I think my son has crohns...advice please

[Worried mama]

Hi all. First time posting here. My 12 yo son has not grown in over 2 years. Endo could not find a cause..he has always had mouth sores and sporadic cracked corners of his mouth. Recently he's had persistent diarehha with specks of blood, not much, and mucus. Also blood tests showed low vit D. I am convinced its crohns, after years of searching for an answer to his lack of growth. We have GI appt this Thursday and I'm going to push for a colonoscopy and endoscopy. In the meantime, what can I do to ease his symptoms? I feel like there is no way he's getting any nutrition and I'm worried sick, have not slept in days. What should I cook him? Is one of the ensure drinks able to help at all? He can manage to drink about 1 a day, but he doesn't like it. I'm desperate. What about baby food? Is that ridiculous? I just want him to feel better and start growing so I know he's healthy. I feel like he is so malnourished. I know dr will answer many of my Qs, but I want to do all I can while we wait. Advice?

 

[DJW]

Hi and welcome.

I'm sorry your sons not doing well. We have a great group of parents here. I'm sure they'll be along soon.

You could try cutting out dairy and gluten. Keep in mind if he's gluten free and the GI checks for celiac disease it will come back negative. Also keep a food and symptom journal to try and pinpoint triggers.

Sending you both my support.

 

[Mehita]

I'd hold off on cutting out gluten just yet. One, it's hard for kids to do (emotionally and social) and two, like Dave said,it can produce false negatives for Celiac testing, which I think you should request on Thursday.

Another test to consider is a fecal calprotectin in case your son is one of those kiddos who has normal labs, but obviously still has something going on.

If your son doesn't like Ensure, there is also Boost, Orgain, Carnation Instant Breakfast... all available in the grocery store. There are also smoothie recipes out there that you can make up using Ensure, etc. maybe changing the taste or texture might appeal to him?

Good luck Thursday! Be sure to ask for copies of everything.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear about your son. My son was dx'd last yr at the age of 8. He shared some of the same symptoms as your son. I know you want to get some nutrition into your son, but I would not alter his diet too much until you see the GI and tests have been completed. An ensure or boost a day isn't a bad idea though, and you could try adding it to a milkshake or smoothie to make it more tasty. This is the only way I can get them into my son! And I wouldn't give him anything high fibre right now, and feed him things that are easily digestible-soft, cooked veggies, peeled fruit, white bread. I know it seems backwards to do this when you are trying boost his nutrition, but it will be easier on his digestive tract. My son couldn't handle lactose when he was flaring, so he had lactose-free dairy once all tests were completed and until he was in remission. Now he's back on regular milk. I hope the GI agrees to the scopes and you get a dx and treatment plan, and get your back on the road to growth and feeling better.

 

[Henrietta78]

I am familiar with the feeling of just wanting your kid to eat! You mentioned baby food...I don't think that's ridiculous at all! Perhaps not a commercial prepared kind, but in terms of what you would give a baby in that first year- bananas, applesauce or peeled apples, avocado, lightly toasted low fiber bread, oyster crackers, broth, pasta, lean beef, chicken, yogurt etc. The idea is to find nutritionally dense foods that he can tolerate that will be soothing to his bowels. I second the fecal cal test as it

 

[lenny]

Maybe try the intro SCD? it's supposed to be very easy on the gut.

 

[Jenn]

Welcome and sorry to hear of your son. Hopefully diagnosis or ruling everything out will be a quick process for you. Unfortunately, there's not much you can do while you wait. You could try some diet modifications like lactose-free milk, bland foods, lower fiber. The Ensure shakes are great nutrition, but my son quickly hated them too, he liked the Resource Breeze fruit juices a little better. You could try your own smoothies. Add a comprehensive multivitamin like Centrum chewables - many don't have iron, selenium, or magnesium. Discontinue any ibuprofen use. For the mouth sores, we use a magic mouthwash: 1 tsp liquid benadryl mixed with 1 tsp maalox, swish and spit (don't swallow), a couple times a day. Best of luck!

 

[SupportiveMom]

Sending you support through this difficult time...
my daughter was diagnosed a month before her 12th birthday. She will now be 14 in a couple of weeks. You sound like you are doing all the right things. Ask LOTS of questions to the GI. Bring any supporting documents you have, even if it is something as simple as his growth chart or bathroom trip history. Anything that can help the doc get your son the help he needs. Like others have said, food is tricky. I agree not stepping away from gluten just yet but dairy is a big trigger for many of the kids so there is little harm avoiding it. My daughter drinks lactose free milk without issue. My only suggestion is to find something he really likes, shakes, spaghetti, pizza something & slide in veggies as much as possible. When my kid was at her worst nothing but the BRAT diet is all she would eat. (Bananas, rice, apple sauce, toast) it isn't much for vitamins but it slows down the weight loss. Keep us posted.

 

[Worried mama]

Thank you all for the advice and support. Appt is tomorrow and I will post an update...