In need of advice as to where to go from here

[kjb]

Dear Everyone,

Many of you helped me at the end of last year when I needed some advice about possible IBD and my 16 year old daughter who was very unwell and missed nearly 6 months of school.

R had all of the typical IBD symptoms - 20-30 times to the bathroom a day, blood in stool, aches in joints, ulcers in mouth, vomiting 2/3 times a week, loss of weight, anaemia, etc. This continued for months. Was finally put onto Questran which stopped the D from the very first dose and also neouropathic pain drugs such as Lyrica (which did nothing) plus codeine (which provided good relief for the final couple of weeks). She was scoped, pill cammed, blood and fecal tested, and had just about every test possible (including for infections) but everything came back in the 'normal' range. The scopes showed nothing unusual either.

After five or so months, andd just as she was having to stop the codeine after 2 or so weeks, one day I came home from work and she just looked much better. Over the next few days the pain reduced and changed from a 6 or 7 to a 1 out of ten. Eventually the pain (abdominal and joint) stopped, and even the BMs returned to normal (after about 6 weeks).

In mid-January she went for an abdominal ultrasound which also showed no evidence of IBD. No thickening of bowel wall, no inflammation.

She currently has no pain or urgency with BM but still has some mouth ulcer issues, but has also taken to breaking out in hives whenever she is near grass or wool (go figure??). She also has trouble digesting some foods (like rice of all things - just comes straight through completely undigested) and can't eat anything too fatty.

I'm hoping that someone might be able to shed some light here? Our GI was really surprised that she couldn't diagnose Crohn's as she basically said that she was just going to do the scopes to confim things. The GI believes that R has an auto immune disorder of some kind (rather than IBS) - tested for vasculitis and came back neg. R is over doctors and hospitals and just wants to get on with life. I'm not sure if we should be continuing down the diagnosis path or just leave it til it rears its ugly head again. This is etiher the third or fourth time this has happened over the past 6-8 years but this time has been by far the most severe.

Also, could it still be IBD and there hasn't been significant enough damage to be seen yet or do we now wipe that from the list? Was this a flare or ??

Any ideas would be well received!

Many thanks
Kate

 

[Maya142]

Have you seen a rheumatologist? There are a lot of autoimmune disorders - Behcet's is one - which mimic IBD.

I don't think we can tell you for sure whether she has IBD. I can tell you her symptoms certainly sound like IBD. It could be she has IBD and somehow it was missed during imaging. Or it could be something else entirely.

I think you probably won't know till she flares again and then you may have to repeat all the tests.

For now, I would get her to a rheumatologist and besides that, let her enjoy feeling better.

I am also going to tag some parents who may be able to give you some ideas:
crohnsinct
my little penguin
Pilgrim
pdx
Farmwife
Jmrogers4

 

[kjb]

Thanks so much Maya for taking the time to reply and for tagging the other parents.

I took a look at some Behcet's info but she has not really got any genital sores or eye lesion issues.

Perhaps a trip to the rheumatologist is the next step then. I do see where she is coming from though as she is just over being a pin cushion!

Thanks again, Kate

 

[my little penguin]

Behcets can take up to 10 years to have the triad and some don’t every get the eye issues
Rheumo still is the one that would treat Behcets
Have they biopsied the mouth sores ?

 

[kjb]

Thanks for taking the time to reply my little penguin.

No, there has been no suggestion to biopsy the mouth ulcers. Interestingly, they seem to be getting a bit smaller as time goes by - perhaps they will eventually just disappear!

 

[Pilgrim]

If things are settling down, I can understand the desire to just enjoy the break!
If it's IBD, it will return.

 

[Jabee]

Sounds like you did every test under the sun. Your poor daughter. I’m wondering if they did any tests checking her immune system? Common Variable Immune Deficiency—and other, related immune deficiencies—can cause some serious GI symptoms. It’s just a thought. I hope things continue to settle down.

 

[Farmwife]

I'll tag in Dancemom
Her beautiful daughter was suspected of having IBD but it came back something else.
She be the best one to describe what it is.

No new advice because you've done everything right.
I know it's frustrating.
Hugs

 

[DanceMom]

Yes! See an Immunologist! Immune issues can definitely be cyclical. We've dealt with diarrhea, bloody stools, hives, and so much more! One thing that stood out to me was that she doesn't tolerate fat well. Read a little about Intestinal Lymphangiectasia and tell me what you think!

 

[kjb]

Thanks so much everyone for your replies. Lots to thinks about!

Pilgrim - thanks and yes, this is the 3rd or 4th time this has happened but this cycle/flare/whatever has been by far the worst.

Jabee - thanks for the advice re the immunologist (also suggested by DanceMom) will try and follow that now!

Farmwife - thanks for adding your support and trust that little Grace is doing well

DanceMom - thanks so much for your info and YES, she did have swollen legs (even the GI picked up on that). She had biopsies done when she had the endoscopy so would thay have tested them then or would they ONLY have been looking for IBD given that was the purpose? As I said, the GI was surpried when there was no inflamation observed as he believed that he was going to confirm IBD there and then. The only thing they found was a 'nodule' but said that it was nothing to be concerned about.

You guys all know what I mean when I say that we don't particularly want a diagnosis of anything, but having one makes it easier for treatment and to know where we are heading. The unknown (and everyone telling you about yoga, naturopaths, accupuncturists etc as a way to fix things) is frustrating.

Thanks again
Kate

 

[DanceMom]

A had 5 scopes or so before they found the lymphangiectasia. It's easy to miss because it can be patchy and not all doctors know what they're looking for. It's extremely rare. A's case is mild at this time and we're grateful for that. Prior to treatment she got facial/neck swelling. The lymphangiectasia typically causes malnutrition, swelling, severe diarrhea, and immune issues.

 

[kjb]

Hi DanceMom and others!,

Thanks so much for your reply. When I first looked at the internet and sore swollen legs and intestinal issues as the two major symptoms ..... Bingo???

Can I ask whether IL can be found when they are "well" or only when in a "flare". My girl has been good for the past 8 weeks or so but has slipped during the past few days so keep your fingers crossed we are not heading back into a flare. Poor kid.

Also, in terms of finding an immunologist, do we ask the GI - ie are there immunologist who specialise in GI issues or are they across the board?

Thanks again!

 

[DanceMom]

A was pretty sick when they found her IL. Looking back, they saw "tiny white spots" on the pill cam that was probably IL too. Our GI recommended a good Immunologist at a different hospital. One that does a lot of research and takes on lots of rare cases. She actually treats the IL, not the GI. We use Cellcept and it works well. We're having a slight blip right now because we tried to decrease her dose but we'll get it worked out. IL is so rare and each patient is really treated differently.

 

[kjb]

Thanks so much for that information DanceMom.

I will have to make an appt to see the GI and see who she can reccommend.

I hope that A is doing better with her changes in meds - are they something she stays on all the time or just when she is unwell? I seriously thought that R was heading back into flare territory over the weekend (as pain and BM increased dramatically) but hopefully it was something she ate as she was ok lastnight. She ate a chicken souvlaki as we were out with friends and that seemed to be the best option.

Has A managed to keep up her dance regime with the IL? Does she have IBD in addition to the IL?

Many thanks again for your help
Kate

 

[DanceMom]

She takes Cellcept daily, probably forever. If it ever becomes ineffective we've discussed moving to Tacrolimus next. She also infuses Hizentra weekly. We've tried to space out infusions before but she suffered. She just needs these medications to be stable and that's okay.

As she gets older the demands of dance have become difficult. She stopped running in order to conserve energy for dance. It's her passion but it doesn't come without struggles.

At this time she doesn't have IBD. Most doctors say she's likely to develop it at some point. I'm hopeful that if she continues treatment that may not happen.

 

[Jenn]

The hives with grass and wool jumped out at me, have you followed up with an allergist? Food allergies can have intestinal effects, so just a thought.
Hope you get it figured out soon and can begin to treat effectively

wanted to add - for the mouth sores, try mixing a teaspoon each of liquid benadryl and maalox, rinse and spit (not swallow), a couple times a day.

 

[kjb]

Hi Jenn

Thanks for the post.

To be honest, thought it was grass and wool but now it seems to be just going out into the sun. Direct sunlight seems to be the issue, shade is not so bad - a bit of a problem in the Australian summer!! It has settled down a bit though so hopefully it will resolve with time. Maybe just the tail end of eveything she has been through....?

My poor girl is over doctors and is not keen to see anyone now that the serious stuff has subsided. She had some routine bloods done yesterday so will wait and see what the GI says before working out what to do next - Rhuematologist, Immunologist, or just stay put and enjoy being not so sick for the moment.

The bigger issue is that she returned to school after 4 months away to have her friends ditch her - so she is struggling more with that at the moment. She seems to have gone from a reasonably popular kid to one no one really acknowledges (even from kids who weren't her best mates) so her life isn't really very happy re school. Fortunately she has friends out of school who have been fabulous and still love her. It breaks my heart as she is a sweet kid (especially for a 16 year old!) and having been so unwell it just seems so unfair to have this as well. Sorry for the vent!!

Cheers
Kate