GI Appointment Update

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DanceMom

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Feb 17, 2013
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We met with the GI this week and it was a good appointment. A has been sick a lot the past 2 months and is having 1-2 stooling accidents/week. Not really acceptable, but not the worst she's ever been. Her height (9th %ile) and weight (6th %ile) are good. We did an x-ray to check for constipation but it hasn't been read yet. I don't think that's it but we'll see.

I brought up the pathology report that found intestinal lymphangiectasia. It is super rare (maybe 200 confirmed cases worldwide) in the primary form but can also be secondary to IBD. We think we've ruled out IBD though. We are considering a second opinion to diagnose/treat the intestinal lymphangiectasia and he suggested Dr. Piccoli at CHOP. Anyone see him before? We're going to repeat the A1A stool test and go from there.

We're going to continue infusions and the GI didn't recommend trialing off like the Immuno suggested. He thinks there's a definite immune deficiency and possibly some autonomic dysfunction going on. Time will tell.
 
Thanks for the update. I feel for you waiting and not knowing the best way to treat, etc. I hate that she's having accidents. Thinking of you both.
 
Was thinking of you guys. I think another opinion sounds like a really good idea. I heard good things about Dr. Piccoli at CHOP in another group I am in. Keep us posted.
 
A has some sort of rash on her trunk and arms. Tiny little red bumps that don't itch or bother her at all. She had it last summer as well and we were told it was viral. Fun stuff. She also has one leg covered in erythema nodosum. Some of the biggest lumps she's ever had. One is seriously about 2 inches in length. Fortunately she feels good most of the time and just keeps plugging along. Mornings are usually rough, but once she eats breakfast she feels better.
 
And she woke up vomiting. Geesh.

Update: Vomited once at 6:30 AM. Immediately gave Zofran. By 10:30 AM she'd vomited 7 more times so gave another dose. She hasn't vomited again but she just started taking small sips of Sprite. I have a message in to the doctor but this is probably just one of those things to wait out.
 
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Poor A!! I hope she feels better soon.

We have heard Dr. Piccoli is great, but have never actually met him. We have heard speak though, at an IBD Education Day event. He definitely knows a lot about IBD but of course, not sure about intestinal lymphangiectasia.
 
A is feeling much better. Labs/infusion on Monday. I'm hoping counts are low and her dosage can be increased. We can't keep going on like this. We turned in the Alpha 1 antitrypsin random stool test this morning and will complete the 24 hour catch this weekend. If you've never done a 24 hour catch you're missing out, lol. You get a huge plastic jar to fill with poo and freeze until it can be turned in. I'm sure the frequent reopening of this jar will be a lovely little party in the bathroom. Not looking forward to that fun.....
 
Labs look fine except ALT is elevated at 39. AST is 38. My paperwork doesn't give reference ranges but this doesn't seem exceptionally high. IgG is fine. I was really hoping it was low and a dose increase would be an easy fix.
 
My labs reference range for ALT says under 50 is normal so I would agree it is probably only very slightly elavated.
 
Males and females are different. Quest uses 12-32 for AST and 8-24 for ALT. Her WBC are 4.08 which by Quest's standards would be low. All labs are different. Waiting on our random stool test results.....
 
Random A1AT sample came back at 50 (normal is under 55). Still waiting on the 24 hour clearance sample. No doubt that without IVIG she'd be higher and even borderline elevated results indicate protein losing enteropathy.

So the question comes back.....Do we withhold therapy to obtain a diagnosis?

At this point IVIG helps tremendously but we're still seeing symptoms. We know it works, and after an infusion people will comment how good she looks and how full of life she is. But it just isn't that magic fill-up that it used to be. Frustrating.

On a happy note, A had her final regional dance competition over the weekend. Her solo was the highest scoring 9-11 dance, beating out all other solos, duets/trios, small/large groups, and lines/productions! She amazes me with her hard work and dedication. Very fitting that her solo is Savannah Outen's acoustic cover of "Brave". Thanks for letting me brag on my baby!
 
Dancemom,
If you would only have to hold the infusion a few weeks to get the answers I think it would be worth it to do,so.
 
Well done on her dance result! If the infusion isn't as effective as it used to be it might be worth holding it to get some answers. Very hard decision
 
kimmidwife said:
Dancemom,
If you would only have to hold the infusion a few weeks to get the answers I think it would be worth it to do,so.
Click to expand...

No, we would probably hold it for several months. Summer is always the worst time of year for her so it wouldn't be until at least September anyway.
 
It sounds good in theory, but to watch your child suffer for months and withholding treatment seems cruel. I'm torn. The GI is against taking her off. The Immunologist says whenever we're ready. Still waiting on that stupid 24 hour clearance test....
 
The question you may want to ask
Is the ivig fixing something ?
If her numbers are normal while on ivig AND she needs ivig to stay healthy ( mostly )
Why stop it ?
I get the it's not enough ( have similar issues with meds for ds)
But we weigh good days vs bad
When the number of bad days exceeds the good that's when we change meds test etc...

Since finding a med that actually works at all is very hard

I understand wanting answers Ds has lots going on mostly not dx
But we aim for good and strive for great
 
my little penguin said:
The question you may want to ask
Is the ivig fixing something ?
If her numbers are normal while on ivig AND she needs ivig to stay healthy ( mostly )
Why stop it ?
I get the it's not enough ( have similar issues with meds for ds)
But we weigh good days vs bad
When the number of bad days exceeds the good that's when we change meds test etc...

Since finding a med that actually works at all is very hard

I understand wanting answers Ds has lots going on mostly not dx
But we aim for good and strive for great
Click to expand...

I think securing a diagnosis is important for several reasons. If her immune deficiency is secondary, then IVIG is only a bandaid. If she truly has intestinal lymphangiectasia she would need to be on a highly specialized diet and may not need IVIG monthly. The treatment protocols are very different. This isn't the sickest she's ever been, but we're on the decline.
 
Dancemom,
That is a really good question. What about seeking another opinion? Maybe someone else would have some other ideas.
 

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