Is the Top Down Approach best in this case?

[Dar]

Good Evening,
My son, Jacob (age 19) was diagnosed in July of this year. Unbeknown to his father and I he had two years of diarrhea (up to 10 times per day) and only decided to tell us when he started having bloody diarrhea. He has had a colonoscopy, MRI and numerous blood tests. He has one stricture in her Terminal ileum which has caused no symptoms (?). His current GI doctor has decided to take a very aggressive treatment plan and he is on the following:
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Remicade - every 8 weeks (5 mg)
Pentasa
Pro biotics
Azathioprine
Ferrous Sulfate
Vitamin D

His current bowel movements are normal (YAY - first time in over two years) but I am a bit concerned about all these medications. His Hemoglobin has risen and he had thankfully gained some weight. Has anyone else had their doctor do a "top down" approach? Also he is a freshman at college and I INSISTED (begged, threatened etc) to register with the disability office. BEST thing he could have done. He misses a lot of classes for doctor appointments, remicade treatments (especially the three back to back appointments) and blood draws. He is excused for ALL of them. If you have a child in college I would highly recommend it!. Thanks for any insights! Dar

 

[Clash]

My son is a freshman in college this year, 19. He was dxed at 15 and went straight to remicade. His disease was also located in his TI. We eventually had to move to high dose remicade, shorten the schedule and add methotrexate. The methotexate over one of the thioprines was our GIs choice but there are a number of kids on the combo your son is on here.

My son wasn't able to reach full remission on the combo and we had to eventually move to schedule an ileocecectomy. He is now on Humira and methotrexate.

 

[Maya142]

My daughter was also put on similar meds when she was diagnosed: Remicade and MTX. They worked wonderfully for the IBD and after 8 months of Remicade, her scopes showed significant improvement (her colon was "beautiful" according to the doctor that did the scope!).

M had no side effects from the Remi, besides some tiredness after the infusion but had trouble with MTX side effects and we eventually had to discontinue it. She was then put on Imuran, which helped for a while. She had mild nausea with Imuran that went away after a week or two.

M is now in college, though she's taking the semester off because of health issues. She did register with the Office of Disabilities at school and they were a great help to her. She has also gotten good at advocating for herself.

 

[crohnsinct]

while top down is a popular approach in the younger kids, it does seem with the stricture and bm's your son's disease is on the severe side and warrants biologics.

My daughter dx'd at 12 was put on remicade at dx. She has been on it for almost 4 years and it has been great. No added infections, illnesses etc. only one side effect of psoriasis but compared to the crohns that one is easy.

Hope it works well for your son!

 

[Dar]

I appreciate your words of support and sharing your stories. I think his is on the moderate to severe level (GI doctor has stated it both ways) and I also think his age was a reason to "hit it hard!" I scan everything I can and hope that his stricture goes away or at least does not get any bigger. I am so grateful for this forum and plan to attend a local Crohns support group to meet up with people in person!

 

[Charlotte.]

To me, it sounds as if you found a really good doctor, as he also knows about the importance of vitamin d. No doctor ever mentioned that to me, (only when taking pred to add calcium and vitamin d) I had to do weeks of research to find everything online and in books.
The top down strategy seems to be pretty effective, there have been studies, you can find them on pubmed.gov.