Moving and finding new doctors

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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Hi All,
Firstly I want to apologize for not having been around much the past few weeks. We have just moved and are currently in temporary housing that does not have internet. My phone gets limited internet and is hard to type with. Anyway I am most upset. I just went to transfer our insurance to the Florida Region and I found out there are no close by pediatric GI's that take our insurance! I do not know what we are going to do. :( I am trying to remain calm!
 
ERGH! There should be a rule with insurance that if there aren't any in network close by the insurance will cover an out of network doc as in network!!!!!!! How far do they think is reasonable to travel?
 
Kim,

I'm not sure how the insurance companies/regulations work in the U.S. but I certainly hope you are able to find a ped GI within a reasonable distance!

Have you found a ped GP? If yes, is it 'reasonable' to ask if they are able to help you find a GI in the area who is covered by your insurance? Would asking Skip's pharmacy be of any help (as, through their LDN prescriptions, they may be familiar with local GIs)?

Is the insurance company obligated to supply you with a list of names of insured ped GIs?
 
Hi All,
Well we are finally moved into the new house. Now we just have to unpack and organize. We finall met Caitlyn's new primary care doctor. She seems very nice and very thorough. Now we just have to figure out the GI situation. The closest one that takes our insurance is 28 miles away. That is her annex office where she is a few days a week. Her main office is 46 miles and the children's hospital is somewhere near there. I spoke with the insurance and they said there is a process we can go through to allow us to use an out of network doctor but it is a whole process :(
 
YAY! Home Sweet Home!

Good luck with the "process". My parents live in Florida and we are always amazed at the high speed limits down there...you could do 28 miles in no time :thumright:
 
As someone who commutes (drives) an hour to get to work every day, 28 miles doesn't seem too bad :) And, hopefully, you won't need too many visits!

I would try this GI first and see how you get on with him/her and save the 'process' should you need it if you don't 'like' this GI.

How is Caitlyn since she's been home from camp? Is she feeling well, no problems? :)
 
Tess: you commute an hour to read and respond to the forum?

Kimmidwife: Is she also starting a new school or do you home school? If new school she must have started already...is she enjoying it?
 
:) Actually hate to log in and try to respond from my blackberry!!! Screen too small, keys too small, just find it so FRUSTRATING! Shhh, I'm on the forum while I'm at work! Just stayed logged in and jump in and out all day long...:)


Oops... just reread your post... thought you meant I logged in while commuting! :ywow:
 
Just wanted to wish you luck and happy times in your new house! Hope you get a good GI soon :ysmile:
 
If you can see a Ped G.I. at a Children's Hospital I would say it is worth the commute. We just moved and my husband's company who handled our insurance switch and referral was very helpful. You might want to contact someone in HR from the company that provides the insurance and ask if they can help. They get through a lot of red tape and know the system so it saved me a lot of time. I came with the name of the Dr. I wanted and the hospital and they told me they would make it work, and they did.

Good luck!! i know how stressful the move and new schools can be.
 
Hi Kim and welcome to Florida ! The "sunshine" state where it rains nearly every day at 3 p.m. like clock work! LOL Oh and just when you think all is calm, well then lil things like hurricane Issac come to visit ! :lol:

What area are you in ? I think you told me in PM before, but I forget :shifty: If I remember correctly you're a couple of hours south of me? I was thinking of recommending Arnold Palmer Children's hospital in Orlando, but not sure if it's "in network" for your insurance, time for travel, etc? There's also Shands in Gainsville ~ and from what I hear there are some amazing pediatric GI docs there! Whomever you choose for Kaitlyn I wish you luck :)

I hope your new house quickly becomes a Home for you all ! :kiss:
 
Hi all,
I decided I think I will try the one who is 28 miles away. The biggest problem is there is no highway to get there you have to take a street with traffic lights the whole way. Unpacking is not fun and the house is a mess but once we are unpacked I think it will be great. Caitlyn has been feeling good physically since coming home from camp. She has started a new school but so far doesn't like it. She is having a hard time making friends. I told her it has just been a week to give it time. She is going to a charter school that goes from kindergarten through high school. They got 200 new students this year and a new principle so they are a bit disorganized. But we had heard very good things About the school and knew other families sending their kids there so we are going to give it a chance and see how it goes.
Crohns instinct, I wish I had the strength to home school I would so do it. I am a big believer in home school but have never had the opportunity be asue I used to work full time And now with my health issues there is no way I could do it.:(
 
Moving is so not fun! We are never going to be finished unpacking and now hurricane Isaac is on its way. It has not stopped raining in three days!
 
Ugh! I know what you mean about unpacking.

One move my husband told me I couldn't unpack a box until there was something I needed in it and any box not unpacked at the end of a year was going to the curb because I obviously didn't "need" whatever was in there...yeah we still have some of those boxes 9 years later...I am thinking of letting him ditch them.
 
Going to see the new doctor finally today! I hope she will be on board with the LDN. I also hope we will be able to get Caitlyn back under control. The entocort is not helping so she may need a course of prednisone:( Caitlyn hates prednisone so we tried the entocort first.
 
Sorry to hear that Caitlyn is not feeling better yet! :ymad: Stephen's never used entocort so I don't know how long before you see results; is it possible Caitlyn just needs a bit more time to see improvement???

Good luck at the GI today! Let us know how it goes!! :ghug:
 
I hope all goes well at the new drs appt today. It can be difficult to find a gi who is very familiar with Crohns and all the treatments like LDN.

Sorry to hear about the recent relapse. I remember reading about all you went through before the LDN worked. Hopefully a SHORT course of Prednisone will do the trick.
 
Hi all,
Finally had a chance to write. It has been a crazy day. After Caitlyn's appointment my son had minor surgery so I was running around like a chicken with out a head to get everyone to their appointments on time. Anyway, the new doctor was fabulous! :dance:We loved her. I was so impressed with her. She researched LDN because she had never heard of it. She is willing to let Caitlyn continue on it. She just wants to figure out what is going on now. We are going to get her an MRE on Thursday and switch her from entocort to prednisone. Caitlyn was really upset about the prednisone so she agreed to give the entocort two more days to see if it will start to work. She was so great with Caitlyn. She is the first doctor ever to tell Caitlyn that she needs to watch what she eats especially during a flare. She discussed which foods she should eat. She said anything that dissolves if you leave it in water overnight is ok to eat. She suggested soft foods like yogurt and soup, she said chicken is ok but avoid beef. I really was impressed I am so glad we found her. Oh something interesting she mentioned I told her how on the forum other people talk about how their kids CRPs get so high and Caitlyn's doesn't really move she said 15% of patients with crohns disease have no changes or minimal changes in their blood work during a flare up. She also said that is why she uses the fecal calprotein (did I spell that right?) . She said it actually is a better indicator of inflammation then blood work. Very Interesting.
 
:mario2::mario2::mario2:

for a good doc visit and a good "fit" doc wise.
interesting on the diet during a flare.

our 2nd opinion doc has basically left us with the same plan-
fecal caloprotectin tests at least every 6 months or sooner is suspecting a flare.

Fingers crossed the entercort works.
 
So glad it went well...she sounds fab. I hope Caitlyn liked her to even though she was trying to put her on prednisone and telling her what to eat. I hope she is feeling better soon and that helps her adjust to the new school better.

Healing thoughts for your son also.
 
So glad it went well! :banana: :banana: Such a huge relief when all goes well with a new doctor!

Hoping the entocort kicks in and Caitlyn can avoid pred! :ghug:

Interesting about the tests... And glad the GI recognizes that. Seems there are so many here whose GIs just say 'results are fine' :ymad:

Just curious..., as Stephen's blood tests have shown elevated CRP and ESR when there is inflammation, what would be the benefits in someone like Stephen having the calprotectin test done??

Hope your son is doing well too! :ghug:
 
Fecal caloprotectin is very specific to inflammation in the gut and is good at predicting a flare. Sed CRP are general whole body stuff and may not have anything to do with his intestine but a cold virus etc...
 
Thanks MLP - so, my understanding is that for someone like Stephen, whose MRE did show intestinal inflammation and whose CRP and ESR are elevated, there really isn't any reason to request Lactoferrin or Calprotectin tests? Other than one more 'confirmation' that there is inflammation, there's not really anything new to learn, right?
 
I would say you are probably correct Tess. Some more interesting information Caitlyn's calprotectin came back normal. Yet she continues to have pain. I guess it shows the LDN is working but the question is what is this pain from? She also has not gone to the bathroom in two days. I am wondering if she has a blockage from scar tissue maybe? She has not had vomiting but has had a lot of nausea.
 
That makes sense, Kim. If all her tests, including the calprotectin came back negative, then perhaps it's not inflammation that is causing the pain??? As her GI said that some patients don't reflect inflammation in test results, did she say if the same can happen with calprotectin? Could the lactoferrin (sp??) give a different result from the calprotectin?

Perhaps before Caitlyn goes on pred, can tests be run to check for a blockage?

(Thanks re my question :))
 
Glad the GI turned out to be nice! Hope the entocort kicks in soon. Might be worth requesting a plain old xray to check for a blockage or impaction? At least it's a painless test! That's good that the faecal calprotectin is negative.
 
Tess,
According to what the doctor told me the fecal calprotectin will come back positive it is a more accurate indicator then bloodwork. I am thinking she has a blockage. Sascot, Caitlyn is supposed to try to avoid X-ray and ct scans if possible because they gave her to many the first year she had crohns.also the MRE shows much more then just an x ray would.
 
At miami childrens hospital for the MRE. It took 1.5 hours to get here. It is a miserable drive. I hate driving so that doesn't help. Anyway we got here and the doctor forgot to put on the orders. After an hour they finally got the order. Then they did not want to flavor the barium so Caitlyn was upset and finally they spoke with the radiologist who spoke with her colleague who said no problem to flavor it. So she is now drinking it. They want her to drink four bottles. In the past it was always two and they want her to walk for thirty minutes in between each bottle. We are going to be here all night!
 
How did the MRI go Kim?

It is so wonderful to hear that you have found a fab GI! :)

Yes, unfortunately there will always be those IBD for which inflammatory blood markers remain negative even in the most severe of cases and Sarah was one of those. Hence my distrust of any test result unless it matches what I see in front me.

Faecal Calprotectin is a highly reliable marker for intestinal inflammation and as with CRP can also be used to monitor response to treatment.

@Tess. I personally believe that if you already have blood inflammatory markers supporting the evidence of imaging then I don't see the point of yet another test saying the same thing. The same as if a doctor uses faecal calprotectin as their way of monitoring disease activity what is the point of doing blood markers if the faecal is positive. Bearing in mind that the faecal is more specific and more accurate in predicting inflammation contained within the bowel.

Dusty. xxx
 
Hi all,
Sorry I have not had a chance to update. It has been crazy busy and I know the next few days will be very busy so I wanted to get on and do a fast update. Caitlyn finally finished the MRI at midnight. We got home at 1:30am. The doctor called us Friday night finally to tell us the MRI was normal. They did not see anything. She wants Caitlyn on prednisone for two weeks and then we will see her and decide what to do depending on how she is doing. I think she is a little better this afternoon after two days on the prednisone. She was very unhappy and fought us about the prednisone but finally gave in and took it. That is all for now. I have to ru n. I will not be by for the next two days but will check in with you all after that!
 
Thanks for the update Kim. :)

So fab to hear the MRI was normal! Sending loads of luck and well wishes that Pred weaves its magic!

Dusty. xxx
 
So glad to hear the MRI had good results!!! Hope she's doing alright with the pred!!! :ghug:
 
Glad to hear the test was fine - must have been an awfully long day. So frustrating when things aren't organised properly! Hope the pred does the trick.
 
Hey all,
I think caitlyn is doing a little better but she is still having pain after eating :( I am wondering why the prednisone is not working. All her tests are comming back normal. I can't figure out what is going on. The doctor is talking about putting her on methotrexate along with the LDN but that does not make sense to me. If her labs are normal and her fecal calprotectin is normal showing no inflammation doesn't that mean the crohns is under control / in remission and that something else is going on? I am thinking maybe something to do with scar tissue. anyway tomorrow is her 15th birthday, four years since crohns diagnosis four days prior to her 11th birthday. Since January and the start of LDN this has been the best time she has had since diagnosis until a few weeks ago. Now if only we can get her back there. I am thinking of pushing the doctor to do a colonoscopy. I am wondering what you all think? Also does anyone know would there be any benefit to a pill cam If the MRE did not show anything?
 
Well hate to put a kid through another colonoscopy if I don't have to but hate to add a drug that might not be needed more. I don't think thescope is a bad idea.

I was just going to say I love the avatar!
 
Our gi mentioned need for colonscopy a some point to make sure faecal calprotection match up for her.

Does this make sense.

Maybe you need to know the colonscopy and faecal calprotection match. She said the faecal cal looks very promising but its not there yet but will get there due the amount of research being done.
 
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In view of Caitlyn's persistent symptoms despite medication I would

be getting a scope done.

Here is a link that David posted comparing MRE to a pill cam...

http://www.ncbi.nlm.nih.gov/pubmed/20922391

And last but by no means least...

Happy 15th Birthday Caitlyn!!!...:bdayparty::bdayparty::bdayparty:

Dusty. xxx
 
Dusty
it looks like the two are pretty equal in accuracy from that study. I am going to push for the colonoscopy. In the meantime my eight year old Has been complaining of stomach aches for the last several Weeks Today he is home again. I am trying to remain calm and not freak out. I am thinking of asking his pediatrician to get some blood work and maybe a fecal calprotectin if she will do it.
 
If it's any consolation, my daughter was home from school today with bad pain in her bottom. :voodoo: Keep hoping it's something simple that can be treated and cured!!
A colonoscopy sounds the best way to go, at least it will give a really good picutre of what is happening inside. The thing I hate about this disease is that things are happening inside our kids that we just can't see!
 
Sorry Kim... I've been a bit behind here lately :redface:

First off, HAPPY BIRTHDAY!!! :banana: :banana: and... Great avatar! :D

As for Caitlyn's pains... I agree that more shud be done before adding meds. Can I assume that MREs don't show scar tissue at all?? Wouldn't scar tissue show thickening of the intestinal wall or narrowing in the space within the intestines?? I can understand not being able to distinguish if either of these 'physical indications' are caused by inflammation OR scarring but wouldn't an MRE at least show the thickening or narrowing? (Hope that made sense??). But, if the answer is no, then I would push for a scope bfr adding the meds. :ghug:
 
I would ask Caitlyn if the pain is more stomach or intestinal and how long after eating it starts. Prednisone can really hurt the stomach and Johnny was put on PPI's when he was on it. That helped dramatically. He did occasionally still have pain after eating but it lessened as time went by.

Great Avatar!!! :)
 
Johnnysmom,
The pain is in her usual spot. Right below the naval and to the right. She also continues to have nausea after eating. I know prednisone can hurt the stomach. She takes it in the morning with yogurt which helps. She has had increase heartburn which I know is from the prednisone. She is already on nexium. Tess, I don't know I would think they could see those things with the MRE but at this point I am baffled.
Also got a phone call today that the doctor has to go out of town on a family emergency so will not be in tomorrow. They were supposed to call me back to reschedule her appointment but have not. :( I am most upset as we were supposed to discuss what now.
 
Ugh, I have been sitting here researching other doctors in th eared. The only other one who is on our insurance got terrible reviews. His reviews said he is nasty and arrogant. I think we will have to stay with this doctor.the truth is I liked her but I can't understand how she does not have a covering doctor. It just does not make sense and if she missed a clinic this week don't you think they would have her make it up next week and not wait two weeks. Caitlyn wants to wean off the steroids. The doctor promised she would be on it as short a time as possible.
 
Ps. I am off to drink a glass of wine and try to relax I have to stop freaking out this has been a rough day! I am sending peaceful and relaxing thoughts to all!:ysmile:
 
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Aw kim...I'll have one too! I know you like this doc and I am glad you are sticking with her. I will never understand not having a covering doc. How long is said family emergency expected to last?
 
Hi Kim,
I don't know how I have missed this whole thread until now!!! We are in a similar boat...labs all come back normal but he still has pain. We are still waiting for the results from the last fecal calprotectin but if it is normal the GI has said no to a colonoscopy. I am clinging to the abdominal migraine theory... Is Caitlyn still on amityptalline?

I join you for a glass of wine!
 
Hi All
I just found out the doctor will not return until November 2 and her covering doctor does not take our insurance. We had to get an appointment with another GI group totally. So I guess we are switching.
Twiggy,
Caitlyn is on 40 mg of amitryptalline.
 
Oh, Kim that's terrible news. OMG, how frustrating for you!!! :ymad: I don't understand how a covering doctor wouldn't accept (or be accepted by) the same insurance - doesn't make sense!! :ymad:

Did you already find a new GI? I know you haven't met them yet but, other than the terrible timing, are you okay with moving Caitlyn to this new group (ie these arent the ones you mentioned with the bad reviews)?
 
Last edited:
WWHHHAAATTT? Typically what happens with a covering doc is they bill through the doc of record and they work out the transfer between them. I used to be a benefits administrator and it is totally wrong for them to expect you to pay out of network. Fight that one!!!!!!
 
Ugh! So frustrating that the covering Dr won't work this out!

As for the pill cam...we just did one in June. The pill cam covers the part of the small intestine that can't be seen by upper and lower GI scopes. The camera could die before it gets to the lower intestine depending on transit time. If the trouble is close to the ileum, the colonoscopy is a better way to go even though it's more invasive.

Best of luck with the GI changes. Hope Caitlyn is feeling better soon!
 
Crohnsintinct,
I don't get it but they refuse to even try anything with the insurance. Tess, we did not make an appointment with the one with bad reviews we picked another group at Miami Children's. it seems there was actually two groups there that are separate.
 
I'm glad you had a different group to choose from! I hope your appointment is soon so Caitlyn can get off the steroids! Is she beginning to feel better? :ghug:
 
Glad you managed to find another group to go to. That is really strange a covering doctor not taking the insurance. I would have thought that if you are covering another doctor then you would have to take all their patients regardless of their insurance! Hope the new one is nice too.
 
Studies do seem to indicate that MRE's can potentially differentiate between strictures caused by oedema versus those caused by fibrotic scarring.

Good luck with the new group, I hope it is everything you wish for and more!

Dusty. xxx
 
:ymad::ymad::ymad:it is as easy as one phone call to have the insurance processed seamlessly:ymad::ymad::ymad: But at this point if they aren't willing to make one simple phone call it is probably a good indication you shouldn't use that doc anyway.

Good luck with whoever you choose. I hope they can see her quickly!
 
crohnsinstinct
you are sooo right but no one wants to do their job! anyway we have an appt. for next Friday. hopefully it will go smoothly. Caitlyn is still having pain the steroids don't seem to be helping after two Weeks on them. Caitlyn is really upset so I am letting her start to wean off.
 
She is a little better. we are going to go see the new doctor tomorrow. ( caitlyn just saw me typing and couldn't resist correcting my grammar!) she is really liking the homeschool.
 
Alright today was not a great day:( besides the terrible drive to get to Miami Children's. ( you have to understand I hate driving and it is painful for me due to my own illness) we got there and waited 2.5 hours to see the doctor. When we finally saw him.he was nice but I was not super impressed with him. caitlyn did not like him at all. She wants to go back to the doctor that we first saw who won't be back until November. In the meantime he started her on flagyl and wants to see her back in two weeks. I don't know really how flagyl will help but am willing to give it a go. He said he knew nothing about LDN but was not negative about it and said he wi ll do some research. At this point I do not know what to do should we try to go back to the other doctor when she gets back? Will our insurance even let us?
 
I think it may be too early to tell.
With your other doc out till nov I think you need to at least see this one until then.
Hope the flagyl works.
 
Sorry to hear you and Caitlyn weren't super impressed with the new doctor. Hope flagyl works well. Andrew was on Flagyl for about 4 months with his abscess and had no side effects at all.
 
Oh Kim...:hug:...I am so sorry to hear about the drive, the wait and the so so appointment. :(

We are another long term Flagyl user with no side effects. Flagyl does have anti inflammatory properties too so that coupled with its antibiotic effect and the LDN may just be the right combination. I'm hoping so for you! Everything crossed!

Dusty. xxx
 
Sorry to hear that the dr experience did not go well. H started flagyl and cipro 9/5 when we went to the dr and found out he had a fistula and his crp was 2.3. He had his first remicade infusion 10/1 and the labs they took before the infusion crp was normal. So it may well have brought the inflammation down. He hated the taste said tasted like metal. He did vomit twice with it when he did not have enough food with it. Good luck hope it goes well.
 
Sorry it didn't go better, Kim. I don't know how the insurance system works so have no idea about your options to return to the other doctor. But, as the other doctor isn't back until Nov, you'll have to see this doctor for now anyway... he didn't shrug off the LDN and is willing to do some research... perhaps, you and Caitlyn will feel better about him after another visit???

Stephen had flagyl through IV for a week when diagnosed. He didn't have any side effects from it and it certainly seemed to help bring his symptoms under control quickly.

:ghug:
 
Hi all
Life has been crazy so I have not been getting on the computer as much as usual. Anyway Caitlyn is refusing to start the flatly until she finishes the prednisone.
 
Hi everyone,
Good news on Friday I decided to call the first doctor (the one caitlyn liked) and see when she will be back. The person I spoke with told me she is back. When I told them that they told me she would not be back for a long time she said there was a mix up and that was not true. Then they told me they had no appointments until midnovember. I told them this was not acceptable. He told me hold on and he got us in for Tuesday. In the meantime caitlyn is actually feeling better. She is finished weaning off the prednisone tomorrow and has not complained of stomach pain in four days! She has been having a lot of headaches though which I will mention to the doctor. Also we finally have an appointment with a Rheumy for the joint pain.
 
So glad to hear that you got an appointment and I am really glad to hear that there has been no stomach pain for a few days!!!! Yay for feeling better!
 
Thats great you managed to get an appointment so quick! Hope it goes well. Glad she has had no tummy pain :thumright:
 
Woohoo, so fab to read you got an appointment ASAP with the good GI! Plus a Rheumy too! :):):)

I hope things continue to stay settled for Caitlyn...:hug:

Good luck! I hope all goes well on Tuesday! :goodluck:

Dusty. xxx
 
Update on caitlyn,
Hi all we went to see the GI we liked today. I really like her. Caitlyn has been feeling better and the doctor is very happy with her progress. She is still however having pain when the doctor pushed on her stomach especially over her scar. We discussed it and decided she should have a colonoscopy. She is scheduled for the end of November. ( that is the next time she is up at the office near us) she said if caitlyn gets pain again we should call to see her sooner at the other office. She is really nice and I am so glad we were able to see her.
 
Happy it went well!!! Glad the colonoscopy is planned but hope nothing negative is found! :ghug:
 
That worked out so well. I'm glad the mix up got straightened out and Caitlyn was able to see the GI she liked. I hope the colonoscopy goes well and the results are good! Hope the Rhuemy appointment goes well also!!
 
Thanks for the update Kim. :)

So wonderful to hear that your GI is fab, it surely is priceless!

Sorry to hear that Caitlyn is having some issues though. :( I hope the scope goes well and the results are clear!

Good luck, :heart:
Dusty. xxx
 

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