Improve care now

Crohn's Disease Forum

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Seriously MLP?! You are like a dealer...you trying to get me hooked on another obsession? :biggrin:
 
At first I thought C's GI group was participating because the link you gave lists CHOA as one of the participants. C's GI is the medical director of gastroenterology but it is at Scottish Rite and it is CHOA-emory children's center that is a participant of improve care now. They have a fabulous informative website though, very impressive!!
 
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I know one of the Dr's at Cincinnati Children's that started the improve care now program. He says it is great. The issue is getting your GI to become a part of the program. I gave the info to our GI, but I don't think they have joined it. :-(
 
I heard about this a few months ago. I watched a clip on youtube

We had planned to move to NV as soon as our house sold. Well in the meantime we were told about Kota having crohns. So I started researching Dr who specialized in Crohns in NV. Just to know a littlebit. Improvecarenow came up. So I was excited that there was someone there that would know about Crohns. I knew no one at the hospital Ko is at was a part of the group.

But what I didnt realize until right now when I went and watched the youtube piece again is Kota new Gi is on the youtube video. He is Dr Patel.. So Kota is going to be a part of their program.. I started crying when I just watched it. Just knowing that okay maybe they will find a way to make him feel better. My emotions have already been up and down all day. Missing my daddy today.
 
Our GI clinic participates. We signed the paperwork to have son's info as part of the database in April. Think it is a great idea. They get to piggy back on what is being learned at other centers. Looking forward to when they roll out the parent participation.
 
:( another list ours isn't on...but we still love him...just sad we never seem to get invited to the dance.
 
Going to "ask" if ours is willing to join
doesn't hurt to ask
if enough people did think of all the good data----improve standard of care our kids could get....

Should be a requirement for any major IBD center.:rosette2:
 
"ask" LOL! Yeah I will be "asking" also but have to time it right. Just "asked" for EN and may be "asking" about LDN soon...timing is everything with this guy.
 
LDN- there is a pediatric study going on at Penn state right now- our GI checked it out for us- so if that helps you-...:wink:

Need to do something- Ds just went to bed- :poo:
I am going to pull the miralax since MTX can cause Diarrhea ( always a good thing for crohn's patients right:voodoo:)DS has chronic constipation so maybe for us.
Hopefully things will be just right between what MTX does without the miralax.
 
I am looking at the site and cannot find a list of doctors that participate does anyone know if there is one?
 
https://improvecarenow.org/about/who-we-are

list of facilities
The medical facilities currently participating in the ImproveCareNow Network include:

Advocate Hope Children's Hospital Chicago, IL
Advocate Lutheran General Children's Hospital Chicago, IL
Arkansas Children's Hospital Little Rock, AR
Arnold Palmer Hospital for Children Orlando, FL
Barbara Bush Children's Hospital at Maine Medical Center Portland, ME
Baystate Medical Center | Baystate Health Springfield, MA
Children's Healthcare of Atlanta | Emory Children's Center Atlanta, GA
Children's Hospital Boston Boston, MA
Children's Hospital Colorado Denver, CO
Children's Hospital of the King's Daughters Norfolk, VA
Children's Hospital of Montefiore Bronx, NY
Children's Hospital of Philadelphia Philadelphia, PA
Children's Hospital & Research Center Oakland Oakland, CA
Children's Mercy Hospital Kansas City, MO
Cincinnati Children's Hospital Medical Center Cincinnati, OH
Dell Children's Medical Center of Central Texas Austin, TX
Great Ormond Street Hospital for Children London, England
Helen DeVos Children's Hospital Grand Rapids, MI
Inova Pediatric Digestive Disease Center Falls Church, VA
Levine Children's Hospital Charlotte, NC
MassGeneral Hospital for Children Boston, MA
Mayo Clinic Rochester, MN
Nationwide Children's Hospital Columbus, OH
Nemours Children's Clinic | Alfred I. duPont Hospital for Children Wilmington, DE
New Hampshire's Hospital for Children Manchester, NH
Northwest Pediatric Gastroenterology, LLC | Randall Children's Hospital Portland, OR
Oklahoma University Medical Center Oklahoma City, OK
Pediatric Gastroenterology and Nutrition Associates Las Vegas, NV
Riley Hospital for Children Indianapolis, IN
St. Louis Children's Hospital St. Louis, MO
Texas Children's Hospital Houston, TX
University of Michigan Medical Center Ann Arbor, MI
University of Minnesota Minneapolis, MN
University of North Carolina at Chapel Hill Chapel Hill, NC
UT Southwestern Medical Center at Dallas | Children's Medical Center Dallas Dallas, TX
Vermont Children's Hospital at Fletcher Allen Health Care Burlington, VT/QUOTE]

hope that helps
Click to expand...
 
I see our GI is in that. Not to sound like a total dummy:tinfoil: but what makes that so nice?:eek:
Farmwife:heart:
 
Score Farmwife! You might get that colonoscopy/endoscopy afterall...

No CT facilities:voodoo: I knew I shouldn't have moved out of the city! But if I am being fair to poor hubby who dragged me kicking and screaming there aren't many in NYC either...just Da Bronx and I can commute from here just as easily as NY, NY but don't tell him that!
 
FarmWife-
Its nice since all of the clinics talk and share info on what works and what doesn't. SInce LO ones are so rare most ped GI do not see a whole lot with IBD. By sharing on a daily/weekly basis the standard of care is improved and the chance at "normal" increases for our kids. I think we should all push for our GI/hospitals to join.
If they did the odds of figuring out how to better treat our LO would go way up.
 
I wanted to reply to some of the questions posted about Improve Care Now. It is really an amazing collaboration. I am a parent of a child with Crohn's Disease. Like many others, my family and I were searching for ways to get the best care. If you haven't visited their website, it is worth taking the time to do so. Also, the youtube video someone mentions is worth watching. It explains their mission well and has several people interviewed. The exciting part is seeing how they really have changed the standard of care for pediatric patients suffering from Crohn's Disease and Ulcerative Colitis. The remission rates for Crohn's Disease have gone from 49% to 77% in 5 years. I am now a parent volunteer with the organization. It has been wonderful working with the people involved because they really do care about collaborating with the parents and families so that they can continue to improve the care for children. Parents can get involved locally or nationally and have a voice for children so that we can share how the disease impacts our lives, but also help with the standard of care by sharing our day to day experiences. To me, I think its so wonderful to see providers working together and working with the families as a team to improve the care of their patients. Afterall, as parents we are not only searching for a cure for our children's disease but we are searching for the best quality of life for them and the best care we can find. I hope this helps answer some questions.
 
We are also enrolled in this program and I would encourage everyone to try to participate. It is great to know that these GI groups are collaborating in an effort to improve the overall treatment and care of pediatric patients with Crohns. Hopefully this program allows them to continue to gain lots of insight of success to share with families dealing with Crohns.
 
Hello, everyone. If you can possibly get your child to an ImproveCareNow site, I hope you will. While participation is at the site level (i.e. all docs at the site participate), some docs participate more than others. You might want to ask about that if you contact them. My Crohn's disease was very severe in the late 80s and throughout the 90s. I know what "status quo" care looks like --- bad. My son has been treated at an ICN center for 7 years --- what a difference. If you come to Nationwide Children's Hospital in Columbus, Ohio, you can ask to talk to a parent volunteer. We'd love to meet you!
 
The "Circle" newsletter from ImproveCareNow just came out today. I can't post a URL because I'm a new member, but here are instructions:
1) Go to the improvecarenow web site (it's a .org)
2) Click on the "News" link
3) At the right side of the page you'll see links to all issues.
Today's issue is about school accommodations. You may find it worthwhile to browse previous issues as well.
 

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