Pediatric GI in Alaska?

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aksnowbunny
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/28/2007 12:28 PM (GMT -7)   
I am a mother of a 13yo boy diagnosed with Pan Ulcerative Colitis in October 2006, so most of this is somewhat new to us.  Our son has yet to get his disease into remission and has been on everything from Prednisone to Mercaptopurine, and now onto Remicade.
 
We have been notified that Alaska's only pediatric GI (Dr. Pratt) will be leaving the state in 6 weeks.  There currently is no replacement.  We've been told that they have searched for years to get us someone else.  We are being told that we will have to just see a general pediatrician.  As our son has yet to get his disease under control I am in a bit of a panic here.  I am not comfortable with a pediatrian who doesn't know the in's and out's of this disease, let alone the new research, managing my son.
 
Alaska is our life long home and we have no desires to leave the state.  Is there anyone else out there that lives in Alaska experiencing the same thing?  Maybe you have someone else you see here that has proven competent.
 
We live in Palmer, but wouldn't mind driving to other cities if we could get qualified care.  But I certainly can't afford to fly him out of state every month for appointments.
 
Any help would be ever so appreciated!!!!!!

Christine, Mother 34, of 13yo boy
Diagnosed October 2006 Ulcerative Colitis
Meds: Colazal 750mg x 9, 6-MP 50mg, Vit D 400iu, Vit C 1000mg, Iron 50mg, Remicade 3rd infusion


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 12/28/2007 12:40 PM (GMT -7)   
First off welcome! i think the first place to try is www.ccfa.org. It is the website for the Chrons/colitis Foundation of America. I actually found my GI there. Do you like the current pediatric GI you are seeing? If you can't find anyone else would he be willing to work w/ you via phone? Could he see a regular GI? I wonder if you explained the situation they would be willing to see him even though he is only 13.

I am sorry he is having such a tough time. How he seen any improvement w/ the remicade?
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100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 12/28/2007 12:48 PM (GMT -7)   
I looked on the CCFA website for physicians. There is no pediatric GI in AK listed but there is a Dr.
Richard Farleigh in Anchorage. Is that close to you? Maybe your son's doctor can recommend a regular (adult) GI to go to. I think I would look for a GI doctor (with a good bedside manner and up-to-date information) rather than a pediatrician.
 
By the way, my daughter's pediatric GI is not on the CCFA list but I think he is terrific. However we are in New York and the monthly trip from Alaska to New York would be just a bit much! tongue
 
Sorry your son is still not in remission. I hope you find the right mix of whatever he needs to get him there.
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 35 mg prednisone, 2 tabs 6-mp
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


aksnowbunny
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/28/2007 1:02 PM (GMT -7)   
Thanks for the welcome.  I have looked for a long time for a sight with valuable information and I think I've finally found it.  yeah
 
CCFA refers you to Dr. Pratt.  When my son was first diagnosed last year, I called every GI in the Anchorage/Mat-Su area because Dr. Pratt couldn't see him for 3 months.  No other GI's would see him due to his age.  One GI would see kids at age 16.  All others were a minimum of 18.  Maybe we're unique up here??  I am being told this is due to 2 reasons; 1 being they must be licensed as a pediatrician to treat kids, 2 being the extra insurance costs to treat kids.
 
I have posted notices in Dr. Pratt's office trying to "recruit" other parents to join forces, and to share experiences.  I have also drafted a letter to send to all the other GI's in the state to try to find someone else.  Dr. Pratt says to not get my hopes up though.
 
I asked Dr. Pratt yesterday for a forwarding address for himself.  He said as part of his contract with Providence Hospital to return once every 6 weeks for the next 8 months, he would not be required to stay in contact with patients so he wouldn't release this info.  He said any communication would have to come from our pediatrician.
 
As far as liking Dr. Pratt, I think he's ok.  But what other choice have we had?  I have asked Dr. Pratt repeatedly about things I've read from other sights about the other aspects of UC like diet, emotions, etc. of which he discredits all of having much bearing.
 
We have seen slight improvement after the 2nd infusion, but doc says it should be working much quicker than this.  I guess we'll wait more since he had another yesterday.
 
Signing off now.  Will check posts this evening.  :-)
Christine, Mother 34, of 13yo boy
Diagnosed October 2006 Ulcerative Colitis
Meds: Colazal 750mg x 9, 6-MP 50mg, Vit D 400iu, Vit C 1000mg, Iron 50mg, Remicade 3rd infusion


aksnowbunny
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/29/2007 8:11 PM (GMT -7)   

Alaska, anyone, anyone?  I know it's cold here, but by gosh most of you have more snow than we do! :-)

Does anyone know how to do a "members" search here for those who have updated their location in their profile as Alaska?


Christine, Mother 34, of 13yo boy
Diagnosed October 2006 Severe Pan Ulcerative Colitis
Meds: Colazal 750mg x 9, 6-MP 50mg, Vit D 400iu, Vit C 1000mg, Iron 50mg, Remicade 3rd infusion, Laughter
Prior Meds: Asacol, Prednisone, various antibiotics, homeopathics, special diets


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 12/29/2007 8:26 PM (GMT -7)   
A mod from Anxiety - Panic is from AK.  freezinginAK
Perhaps he can help you out?  He may know more members from AK.
 
Good luck!  I know how difficult it is to find a good GI in a rural area - then add the pediatric part...
 
Hang in there!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

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