Please Help- Son has Crohns

[mreyn]

My son was diagnosed within the last year for Crohns. His seems to be in the ileum with ulcers , etc. His main problem (of many) is vomiting, losing weight and anemia. We have been from dr, to dr.. thru scopes, biopsies, blood draws, etc. I am so confused and trying to do the right thing to help him but everything I read contradicts each other. Don't eat certain things.... or it doesn't matter what you eat.... etc. I need advice!!! I had a natural dr put him on a supplment regimen, but that is so expensive, we're trying to keep up with it. He seemed to do a little better but is now vomiting again. He had gained only 3 pounds... he doesn't want to eat very much, eats small amounts, and sometimes.. keeps it down. He's always had food aversions even in the high chair when he was too young to just be "picky" . The only way I can get fruits and veggies in him is thru juicing and smoothies.. of course, some people say that's bad for him. He has always steered towards a bland, white diet..like waffles , pizzas, chicken strips, mashed potatoes, macaroni and cheese , corn dogs. Yes, I know they're not the best for you, but the kids go to eat something.

The Gi dr says it doesn't matter what he eats, food doesn't affect it, however, I've also read food sensitivites can keep you inflamed. I don't know if he should go to an allergist, or what in the world my next step is.

I have spent countless hours, endless nights, bought tons of books, read about diets, and it seems like nothing has helped... enough.

We went through hell watching him deteriorate and when we found out it was Crohns, everyone was like, Oh, it's good that's ONLY what it is.. I wanted to yell at the top of my lungs at them because they have no idea what our entire family has been through.

PLEASE help me get my baby better. He just turned 12 on August 15. He's had a tough time with this, he's been sad, depressed, his eyes are dark, he's sooo thin, low energy, and his tummy pains may hurt me more than him. I'm at a loss...

 

[Rebecca85]

Is he taking any prescription medication/treatment at all? Sounds like the natural approach isn't working. And he needs treatment sooner rather than later, the longer his inflammation is allowed to go unchecked the more scarring will happen in his intestines- and that can get nasty.

I personally would look into enteral nutrition- basically instead of eating, you drink milkshakes which have all the nutrients you need in them, predigested to make it easy on the guts. It has a good success rate,and the only disadvantage is that some people find it really hard to stick to.

 

[mreyn]

I was just reading about multivitamins/minerals. He's been taking Intra Kids All in One.. but I wasn't sure if everything in there was ok for him. I just read that bifidus is NOT good for people with IBD.

So does anyone have another recommendation for something as complete as Intra Kids without the bifidus?? Intra Kids doesn't have bifidum, but it has bifidus.

 

[lost kitten]

I'm sorry your son's going through this, it really is a sucky thing for a kid to have to deal with

It's hard to say what he should or shouldn't be eating as everyone seems to have different 'good' and 'bad' foods. Generally speaking though, low residue stuff like mashed potato, steamed fish and chicken etc seems to be OK, so maybe try some things like that.
My best advice would be to start a food diary, have him write what he eats and what symptoms he has afterwards. You should be able to figure out what foods upset him and go from there.

 

[Tesscorm]

Hi mreyn,

I am so sorry for what you are going through! It is heartwrenching to see your child suffer and not be able to stop it! I am so glad you've found this forum, it has been invaluable to me. The members here are wonderful - always willing to share their experiences, knowledge and support. Please look to the Parents of kids w/IBD - lots of parents there who completely understand your worries and frustrations, they will be more than happy to help you with questions, etc. Also, many, many with boys your own son's age. Here is the link to the forum http://www.crohnsforum.com/forumdisplay.php?f=49

As to some of your questions/concerns...

Diet - it does vary greatly from person to person My son was told no seeds, pieces of nuts (smooth peanut butter is fine), popcorn and limited veggie/fruit skins. Many people with Crohns have sensitivities to dairy, glutein and high fibre. But, really does depend on each person - my son has had no problems with any foods??? Although he most certainly has always preferred a diet like your sons - even at 18 now, he barely eats any fruits/veggies and you pretty much described his favourite foods! :facepalm: Please look to the the Diet, Fitness & Supplement area (link below) for more information and the Parents section also has a diet for kids subforum. Having said all this, diet can play a part in managing symptoms - ie diarrhea may be helped by rice, upset tummy by a bland meal such as oatmeal, etc. http://www.crohnsforum.com/forumdisplay.php?f=17

As far as treatment, you don't mention what treatment your son is or has been on?? My son was treated with Enteral Nutrition - it's a very common treatment for children everywhere but, for some reason, much less commonly used in the U.S.?? If this hasn't been suggested to you, you may have to be the one to ask your GI. It's success rate at inducing remission is comparable to steroids, provides all necessary nutrition, allows bowel rest, has anti-inflammatory and healing properties and has NO side effects! It is not as successful, however, at maintaining remission as medications. It is a challenging treatment as it usually means approx. 6 weeks of no food, formula only (patient non-compliancy may be a reason some GIs do not suggest it??). My son did the six weeks and has continued on 'maintenance' EN for over a year now (with a regular diet added back). Many people also use it as a 'supplement' to help with nutrition and weight gain. Here is a link to the Treatment forum as well as a link to Kids on EN in the parents forum.

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthread.php?t=36345

Please have a look around the different areas of the forum and ask questions. I'm sure there will be more members/parents to welcome you and offer their advice!

Good luck :ghug:


Edit: took so long to respond, I see other have already done so... hopefully, I haven't just duplicated what's been said!

 

[mreyn]

thank you

Thank you all so much for your replies. It makes it a little easier to not feel all alone. He was first started on steroid treatment that targets the gut for 3 mths which did absolutly nothing. That GI said the next step was systemic meds . So I found another GI which had him on flagyl which seemed to do pretty good and he is on Pentasa 3 x daily. I did that along with the natural supplements. The natural supplement program actually worked REALLY well as he wasn't sick the entire time we were following it, also his anxiety, and sadness got much better. He finished them, and since they cost about $300... it's kind of tough. We do have a powder drink the natural dr recommended.. it is Ultraclear sustain and he also takes a powder called Glutagenics before he eats. The supplements were numerous and I wasn't sure what is necessary to keep him on every day from now on. He is taking (or was until he finished them) mucosacomp, Vit D-3, Chlorophyll, and several other things. The multivitamin he was been taking is liquid... Intra Kids ALL in ONE and is MUCH more than a multi. It has probiotics, digestive enzymes, and tons more. But it has bifidus and I read that bifidum is bad for people with IBD.. so now I'm not sure if that is ok for him... I think he did really well on it. It is expensive, about $70 but if everything were purchased seperately it would be much more. It was recommended by the natural dr I just want to make sure I'm not giving him things that will hurt his insides.

Oh, he's also taking nystatin prescribed by a D.O.

Thank you all for your information and support.

 

[WhoKnows]

My doctors tell me the most important thing is my diet. This case could be much different then mine, but some foods most people think of as "everyday" foods, can cause major problems. Especially if eaten on a regular basis. I've had some major setbacks after ingesting foods that I know I shouldnt have eaten. I am no expert, I am going by the information provided to me by my doctors, your sons case could be different.

 

[Thermo]

All doctors will say food has no bearing on the disease and they are right, when he is in remission its important for him to pack on the 'fighting weight' for his next flare. However Crohns patients know that you have open sores in your stomach and certain foods do stop you from healing, but you will have to find what works for him. Low residue diet works for me every time as thats bland and easy to digest allowing my stomach to relax. I know its rough already but the worst thing you can do for him is allow him to dictate what he eats, if something hurts him thats one thing but he cannot afford to be like a normal kid and be picky if he doesn't like something. Correct me if I am wrong its been so many years but I think the patent for Pentasa ran out and there is now a generic, can someone vouch for this? If you cannot afford Pentasa I recommend sulfasalazine as the active ingredient in Pentasa is sulfasalazine just in a time release. If he has Crohns, Pentasa is not going to do much for him as it's approved for UC. And its a maintenance medication at that and it doesn't sound like he's in remission. Doctors try to put young patients on it to spare them the toxicity of 6MP and biologics. At the end of the day if he is getting worse and cannot keep food down then the Pentasa is not working and you need to attack it harder. When I was a child I got over a flare by mixing sulfasalazine tablets, mesalamine enemas, and steroids. The vomiting is the tough one to get over, does he have upset stomach with spicy foods? You might look into getting him a PPI the steroids and antibiotics probably wiped his stomach lining out. That might explain some of his vomiting. The low weight and anemia needs to be attacked via supplements, make sure to get his vitamin levels checked. It's a life long battle don't let it get you down, I only remember the good things about my childhood never the times I was doubled over in pain. Just keep him laughing and try to feed him more natural things without all of the preservatives and he will do well, but there is no cure it's always been about managing symptoms.

 

[Thermo]

Also I forgot to answer your concern about bifidum, I would ask your doctor but bifidum is ok to take, all probiotics are technically not good for people with IBD as immunosuppressed/compromised people stand a risk of the bacteria escaping the intestines due to micro perforations in the intestine wall and the bateria colonizing your heart. But I don't even think I have ever read of an actual case of this, I think it's just theoretically possible. Saccharomyces boulardii is the one that you should be cautious with if he is immunosuppressed as it's a yeast which is a fungus. But if he is just taking Pentasa he is not immunosuppressed I would recommend picking this up and adding it to the other probiotics. (Obviously ask your doctor before doing any of this, children patients with Crohns are not like adult patients)

http://en.wikipedia.org/wiki/Saccharomyces_boulardii

 

[taylor27]

My son was diagnosed within the last year for Crohns. His seems to be in the ileum with ulcers , etc. His main problem (of many) is vomiting, losing weight and anemia. We have been from dr, to dr.. thru scopes, biopsies, blood draws, etc. I am so confused and trying to do the right thing to help him but everything I read contradicts each other. Don't eat certain things.... or it doesn't matter what you eat.... etc. I need advice!!! I had a natural dr put him on a supplment regimen, but that is so expensive, we're trying to keep up with it. He seemed to do a little better but is now vomiting again. He had gained only 3 pounds... he doesn't want to eat very much, eats small amounts, and sometimes.. keeps it down. He's always had food aversions even in the high chair when he was too young to just be "picky" . The only way I can get fruits and veggies in him is thru juicing and smoothies.. of course, some people say that's bad for him. He has always steered towards a bland, white diet..like waffles , pizzas, chicken strips, mashed potatoes, macaroni and cheese , corn dogs. Yes, I know they're not the best for you, but the kids go to eat something.

The Gi dr says it doesn't matter what he eats, food doesn't affect it, however, I've also read food sensitivites can keep you inflamed. I don't know if he should go to an allergist, or what in the world my next step is.

I have spent countless hours, endless nights, bought tons of books, read about diets, and it seems like nothing has helped... enough.

We went through hell watching him deteriorate and when we found out it was Crohns, everyone was like, Oh, it's good that's ONLY what it is.. I wanted to yell at the top of my lungs at them because they have no idea what our entire family has been through.

PLEASE help me get my baby better. He just turned 12 on August 15. He's had a tough time with this, he's been sad, depressed, his eyes are dark, he's sooo thin, low energy, and his tummy pains may hurt me more than him. I'm at a loss...

Hi there, the worst thing to experience is your child going through this with nothing you can do. Let me tell you what helped me. I was diagnosed with crohns and ibs as well. My gi also put me on steriods which did nothing. I don't go to her anymore. I went to a naturopath and got my food intolerances checked, not food allergies. Go to a naturopath not an allergist. Once my intolerances came back I had to stop eating dairy gluten and eggs and ever since I listened to her I have not been sick since unless i eat what i was told not too. It was shocking to find out food controlled my whole sickness. I'm not sayin this will help your son but it has gave me a new life and i think it is worth it. I went thru depression because all of a sudden I couldn't eat anything either (you would be surprised that literally everything has one of those ingredients in it) but literally I just started taking a pill called histame and now I can eat again. I am so happy I can't even explain it. Please get his food intolerances checked it might make him better. I'm posting all over the site to let ppl know because no one deserves to go through this. Let me know if you have any questions . Good luck

 

[mreyn]

I wonder if I can just add Histame and see how or if it helps....

Yes, he had a round of sacchromyces (sp?), from his natural M.D. then he was given another round of probiotics (different ones) and he's supposed to take another round, but I looked in his Intra Kids and it's all in there. So I'm just wondering if maybe it's not enough in there and that's why he was supposed to take extra. He doesn't eat spicy foods, never has. And he's not just a typical picky kid eater refusing to eat. He's had food aversions since in a highchair.. literally could not swallow carrots, greens, etc. I tried numerous times! I have read this is a condition and has a name, but I can't remember it right now. He was put on prevacid which did nothing. Then they wanted me to try him on nexium.. which if I remember right was basically the same thing and had side effects so we didn't try that one.

We tried a naturopath, she put him on a ton of supplements and did a hair test but never said anything about food intolerances. I could take him back to her. The problem is that all of the more natural approaches are SOOO expensive and insurances wouldn't cover them. I really appreciate each and every one of your responses and read them diligently. I was in tears yesterday before finding this forum, because of another "group" which I had said I got my son Chex gluten free apple cinnamon and he loved it! Wow, I was reprimanded and told that was not healthy, JUST follow an scd diet, period. I'm just trying to learn and do the best for my child. Everyone is different and no one approach works for everyone.. which is one of the reasons its so hard. Thank you all for being so kind.

 

[Thermo]

which I had said I got my son Chex gluten free apple cinnamon and he loved it! Wow, I was reprimanded and told that was not healthy, JUST follow an scd diet, period.

I lived off Chex gluten free Cinnamon for 2 months, they don't know what they are talking about. I like how you are reading what everyone has to say but trying to figure out what will work best for him, keep it up, sometimes it takes a lifetime to figure out what works best.

 

[Mike4414]

My son was diagnosed within the last year for Crohns. His seems to be in the ileum with ulcers , etc. His main problem (of many) is vomiting, losing weight and anemia. We have been from dr, to dr.. thru scopes, biopsies, blood draws, etc. I am so confused and trying to do the right thing to help him but everything I read contradicts each other. Don't eat certain things.... or it doesn't matter what you eat.... etc. I need advice!!! I had a natural dr put him on a supplment regimen, but that is so expensive, we're trying to keep up with it. He seemed to do a little better but is now vomiting again. He had gained only 3 pounds... he doesn't want to eat very much, eats small amounts, and sometimes.. keeps it down. He's always had food aversions even in the high chair when he was too young to just be "picky" . The only way I can get fruits and veggies in him is thru juicing and smoothies.. of course, some people say that's bad for him. He has always steered towards a bland, white diet..like waffles , pizzas, chicken strips, mashed potatoes, macaroni and cheese , corn dogs. Yes, I know they're not the best for you, but the kids go to eat something.

The Gi dr says it doesn't matter what he eats, food doesn't affect it, however, I've also read food sensitivites can keep you inflamed. I don't know if he should go to an allergist, or what in the world my next step is.

I have spent countless hours, endless nights, bought tons of books, read about diets, and it seems like nothing has helped... enough.

We went through hell watching him deteriorate and when we found out it was Crohns, everyone was like, Oh, it's good that's ONLY what it is.. I wanted to yell at the top of my lungs at them because they have no idea what our entire family has been through.

PLEASE help me get my baby better. He just turned 12 on August 15. He's had a tough time with this, he's been sad, depressed, his eyes are dark, he's sooo thin, low energy, and his tummy pains may hurt me more than him. I'm at a loss...

Hello,
I am a 24 yr old male and I have Crohn's. I had the same issues. I lost 40 lbs. My problems also are in the ileum.

My doc put me on corticosteroids initially. I should first say I was recommended to a regional center in Europe which only handles the worst cases and takes 100 patients. They have many special treatments there. These "special" treatments, no matter how tempting, usually have high risks.

Back to the meds. I spent 4 months on corticosteroids and it helped marginally. The rest was exercise and eating right. The part for me, is eating the right foods, but also preparing them right. Foods which are easy to digest should help. This means, if he can have, lets say, potatoes, try making mashed potatoes. Make the food as small as possible. This helps me.

Lemon balm tea is also effective for me. Other teas like oak bark have stated to help, but personally, Lemon Balm is gentle and has a good smell and taste and is anti inflammatory. I grow the plant itself and it isn't difficult to grow. I have found that store bought teas don't help.

Last but not LEAST, raw goat milk. First, it has to be raw and goat milk contains TNF cells, or anti TNF. I actually forget. But, some sort of relationship with TNF cells cause inflammation in the body, which is also responsible for arthritis. I had 1 glass a day and this helped. In fact, it was the best. It coats the stomach and intestinal tract. Check into these things. Everyone is different so make sure he can have this stuff!