New to forum, need Dr. advice

[G's mom]

New to forum, need Dr. advice, Update post #18

My son Garrison developed anemia a year ago due to bleeding ulcers in his intestines. After many, many tests the Dr. is treating him for Crohn's. Garrison is not improving. He has never had an symptoms of Crohn's except the bleeding uclers, but now his anemia is worse, not better, and he is having cramping, etc.
The Dr. does not seem concerned. I only speak with the nurse and she often says things like, "Well, I can't get a straight answer from him", "i am having a hard time getting a response". etc. Is this typical? Should I be looking for a new doctor? If so, what is the best way to find a doctor. Our current one was recommended by everyone I spoke with, that includes many medical professionals. We are in Fort Worth, TX but I am willing to go anywhere.
Thanks so much,
Vicky

 

[Jennifer]

Just because one person or a few says a doctor is great doesn't mean they treat all their patients the same. Its possible that you could simply go to your General Practitioner and ask for a referral to another GI specialist but if you don't require referrals then you look up the GI doctors in the area (or even a few hours away, my first and best GI was 4 hours away) and call each one to see if they accept your insurance and ask when their soonest appointment is. That's how I look for doctors. Do they accept my insurance and when can I see them? If I feel its more of an emergency then I always see the one who has to soonest appointment but always try to get one sooner than that by calling the office over and over again asking if they have any openings or cancellations.

BTW, anemia is related to Crohn's and bleeding is very serious. I was slightly anemic and almost needed a transfusion but they were able to get it under control by prescribing Iron (ferrious sulfate) and I think Folic Acid too helped with that. The bleeding however needed medication to get it under control and I was put on Ascaol, 6MP and Prednisone.

Welcome to the forum!

 

[Dexky]

Welcome Vicky! Is this Dr. a GI? There often seems to be a reluctance to officially diagnose crohns. What meds is he on now and what has he already tried? We too have a lack of communication with our GI but we do believe he's doing a good job so we make the best of it! Good luck! Keep us informed!!

 

[G's mom]

Thanks for the encouragement. The Dr. is a ped. GI. I have contacted GP and she said this Dr was the best. The insurance company was no help either.

Garrison is currently on Pentasa 2000mg, Prednisone 30mg, 6MP 75 mg, Nexium 40 mg and Iron 3x. He has also been on entocort and flagyl.

After the first scope the Dr. thought the ulcers were caused by the C diff infection. He said the intestines looked very healthy and no scar tissue. (Garrison is an unusual case in the fact that he had NEC as an infant. His intestines were 80% affected and he had some of his bowel resected before a month old.) He has always had short gut syndrome but never the cramping and severe pain that accompanies Crohn's, until last week when he went back full force on the Prednisone. After speaking the nurse this evening she says Dr. is leaning towards Remicade.

Has anyone gotten a second opinion? If so, how did you handle the situation? What was the reaction of the original Dr.?

 

[DustyKat]

Hi Vicky and :welcome:

Sorry you had to find your way here, , the upside is it is fab place for support and info!

How old is Garrison and where is his Crohns located?

I haven't sought a second opinion myself but there are certainly others parents here that have, not to mention many other members that have, like Crabby. I personally wouldn't hesitate if I felt the need and I know it's hard but your faith and trust in the doctor looking after your child far out weighs what the original doctor thinks. If your gut feeling is telling you to go elsewhere then you can't go wrong. If you can't get any info is it possible for your GP to get the information for you?

I guess if I were in your situation I would approach it by saying to my GP, I assume they would be doing the referral......

"I am quite satisfied with Garrison's current GI, although I do find the lack of communication disconcerting and it leads me to worry more than perhaps I should. As you know Garrison is going through a difficult period at present and in view of the recommendations that have been made I would like a second opinion. I feel I need to be armed with as much information as possible and have more than the opinion of one doctor before making, what are in my mind, very serious medical decisions on behalf of my son."

The anaemia is interesting in view of the fact that he is already on Iron supplementation. Has he had B12, Folate and Iron Stores blood work done? What part of the bowel was resected?

Yikes!, sorry about all the questions. I hope you can get things sorted soon, good luck and welcome aboard!

Take care, :hug:
Dusty. xxx

Is there any narrowing at the site of the original anastomosis that could be causing pain and cramping?

 

[G's mom]

Thanks for the welcome Dusty.

I really like the request for the referral, it did not work. GP said the one I have is the best. grrr...... I did mention to the GI nurse when she called last night (after hours) that she seemed overworked and that if the Dr. had too many patients...... She cut me off mid sentence and said she would make sure Garrison became a priority and would call me back. She did, we have an appt. next Tues. to discuss Remicade.

Garrison is 12 years old. As an infant he had an 8 cm segment removed mid-ileum. The ulcers are in the upper part of the small intestines and there is no swelling or narrowing that the dr. could see. That is why I was shocked that he said Crohn's so quickly. After the first scope he said it looked like a simple infection and would clear right up. The bleeding continued after the C diff cleared up and the Dr. immediately said Crohn's. He said Garrison has some of the markers for Crohn's but was a tough case to call because of the NEC. I am really questioning the diagnosis. The more I read the more I think Garrison may have something different. But then again I could just be floatin' down the river of denial. :ycool:

Can you recommend the best websites to go for information or research for Crohn's. I am trying to educate myself, I just don't know which sites to trust. From the post I have read it seems like you all are experts!

Thanks again,
Vicky

 

[DustyKat]

Has Garrison had scans done?

Unless the ulcers are very high up in the GI tract they won't be able to view them via a scope. Okay so the GI is going through the step up approach so the biologics, Remicade is one, is the next step, so that part of things makes sense.

You are able to ask for a second opinion regardless of what your GP says aren't you? In view of what you and your son are facing I don't think it is unreasonable to seek a second opinion even it validates what your current GI is saying. Denial is normal and that's why the opinion of others is important as is the fact that you have serious doubts about his diagnosis.

Perhaps at your appointment you could question them more thoroughly as to why they think it Crohns......get them to convince you that is what it is.

I would start with the Crohns and Colitis Association, they would also have recommended links......

http://www.ccfa.org/

Good luck hun and keep us posted!

Much love, :sun:
Dusty. xxx

 

[sparky6]

Hi, my name is Stormy and I live near Dallas as well. My child (who is 2), had been to several DR's and until we found the DHAT group in Dallas at Medical City Children's Hospital. Dr. Argao is wonderful. His group has been rated number 1 in the region. I am not for sure if this is the group you are seeing, but many DRs passed Payten off as toddler's diarrhea and normal cramping, and didnt help. Since we started seeing DR. Argao(pediatric gastroenterologist), he said he will not stop till we find a solution. After the first visit he already had Payten in for a EGD with biopsy, and now after the 2nd visit he is putting her in for a colonoscopy. I hope this helps. If you need any help, let me know... I hope it works out for you and I really hope the MD your seeing is not my same DR, I would be very disappointed, cause he is so great!! Let me know PS.. We went to 3 specialist for opinions before we found her DR now, and I would do it all over again. I don't care what the DRs think of me or if they get mad. I will continue to fight for her until I get some answers... Don't worry what they think, trust your gut, and you will know what to do!!!!.... The DHAT clinic specializes in crohn's and ulcerative colitis
as well as many other Bowel Diseases.. Stormy :getwell:

 

[PnaG]

Hi, my name is Phyllis and i have a 20 yr old son who as Crohn's and after this last incident with his GI, I am now searching for a new one. At this point, i dont think i would trust a family pet with the GI he has.

I started with google, the top 10 Crohns doc in our area. I called offices and asked not only when their 1st avail new patient appoint would be, but also, how many crohns patients the doctor sees, i have found that NOT ALL gastro's specialize in the same disorders. I was told by my sons nurse in the hospital this past week to search for a hospital with a large fellowship, a teaching hospital is best she said because there is so much research going on. apparently looking into that, I did find 2 hospitals that have IBD centers, with professors and researchers who assist with the GI's. I cant say its going to make a difference because we dont have an appointment until May. but to me, im atleast heading in the right direction ( fingers crossed that I do ).

 

[G's mom]

Stormy, thanks for the Dr. name, no that is not who we use. We are currently with Cook's Children in Fort Worth. I will be calling Monday for a second opinion.

Dusty, I have Garrison latest colonoscopy pictures, his ulcers are in the terminal ileum, and 3rd portion of the duodenum. The ileocolonic anastomotice site was in the colon. I did not receive any pictures from the video capsule and the report was that he still had bleeding ulcers. When I go in Tues. I am going to request a copy of his chart and get to work researching. I am going to request a second opinion before we start any new treatment. Do you think that is unreasonable?

Phyllis, I hope you kind another doctor. I am glad to know I am not alone in my search.

Thanks again,
Vicky

 

[DustyKat]

No, I don't think it is unreasonable at all. Arm yourself with all the reports you can and as you say research, research, research. Although I didn't need to seek a second opinion I received many opinions when Matt was in hospital in January simply because of the time of the year and the leave rotations that were in place. He saw 4 colorectal surgeons and 3 GI's, two of which specialised in Crohns. They were all of the same opinion regarding his treatment at the time and the eventual outcome. There really is nothing better than having treatment decisions validated. If need be I wouldn't hesitate to seek more than just a second opinion, although sparky looks to have pointed you in the right direction. I started to respond yesterday and the internet died on me again, having awful trouble with it at the moment so sorry for the delay, this is the gist of what I wrote yesterday......

I agree with Phyllis. It is difficult for me to speak about about specifics due to our differing health systems but finding GI's that specialise in IBD and surgeons that at least work in a team with GI's that do is the best possible outcome.

My daughter had emergency surgery in our small local hospital and we were fortunate that she had a very capable general surgeon. The GI she was then referred to, although not an IBD specialist, does have a large number of Crohns patients. We are located in a rural area.

My son on the other hand had time on his side and his GI, the same as Sarah's, referred him to specialists in the city, they are in a large teaching hospital and he was seen by colorectal surgeons that work in a team with GI's that specialise in Crohns disease. Most of the doctors there are Professors due to their ongoing research through the hospital and university.

Colorectal surgeons are fanatastic at what they do and I can't fault the Prof that did Matt's surgery. As far as long term care of his Crohns is concerned then a GI is what you need and if you can find one that is a Crohns specialist then all the better. The only reason I say that is if surgery is ever on the cards you will frequently receive conflicting advice from the surgeon and the GI.

Hope that made sense! I don't trust my internet at present so I am rushing! YIKES!

Dusty. :sun:

 

[G's mom]

Dusty,
You should write a book on how to be the perfect parent advocate. What great advice. I used to have it all together, now I am a scattered mess. I have started researching and am planning on going in with a barrage of questions. Hopefully we can get some answers. I am still planning on calling Stormy's Dr. and getting a second opinion. I will let you know what we learn.
I hope everyone had a great Easter. We had to hid our Easter Eggs inside because we finally got some rain!

Take care,
Vicky

 

[troydanielbecker]

Sometimes I want to say something, but everybody else says it so nicely.

Vicky, keep us posted.

 

[G's mom]

We met with the Dr. Monday afternoon. It was a good appt. He talked with us for over an hour. We went through Garrison's results and meds for the past year. We discussed why he was confident it was Crohn's and not something due to the past surgeries or infections. He then took my notepad (which I had been writing in the whole time) and wrote down the Crohn's triangle, filled in all the levels and medication that are used. He thinks Remicade is our best bet. We discussed the risk of cancer and other side effects.
After that discussion the nurse came in for another 30 mins or so and talked with us some more. We asked about a second opinion, and she by all means get one, they had no problem with that. But she did assure us theat 'many eyes' had seen Garrison's chart since he was an unusual case. She said he was even discussed at the pathologist's conference. Why didn't the dr. tell us that a long time ago! That would have made me feel so much better.
We have decided to keep the appt. for Monday with Stormy's dr. (thanks) but have taken Garrison off 6-MP and started all the test needed to move forward with Remicade.

Troy, Thanks. I agree with you, I have read so many posts but don't respond for the same reason.

Take care,
Vicky

 

[DustyKat]

Oh Vicky, this is so great to read. There really is nothing better than having your child's doctor being prepared to sit, listen, explain and reassure, validation is a wonderful thing! Decisions are never easy but when things are explained and answered at least the water becomes a little less muddy. This just didn't happen Vicky, you have obviously been an outstanding advocate for son, kudos to you hun.

Keep us posted on how things go mate and good luck with your appointment on Monday.

Yikes Troy and Vicky, I hope my verbal diarrhoea doesn't put you off! :lol:

Much love, :Karl:
Dusty. xxx

 

[AZMOM]

Dusty - We all love you and your verbal explosions.

Vicky - I'm glad you feel confident in the direction. I always say we can face anything with a definitive diagnosis and a plan! Sounds like you are just about there!

Hugs,

 

[G's mom]

Thanks Julie, that is exactly what I need, a plan. The nurse said they have a pilot program for parents whose kids have a lot of lab work. I told her to sign me up. I need the expandable folder with all the pockets, etc. Yea, that will solve all my problems, if only I had a folder..... LOL!

Take care,
Vicky

 

[G's mom]

We received a second opinion from Stormy's Dr. on Monday. LOVE HIM! He was so personable and kind. Garrison did not know how to respond when Dr. Argao started goofing around with him. He did confirm our original Dr. diagnosis and treatment plan. We discussed switching but he said we were in good hands and should stay where we are, closest hospital, infusion center, etc. So it looks like we will begin Remicade once Garrison gets all his labs finished.

Take care,
Vicky

 

[DustyKat]

Oh Vicky, excellent news! YAY!

I love validation and I don't reckon you could have received any better! It just makes things that much easier to face when you are in a sea of doubt and misgivings.

I so hope the Remicade does the trick for Garrison...

:goodluck::goodluck::goodluck:

Thinking of you both and keep us posted...:hug::hug::hug:
Dusty. xxxxxxxx

 

[Saphira]

Do you have a date for your Remi infusion yet?
Trina

 

[G's mom]

Sorry for the delay. When it gets toward the end of school, it seems I have at least 3 events a day.
But, Garrison is scheduled for remicade on the 17th, because.............

He has an abscessed tooth! It seems he is missing 2 permanent teeth. He will have 1 pulled tomorrow and then will get a spacer in 3 weeks. I hate to ask what else will go wrong because it probably will.
On a positive note, he is doing so much better since he has stopped the 6mp. No more stomach cramps or pains and he is eating again. The dr suggested he drink an ensure a day to help make sure he is getting enough nutrients. Any other suggestions besides ensure and pedisure?

 

[DustyKat]

Oh no! I hope all goes well at the dentist and nothing else goes wrong, fingers and toes crossed!

It is fab to hear that your little guy is feeling so much better, YAY! and isn't great to see our kids eating...

Lots a love, :hug:
Dusty. xxx