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I am so frustrated, My son has been in the hospital for 9 days now and the docs keep trying to put a feeding tube in and he keeps throwing it up.  So now they are trying the Boost + diet and making him drink 8 in a day and also throws that up.  It is now almost 2:00 and he has to drink 8 or he gets the feeding tube again.  He hasn't even drank half yet.  Now he is complaining of leg pain and nobody even seems to be checking it out.  He says it hurts to much to even walk around.  Any advice for me out there as I just don't no what to do or how to get him to drink....

 Reply posted for melrosesun.

I am so sorry for what you're going through.  My daughter also has crohns, diagnosed at age 15, almost 3 years ago.  One thing she has that is somewhat common with Crohns, is a dairy allergy.  She has had this allergy for quite some time, and does her best to avoid it, but knows when she's had too much because her stomach gets bloated and full.  Another thing to look for is a gluten-allergy, best diagnosed with a biopsy of the intestines, but this doesn't always hold true either.  Believe it or not, food allergies are very common in crohn's disease patients. Medical Doctors are starting to realize this.

With the vomiting, is there any concern about there being a dairy allergy?  I don't know how much diary is in his feedings, but that is worth checking out; because if it is, the diary is just making his stomach feel worse, full.

Hope this helps.

 Reply posted for melrosesun.

I can understand how you feel.  My 15 year old son was hospitalized twice since sept. 09.  He is doing better and is being treated with remicade.  As far as the "Boost" is concern, have you tried carnation instant breakfast mixed with whole milk (if not lactose intolerance)  I was told by my doctor that it is vertually the same thing and cost less.  You might want to talk to your doctor about that.  I also think they taste better too. Be glad that he is home and he will begin to recover. Hapy holidays and a much better new year.

 Reply posted for melrosesun.

I am sooo glad they are releasing him today.   Many times the hospital setting is just too much and has a very negative affect.  It is devastating.   Hopefully the combination of being home, coupled with add'l combo of meds, and tube feeding will get him on to the road of recovery.  

Best Wishes,

Lizzies Mom

 Reply posted for melrosesun.

Well he has been put back onto a feeding tube as of last night.  They are going to release him today with the feeding tube only because his emotional state has gone way down, he is very depressed and feel he may be better off at home.  No CT's have been done.  They have increased the Humara up to 80 MG and have started Methrotrexate, and are going to wait a couple of weeks to see how he responds to this treatment and if no change they are going to repeat the colonoscomy and endooscomy.  Thank you for all your support I was very frusterated yesterday and at witts end.  I am better today.

 Reply posted for melrosesun.

I am sorry you are going through a "rough patch" as I have turned to call these challenging times that surface from time-to-time.   I know how hard it is to have a child hospitalized and feeling like no progress is being made.   As a parent, I feel totally helpless.  It is so frustrating! 

My daughter has to take only 1 Boost Plus a day and most days it is a horror.  Unfortunately, there isn't much you can do with a Boost to make it appetizing.   Have you tried it??   I have....not the best thing in the world.  My daughter prefers the chocolate.   Somedays I add ice cream to make a thick shake (nice added calories)  or freeze it then give it a quick whip in the blender for a smoothie.  

Do you have a good rapport with your son's pedi gi?   If so, can you just put it out there.....what the  h--- is going on.  Nine days and still no progress??   My best advice is follow your gut instinct and don't leave any stone unturned.

My thoughts and prayers are with you and your family.   Keep us posted on progress.

Lizzies Mom

 Reply posted for melrosesun.

You as the parent have the right to question medical treatment if you do not think it is in the best interest of your child. My concern would be why is he throwing up? Have they done a CT scan to make sure he does not have an obstruction?? Make sure you speak with the attending- not a resident or fellow. Ask him to explain what exactly is going on. It does not make sense to me as a nurse to continue to try and feed someone who is throwing up. Investigate the cause- and slowly introduce liquids etc while adv the diet as tolerated.