Urgh. Matt update

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Dutch941

Dutch941

Joined
Jan 18, 2012
Messages
219
Location
Syracuse,NY
Hi all.
I know I'm guilty of having been scarce around these parts lately. Fortunately, this is because Matt has done well since stopping 6mp about 6months ago.
However , this weekend things seem concerning again. Especially to me, because I'm neurotic about him getting sick again.
Here is the current state of things...please add your input:
Reduced 6 mp in August 2012 due to liver issues
Stopped 6 mp in sep 2012 after liver issues didn't correct
Now we're relying on pentasa..liver corrected and things have gone well since.
This week we did Bloodwork and I have a Few concerns as follows:

SED rate up to 21 from the 5 to 10 range...this trend seems to have started at stoppage of 6 mp...GI not concerned.

VIT D levels which were improving to low 30 s dropped to 29. GI not concerned

IRON and ferritin still improving butnag abut 1/5 the rate they were (very small movement last 5 months (HGB still good at 14 though)

These are allegedly small concerns....to everyone but me. Then this weekend came and with it stomach pain..he was extremely uncomfortable..constipated yet frequent small stools...was in bed most of Friday and Saturday...and on Saturday his first vomit since remission ....mild stomach pain today...no fever.

So my wife (who is much more relaxed than me) is reminding me that kids get sick and this may have little to do with UC. GI reminds me of the same.
But I can't help connecting the dots to the labwork trends since 6mp started and the fact that he has Gastro distress when his SED rate hits 21.....the last time his SED rate was 21 we ended up in the ER with unexplained stomach pain...

In a nut shell, I can't help being concerned...I want to believe its a fluke...typical child illness, but my senses say otherwise and I may need therapy of my own soon! I think I slept maybe 1.5 hrs last night despite being in bed about 12 hrs.
So yeah....urgh about sums it up. Hope everyone else is well...
 
Well Hi Dutch - I'm glad to see you but hate it's due to worry!

Okay - here's my two cents. You are going to know your kid. For us, a rising ESR is always a huge warning. For others, the crazy up and down ESR means nothing. When do you repeat the labs? If it isn't in like 4 weeks and you keep seeing signs, I'd request a repeat.

Get your symptom tracker out and start making notes. Hoping and praying he is just "sick". Your wife sounds a lot like my hubs. :) But like Dusty or T or Dex or Ang or some other wise soul once said, they can't ever just seem to be "sick"......can they?

You aren't alone with your neuroses. :ybatty:

J.
 
We have our GI visit in a few days so I'm going to request another run of Bloodwork in the near future. I think we went too long this time around given the recent medication changes....we waited 3 months for labwork and I think we probably should have done it in two. My intent is to express concern over the SED rate and request we monitor that closely.
The GI take is that 21 doesn't typically alarm him. But his philosophy is based on average patients or the totality of his patients and not "Matt specific". My philosophy is HIS trends need to be analyzed against HIS history....and I know that his SED rate was not much higher on presentation when his colon was described as a "war zone".....so my thought now is that his rate is nearly as high as it was when he was very ill...and the only evidence we had then was constipation...vomit....and weight loss....and he has the stomach issues and vomit issues right now...no weight loss though, in fact, quite the opposite.
 
I think that's an excellent plan!!!

Not that you need my seal of approval. :lol:

J.
 
I was happy to see you post, followed by fear that Matt was poorly...
I am hoping against hope that it is a bug...
Izz's GI tells me that this winter has been especially fierce on his IBDers.
Personally I don't put much faith in SED rate, but if it is off along with his other labs/symptoms I would be more inclined to stress a bit.
Wishing an uneventful rest of the weekend for Matt.
 
Thanks Angie.....I'm hoping bug too...but no fever. I thought a bug would always come with a fever. Despite the higher SED rate, the CRP came back >.500 which is normal.....and although I've forgotten much in the last year due to better health and less research...I thought I remembered hearing the CRP is a better indicator?? I'll have to check and see what his CRP was back when he was ill.....
 
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There was discussion. He mentioned remicade briefly...we aren't huge fans of walking down the remicade path just yet and we pushed LDN. He opposes LDN but did read a packet of info that may wife compiled....he agreed that he would guide us to someone who could prescribe LDN and would stay our GI to monitor the results if that's what we wanted, however, first he wanted to see if the pentasa would handle things by itself. This, because Matt's condition is UC and he stated that Pentasa has been successful with UC in some cases..not so much with Crohns. The pentasa has been working well and may still be working well unless my neurotic fears are correct....these minimally bad labs and this weekends stomach pain is our first road bump since stopping the 6 mp...so 6 months.....
 
I think moving up the next bloods is your best bet for now. Good luck with those neurotic fears:)
 
Yes, I have heard that CRP can be a more accurate gauge...ESR can lag a bit so the result may be "old".
 
Hi Dutch ~ good to see you back :)
So sorry Matt isn't feeling well again.

I'm much like you with studying and tracking the labs, so I can completely understand your fears. WE know these kids and their patterns better than any specialist ever could!

Best of luck with the appointment and hopefully the new bloods will show something more solid.
:hug:
 
I hope your new labs alleviate your fears and a little tweaking of his diet clears his constipation...
 
Hey Dutch...:hug:

Now since I am president of the worry club I hear you loud and clear! Hmmmm, I must dredge that old thread! :lol:

Seriously though Dutch, bloods can be an enigma when it comes to inflammatory markers. That is not to say that your boy isn't reflecting what the ESR is indicating but I would also be requesting a faecal calprotectin be done, that way you are removing any outside influences.

CRP is what is generally used to gauge disease activity and response to treatment as it will move much more quickly in response to both.

Dusty. xxx
 
Thanks....yeah I'm assuming the calprotectin will be suggested at the next visit in a few days. It has been done twice but not as of late......
 
Any chance of getting it done before the consult so the results are at hand?

Dusty. xxx
 
Possibly..but the consult is Thursday so by the time we gat a sample tot he lab and get results..it may not be ready Thursday anyways
 
Dutch941 said:
Possibly..but the consult is Thursday so by the time we gat a sample tot he lab and get results..it may not be ready Thursday anyways
Click to expand...

Hate that. We actually come out to upstates lab so we can get same day results on most labs.
 
We hate the upstate LAB cause the guy there is like a zombie. Also..our biggest issue is , how should I say, getting a sample. Because first he has to make one when we're available to collect it and drive it to the lab......that test always takes a few extra days!
 
I hope Matt is feeling better soon and it's just a bug of some kind. I know for us, allergies always throw the bloodwork off some. But the second I see symptoms, my radar goes off. No harm in getting the extra bloodwork and FC and keeping an eye out for a trend here. You know him best!
 
Ok so we are in calendar day 4 of this thing..actual day 3 by hour count. His pain is still present but less severe than the first day. Still not eating much for solids except an occasional slice of toast and maybe portion of banana. Drinking water and ginger ale regularly.
He says the pain increases when he pushes on his stomach...all located in the belly button area..nothing up high..nothing to the sides or back. Well see what the GI says when they open at 8am.
Still urgh.
 
Dutch, I'm so sorry that Matt's not well! :( I do hope it's something easily fixed, like a bug... :ghug:

I hope you get some quick answers/guidance from the GI this morning!! Keep up posted!
 
Dutch, It may very well be an illness (what was his white cell blood count), but also sometimes an illness can trigger a flare. (at least in our experience). Our son is so hard to keep on a steady path. I could relate to your comment about waiting 3 mos was too long. Its good you're on top of it. Its easier to get things back in control when you catch it early. I also agree that you know your kid the best...go with your gut. Also CRP is more accurate than SED on what's going on right now. Sounds like your GI is not a 'snap to judgement' doctor. That's also good I think.

When you mentioned your wife is calmer...it takes a lot to get my husband anxious too. The combo is good, probably. My husband always says to me, "It's a marathon not a 50 yard dash". Its true...but sometimes I want to strangle him with his calm words!! JK :)
 
Dutch941 said:
We hate the upstate LAB cause the guy there is like a zombie. Also..our biggest issue is , how should I say, getting a sample. Because first he has to make one when we're available to collect it and drive it to the lab......that test always takes a few extra days!
Click to expand...

HAHA we always have the same problem and he never does it when the lab is open so we have to take it to the emergency room.

Hope he is feeling better soon.
 
Kathy,
I agree it is a good combination to have one calm parent and one anal retentive. Just wish I was the calm one!
White blood cells we're normal but I should add the Bloodwork was about 6 or 7 days before the onset of stomach pain...I just found it odd that I noticed minor disturbing trends in the SED rate, iron, and vit D...was told they are not a concern and a few days later..SMACK. ...suspicious symptoms
 
Dutch941 said:
Kathy,
I agree it is a good combination to have one calm parent and one anal retentive. Just wish I was the calm one!
White blood cells we're normal but I should add the Bloodwork was about 6 or 7 days before the onset of stomach pain...I just found it odd that I noticed minor disturbing trends in the SED rate, iron, and vit D...was told they are not a concern and a few days later..SMACK. ...suspicious symptoms
Click to expand...

Ha! I wish I was the calm one too!! Maybe they just bottle it all inside and we do "BLAHHHH"!

I hope your new labs shed some insight.
I also watch my son like a hawk.(anal rententive as you call it:)) Just this morning he said his stomach hurt around his right side. I felt that nervous twinge and asked all kinds of questions since our last labs showed slight elevation in inflammation...then he farted 3 times or so...and miracle, the pain was gone. Oh this boy. Before crohn's dx I had lots of blond hair...now I have lots of white hair!! We do our labs March 12th...'Please Please be normal'
 
Well, latest update from home is he is Hungry again and stating his pain has mostly subsided......so ....crossing fingers. i could use a full nights sleep...
 
Fingers crossed!! ;) As much as we panic, sometimes it really is just a fluke! :applause:

Recently, Stephen had two nights when he woke us because of pain, vomitting and diarrhea! Plus a third night with discomfort and pain. All within one week! Even before diagnosis, he never had the pain. :eek: Even though I questioned that each episode was preceded by a late heavy/rich meal, by the third episode, I was fairly certain it had to be related to narrowing and not just coincidence... well, lo and behold, since he's stopped with his late night meals, no more episodes! ;)

So, while I think it's always worth following up, sometimes it is just a fluke. :) Hopefully, Matt's just had a bug that is beginning to clear up! :ghug:
 
My daughter doesn't do McDonalds without pain for several days either. Even for fries and a shake!
 
Okay...end of day 4....pain is gone or nearly gone.....Matt is feeling better and says he is ready to return to school...hungry and eating again...although we're not letting him eat just anything. So, knocking on wood, maybe twas a fluke after all...
Thanks everyone for listening to me babble and any and all advice you offered!
 
I know who you're talking about. We were lucky enough to get the same sweet nursing student for months, months so the first time we got him he gave me such a hard time about not bringing orders (the orders were in EPIC) and izz hated him so we left and came back, hoping to find our favorite. We have only had him twice in a year though...everyone else has been wonderful!
Glad to hear he is feeling better...and it DOES suck to be the OCD parent. But at least we know our kiddos are being paid attention to lol!
 
We have had that guy every time...and every time the orders are an issue...he never smiles.....he acts like you're an inconvenience to him so I can't let so done like that put a needle in Matt. Plus weve been there at opening and he came in twice an hour late.
 
Well great news. Matt's discomfort is over ....no return pain and No reason to believe its a flare up! But it gets better....had a lengthy discussion with GI about my concerns with his labs....he explained why a strange number here or there in the grand scheme of things doesn't alarm him as there are so many things that can create systemic responses in a variety of ways. Basically his stance is you monitor the labs but you wouldn't re create the wheel as far as treatment goes just because a number moves one way here Or there as Long as the total story is still that the body is doing well. (It sounded better when he said it). But anyways after our conversation I feel a little better about relaxing my very rigid lab study..this is a great source of stress for me so that is helpful.
BUT it GETS BETTER!
In the initial diagnosis he stated Matt had "SEVERE ulcerative Colitis"...now..after seeing his response for the last year and the lack of flare up despite only being on pentasa for 6 months....he believes his UC might be a "mild case"!!!!! I can't begin to describe how much relief I felt hearing that. Not that I'm taking it as certain butit sure was a positive thing to hear. Yippie!
 
Music to a parent's ears!! What great news to get from the doctor! And so glad to hear he's feeling better!

Now you just go relax too!!! Enjoy a stress-free weekend!! :D
 
Yeah.....I'm certainly not letting my guard down....because I still have some cautious doubts...but it should at least allow us to relax a bit ........
I'm still very aware that upon discovery his colon was a complete hot mess from top to bottom....and when that happened there wasnt that many obvious signs either.....so......I'm extremely glad, but knocking on wood at the same time.
 
:lol: The 'guard' never goes down! Sucks but I've just learned to live with that! :)

But, even if Matt didn't have 'obvious' signs at diagnosis, remember you weren't looking nor were you aware of any signs that were present... Very likely, Matt will ever be in the same situation again... he's old enough to be aware of how he feels, you/your wife are now much more aware of the subtle signs and will get care immediately, you've got a GI monitoring him and that 'guard' will be instantly at full alert at any sign! Being prepared and aware is half the battle! :ghug:

:D
 
That's GREAT news!! Hearing news like that is wonderful! Sounds like you have a good GI. That relieves stress :)
 
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Hi all. Sorry again I have been scarce......my only excuses are that we have been very busy lately and fortunately Matt has been doing very well so I haven't had any questions to ask all you geniuses.
I should be visiting more often to check in on people and help others where I can...so I am guilty of that!
Anyways.....I'll stop back and catch up on everyone's stories after the 13 lacrosse games i have to attend today.....
Hope everyone is enjoying the same relief that we are and for those that aren't..hang in there!
 
Ha! Disappear anytime you want if it means things are going well! Glad to hear the news! Sorry about the lacrosse games. Weater here is hot as h..e..double hockey sticks and we are at an all day track meet today and all day swim meet tomorrow. I feel your pain!
 
Thanks for the fab update Don! :thumleft:

May it keep on keeping on! :):):)

Dusty. xxx
 
Glad he is doing well, we just finished that boat ride :) younger was lacrosse and Jack was baseball, it's so incredibly nice when they are feeling well enough to do all these things.
 

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