was also started on the 40mg dose of pred and had the side effects of moodiness, restlessness, acne, moon face and insomnia. We moved his doses up as well hoping for some relief with the insomnia, 20mg at breakfast before school and 20mg at lunch, it may have helped a bit.

Good luck at your appointment!

 

[pops14]

Hi just written you long reply then delited it by mestake ahhh louis was diagnosed aged 13 after bieng ill for months in the end relief that we had some answers, I would say avoind garlic hidden in loads of foods read small print. just go with what makes him feel bad and cut it out but bear in mind till he gets some reponce from meds most foods will make him feel bad as when you have flare u just need to get it under control. not sure where you are based but uk supermarkets have good range of glutin free stuff.
dont despare you will be amazed how they adapt to things

Katie

 

[Johnnysmom]

My son took 40 mg in the morning with breakfast. I think it helped with the insomnia. He would get stomach pain if he didn't take his Zantac before dinner.

My DS had difficulty sleeping, and was very emotional. He also felt like his heart was racing a lot. It scared him, which made it sort of worse. I think some of it was dehydration and low potassium, which can happen while taking prednisone. Once we made sure he was drinking water and eating the occasional banana it was better. It was a rough few months but it really did get him better quickly.

(((((Hugs)))))

 

[NewbieCrohn'sMama]

Johnnysmom - Thank you! We see the GI guy tomorrow. He started the split dose of Pred last Friday. We have adjusted all we can with taking 2 doses a day and he's still an insomniac. I might see if they will allow all 40mg at once with a meal instead when we see doc tomorrow. He's terrible at keeping up with fluids, too...unless he's active in sports which he had to skip sign-ups this year due to being sick since May. It's his first year of high school and varsity football and he couldn't sign up I found him with his jersey out a few days ago so I know this is rough for him...

 

[Sascot]

Sorry no advice on Pred - we only did the EN. Just wanted to wish you luck for the appointment. I feel for him having to give up the sport just now. My son just had to give up his football which he loves - he is just to tired to cope with training. It is really upsetting to see. Hopefully with a good few months of treatment you son will start to feel up to sport again!

 

[CrohnsKidMom]

We were given 2 treatment options: EN or Prednisone. We went with the Prednisone, 30 mg each morning at breakfast. My son's side affects were; a HUGE appetite (he gained 10lbs the 1st month!), swelling of the face and torso (some of that was due to the weight gain), some facial acne (funny, since he is only 8), and an increase of hair growth on his eyebrows, arms, and legs, and increased bone pain (it depletes the body of calcium, so supplements are in order!). The pains in his abdomen noticeably decreased within a week to 10 days. My son was supposed to be on Prednisone for a total of 3 mos, including the tapering off. But, due to some trouble with getting him on a maintenance med that he did not adversely react to, he was on it for a total of 5 months. Hope all goes well at your GI appt!

 

[Farmwife]

Grace was on both EN and Pred.

She at four would get so moody that we stared calling it "Princess Rages".
She didn't have much hunger as in begging for food but once she was able to drink on her own she would down 5-6 juice boxes (EN) in a few hours. Man I miss that. lol

 

[rivitex]

We've been off gluten for years. Every one in the family just has to be on the same diet. I'm not a short order cook.

The best gluten free bread is the one you make yourself. There are a lot of good blogs on line. It isn't as hard as you might think because you don't have to knead GF bread. I like "Gluten Free on a Shoestring" for bread (but a lot of her pastries have dairy so not great for us).

We mostly just don't eat bread. If corn or rice aren't problems, you can use tortillas and make wraps. Similarly, there are breakfast cereals that contain only corn, rice or oats. Quinoa pasta is good, and you can get gluten free pizza or pizza crust now. When else do you need to eat grains? It's the shift in thinking that is hardest, more than the doing.

It does mean that most of our meals are cooked at home, from scratch, and my kid eats a lot more fruit and vegetables than packaged snack foods. But that's all good, right?

 

[CarolinAlaska]

My son (14) was just diagnosed w/ CD last Friday after suffering with "constipation" for years. I finally found a doctor to listen to my concerns and sure enough, I was right, something was wrong with my son.

So here we are...help! We have some appts coming up soon, including MRI enterography but I'm so lost. He was started on Pred 40mg/day and Zantac 150mg 2x day for starters. No big improvements but definitely HUNGRY on the steroids! He lost 20lbs in 2 months so I'm happy he's eating again.

Does anyone see benefits with eliminating glutens from diet? I have noticed with pastas, breads, bakery, etc he has some trouble so we tried some gluten-free bread products. Let's just say it's impossible to tell a teenager he has to eat bread the resembles and tastes like cardboard. Yeah right.

Lactose/dairy is also a big trigger...knocks him to the floor with pain, sweats and nausea. No allergy to it though.

Suggestions, successes, fails? I am willing to hear anything and everything at this point! STRESSED!

Sometimes we just have to treat our kids according to how they are doing and how they handle things, whether or not the medical world can explain it. My daughter absolutely cannot eat regular gluten. She is not allergic nor does she have celiac. The medical world just isn't up to snuff on figuring out why. In the meantime, I give her gluten free diet and she does much better. I strongly recommend you keep a food diary and write down what reactions that he has to foods you give, and keep a list of "safe" foods that he doesn't have pain, bowel changes or other symptoms with. As he gets better, you may be able to rechallenge some of those foods, but for now, he needs to find foods that he can eat that won't make him sick.

I'm sorry that your son is going through this. You've found a good place to get support.

 

[Eema23]

One of my older kids put herself on a gluten free diet, but so many of the things she makes include nut flours that I'm afraid for our Crohn's daughter to eat much of it.
One thing we discovered is the seaweed used for sushi can be used for anything wraps (tuna salad, deli meat, etc) it tastes a little odd but it makes for a portable gluten free meal.