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Keeping me on my toes...

Tesscorm

Moderator
Staff member
S has been having symptoms that have him a bit concerned... they're not severe but have been persistent for a month or two so it's beginning to worry him.

...he's been having pain in the upper right quadrant fairly consistently... maybe not every day but most days. (In the past, his inflammation was primarily TI/small bowel although I do think he had a few small patches in his colon at dx.)
...constipation
...canker sores this past week
...restless leg syndrome, which he says the last time he felt that was just prior to being diagnosed. His HGB was low at dx and low HGB can cause RLS.
...falling asleep after work (prior to dx, he was falling asleep after school).
...and his eyes are getting that crusty sensation again... which is probably unrelated, however, it was one of the symptoms he had in the summer when he was 'sort of' diagnosed with adenovirus (we never did get confirmation).

However, he hasn't lost any weight and says his appetite is good/same. No fever, no nausea. And I don't think he looks pale. All these were symptoms prior to dx.

He has his next remi on Saturday and, luckily, his next GI follow-up Mar 30. If nothing changes (and, nothing significant shows on labwork), then we'll wait until his scheduled apptmt. (Everytime I plan on S going to see his GI on his own 'from now on', something comes up! 😳)


And, just to keep things really interesting... my daughter was diagnosed with VAD about a month ago (vertebral artery dissection). Like THAT doesn't have me stressed enough!!

One night she woke up with loud ringing in her ears and wanted to go to ER. I wasn't concerned and told her to go back to sleep and book apptmt with her GP in the morning. Her GP didn't do anything, said to give it some time, that as it was right after xmas, she'd been off her usually strict diet and may have thrown off her electrolytes. After two or three weeks, she still wanted to go to ER because she said she couldn't stand the noise at night (during the day, there's enough other white noise that it wasn't so bothersome).

Over the course of a few days, two ER visits, a CT and MRA, they found that her vertebral artery had dissected. BUT they don't think it has anything to do with the ringing in her ears! Just coincidence! From my perspective, very lucky coincidence... from hers, she's very annoyed that she went in for one thing and came out with a second problem!

For now, she's only taking a baby aspirin every day and has another MRA on April 30, when it will hopefully show that it's healed on it's own. 🙏 She's really frustrated because one of the things the neuro told her to avoid is lifting any weight... for those of you who know me and remember me talking about her, she does fitness competitions, so the exercise limitation is not sitting well with her! Thankfully, her real prep/training doesn't start until summer - otherwise, this would have been an even bigger battle! It's also meant that we've had to postpone a trip the two of us had been planning... Maybe I'm being paranoid but I'm too worried to travel out of the country until we know this is healed. It's hard because, from what I've read, aspirin is a typical treatment and it can heal itself in 3-6 months. So it's really just a wait and see.

As for the ringing, we saw the ENT and he couldn't find any reason for it... especially as she'd had a CT and MRA (which usually wouldn't be done for tinnitus). He said it sometimes just happens and sometimes just goes away. She thinks it's getting a bit better??

So, ugh, I am really looking forward to this spring coming quickly!! So I can be told that both are 'good to go'!!
 

crohnsinct

Well-known member
Aww Tess!

Heck to the yeah, I wouldn't be leaving the country until that VAD was settled.

As for S, I think there are enough little things going on to raise the alert to yellow. I am glad he is getting labs done soon. Will he get a cal pro? If not, I would ask to add it to the orders....but you probably knew I was going to say that! I think nausea, loss of appetite and looking pale are pretty far along in a flare and I would just want to get ahead of things IF it is IBD related.
 

Tesscorm

Moderator
Staff member
Yes, I think yellow alert is sort of warranted... he'd mentioned some of the symptoms a couple of weeks ago but I really did stick my head in the sand... with my daughter's VAD, I didn't want to be worried about crohns too. (And I think I'm still only 'peaking' out of the sand! :oops: )

Years ago, I asked his GI about FC and he wasn't a fan... said he didn't find it a very reliable test (perhaps because S's inflammation was in the small bowel). And, at the time, it wouldn't have been covered by our provincial medical... but, if necessary, I'd pay. I'll wait to see what these blood results show. If CRP is high or HGB low, I'll request FC so we can have results before his follow-up. (How long does it take for FC results?)

Imaging - his last scope was Nov. 2018 and all was good. His last MRE was summer 2016. And, I dropped the ball here... when we saw GI in the summer because of the adenovirus, GI said S was due for an MRE. It was missed (his assistant went on maternity, etc.) and, as I knew he had this March follow-up coming, I didn't follow up re the MRE... my fault, I've become complacent because things have been good for so long.:mad: But, maybe it'll work out for the best... An MRE from a few months ago might not have shown anything, so a current one now will be more valuable.

Last levels test was summer 2016... guess this could be done as well.
 

Tesscorm

Moderator
Staff member
CIC - yes, you're right about the nausea, paleness, etc coming later... thinking back, S's first signs of anything being wrong were in December and we thought it was just a bug and he never mentioned it again. It wasn't until February that the fatigue, paleness, weight loss started becoming apparent...
 
Sorry to hear about all that your kids are dealing with--that's crazy about the VAD! I hope the upcoming remicade infusion is enough to get S through to his next GI appt.

E has also been having nausea, constipation and fatigue for the past few months, along with calprotectin results that have been sitting right around 250-300 for the past year. It's hard to know if the nausea is just due to constipation that is unrelated to Crohn's, or if they are both due to simmering Crohn's. She's probably due for an MRE and scopes soon too. She'll be switching to an adult GI in 5 months when she turns 18, so I imagine the new doctor may want to do both this summer to see where things stand before taking over care.

Hope that both your kids are feeling better soon--keep us updated.
 

crohnsinct

Well-known member
@Tesscorm - Fecal cal results come back within a week. I understand what a lot of GI's say about levels and how they really don't tell you a lot because a 200 in one person can be fine but if you look at 200 in another, they could be a mess inside. This is why it is so important to get them at the same time as imaging/scopes so you know what that value means for a particular patient. Of course, once someone with IBD is over 700-800 it simply means flare no matter who you are.

There is some pretty promising research being done on another non invasive biomarker that looks even better than fecal cal...
 
@pdx your pediatric Gi doesn’t keep kids till they are done with college ???
Our old one did and current one does as well ....
Hmmm
No, Kaiser requires us to switch, and that is hard since we love our pediatric GI. I think it's just a caseload issue, since Kaiser in Oregon has just 2 pediatric GI's (and that's up from the 1 that they had when E was diagnosed). There are dozens of adult GI's, so there's no scarcity there.
 
Tesscorm - so sorry you are dealing with the stress of it all. You've got this. You are a pro with the crohn's - S might need an increase in his dosage (assuming he stays on remicade). It's not like the last time when he was younger and skinnier and sicker. You are ahead of it this time. It might just be a little setback. Or he might need a change of his medication but it will all work out.

I don't know much about your daughter's condition but I will look it up. We're here for you. Big hug.
 

Tesscorm

Moderator
Staff member
Re ped vs adult GI - S was transferred to adult GI the day he turned 18. There was absolutely no leeway in this at our children's hospital. However, our ped GI offered their recommendations and took care of everything relating to the transfer.

PDX - if you do have imaging done prior to the move, see if you can EASILY get the film at the same time (just for your convenience). When S was transferred, even though the two hospitals/IBD centres work very closely with one another, his adult GI wanted the film from his previous MRE so his own radiologist could prepare report. Wasn't a huge deal to get it after the fact but, as S was no longer a patient, took a bit more paperwork/delay to get a CD with the film. And, I hope you get some answers for E soon!

CIC - thanks for the info... back to basics here... getting copies of labwork, etc. We'll see what his labs show this weekend. And, it certainly wouldn't be the first (or 10th) time S comes down with random symptoms, that are bothersome enough or last long enough for him to be concerned and then disappear before we can get a real answer! 🙄 I'm glad his next apptmt is already scheduled!

Jo - thanks! And, yes, it's been seven years since S's remicade dose was tweaked... so, perhaps, he needs a bump up (he's at 6 weeks but only at 5mg/kg).

And, re E's VAD - ugh, I found out last night her MRA isn't until May 31! It was April 30 but, as that was when we'd planned to be away, she'd rescheduled... not knowing that I wouldn't want to go away until this was settled. And, neuro apptmt is scheduled for May 1 - which won't help at all as he'll need MRA results. :( Asked her to call back and try to reschedule again, to an earlier date...
 

Tesscorm

Moderator
Staff member
Nothing to update but didn't want to just leave it hanging...

S is still same... Unfortunately, during the time that I've stopped requesting test results, policies have changed at his GI's office (maybe hospital policy, new assistant who doesn't know me as PITA mom ;) , etc.) but they no longer send out results. We can access them online but this means S needs to go set up account either at hospital or lab (I know!! Trying to be more tech efficient for patients by offering online access but, btw, you need to come in person to set it up?!? WTH??). So, S won't be able to set up his online access until end of March. But, if anything was way off, we'd be getting a call.

Same w daughter... waiting for MRA...

So, just an update to say there's no update. :rolleyes:
 

Tesscorm

Moderator
Staff member
A small update on S.

We finally got a copy of his last results (from Feb. 22), couple things were off but PA told us that the numbers weren't hugely worrying...

The only things which were 'off' were:

Lymphocytes - 3.7 (normal 1.0-3.5)
Creatinine - 59 (normal 67-117)
Alanine transaminase (ALT) - 53 (normal <50)
Gamma-Glutamlytransferase - 73 (normal 14-62)

Everything else was normal.

He has his next infusion on April 6. At that infusion, labs will be run again and remi serum levels will also be tested.

They are also going to run FC test (this surprised me because when I once brought up FC tests with his GI, he'd said it wasn't a test he used often - at least, not for S's disease location??). They'll mail the kit to us...

He was also supposed to have a follow-up with GI on Monday but it's been postponed and will advise further after the new test results.


(And, re daughter... no change... waiting for MRA at end of May.)
 
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