Pins and needles

[Dutch941]

Any other parents have ridiculous anxiety over their kids being ill??
I realize everyone dislikes it...but I can't seem to stop being overwhelmed by it...I watch my son for every little signal of discomfort.....a frown.....slumping body......and I suffer mini paranoia every time i suspect he may be feeling off.......then...if he does feel ill I'm an absolute nervous wreck.
Here is my scenario tonight.....he is off his 6 mp due to liver enzyme issues...we are waiting for next labs to see if his enzymes return to normal.....however, he is no longer on the medicine that we think was keeping his colitis in check...so the risk of issues returning is elevated.....
He has not felt ill for awhile...then tonight he has a very minor belly ache. Kids get belly aches right?? But just the mere mention of stomach pain and I feel so nervous that I feel like passing out. Is it time for me to get on Xanax?!?
Anyone else experience this?

 

[Clash]

I'm right there with you, Dutch! I log everything the more I log the harder it seems to be to differentiate between IBD symptom and an everyday viral, growing pain, pulled muscle from activity or anything else I at one time didn't think twice about.

My thing now is that other shoe, we're waiting to see if the new combo is working, I find my self willing away the time because if it isn't working I want to go ahead and know.

I am sending "regular kid tummy ache" vibes your way!

 

[my little penguin]

Btdt - we had to lower 6-mp for a week due to liver issues as well.
I did the same thing looking at everything the first day or so. I can say after a week I no longer needed to look because it became very apparent how much the 6-mp was really doing.
Hope things clear up quickly and you can get a good med going.

 

[Dutch941]

MLP......yeah.....we lowered...and lowered again the 6 mp.....it was working very well except for the liver issue .....so stopping it is scary ...we are now on only pentasa so we are crossing our fingers that pentasa alone may keep him in remission.....I'm worried about jumping to the next big drug....remicade has been discussed. Was your 6 mp failure based on liver labs?.....how has the remicade affected you guys?

 

[my little penguin]

With 6-mp we had to add allopurinol due to elevated ast and alt.
But we still could not get to a level where he had no symptoms since every time we raised the 6-mp his liver levels would go up. On top of that his scope showed inflammation still present in his TI plus had spread to his rectum while on 6-mp so obviously not working ... All of his blood / imaging studies had been normal.
We switched to Mtx after that which made things go from bad to worse.
Joint pain increased / fatigue/ vomiting and he developed vasculitis ( EIM) in his feet/ legs.

He has been on remicade since Aug 21. Three infusions so far.
We were scared but he is doing so well now I almost forget he has crohn's ( not quite but much better than 8 weeks ago.

It did take until the third infusion for everything to fit together but so worth it.

Side effects may seem scarier but honestly 6-mp and Mtx both have scary ones.
As does most other drugs - I stopped reading the pamphlet on his asthma meds at age 2 it was starting to freak me out.
We look at it this way. To live you need a gut and lungs that work so we take the best meds that work that they have at the time and hope for better ones in the future .
My DH took way too many asthma drugs as a child that are now banned but ..,
It let him function until the drugs got better.

Hope they come up with a plan

 

[Tesscorm]

Yep, I think we're all there with you. :hug: I distinctly remember, months after Stephen was diagnosed and doing well, coming home and he'd fallen asleep after school. My mind and heart went into overdrive... I remembered the fatigue before diagnosis and the panic just built. At the same time, I knew I was going a bit over-the-top but I just couldn't help it. (And, he was fine... just tired! :yfaint

I think until our kids were diagnosed, I, maybe lots of us??, lived in that 'it can't happen to me' bubble... once the diagnosis came, all of a sudden, it can and DID happen to me, now it's 'it might happen again?!?! Hearing that diagnosis was so heartbreaking and painful, I think we live in fear that we will have to face heartbreak like that again, that 'other shoe'! :ymad:

But, I think as time goes on, and you get through some tummy aches, colds, etc. you won't panic quite so quickly or so severely (Stephen, earlier on, would have periods of random symptoms, that were probably just 'a bug' and he recovered just like anyone else...:redface! Sadly, I don't think the worry or fear of that other shoe dropping will ever completely go away but it truly does get easier.

I hope it is just a tummy ache and he's feeling better SOON!!! :ghug:

 

[Dutch941]

Thanks....we are dealing with UC only so I'm hoping pentasa alone keeps doing the trick.....glad the remicade has things going better for you.....

 

[my little penguin]

What Tess said...
Case in point DS woke up last Sunday with a stomach ache, sore throat and fever ,
I immediate thought crohn's related blocked out the throat part.
Spoke to the on call Gi for bit and realized-- duh it's probably strep throat ..,
Which it was .. You know sometimes they are normal Kids too..

 

[upsetmom]

It's so easy to assume everything is related to IBD.. My doctor told me you have to treat her like a normal child...easier said than done...:frown:

 

[Jenn]

Yep, all the time! I'm a worrier and constantly have to keep myself in check. I worry over my non-IBD son too (he's been fatigued lately and some stomach pain, which I think is stress, but IS it only that?!?!). Sometimes though, it's valid worrying. Especially as symptoms last. A chat with the nurse usually calms my fears better than anything else.

 

[Sascot]

Yes, me too. I am also a worrier, so any little thing probably blows out of proportion in my head!! Every time Andrew gets any little thing wrong I worry it's the Crohns - especially since he isn't on any medication.

 

[Dutch941]

Update....belly ache didn't last....he felt better soon after..today..no issues.
My problem is that I more than worry..I start to feel so worried I feel like passing out.....time for Valium perhaps

 

[my little penguin]

Then you need to talk to someone.
I have "watched" my child almost die in front of me from eating a food.
So I "get" the worrying thing.
You need to talk to someone about it.
I make lists of all the things I can control about the disease .
What I am doing to help my child
What the doctors are doing.
Etc...

 

[Dutch941]

I am talking to someone..you guys! Control does seem to be the issue....I despise that I can't just step in and control it. Damn disease.

 

[Tesscorm]

I despise that I can't just step in and control it. Damn disease.

I so understand that sentiment!!! :ymad: I sometimes feel obsessed (and overwhelmed) in trying to understand everything! Not sure what I'm trying to find (a cure, perhaps! :lol but I think the knowledge and the 'understanding' of what the doctors are saying gives me a small sense of control.

To be honest, I sometimes wonder if my obsessing to learn all I can actually makes any difference (ie, despite all I've learned, Stephen may still end up on remicade within weeks anyway! ) But, I generally shake off that feeling fairly quickly and let the control freak shine through!

Talking to others here has absolutely, without a doubt helped me accept that Stephen may need remicade and, while I can't control this outcome, I do feel more in control of the decision and will feel more in control as it is occurring (ie necessity, side effects, etc.).

There was nothing worse than being told he had Crohns after months of symptoms, watching him get sicker with no solutions, then having no real idea of what the diagnosis would mean and blindly following whatever the doctors told us to do (not that I think they were wrong but THAT whole scenario was 'not having control').

Okay, that was a very rambling way of saying that we all understand one another's fears/worries and all we learn does give us some control - we're not blindly handing the reins to the doctors, we can take on some control and contribute to the decisions.

 

[DustyKat]

Me? Worry? Never! Oh and pigs fly too! :yfaint:

Worry, what ifs, the black dog and an extraordinary imagination are my life! Now if I could just channel that extraordinary imagination into penmanship I could be raking it in like JK Rowling. :ybiggrin:

Seriously though Dutch I hear you load and clear. :hug: Both of my kids are solidly in remission but I still have the daily fears and worries that creep in and heaven forbid, at the first mention of stomach pain, tiredness, I'm not hungry, I don't feel well...I go into overdrive big time! I tell myself not to overreact but I may as well tell myself to stop breathing for all the good it does. I just said in another thread that I spend most of my time like a tightly wound spring ready to jump at the first sign of trouble!

I think coming to the forum and writing it down in words to fab people that understand is a great help as is recognising what you are feeling. I know many a time I have been a heart beat away from making an appointment with the doctor and discussing the need for medication to help me through. I haven't needed it yet but should I feel the time has come I won't hesitate. :hug:

I have also found the hardest time for me personally is when my children are well. Sounds strange I know but when they have been ill my energies and thoughts are so focused that there is little time for reflection. It is only when the dust settles and life returns to some semblance of normality that the thoughts and fears of how fleeting the good times may actually be come to the fore and the agony of never wanting them to end rears its ugly head.

As time marches on Dutch it does get better and not so all consuming, yikes! doesn't sound it from what I have just written! :lol:, but it does. It will never completely go away simply because you are loving and compassionate Dad and your children are your life. That being the case it can't be any other way, you will always feel their pain and happiness far more acutely than you do your own and that is how it should be, it is the sign of a great parent. :hug:

Dusty. xxx

 

[Farmwife]

Well no one can say it as good as Dusty!

All I can say is look at that tattoo!
That's right stare at it until you remember you got that thing because your son is a fighter and will continue to fight this. You will no dought probably have more tattoos by that end of your life because of the hero your son will turn out to be.
So my simple farmwife suggestion is LOOK AT THE TATTOO!!!

 

[AZMOM]

I get it. I'm a champion worrier. If worrying was an Olympic sport, we'd all have a hell of a competition for who goes on the team.

Glad things sound a bit better.

J.

 

[afidz]

So, I don't have kids, I can't imagine what it feels like to watch your son suffer. The best advice I can give you (and take it with a grain o salt) is to just relax. Let him know that there is an open line of communication, and hope that he will tell you when he is feeling ill and you can take it from there. I know with my parents, when I first got diagnosed, when they got stressed I got stressed and that just makes matters worse. Again, I don't have kids, I don't know what you are going through and if I were in a similar position, I probably wouldn't take my own advice . Im just trying to give you perspective from the outside in.