Undiagnosed for a year, seeing GI, and turning 5!

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Momto2girls

Momto2girls

Joined
May 18, 2012
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313
Welp, it's been a year since our first GI visit. We've sort of come full circle. After getting back our scope results in such a strange way (the pharmacy called us about Gracie's new medicine which needed compounding: sulfasalazine) and since I had not heard from the doctor I looked it up and decided that was it: she had been diagnosed with IBD based on her scope biopsy results. That was Thur. -- the GI didn't bother to call until Mon. At that time she said "non-specific inflammation." What? Well, we changed GI docs and ended up changing back. We see our original GI tomorrow, for the first time in a year.

I have been trying to figure out what's different in a year's time, and all I can say is: not much! Other than another year of abdominal pain, more severe constipation, ongoing fatigue, off and on and off again joint pain mostly just in ankles, ect. ect. The eye pain/dryness is new, but the second opinion said it wasn't really much of anything.

But now I am really starting to wonder: can that be IBD? Wouldn't it have gotten signifigantly worse over the course of a year? Wouldn't we see weight loss? Wouldn't we have blood everyday and not very rarely? Wouldn't we see more? Wouldn't she be sicker?

I still do not think it is nothing. NOT functional gut -- trust me, there is nothing functional about Gracie's gut. But, maybe it is still celiac and they missed it? Maybe it is something else? I don't know. I just know I am tired of trying to figure it out.

:dance: Gracie is 5 on Thursday! 5! She's JUST starting her little life -- off to Kindergarten in the fall! I just want to have an answer or I want it to all go away and put it behind us, forever.

So, what now? What do I ask the GI for now?
 
Functional gut- basically means there is not microscopic or structural damage ( which she already has) but the gut does not work in the manner it should.

AS far as daily or occasional blood- nope DS did not have that at all until his scope and then not at all for many months.

We did not see any height issues for him. until after he had stopped gaining weight for over two years possible three.

His weight lose only started after two years of not gain and even then it was extremely slow weight loss- would not have noticed except GI had us do weigh ins every two weeks and added boost to his diet to ensure calorie intake was good and easy to digest.

DId you not do the MRE??? I thought that was ordered for march 7th?

blood work? fecal caloprotectin if it has been more than 6 months since the last time.
Do you have a symptom log- if so show the doc.

What about how she did on the ASA versus off the ASA?
 
Ya, you need to ask specific questions like MLP pointed of about the functional gut.
You know Grace's story, she had NO weight lose up until a few months ago.

You know something is wrong, he should answer to YOU, not the other way around.

Like our dear old DustyKat:hug: says, Make him/her explain what you see in front of you.
 
Did you not do the MRE??? I thought that was ordered for march 7th?

It was scheduled for March 1 -- and we cancelled back before the eye problem came up. Also, before I took her off the sulfasalazine and all of the symptoms came flooding back.

blood work? fecal caloprotectin if it has been more than 6 months since the last time.
Do you have a symptom log- if so show the doc.

We haven't done bloods since Sept., so yes, I am thinking it is time to do them again. WHAT SHOULD I ASK FOR SPECIFICALLY? I know sed rate and CRP and hemoglobin and that stuff, but anything more specific -- any of the antibodies, or anything specific to types of iron and kind of anemia, and anything rheumy-related like an RH factor, and it is even worth the celiac panel AGAIN (been done 3x). Oh and they did a fecal lactoferrin -- which was normal -- probably about 2 months ago?

What about how she did on the ASA versus off the ASA?

LOTS Better on the sulfasalazine, but not ALL better on it. Does that in itself point to IBD, b/c I always kind of thought it would but that make it seem like it doesn't. (Though that was the other super looney-tune doc, and I haven't seen this doc in so long I'm not sure what she'd say.)

I will say while she's not lost weight, she's not really grown very much in height. I think I should put that together for the GI -- I've got the growth charts now. And I am going to take the eye exam report from the first eye doc so she doesn't think I am crazy.

Plus, her last blood test did show she was high in something....what was that!? OK I gotta go find that.

ETA: Platelets were high. Apparently not high enough to alarm anyone, but I think it is at least of note.
 
So frustrating. I hope they find some answers soon. Have you thought of going somewhere else for another opinion?
 
Wish they could find some answers for you. I remember going through this for both kids. The doctors look so happy when they tell you the tests are normal and yet there comes a point at which you just want to know what's wrong so they can treat it - a positive test result is all you want.
Just keep trying. My daughter had severe pain in her bottom, some constipation and sore tummies - turned out it was her appendix which no one was expecting. They just need to find the right test to see what's happening.
 
Thanks everyone! We are on our way! I have all the old charts, the growth chart (which does show weight loss and then re-gain once on meds, as well as about an inch of growth this year -- we'll see what she measures today) and the eye exam report.

I am hopeful! This doc is WAY more reasonable that the REALLY SUPER WEIRD AWFUL HORRIBLE LUNATIC we saw the last few times. (And I am not exaggerating...and apparently every doctor in town knows this -- even out new ped.) Ugh!

Thanks!
 
One other thing I noticed in looking over the charts last night was that this whole thing started in her bladder -- and back when they used to do urinalysis on her all the time she ALWAYS had mucus in her urine. ALWAYS. What the heck does that mean?
 
Of course it does! Aaaaaaaaack!!!
Ok went well at GI...I'm in car dropping off at preschool so il have to update a bit later.
 
Hahahahaha! Totally!

I am on this horrendous deadline for work today and haven't had a minute to look up! Ack!

OK so she does see that there is something still going on. She said that if the cryptitis were from some sort of infection then one course of sulfa would've fixed it and it would have gone away. She looked over the bloodwork from Sept and said she's now convinced it is not celiac. She said it could be a couple of things:

- Rhuematic. She is sending us to see the rheumatologist to "rule out" something that is only rheumatic. With the joint pain and especially with the eye dryness she said it is necessary to make sure there isn't something strictly rhuematic disease related. She said she doesn't think so, but she doesn't know for sure and we hate to keep scoping and looking if it could be something else?

- The inflammation may have caused her nerves to become hyper-sensitive. So, she said there is a medication she can give to just calm down her nerves and help the pain. This would be the next step, so we can see if this helped then we could assume the inflammation was gone but the nerves were just still flared.

- IBD. I think she's pretty sure we're going to have to re-scope. She wanted to do these other two things first in case we uncover something else and don't have to re-scope, but the fact that the sulfa does help points to ongoing inflammation. And just the fact that she did have inflammation last time means it should probably be looked at again. She wants to start with the scope, and follow up with and MRE or pill cam if necessary. They can't do a scope and an MRE together b/c you need the barium and they pump in air for the MRE and that would mess up the scope.

(Also, she thinks we need a third opinion on the eyes. She said the opthamologist's report included nothing of the eye doctor's report? She said it was a very "routine" report with nothing else included. So that's really weird. ?? She said if it were her kid she wouldn't want to mess around with their eyes.)

I think that's it!? We just wait now for the rheumy to call. Oh and ETA: she wanted to see what labs the rhuemy wants (if any) and then she'll add her labs to it so that we just do one blood draw. So that is good. She said she could do screening labs for rheumy but she was afraid she might miss something and then Gracie would need another blood draw. So yes we are getting all new bloodwork, but we're just going to do it all together.

Is there anything rheumy-related that includes the abdominal pain?
 
Sounds like a good appointment! She seems quite thorough - hope the Rheumi appt comes through soon.
 
Bechets
corticosteroids either given by mouth or as eye drops, and medicines to help prevent spasm of the iris muscle in the eye and/or immunosuppressants taken by mouth or sometimes intravenously. Sometime the eye can be injected directly with corticosteroids (under general anaesthetic).
4. Arthritis.ThisisfairlycommoninchildrenwithBehcet'sdisease.Itmayaffect one or more joints. This may be helped by simple treatments such as paracetamol or anti-inflammatory medicines like ibuprofen; but may ultimately require immunosuppressants to control more severe arthritis.
5. Bloodvesseldisease.AnybloodvesselinthebodycanbeaffectedinBehçet’s disease, including blood vessels of the heart, lungs, intestine and brain. Aneurysms of the main lung arteries can occur, a severe but thankfully very rare complication of Behçet’s disease in children. These require urgent specialist assessment and treatment.
6. Gastrointestinal involvement. Again, although severe, this is a relatively rare complication of Behçet’s disease in children. Ulcers can occur in the wall of the intestine causing tummy pain, weight loss, fever, and sometimes the passage of blood. Investigation of this would include an endoscopy (intestine telescope test) and tissue biopsy which is routine but would be performed by a paediatric gastroenterologist with experience in doing this. Again the treatment of this would be dependent on the severity, but would include immunosuppressants and corticosteroids.
7. Thrombosis.Thismeansformationofbloodclotsusuallyinavein,andthisis recognized in some children with Behçet’s disease. It is not possible for doctors to predict who will be at risk of this. The usual treatment of this will include anti- coagulants and/or low doses of aspirin depending on the site and severity of the thrombosis.
8. Involvementofthebrainandnerves.Althoughheadachesarerelatively common in children with Behçet’s, serious neurological complications are thankfully rare in children, although can occur. This can cause severe headaches, strokes, thrombosis in the main vein of the brain causing very severe headache, and sometimes involvement of the nerves to the peripheries. Sudden onset of new headache or other neurological symptoms requires urgent specialist assessment, MRI brain scan and appropriate treatment, usually with corticosteroids combined with immunosuppressive agents under specialist advice.
9. Kidneyinvolvement.Althoughrecognized,kidneyinvolvementisrarein children with Behçet’s disease. Inflammation of the kidneys can occur (glomerulonephritis) and would require a kidney biopsy to diagnose. Sometimes inflammatory proteins made by the body in response to poorly controlled inflammation caused by Behçet’s disease can accumulate in the kidney. This rare long-term complication is called amyloidosis, and can be prevented by ensuring that the Behçet’s disease is well controlled generally. It is very rare in children, but can occur in adults.
10.Effect of Behçet’s disease on growth and puberty in children
Severe uncontrolled Behçet’s disease can impair growth, delay puberty, and can cause osteoporosis (brittle bones) in children. This is due to the underlying disease, and sometimes its treatment with high doses of systemic steroids for prolonged periods of time. This is why it is important that the overall treatment of your child disease be monitored carefully by a specialist.
Click to expand...

Although the usual onset is in adulthood, the disease can and does occur in children. There is a spectrum of disease ranging from children with recurrent mild mouth ulceration, to those with severe complications affecting other organs in the body (see below). We do not know what causes Behçet’s, or how to predict how severe your child's illness will be, but we believe that a combination of genetic traits (such as a marker called HLA B51) which are found more commonly in certain ethnic groups (particularly in patients from Mediterranean areas and the Far East), in combination with environmental factors are likely to contribute to the disease onset and its severity. This is an ongoing area of research.
There is no specific diagnostic test for Behçet’s Disease, and it is important that your doctor excludes other conditions that could mimic Behçet’s Disease in children such as inflammatory bowel disease, immunodeficiency, periodic fever syndromes or autoimmune diseases such as systemic lupus erythematosus.
Symptoms your child may have and their treatment
1. Mouthandgenitalulcers.Mouthulcersandgenitalulcersarecommon,and
can be painful for children. It is rare that these cause long-term disabling or disfiguring complications. The treatment of these therefore includes simple measures such as topical corticosteroids (adcortyl in orabase), or steroid creams or sprays (different options are provided at http://www.behcets.org.uk). Other treatments may include medicines such as colchicine or other immunosuppressive agents (see below).
2. Skinrash.Thesecantakedifferentformsincludingrednodules,acne-likespots, folliculitis, or unusually severe reactions to stings or other trauma (a reaction called pathergy). Sometimes this pathergy reaction is helpful to diagnose Behçet’s disease. This mainly applies to patients from Turkey or the Far East because this type of reaction is seen much less commonly in patients from Northern Europe. Treatment is with steroid creams, colchicine, or for more resistant or severe disease oral steroids and/or immunosuppressants under expert advice (see below).
3. Eyedisease.ThisisamoreseverecomplicationofBehçet’sdiseaseand requires careful assessment by an ophthalmologist, and specialist treatment. Uveitis and vasculitis affecting the eye can occur. Typical treatments will include
Factsheet provided by Dr Paul Brogan on behalf of the Behçet’s Syndrome Society, 2009
Click to expand...

From:
http://www.behcets.org.uk/Documents/web - children.pdf

Often mistaken for Ibd
Eye issues
Stomach
Joints
Etc.
You can have some but not all the symptoms .
 
This is WONDERFUL, MLP -- thanks so so much -- I haven't even read it all but I am going to, for sure.

Interestingly we were at ballet tonite and all of the moms were chatting. I was telling some of the ladies about some of Gracie's symptoms and a mom chimed in "has she been diagnosed with Crohn's?" and I said no. And she said "have you been to a rheumatologist?" And I said no, but that our GI just said that's what she wants us to do next. She said it sounded rheumatic to her, etc. etc. and I finally asked "well, do you have something like this or does one of your children?" And she said well, no, but I'm um, a surgeon. Oh! OK, so this gal may very well know what she's talking about! Just thought it was interesting a physician came up with that just in the course of casual conversation?

OK I am going to read up on Bechet's after dinner!!

The other thing I had forgotten that the GI mentioned was vasculitis??
 
Vasculitus is part of crohn's and bechets .
Hope it is not bechets
Don't read anymore about
Just make sure Rheumo checks
 
So glad your appt went well. This GI sounds very on top of things. Glad you found a good one. Hopefully you will get some answers finally.
 

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