When to bother the drs?

[Ands]

Hi! Joseph been doing really well on the Pred (apart from the side effects - eating, bloating etc) and we have now reduced from 40mg to 20mg dropping 5mg every week. He has been symptom free until last night, when he had a really bad upset tummy, he is also really tired, sleeping over 10 hours a night.

He has just started senior school so we have put tiredness down to this and are hoping that last night was a one off. But, if the upsets continue is this likely to be a case of things still not happy and we should consult the Dr's again. I don't want to jump and fuss over every step back but have no idea what steroids can do when slowly coming off them.

Any insight would be appreciated.

Andrea x

 

[upsetmom]

Hi Andrea
When my daughter started reducing the prednisone she had little bit of pain but nothing that lasted too long. I was also like you when my daughter first got diagnosed. I didn't know when i should contact the doctor or not .But now any problem and i ring the nurse and get her advice . So for your own peace of mind contact the doctor .

 

[KWalker]

Personally I would wait a little longer, especially if this just started last night. The problem with Crohns is that we can just have an "off" day for what seems like no reason at all. I know prednisone can cause sleep disturbances as well so it could be now that he's coming off of it, he may not realize it but now his body is trying to make up for that lost sleep.

I'm not on prednisone currently but I know that even without it I sleep on average of 9-10 hours a day because going to school all day (I'm in University) and then coming home and doing homework, housework, etc. it seems to really take the energy out of us.

I would keep an eye on him and just stay updated on stomach aches, bowel movements, etc and then if it seems like a new problem just keeps arising then I would get him checked out.

Best of luck!

 

[Clash]

It could just be an off day but if he is new to his dx and medication you may just want to check in with the GI. Some people start experiencing symptoms when they taper down on their steroids and if that is the case the GI might want to re-up the dose or add another med.

 

[crohnsinct]

I agree with Clash. This is all new to you. At the beginning I bothered our nurse twice a week. That is what they are there for..to a help you care for your child. They are used to it...believe me. I thought I was the biggest pain and she told me I wasn't a tenth as bad as some people. As time goes on you will get the hang of it and call less frequently. I asked for our nurses email and would email my concerns. For some reason I felt like less of a bother that way...easier for her to read an email then answer a phone call while in the middle of something or worry about phone tag. The added plus was I got all my thoghts down without forgetting or stumbling over myself.

And yes, whenever my daughter tapered at the beginning symptoms would creep in so I would call and we just did a slower taper.

Good Luck!

 

[Twiggy930]

Bother them, that is what they are there for!!! And I say this as someone who HATES to be a bother. But that is really what they are there for so if you are worried call them, it will make you feel better.

Hope things sort out quickly for your son.

 

[DustyKat]

Hey Andrea...:hug:

When do I bother the doctors? Any time I feel like it! :lol:

Seriously though, I agree with what has already been said. I fully understand what you are feeling right now. It is so hard when your child is newly diagnosed, not only are you trying to get your head around the diagnosis and what it means but you are also trying to get your emotions sorted and at the same time worry that you are over reacting about every little thing. It sucks!

I am two children and 6 years down track, if I feel at any point I am in two minds about a symptom, a treatment, a side effect, whatever, I call the doc. We have enough on our plate without trying to nut it all out ourselves and if I ever get sassy attitude about ringing I just say...unless you have a child with Crohn's keep your attitude and opinions to yourself.

I realise I am late to this hun, how is your boy doing?

Dusty. xxx

 

[crohnsinct]

And even if they do have a child with Crohns they still can't take that attitude because it isn't the same as they are in a GI office and know what they are talking about and have GI nurses and docs at their disposal....which brings me back to my idea from a few months ago...hiring a ped GI on retainer to be at my beck and call....

 

[my little penguin]

Speed dial. The nurse and I now chat about other stuff I call so much.
The one thing our Gi said was that if we had any questions to just call then the office can decide how and when to answer since without communication things could go bad quickly especially if they assumed things were ok when really they weren't.
In the beginning I was calling once a week with a update.
I havE called at least 4 times this week alone.
But we just started Remicade and he started ulcers, rashes blood blisters need I say more

 

[Farmwife]

My motto is:

They bother us when we're there, so I'll bother them when we're not.:rof:

 

[Ands]

Thanks everyone. I think I'll call tomorrow. He's had bloating and tummy pain on and off this weekend, and we have just dropped the dose again today, as planned, and I am worried that things aren't right. Next appointment not until 2nd week in Oct so I'm not waiting for that!

I'll let you know how goes.

Andrea

 

[Catherine]

I would call too. We had a problem with Sarah's taper and the GI slowed it.