Newly diagnosed

[Sascot]

Hi, my son is 12 and was diagnosed with Crohns last week. He has been having a flare up and was doubled up most of the weekend. Hate to see him suffering. Tried him on the Modulin on Saturday but it really made him feel very sick so couldn't force him any more.
Are there alternatives to the Modulin? I wish he didn't have to have the liquid diet and they could just treat him when the pain comes on!
I feel so sorry for him - he is not enjoying all the tests and seemingly endless blood tests, wish this part of it was over.

 

[scottmyster]

HI Sacot, welcome to the forum , i am very sorry about your son being in so much pain. i don't don't know if there is any alternatives to modulin. Is your son on anything for the pain? there must be something the doctor can give him at his age. My crohn's has flared up and all i can drink is liquids i don't know if your son can stand milk products but you can try Boost, ensure, or any other nutritional drinks and plenty of clear liquids make sure it gets lots of water to keep him from being hydated. The Blood test are important because they are checking for any deficiencys in his blood like vitiamin B12 and iron. This uasually is common in Crohn's patients. Also, is your son on anything for his Crohn's? i hope your son's pain will end soon. my thoughts are with your and will send you and little your son prayers your way. best wishes:rosette2:

scott

 

[AZMOM]

Well welcome to the forum but I'm sure sorry that your son is feeling so bad! :-(

Did the doctor start him on any medications? It is typical to try to knock down a flare with a tapering dose of steroids and then maintain remission with immunosuppression. I have only limited experience hearing about Modulen and haven't tried that yet.

Our gastro has mentioned that should we need to go the elemental diet route, he typically has most of his patients use an NG tube because the taste is so poor.

I know you have a lot to take in.....please let us know how we can help!

Claire's Mom

 

[DustyKat]

Hi Sascot and :welcome:

I'm so sorry to hear about your son, what a very difficult time for you and your boy. You have found a fab place for support and info though!

There are many alternatives to Modulen, like those mentioned by Scott. My son was on an elemental diet but only for a week or so and he was on Osmolite and Ensure. He much preferred the Ensure and he found refridgerated with ice was much more palatable.

It seems that in the UK they prescribe an elemental diet more commonly than elsewhere. Research suggests, particularly in children, that it is just as effective at inducing remission as Prednisone is. I know it can be a difficult diet to stick to for the normally required 6-8 weeks but Prednisone does have many unpleasant side effects also.

We understand how difficult these early days are hun...:hug:. The fear, the uncertainty, the pain and the suffering. Just know that we are here for you and if you have any questions please don't hesitate to ask. Good luck and welcome aboard!

Much love, :heart:
Dusty. xxxxxxxx

 

[Tesscorm]

Hi,

I'm so sorry to hear about your son. It is so difficult to see your child in pain and not be able to alleviate it. I hope his pain is beginning to subside today!

My son was treated with a liquid diet. He was fed Tolerex (another version of Modulen) only for six weeks and is now on the maintenance program for one year (can eat foods during day, continuing with 1/2 dosage at night). However, Tolerex is not a shake, not drinkable because of the taste. He ingests the formula through an NG tube overnight. He inserts the tube each night and removes it in the morning (if preferred, the NG tube can stay in - it is just disconnected from the feeding tube). It certainly isn't a 'pleasant' thing to do, however, he really did not have much trouble learning to do it on his own (only a couple of days). My son is a bit older (17) so it is easier for him to comprehend the need for the treatment. Also, Modulen is not available in Canada yet so he did not have the option to 'drink' the formula (and, my understanding is that the Ensure available in Canada is not the same formulation as that available in the UK).

I have attached a link to an 'explanation' I posted last week re the enteral therapy. I'd been told that the enteral therapy was almost as successful as steroids in attaining remission, however, had never been given a clear explanation of exactly how it worked (at least, not in layman terms). His GI explained it to me last week and I posted his explanation as best I could. I have attached the link.

http://www.crohnsforum.com/showthread.php?t=21664

All the best for your son! Hoping that he is feeling a bit better today.

 

[Sascot]

Thanks everyone. My son is a little better today - made it to school which was good. Will need to go into all the alternatives asap. Still not managed to get hold of anyone who can help - very frustrating. Hoping the Barium meal doesn't make his stomach sore again!!
Do you think a 12 year old could learn to put the nasal tube in at night? Seems a more "pleasant" way of taking the liquid.

 

[Silvermoon]

Both my brother and I were diagnosed around the age of 12 (give or take a year) and we were both on elemental diets at one time or another.

I was unable to tolerate the NG tube so the doctor actually placed a feeding tube directly into my stomach from the outside. I wore baggy clothes at the time and for the most part the tube was not noticable.

My brother tolerated the NG tube, but rather than take it out every morning he just left it in - went to school, played hockey and everything. Of course, we went to a fairly small rural school (about 500 kids from grades 1 to 12) and the teachers were extremely understanding. My mom went to my brother's class the first day he went back to school with the tube and she and my brother gave a little talk to the class on what it was and why it was there, and most everyone was good with it. There were, of course, one or two that would bug him about it, but I think those kids would have found ANYTHING to bug others about.

All that being said, there were afew times the tube did come out on him, and he was able to just reinsert it on his own and go on about his day - I guess I was the one born with the gag reflex in the family - LOL!

It's not pleasant, but getting the right nutrition in at such a critical age can be so important, and make things a lot easier on him later in life.

I hope you guys find the right solution for you.

Good luck!

 

[Tesscorm]

Hi Sascot,

As Silver mentioned, the gag reflex seems to be the difficult part of inserting the tube. (I told my son to 'visualize' the size of what he was swallowing and how small it actually was compared to a big bite of food.) For the first few days, my son said that inserting the tube felt like when you get water up your nose. But, it only took him a couple of days to get the hang of it and by the second week, he was asking me to 'time' him to see how quickly he could do it! LOL (I think it took him less than 10 seconds.) Our 'NG' nurse said that they had patients much younger who were able to do it but, I think the idea of the NG tube is less 'scary' for older kids.

Coincidentally, a friend of mine also has a daughter with Crohns. She is 10 years old and is just finishing up her 6 weeks of a liquid diet. She also used the NG tube, however, she chose to leave the tube in place. She was not up to inserting and removing the tube each day. But, the tube did not limit her too much during the day - she went out with friends, to parks, etc.

A 'side' benefit is that my friend's daughter needed to do an MRI and drink the nasty liquid that is part of that test. During the last test, she had difficulty drinking it and ended vomiting and having to redo it all. At this last MRI, since she had the NG tube already inserted, they gave her the liquid through the tube and everything went much more smoothly.

I'd like my son to drink coconut water as I have read it is quite healthy and anti-inflammatory but my son does not like the taste at all. I'm actually going to ask the dietitian if I can mix his formula with the coconut water instead of regular water... can get both down in one shot and my son liked that idea!

So the NG tube does have some 'extra' benefits...

Good luck!

 

[Dexky]

Welcome again Sascot!! I'm glad to see you are getting such good advice. I like the idea of elemental diets vs. pred. Good for you for taking the initiative to learn as much as possible so early after your son's diagnosis! He'll have a much smoother journey because of you!!

 

[vness1208]

hello and welcome, Im sorry about what your sons going through. I hope he gets feels better soon and get the treatment he needs. good luck.

 

[Jennjenn]

Hi welcome

I feel bad that your son is not feeling well. I really hope that there is some relief for him soon.

 

[Mumof4]

Hi my son is also recently diagnosed and aged 12. He is on modulen for eight weeks. He is lucky in that he can tolerate it orally, but as others have said it is an option to have it via NG tube. The point of modulen is that it gives the bowels a rest to calm inflammation but it also contains an anti inflammatory to help as well. It has an excellent response rate for settling a flare without resorting to steroids which have side effects. I would suggest going back to the doctor who put your son on modulen and asking about an NG tube. It is worth noting that if his issues are not being addressed that even if he is not experiencing pain there is damage being done on the inside which you cannot see or know about at this stage but which will cause him problems in future.

My son is on week four and has already put on over 3 kg since starting his pain is gone and apart from one day he has no bleeding and very little diarrhoea. It really is worth persevering with. I hope your son feels better soon.

 

[Sascot]

Thanks everyone. His pain is gone just now - been to school all week so far. Off to the hospital for his barium meal tomorrow

 

[scottmyster]

HI Sascot, it's very up lifting to hear that you son is doing well now. Keep us update on his condition. best of wishes.

scott