1) no going back to school until you are having 4 or less BM's a day without the aid of steroids..her response "Great! then I am never going to finish!".
2) Gain at least 8 pounds back
3) get a symptom tracker AND USE IT! ( she has one on her iPhone but never uses it even though the phone is attached to her hand.
4) update us weekly as to your symptoms/health status
5) make an appointment with a GI at one of the major centers near (2-3 hours away) school.
Good point MLP...but argh! A summer with a 19 year old who was just forced to withdraw from school on steroids #notenoughwineSo I don’t agree with number 1
Since entviyo can take 6-12 months to be effective
CRp near normal yes
Be off Oral steroids no
Yeah, that is something to clarify with her GI...I'm still mad at him too!!But judging [from the] actions of late the guideline is, call when you are heading toward sepsis and go to ER when you are septic.
https://academic.oup.com/ecco-jcc/article/8/11/1464/356654Background: The results of previous studies on the effectiveness of antibiotics in ulcerative colitis (UC) seem more effective when used orally. In this retrospective, multicenter study, we aimed to report our experience of using a combination of 3–4 antibiotics in children with moderate-severe refractory UC and IBD-unclassified including metronidazole, amoxicillin, doxycycline, and if during hospital admission, also vancomycin (MADoV).
Methods: All children treated during 2013 with the antibiotic cocktail for 2–3 weeks in an attempt to alleviate inflammation in refractory colitis were included. Doxycycline was substituted with oral gentamycin or ciprofloxacin in children younger than 8 years or when an allergy was known to one of the drugs. Children were assessed using the PUCAI and CRP weekly for 3 weeks. Results: All 15 included children had moderate to severe disease with refractory disease course to multiple immunosuppressants (mean age 13.6 ± 5.1 years, median disease duration 2 (IQR 0.8–3.2) years, 11 females (73%), and 13 (87%) extensive disease; 14 (93%) were corticosteroid-dependent or resistant, and 12 (80%) refractory to anti-TNF therapy). The cocktail was definitely effective in 7 of the 15 included children (47%) who entered complete clinical remission (PUCAI < 10) without additional interventions. Questionable or partial short-term response was noted in another 3 (20%), totaling 67% of patients.
Conclusion: The use of oral wide-spectrum antibiotic cocktail in pediatric UC seems promising in half of patients, refractory to other salvage therapy. A pediatric randomized controlled trial to assess this intervention is underway.
I am one step ahead of you! You are right! Some are 4 months. And they don't use the same antibiotics that they put her on here. I actually haven't found a study using the same ones she is on. Have no fear! My obsessive IBD mommy search skills are in overdrive! For now I have to fight Silicon Valley traffic home. They offered to keep us here for another hour or so to miss the traffic but O wants to get outta here before they change their mindsPull map theory stuff
That has the triple antibiotic protocol
I thought it was longer ...
This is nuts. Why does the plan keep changing? Are they in touch with your GI? When M is hospitalized, the attending GI always consults her regular GI because her regular doc knows her best obviously.They decided not to put her on complete bowel rest. She has been eating the whole time. Don't ask me why. I think maybe because they want to know that when they release her she they know she will eat. The RD came in and told her the more she can eat now the sooner she will get off TPN.
She is filling out calorie count sheets.
I'm also confused about not going home on TPN - when M was very underweight, that was discussed with us. They either leave in a PICC line or put in a tunneled central catheter or line (I think that's what it was called). And you do TPN at home, with an IV pump, much like you'd use a formula pump for an NG tube with EEN.She CAN eat for comfort if she wants but she is getting everything from TPN. He said, the problem is that they can't send her home on TPN. You can bet I questioned that....of course they can...he said they don't.Don't and can't are two different things. I asked if they could send her home on EEN and he said no not really. So I said, "then the choices are here on TPN or home on food".