Best way to find a doctor? Scottsdale, Arizona and Help?!?

I am in the U.S. in Arizona in the Phoenix/Scottsdale area. My son (age 10) was just diagnosed and my son's doctor is very kind and caring and seems good. But, he is just a pediatric GI specialist vs. UC pediatric specialist. I have noticed many people posting that you should get a UC specialist so how do I find one? I have looked at my insurance website and they don't have listings, my pediatrician doesn't know one, and I don't know anyone in real life that has UC, this blog is the only people I know.   (Thank you for that!)   My son is having some problems on the prednisone and is sad and has gained a ton of weight in just the 2 weeks he has been on his meds. Does anyone know something that will do the same thing as prednisone but maybe doesn't have the side effects?   So, I was thinking a second opinion might be good?   Just to summarize he is on 40 mg prednisone but this week dr. said we can go down to 35 mg. because of side effects, he is on 9 pills daily of Asacol and 4 pills of VSL3 and an anti-acid prescript ion for the stomach ulcers. The doctor said he has a very severe case and there was not one single part of his colon that was not red and swollen. BUT that was 2 weeks ago. Now he says his tummy does not hurt when he goes and he is actually really constipated but not bleeding constantly anymore.   If fact he might be done bleeding.   Is there something that causes the constipation?   Sorry I know my post seems to ping pong but I guess I am feeling like that.   I don’t know what to do for him and he has NO CLUE this is a life-long sucky thing.   I feel like I am feeding him these pills that are causing him other problems.

I tried searching Scottsdale inflammatory bowel disease specialist and found Dr. Gary Silber and Dr. Brad Pasternak, whose clinical interests are listed as pediatric IBD. It seems like Phoenix Children's Hospital would be a good place to look, here's their GI department http://www.phoenixchildrens.com/medical-specialties/gastroenterology/, looks like they have an IBD Support Group as well.

"Does anyone know something that will do the same thing as prednisone but maybe doesn't have the side effects? "


boy, that's the $39.00 question of the day !

answer: not really - it's cheap and it's really good at it's job = making uc sufferers feel better really fast -

 

Post Edited (soystud) : 1/6/2013 7:29:43 AM (GMT-7)

read, listen, learn, educate yourself - then find a doc who will listen -

Thank you everyone! When he was first bleeding the doctor that he has now (who is very caring) got him in when no other doctor would and then scoped him 3 days later no problem. They have been really helpful and kind and responsive. He is a GI doctor but I just didn't know if there is something special about a UC GI pediatric doctor.

Thank you Pluot I will call them on Monday.

Andrina it looks soft but there was not much at all yesterday so I will watch today, since we cut down the prednisone I just keep watching for changes to see if there is blood or ?? Not sure what else to watch for

Conquer UC, I asked the dr. at the last time and he said all suppositories are just steroids so it would be adding steroids vs. trying to taking them away. Is that true??

soystud, just thought maybe :) his face is so round and how does it work at school? On Wednesday we were up in the snow and he was just lying in the snow doing nothing so we brought him in and he just laid down face down on the floor... he has even been napping - he is 10 years old and normally is bouncing off the walls, our doctor seems to listen I just feel like he might now have other patients that have UC or not maybe because the receptionist classifies my calls as emergency calls when I am thinking they would be routine if you have lots of UC kids but he listens and cares I just don't know if I need an expert or even if I should be taking him to other types of doctors to check other things?

CGK - Thank you I will try them on Monday too. Do you know any people/kids that have UC in the area? Our insurance might cover Mayo, I will have to check. Our old insurance didn't but maybe our new insurance does? Thanks for that thought I had not even considered Mayo because it used to not be covered. I know I shouldn't base his care on money but his scope and first round of meds was going to be 2k but then my work let me add him retroactively (vs. my husband's insurance) so it was much less. I am unsure how to balance

Post Edited (momofchildw/uc) : 1/6/2013 10:51:25 AM (GMT-7)

Hi Mom-

after my daughters horrible experience on Prednisone I vowed I would never allow that again- but when they are first diagnosed you are really caught between a rock and a hard place. You will do whatever it takes to get them well again.
When I look back and see all the pictures of my daughter during this terrible time I am in shock and horror!
I never even saw her the way I see in these pics- I must have been in extreme denial.

It is good you are starting to wean but I can't stress enough to go sloooowwwww...

We are so desperate to get them off but we had to go all the way back up at the end because she started to flare again at the lower doses ...it was terrible!

I think since you are already seeing a Pedi GI you should stick with them...if you are happy with their care
and trust them you are in good hands.

It is so natural to want a second opinion and hear other options but the truth is their are not that many available treatment options. The most important thing is get them in remission so they can go to school and get to be like all other kids.

I have been dealing with this for 3 years now and not even 1 day goes by that I don't wish it was different or wish we could get off the meds or try something else but I am scared to death to try anything for fear of rocking the delicate boat we are on already...I am still dealing with tummy aches, long sits in the bathroom and a very delicate system :(

It is so tough dealing with a child going through this...it breaks my heart

Actually Phoenix Children's is a great suggestion. My youngest boy had surgery there for an undescended testicle and they were amazing. They really know their stuff when it comes to pediatric health issues, and no insurance fight either. We were out of pocket very little.

My wife is an NP and used to work for Mayo. She tells me that her friends tell her they are running at about 1/2 capacity these days. Part of the problem is they accept so few insurance plans and they no longer accept medicare. I think it's generally agreed that Mayo Scottsdale is not like Mayo Rochester quality wise. Mayo here in Scottsdale doesn't really do ped's at all. Phoenix Children's handles most pediatric issues. They have a wonderful facility around the 51 and Thomas rd.

BTW, if you are looking for a pediatrician for well care and other more minor stuff, we use Dr. Arturo Gonzales who I would highly recommend. Everyone he has referred us to has been great, like the surgeon who did the surgery my son needed.

All the best to you and your son.

Post Edited (C_G_K) : 1/6/2013 2:16:02 PM (GMT-7)