Second opinion in the UK, now confused. What do you clever parents think?

[Jane and Nick]

We have just got back to Malaysia, after a very delayed trip that took 40hours courtesy of mechanical problems/tyre's bursting and many unscheduled delays. My children were absolutely wonderful and handled things beautifully.

Nick coped very well eating crappy airport food, taking medications at several different time zones and still managing very well.

While we were home in the UK I took advantage of asking for a second opinion, our insurance company put us in contact wit a doctor who requested Nicks reports and said would read them and give an opinion ! This was not what I was looking for so I declined that offer.

I did see our local GP who took a fast look at the reports plus the full colour scope pics and path report, he said he would never of been sent for scopes in the UK when only presenting with bloody D, and questioned if he should even be on medication?as he will be labeled so young. He did concur that the scopes showed inflammation and the reports questioned Crohn's . This of course fuelled all of my in denial mummy thoughts and I am thinking he may be does not need medication? however the other IBD Crohn's forum fairy is sitting on my other shoulder saying scopes don't lie, being proactive is a good thing. NIck is only taking .5mg of steroid on a taper from 30 mg and 500mg of Salofalk.
So question to you is, should I be proactive and medicate OR stop meds and see how it goes ?.
Thank you my resident experts.
X

 

[my little penguin]

See it just depends on the country
In the us bloody D usually triggers a scope.
Regardless if there is inflammation seen on the scope which per your report there was it needs to be treated.
I personally would not take a gp 's word over a Gi for Ibd concerns
That is the gi's expert area.
If you can get into another ped Gi then by all means do but
Otherwise I would check with your current Gi and see what they are recommending and why.

 

[DustyKat]

I agree with mlp Jane. :smile:

I don't know about the GP and his statement that bloody diarrhoea wouldn't trigger a scope in the UK but I truly believe that if Sarah had had these 'classic' symptoms she would not have been undiagnosed for so long. I have not been to a GP, GI, A&E department yet that hasn't failed to ask me about my children...do they have bleeding and/or diarrhoea. That being the case I well imagine a scope would have been high on the list of tests to be run.

As to labeling, this is lifted from an old thread I started...

To Label Or Not To Label, That Is The Question.

I sometimes think labelling people, or more to the point not labelling them, is becoming a problem in itself. I fully appreciate that doctors would not wish to falsely label someone with CD and commence prescribing the required drugs to treat it but does it go too far...I don't know. Are people needlessly suffering because no one is prepared to put their hand up and say it looks like Crohns, it acts like Crohns, it's debilitating like Crohns therefore it must be Crohns. Perhaps they could start slowly, with the more inoffensive drugs and go from there.

I don't know if my son was lucky to be diagnosed by appearances alone or if this frequently happens. Maybe this is why I am asking myself this question. It is not uncommon for me to read of undiagnosed people that have far more convincing evidence and symptoms than my son ever has. His colonoscopy showed no granulomas and so was inconclusive. He required surgery last month and the path report concluded that there was no conclusive evidence of CD, again due to no granulomas being present. Of course everyone agrees it is Crohns BUT he doesn't have the clincher does he?

I wonder how many others don't have the clincher and so go on undiagnosed with the docs dancing around not wanting to pass judgement.

It goes without saying that this is a complex and individual disease and one not to be taken lightly but is there a tad too much erring to caution at the expense of the sufferer?

Sunday night musings...
Dusty. xxx

http://www.crohnsforum.com/showthread.php?t=18683

If you have continued doubt I would concur further with the GI or seek the opinion of another GI or GI"s before ceasing treatment.

Dusty. xxx

 

[Sascot]

This is something I struggle with too. My son's scopes showed ulcers and inflammation but no granulomas, plus he doesn't have the usual symptoms of Crohn's. I kept hoping that it might be just an infection/virus that wouldn't leave his system. Now he has a fistula to deal with and I wonder if he had gone onto meds immediately whether that may have been avoided.
I have to say that I would never take the opinion of a GP (especially in the UK) over the opinion of a GI. If you are questioning the diagnosis then I would only listen to the opinion of a good GI here. A GP does not have the experience or the training to be passing judgement on something as specific as Crohn's.

 

[Jane and Nick]

Thank you all, and I agree with you. Will be picking up his prescription tomorrow and have made a appointment to see his GI. Wishful thinking along with jet lag makes me indecisive. We are lucky that Nick was diagnosed so quickly.
This is a wonderful site filled with lovely caring and wise people.

 

[CrohnsKidMom]

If I may throw in my 2 cents worth (and I'm sure it's not worth more than that!). Jane and Nick, my husband works for a large insurance co which has the same provision whereby you can send a patient's file to another specialist for a 2nd opinion. Here in Nova Scotia I think files go to the Mayo Clinic in Boston. Anyway, hubby said there are cases where the 2nd opinion comes back different-and shows the first dx to be incorrect. So, if I was questioning my son's dx I would not hesitate to forward his file for a 2nd opinion, even though it would not include an examination of my child. Just my opinion...

 

[Jane and Nick]

That's so interesting thank you for you 2 cents, it's worth very much more to me. I will reevaluate the option and ask some more questions. It would be really useful to have a good second opinion as there are very few options available to me in Malaysia. THANK YOU !