To have a 2nd opinion or not to have one...

[TGM4AU]

We have been going through our journey since July of 2011. It started with the pediatrician telling us it was a stomach virus/flu for 4 months. Finally with her symptoms getting worse and my brothers dx of UC, the pediatrician finally relented and gave us a GI referral. It would take weeks to get into the GI, and in waiting she had the worst night of our lives. She was vomiting and had diarrhea at the same time. Oh, as a parent that is not a night I wish to ever encounter again - I am sure in the future this is a great possibility.

I found myself pleading with the GI office to see us the day after this night. They took pity on me and saw us. Luckily the GI doctor is a family friend. He took immediate interest in our case and has worked very hard to test and treat conservatively. Through our scopes, x-rays, and blood tests they feel we are getting closer to the Crohn's dx. We are now facing Prednisone with the possibility of new medications. I know it is the same question all of us are faced with on this forum. Do you watch your child suffer or give medication that will cause bad side effects.

I trust our GI doctor, but I feel that I need someone else to tell us the same things maybe. ??? I have done research and found a IBD Program at Children's Vanderbilt. Does anyone know or is familiar with this program. Is it a good program? :confused2:

 

[my little penguin]

All good questions we had a second opinion for DS as well.
Remember not everyone has all or even some of the side effects listed .
They are just possible side effects.
No meds is more than your child suffering- Ibd damages the gut period.
Once the damage reaches a certain point the only thing the docs can do is remove it.
You can live without a colon- you can not live without a small bowel.

 

[kimmidwife]

Hi and welcome to the forum! Many people here have gone through this decision of whether to have a second opinion or not. We did go for a second opinion. Flew all the way to New York for it. We were glad we did. I don't know about the IBD at Vanderbilt but I have heard it is a good children's hospital in general. Good luck in whatever way you decide to go and keep us posted!

 

[Sascot]

Hi and welcome to the forum. Sorry to hear about your daughter. We've never had to go for a second opinion so no help there. Is there some particular reason you are not happy with the first doctor? As far as I can gather from the UK, all the GI's seem to be pretty similar in treatments except some push for EN and some don't.
EN is definately something worth looking into, there are plenty of threads on here to give info.

 

[crohnsinct]

Hi and welcome. We didn't go for a second opinion but only because our daughter was inpatient and time was of the essence. Was the first GI a pediatric GI? That can make a difference so if not I would definitely go for a second opinion with a ped GI. Even if he was, a second opinion never hurts.

Good luck with your decisions.

 

[Dexky]

Welcome! My son's GI is at Vanderbilt. We are very happy with him. If you are in Northern Alabama, it would be an excellent choice for a 2nd opinion. Is the GI friend a pediatric specialist? How old is your girl? I hope you get solid answers and quick results whatever she may need!!

War Eagle!!!

 

[Johnnysmom]

When my son was first diagnosed we wanted a second opinion as well, for all of the same reasons. We had a family Dr. friend tell us that a crohn's diagnosis is usually straight forward and the treatment protocols are pretty basic and routine. He said this is a life long disease and at some point you may reach a fork in the road and don't know what decision to make or the normal course of treatment options isn't working, and then move to a second opinion. My thoughts were that we would wait because for our situation it wasn't necessary at the time and we knew it was likely to be necessary at some point in his lifetime.

Then my husband was transferred to Cincinnati and my son's care was transferred as well. We ended up getting a second opinion from one of the best Children's Hospitals in the US simply because we moved. It was great to have the new information, they tweaked a few things but overall I was very satisfied with the care my son was getting before.

If you are having a hard time getting a clear diagnosis, or treatment doesn't seem to be effective, then I would get a second opinion. Otherwise I would save the money, time, energy and referral for down the road when you might be at a crossroads. But if it is just something you need to do for your own piece of mind or your gut is telling you something is off, then do it. You will get some good information and it is comforting to hear everything confirmed from another doctor.

Just my two cents, I am sure you will make the right decision. Hang in there, these are a rough couple of months but things get so much better (((((Hugs))))))

 

[Momto2girls]

I too have been back and forth on a 2nd opinion. I haven't yet bc our case seems to be early/mild as the inflammation we saw in her scope was not specific to IBD... No damage yet. And we are taking sulfasalazine...a mild drug...so as soon as it doesn't work or we can't get what we need from the docs here...we are going. I am gathering files as it is now. GL! So sorry about your daughter!

 

[Tink572]

HI! Sorry to hear you daughter is having a rough time.

We're pratically neighbors! I'm just south of Birmingham. My son sees a GI doctor at Children's Hospital. We've been pleased with him so far. The new Children's Hospital is very nice (but the doctors' offices are in the old building).

I've heard good things about Vanderbilt, but don't have any experience personally with them.

 

[Clash]

My son didn't get a second opinion either but he was dx by an adult GI and we then chose a ped GI with CHOA in Atl. I have heard good things about Vanderbilt though.

Oh, Dexy...War Eagle!

 

[NMMom]

It's so hard knowing whether a second opinion is warranted or not. I know that personally I knew the doctor here at home was right but I was in a bit of denial and felt so helpless that by my taking her to Emory I felt like I was doing something. If you do decide to go for another opinion there are lots of leads you can follow from the parents here. We were happy with the 2nd opinion we received at Emory and it's good knowing there is someone else, an expert, at least familiar with her case now so if we needed another opinion on treatment and a care plan we have someone to reach out to.

 

[jmckinley]

Welcome to the forum!

Was your GI one at Childrens in Birmingham? They have a great GI clinic. That is where we go. It never hurts to get a second opinion. We have considered ourselves when things were flared up. Our GP knows of the program at Vanderbilt and that is where he was going to send us. We ended up taking meds and getting things under control after some heart-searching.

I know choosing to do the meds is not easy, but getting the inflammation under control is important. Inflammation can lead to scarring which increases the likelihood of surgery in the future. That's what you're trying to avoid. The best way to put it is that the risk of letting the inflammation hang around is greater than the risk of the meds down the road. It's choosing the lesser of two evils. I am sorry you are in this boat.

Are you taking any probiotics, vitamins, etc? That helps.

Feel free to message me if you have any questions.

 

[DustyKat]

If a second opinion gives you reassurance and peace of mind then grab it with both hands. :hug:

Untreated Crohn's or under treated Crohn's has the potential to be as serious as the most serious of side effects that these drugs can dish out. It can be silent and insidious and lull you into a false of security and all the while doing irreparable damage. I am in no way saying this to scare you but just to draw your attention to remaining vigilant no matter what the path it is that you choose.

Good luck and let us know how you get on.

Dusty. xxx