Back to Uncertainty

[Farmwife]

:yfaintifferential Diagnosis vs Working Diagnosis

Here's the best and most simple link describing the two.
http://www.larasig.com/node/7744

THIS IS WHAT WE LEARNED AT GRACE'S GI APPOINTMENT LAST WEEK.

The GI considers Grace's dx of IBD a differential diagnosis.:eek2:

Then the GI went on and on about not "labeling" children with these types of disease until the harder proof is visible. Since Grace's damage was microscopic at the time of the scopes he wants too wait to "label".

But here is what baffles my hubby and I. The GI went over board telling us that Grace is on all the right meds to treat her Ibd and JRA. He said her notes state clearly (which they do) that Grace has ibd. WHAT?


I don't know why it upsets me. She's getting treatment. It is what it is but why does Grace have to get worse again :confused2: before she has a working diagnosis. Why is there these different types of diagnosis? Why can't doctors think outside the box?


Has anyone else experienced this "labeling" problem?

 

[DanceMom]

Yep.... this is our world too......

 

[Farmwife]

Yep.... this is our world too......

Well it bites. Lol
My hubby says she is diagnosed with Ibd and stop worrying.
To me there's to many variables when something is not set in stone.

 

[SupportiveMom]

How frustrating! I haven't had any experience with this, just want to send my support! Hugs to both of you.

 

[my little penguin]

Breathe
You have an Ibd dx from mayo so its in her records regardless of your curent gi .

 

[Farmwife]

Breathe
You have an Ibd dx from mayo so its in her records regardless of your curent gi .

Do we??? She gave her opinion but I never saw on her notes she gave an official as in working dx. That's what's confusing me. Differential vrs working. If it all gets put in the notes how am I suppose to tell?

 

[DustyKat]

I find the labelling issue to be a major barrier when it comes to IBD. Whilst I have absolutely no trouble understanding why doctors do not wish to ‘label’ someone with a disease like IBD I do think that in certain cases this reluctance only serves to prolong the suffering of the patient.

As to diagnosis, there is an ordered routine in which doctors arrive at a definitive diagnosis and part of that process is a differential diagnosis and provisional (working) diagnosis.

A differential diagnosis is a process of elimination. If I walk into to doctors surgery tomorrow and say I have upper right abdominal pain he is not going to do an examination and say I have cancer. He will take a history and then start with the most obvious causes and work his way down the list until the answer is found, hopefully! :lol: So in Grace’s case they will have looked at the most obvious causes of her symptoms in children and work their way down the list from there. This then leads to the….

Provisional diagnosis. This is what is decided based on the information received by running a differential diagnosis. It is an initial guess that is still to be narrowed down by continued observation and testing and it doesn’t mean that all other possibilities have been ruled out.

Then finally you have your diagnosis. Which means they have identified/determined what the disease is.

I don’t think it is unusual to be upset by this Fw. :hug: We need tangible answers and to know the enemy we are fighting. There are many hard and heartbreaking things in our children’s lives and the uncertainty of not knowing exactly what you are dealing is one of them.

*HUGS* to you. :heart:

Dusty. xxx

 

[Maya142]

We would be in this boat too if M hadn't had a few granulomas. She has no typical symptoms - no bleeding, no diarrhea, only microscopic inflammation. Since she had granulomas though they said she had "early Crohn's". What I don't understand is that if not everybody with Crohn's has granulomas, why the diagnosis seems to depend on them?
Sending hugs:ghug:

 

[DanceMom]

We HAD a Crohn's diagnosis which was later taken away because of one clean scope (only 3 days after stopping prednisone). It was then that we were told that PAN was a possibility. We've also been told that regardless of which disease she has she is being treated appropriately and because of her age it is better not to label her for now. It is extremely frustrating because we don't have a name and we don't feel like we "belong" anywhere. We show up at the ER and we have to say, "Well, she might have Crohn's or it might be Vasculitis, but either way she has a chronic illness with GI manifestations and is on methotrexate." It is just bizarre.

 

[my little penguin]

Second the granulomas - that was the only thing that made DS go from a working dx of crohn's to actual crohn's dx. But he still has the crohn's is the best fit for now but all of DS's docs feel there might be something else going on ( DS is still puzzling to them )but are going with"crohn's" until then.
So even with an official dx .. Things may not be so official .

 

[SupportiveMom]

It just baffles me there are working diagnosis and actual diagnosis. The medical people that do this create more issues than anything. What is their objective or goal in this when all the do is create stress and worry with uncertainty? This just seems counterproductive to well being of a patient. It is hard enough to feel uncertain with medication but even worse with knowing what you do/do not have. Makes you doubt the skill of the doctors in my opinion. What are they trying to do? Lower the amount of people with IBD by saying the stuff? So the rate of people with IBD isn't 1 in 150, it would be 1 in 200 or whatever? So confusing!

 

[xmdmom]

If a doctor says "this is a working diagnosis" I would ask the doctor what s/he thinks the chances of it being something other than IBD and if so, what that would that be.

 

[kimmidwife]

I agree that is just ridiculous. What is the doctor afraid of? I second what xmdmom says. I would ask for further clarification.

 

[Farmwife]

Nothing else is being brought up. No other possible dx. It still crazy to think of how technical making diagnoses can be. I just never knew.

Update
Waiting for call back from GI and rheumatologist.
Grace has not bounce back from her virus last month.
Her right arm is unusable when the joints flare up, headaches almost everyday
and hour or so of pain the last couple hours before bowel movements.:confused2:

It sounds like they might increase one of her drugs.

Does anyone know what drug out of humira or mtx is likely to be raised first?

 

[Maya142]

We raised Humira (shot became weekly) before even adding mtx for my younger daughter.
A higher dose of mtx caused a lot of side effects for my younger daughter, but my older daughter tolerates 25mg (given as a shot).

 

[my little penguin]

I would just wait for the docs to tell you what the plan is...
Plus if there is a family history of migraines kids can get those regardless of disease activity.
Including daily headaches

 

[DanceMom]

What is her mtx dose again?

 

[Farmwife]

DanceMom her dose is .30, which if I read correctly it is considered low end of normal for a 5 year old. I could be wrong.

:hug:MLP I was only asking out of sheer curiosity and no migraines in family. These headaches started recently so I was wondering if it's side effects of mtx or the humira.

 

[DanceMom]

A is at .5 and I was told that was a rather high dose for her weight. Not sure how accurate that is but I did question if maybe she just needed a higher dose to eliminate some of these symptoms we're still seeing. I'd rather up the dose than ditch the med altogether.

 

[AZMOM]

My daughter got 0.4 back in our early arthritis days when she was 4. Now she's 10, we are at 0.8.

I believe it's all weight based.

J.

 

[SupportiveMom]

D started getting migraines after starting on Humira. She was on methotrexate for 6 months prior to starting Humira so we don't think the mtx is what causes the headaches. We do have a history of migraines in the family. Hope that info helps.

 

[Farmwife]

Rheumy nurse called and said she wants to give the Humira time to work and take Grace to her GP to evaluate her spine.

So tomorrow I guess I'll find out from her GP if he thinks her spine has issues.:yfaint:

 

[crohniekid]

I certainly have my fingers crossed for you that there are NO spine issues...that's all poor Grace needs! Hope that she feels better soon!

 

[my little penguin]

It took close to 4 months or more for DS to become stable on humira so she may just need time .

 

[Maya142]

It took us 5-6 months the first time M was on it. This time it took only 2 before she started feeling significantly better but she did the loading dose this time, maybe that made the difference?
Really hope she doesn't have spine issues, they're what bother my daughters the most.:ghug:

 

[Maya142]

Farmwife - trying to send you a PM but is says you can't receive new messages until you clear some space for them!

 

[Farmwife]

Farmwife - trying to send you a PM but is says you can't receive new messages until you clear some space for them!

:ybiggrin:
It's clear.

 

[kimmidwife]

Sending loads of hugs and prayers that her spine is fine!

 

[Farmwife]

Well........GP sent Grace for 10 x-rays of the hips and lower spine.
All he said is he want to rule out any structural abnormalities.:eek2:


So I sit and wait.

Grace had her fourth shot of Humira. Where's the time going?

 

[my little penguin]

I am not understanding why the 10 rays instead of an MRI/CT since they are looking into spinal JRA issues. WAS the Rhuemo aware :hugf this???? Since joints/spine are there area not GI--
WE go to the specialist who is covering that area and only the ped if necessary.

 

[Farmwife]

Her Rheumy told us to go to the GP and have him evaluate her.
Sooooooooooooo I did. Next thing Grace is getting x-rays.

Honestly I think her docs have to many kids. There always telling me to go to her GP.

 

[araceli]

I am in the same boat. After so many tests still no dx for my son. His GI and Rheumy have done all test to get a Dx but still they are not comfortable giving a official DX. Some of our kids don't follow the rules of the Deceases and that make doctors uncomfortable. On the other hand, and IBD dx is something for life, so I understand why Doctors want to make sure before giving one. Insurance companies want "PROOF' of the DX. and maybe Doctors are trying to protect themselves from legal problems. I had so many 'maybe dx' but at this point if you ask me, I do not know what disease my son has. More than a DX I just want my kid to feel good. Just my opinion. I do wish you find some treatment for your baby and she can be pain free.

 

[Farmwife]

:soledance:
Labs are in and all looks great. I haven't seen the sheet yet but the nurse said nothing was flagged and her liver numbers look perfect.

:dance:
The GI gave us the ok to reintroduce wheat. Since doing this Grace has gained weight without formula.

:emot-dance:
Her X-Ray looked normal. No skeletal defects.



The bad part. Since we know it's not damage it looks like her back/spinal pains could be AS but time will tell on that. So she might be put on muscle relaxers.


So overall I see improvements day by day. I hate these drugs but am so thankful for them. Kwim

 

[Imerald]

I'm glad there were a few positives! I hope you get your answers regarding the back pain.

I know exactly what you mean about the meds. : /


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[araceli]

Have they test her for the HLA B-27 antigen? I know that with AS it may take 7 or more years to show anything on x-rays or Mri. Glad all tests came back good.

 

[Sascot]

Glad labs looked good. Hope the intro of wheat goes okay. Wishing continuing improvements!

 

[kimmidwife]

I know what you mean about mixed blessings! I am glad to hear she is doing better though! I hope she does well with the wheat products!

 

[QueenGothel]

Sorry Farmwife, we have been living in Dx purgatory for a while. I have gotten quite use to it here, granted we do not have the drugs in the mix so life is much harder for your little one. Sorry you do not have clear cut answers. I am personally looking forward to the MAP vaccination adult trials starting soon. Hoping that it helps so many and especially these poor kids that just want to be kids.

 

[Farmwife]

Some good news update.

Grace is taking some tube feeds again (well I guess that part is bad news but)
she was able to take the WHOLE amount of 8oz. in under three minutes without any pain.
No nausea or cramping or any signs of problems.
:yoshijumpjoy:This is the first time EVER!!!:yoshijumpjoy:

So hopefully her tummy is healing up.

 

[DustyKat]

Sending you tons of luck and healing thoughts that this is indeed the case! :ghug:

Onwards and Upwards Grace!

Dusty. xxx

 

[Farmwife]

:ybatty: I know I'm a dunce but my hubby and I are puzzled once again.

We received papers for her stool test and noticed for the first time.........

Associated Diagnoses
IBD (inflammatory bowel disease) [some numbers] - Primary

What does "Associated Diagnoses" mean?
We've never seen "Associated" on any of her papers.


It is just a different way of saying differential dx or does it mean that yes she has IBD as primary now?


:ghug:

 

[my little penguin]

Associated dx are just the icd code required by the insurance so they will cover the test.
You can have multiple things there but without the right number - icd code the test won't be covered.
Ask me how I know
DS had routine bloodwork for crohn's done about a year ago but doc just clicked abdominal pain button and not crohn icd code . Insurance was going to make us pay out of pocket .

 

[kimmidwife]

Yes MLP is right about that. Those insurance things can be so crazy!

 

[Farmwife]

Thanks guys.
I talked with the receptionist at the lab and she said about the same.
However this was the first use of Ibd as a primary dx. Usefully it's been EGID's.

The only issue with this is Grace's, Children's Special Health Insurance.
That insurance will only cover primary dx's.
Which means we'll be on the hook for the co-pay and or deductible.
So if it's IBD as primary now........... I want it official!!!

 

[QueenGothel]

We have never had an issue with CSHC not covering something. Granted UC is her primary Dx. now we have ostomy supplies, biliary strictures, MRCP, urology issues, the list goes on and on. Never had an issues.