I wish I had an easy answer for you! As my son is a picky eater, before and since diagnosis, I do understand your frustration and worry.
My son's refusal to eat certain foods has caused many an argument at home (for years!!!).
I know your son is only 12, so even harder to convince but, perhaps he needs to be gently made a bit more aware of the importance of following the treatment and possible consequences of not following the treatment. I wish I could shelter my son from all the concerns, implications, etc. involved with Crohns as I believe just accepting the diagnosis is enough to deal with, however, I do periodically have to remind him that by eating or not eating certain foods, he is risking a worsening condition of Crohns. I’m sure you can imagine it’s a tough balance to find (especially with a younger child) – not wanting to add more worry and concern on their shoulders but making sure that they understand they are facing a new ‘normal’ and must respond to it. Taking this route would not be my first choice (would actually be my very last choice) for my son or yours but, perhaps, at a certain point it's the better option than not accepting the treatment. I hope I'm not coming across as being harsh, that is not my intention, only suggesting this because I realize that the alternative of not accepting this treatment would be worse.
However, going back to your other thread, and back to the NG tube... before taking the harder line (above), perhaps speak with your son and his GI re the NG tube? It has been a godsend for my son. Contrary to so many comments here about the difficulties (so surprising to me
), it was easy for him to learn. It would have been extremely difficult, if not impossible, for my son to drink the modulen at these quantities. We would have been forced to use steroids (or other medication) as a treatment. It seems that our children's hospital here, in Toronto, is quite progressive in their use of this treatment as a first line option and approaches it with a higher expectation of children. We were not given the option to drink the formula; other treatment options, such as steroids and its side effects, were briefly discussed but not encouraged as a first treatment. My son was simply told that he needed to learn to insert the tube each night, have the feeding overnight and remove the tube in the morning (leaving the tube in was mentioned as a 'last alternative'). I’m sure his age was a factor in how it was presented but, perhaps with this approach, my son was more accepting??? We were told that they have many patients as young as 10-11 managing the NG tube (and actually had one six year old doing it).
I wish I had better suggestions for you, its so upsetting and heartbreaking to have to force your child to deal with these issues.
Good luck :ghug:
