Newly diagnosed teen

Well...
first post.

My 13 year old son was recently diagnosed with Crohns. After reading many post about the difficulties in getting a diagnoses, i guess we were 'lucky' to have been quickly evaluated and recognized for an IBD

Jaz started losing weight ( 15 # in about 4 months ), his appetite went to zero, i thought he was eating like an anorexic, just nibbling at his food, hie color went from tan to white. Everything seem to tick him off. I guess so considering what was brewing inside him.

His GP took one look at him and immediately sent for blood work and called me that night and told me he was referring me to a GI specialist. Within the week we were scheduled for colonoscopy and endoscopy. He was pretty irritated and inflamed from top to bottom. The worst is in his terminal ileum, and duodenum. The MRI showed no stricture or narrowing.
He has been on 40mg Prednisone, we started the taper yesterday, and has started 6MP.

We spoke with the dietician from the hospital yesterday after almost 4 weeks since his diagnosis. Basically she told us he could eat whatever he liked, that food is not a cause or cure for this condition and that the medications prescribed are the industry standard.:rof:

Well, my son was thrilled to hear that he could eat what ever he wanted. I understand that they do not know what causes condition. I find it odd that a dietician did not talk about nutrition, did not once ask about the foods that he is currently eating or what his diet was like before his problems started. When i asked about enteric nutrition, i was told it works very well, as well as steroids during a flare. I was also surprised to hear that Ensure or Boost are the nutritional choice for enteric nutrition. I was not aware that corn syrup and sugar are considered nutritious. I guess I thought that a mixture of nutrients based on the individual needs would be prescribed, particuarly when dealing with a digestive tract that is in dire need of nutrients and healing. As i picked my jaw up off the floor, i realized that this would be a journey. Since we were told of this condition I have been reading and learning, and will continue to do so. I think every case is different as individual people and systems are different.

We are supplementing with Fish oil, a good probiotic, good multi vitamin, iron and enhansa.

The prednisone has, of course, increased his desire to eat the wallpaper off the walls, and increased moodiness at bedtimes. Overall, he has his sense of humor back. He finds it humorous to ask me if i would like to examine his stool, lol. I think probably the hardest for him has been an acceptance at a change in his diet. I thought about how i wanted to handle his diet a great deal. The family has never been big on sodas, they WERE a once a week treat with pizza. I make a lot of meals at home, but i am crowding out things that i usually used, like wheat and dairy.

The other thing i started this week. I am creating a medical folder for my son ( and daughter) I have included his growth charts, vaccine schedule, any blood test results and stool sample test results, as well as the colonoscopy, endoscopy and MRI. I think for a chronic condition, it will prove to be valuable as a base line for them in the future. Anything else that people think would be helpful to include?

I dont pretend to be a doctor, but my husband and i are ultimately responsible for his care, and in helping him understand how to help himself.

Thanks for listening

Hi my name is Alex, from the UK. i was diagnosed with crohns disease at 19 and had a rough two years with it, aside from the pain the main issue for me was getting depressed, everyone has their own way of dealing with it, however my doctors advised a low residue diet which pretty much consisted of white foods: white bread, white pasta, plain chicken, along with certain vegetables (which is great for people like your son, as they are not the boring brown bread alternative), because they are easily digested, a lot of the pain experienced is food passing over the cuts in the bowel, fibre is very difficult to digest and found in a lot of brown foods. im no doctor, im just speaking from experience but it may be worth talking to your dietician about low residue diets, there is a lot more to them than what i mentioned above and they arent all that bad to be fair. Fortunately for me my crohns was only in the terminal ileum which i believe is a very common place, to experience the disease, so i had mine cut out and it was the best decision i ever made, as i had become steroid dependant and couldnt have any of the other medications because i hadnt had chicken pox. My doctor also advised that smoking is one of the worst things you can do when you have crohns disease, i dont know the ins and outs of it but avaoiding smoking and smoking environments is apparently advisable. hope this helps, and i wish him all the best

Wow, I can't imagine what you and your family are going through! To be diagnosed so young, must be extremely difficult to hear. I know when I was first diagnosed with CD last year, I laid in bed for a couple of weeks crying (eventually coming to terms with it). You and your family are heroes for fighting. Glad he got diagnosed so quickly.

I had the same problem with the dietician. They barely talked to me about being careful to get proper nutrition through alternative sources when in a flare and told me I could eat whatever I wanted after I was on the "low-residue" diet for a few weeks. What, really? It's so frustrating, especially at first, not knowing what foods will trigger what because everyone is so different. But at least they need to guide us through how to go about eliminating which foods aren't good. The medical model is definitely flawed: one treatment for everyone is not accommodating.

Anyway, I'm sending my good thoughts and prayers towards your family and you

thanks,

i guess my biggest concern was that during a flare would there be things nutritionally and not so irritating that would be helpful. I was told no, that food was not the issue. Jaz was not put on any low residue diet or enteric therapy in the beginning or since, so i was very much confused.

Hi Jazmom and welcome.:hug:
I'm a mom to a beautiful four year old that has Colitis (Still figuring out which it is, UC or Crohn's)
Yes some people use Boost but some of us use a medical grade formula (EEN).
Her is a link explaining the differences.
http://www.crohnsforum.com/showthread.php?t=23607

Some here find diet to be a BIG help and other's say it hasn't made a differences.
We also have a wonderful diet section
http://www.crohnsforum.com/forumdisplay.php?f=17

Please make your way over to the Parents Forum. Lots of Dads and Moms going through he same trails. They've been a great support to me.

Oh, my daughter is on 20mg of pred and we call her mood rages "princess flares".:rof:

Hi Jazmom, welcome to the forum make sure you check out the parents of IBD kids section. My son is also 13 and had been dx's with Crohn's for 3 years.

While it is true diet will not cause or cure Crohn's but I believe that it plays an important factor, you can't read all the stories on here and not begin to believe that as well. I suggest keeping a food journal, you will find out what and if he has any "trigger" foods. My husband also has Crohn's and tomato sauce will do him in everytime.

We like you were diagnosed quickly. Jack did not eat and only picked at his food, complained every morning about his stomach hurting (but not at any other time), lost 12 pounds and was very pale. His Ped sent him for bloodwork that same day of our appt. and we had an appt with the GI within 3 days and scopes within a week. Although GI said at 1st appt. he was 95% certain it was Crohn's and scopes would confirm it.

Jack started on nearly the same regimine as your son but it was Imuran as opposed to 6MP although it is the same class of drugs and does the same thing. I can't remember if we were told low residue or not I do remember we were told no seeds, no popcorn. Nothing about EN. Although I wish we would have and been put on at least supplemental at that point. Jack did not really gain any weight other then the 12 lbs lost initially and grew very little over the next 3 years. We just started supplemental EN about a month ago and he has gained 20 lbs and has even grown some although we have not measured him yet, he is now taller then his brother and they were the same height a month ago. I'm also assured that he is getting his nutrition and calories. We are using Peptide which has the proteins further broken down then Ensure or Boost and yes there is corn syrup and sugars but it gets the calories they need for growth and development into them quickly and easily digestable.

We are not big sweet/junk food eaters, Jack has always preferred things like brussel sprouts and spinach over cake. To see him looking so healthy and full of energy, I personally will deal with the "junk" in the drinks.

Has he had his Vitamin D, Vitamin B12 and Magnesium levels checked? A lot of Crohnies are very low in these levels and many believe they play a role in disease management and especially energy levels.

Hope he is feeling symptom free soon. It can take a while for 6MP to start working and to get to the right levels. I'm assuming he is having frequent labs as that is pretty standard with 6MP to check for liver function as well as theraputic levels of the 6MP. Ideally he would be weaning off prednisone at the same time the 6MP is going to work.

I just got a call from the DR. Jaz has lab work done yesterday, he has some sugar in his urine so we reduce to 35mg on the prednisone. His vitamin D was checked as well, but she said lab results for that takes a little longer. No mention of magnesium or vitamin B12. Although, the dietician told me when i asked about B12, that in her findings , she has never found low B12. So...again, i guess i will be having to ask to have these checked.

Jaz showed food intolerance when he was small to spinach.

I will look into pepide. I have read some say no seeds, popcorn

I am glad to hear he is doing well with the EN. It is interesting to see the different approaches prescribed, what works well for some and others not.

Hope your son continues to improve as well

Hello Jazmom. My daughter was diagnosed at 14 years old. She eats whatever she wants.
But I keep away seeds, popcorn and corn. I believe the reason is that If the intestine has ulcers or fissures, those foods will get stuck, so there's risk of infection, inflammation and so on. Also spicy and grease foods. ( I can't take french fries away). Make a diary of foods, and you will find out what triggers pain or loose stools. Best wishes.