Bad flare don't know what else to do for him

[Kaitlyn]

My younger son Ryan has been flareing and he missed all of school last week and it looks like he may be missing tomorrow too. He is in pain and he just is miserable I really don't know what I else I can do for him his doctor already gave him a prescription for anti nausea meds that seemed to help a little. I really don't want to take him to the ER but if I have to I will. If anyone has any tips or advice on what else I can to help him. He is really upset he is missing school and football so..

 

[my little penguin]

Is the Gi treating the flare ?
Maybe give him a call an update Monday to see if the plan has changed.

 

[Kaitlyn]

MLP his GI is away for this week and last week so I talked to a nurse so hopefully when he gets back he can figure something out

 

[Patricia56]

IF he had a remicade recently he may need to switch biologics. If he is due shortly for one then he may need it more often and/or a higher dose.

In the meantime I would go to a totally liquid diet - if he's in enough pain then he may be willing to do it - boost or ensure.

to make it less icky, serve it very, very cold in a covered cup with a straw. Have him stick to one flavor and sip some every so often. Don't try to get him to do a lot all at once. He should stick to one flavor for at least 3 days before he gives upon it as he will get used to the taste if he's persistent.

Be sure he gets enough water, especially if he is having diarrhea.

Keep track of his symptoms: # BM's, D or C, blood in stool, pain 1 - 10, activity level - can he do normal activities or not, etc.

If he is suddenly in severe pain, unable to stand or straighten up then he should go to ER ASAP. If he collapses that is a 911 call of course. Same with vomiting red blood.

I am so sorry that he has gotten worse. Hopefully the GI can find something that will help quickly. Probably prednisone I'm sorry to say but maybe an immediate Remicade treatment will do the trick.

 

[Brian'sMom]

Kaitlyn, The exact same thing is happening to my son...and the same week!! He also is stressed about missing all last week...and possibly tomorrow. We're having trouble with the vomiting. Is your son doing this too? If so, what are you doing for that?
I'm feeling for you in a huge way!! Hang in there. We also are sitting on the edge of our seats...do we go to ER... Patricia, you had some good advice on this

 

[Kaitlyn]

Brain'sMom sorry about your son hope he gets better. Ryan was vomiting a lot and Friday I finally called his GI office and one of the doctors called in a prescription for I believe zofran that has surprisingly helped him a little so I would suggest call his GI other than that he sucks on mints

 

[Brian'sMom]

Kaitlyn, How is your college son? You have your hands full! Hugs Hugs!!

I second the liquids. keep him hydrated

 

[Kaitlyn]

Brian'sMom he says he is still feeling sick but he is better at least he is able to go to class now I'm just go crazy between the both of them.
Thank you

 

[Mehita]

Doesn't the GI have someone who backs him up when he's gone? Or is the nurse going to get in touch with him?

I don't know how you do it, Kaitlyn. Hang in there!

 

[Kaitlyn]

Mehita the nurse was trying to get in touch with him.
Thank you guys he is actually doing worse today I'm thinking about taking him to the ER he just seems to be getting sicker ...

 

[Brian'sMom]

What are his symptoms? I'm just curious cause I never know 'when that time to go to the ER is'. The prednisone is maybe helping my son. I know what its like to have a doctor out of pocket...its scary. However ours was around last week....just doing NOTHING! This week she's actually gone, again! You and I both seem like we need new doctors. I'm currently working on it. Its hard to change within same office. That's our only choice it seems.
I feel for you Kaitlyn. I wish I could help you

 

[Patricia56]

This is a good thing to put on your list to discuss at your next doctor's visit as each doc is different on some points.

At our house reasons to go to ER include:

• Diarrhea >10x in 3 hours
• Inability to retain fluids due to vomiting and diarrhea to the point there is significant dehydration (dark pee, dry skin, unstable gait, sunken eyes)
• Unable to straighten up or walk much due to severe gut pain may merit 911 depending on severity; if pain passes on the way to ER then no ER unless other symptoms
• Temp > or = to 103 F if immune suppressed; ER if continues more than a few hours in CD child who is not immune suppressed (ask your doctor for guidance on this)
• Gut pain so severe unable to speak or move merits 911
• Vomiting red blood merits 911
• BM includes blood clots the size of grapes or larger merits 911; lots of smaller clots may warrant trip to ER - call on call doctor

Hope that helps.

 

[Kaitlyn]

We are off t the ER .... Again. At this point he is just dehyrdrated he ended vomiting all day and he is just miserable. I feel so bad for him he really wants to be in school and playing football.
Thank you all so much
Brian'sMom I hope your son is feeling better soon also good luck with your doctor sistiuation. I have been trying to find one but there isn't a lot were I we live so we would have to travel far.

 

[Brian'sMom]

We're all thinking of you Kaitlyn. At least at the hospital you'll have some peace knowing he's where they can really watch him and he won't get worse. There's got to be peace in that. Keep us posted.

 

[Kaitlyn]

He is home today my husband said they got home about noon from the hospital ( I was at work I left in the morning) they gave him some fluids and some anti nueasea medicine also did a MRI to make sure of no blockage and some bloodwork. He is still in pain and miserable but at least he isn't throwing or going to bathroom anymore. he didn't sleep much last night so he has been sleeping all afternoon. Still wont eat much but hopefully he will want some soup or something when he wakes up.
Thank you all so much

 

[Mehita]

Now what? The MRI was clear? Any word from the GI yet? Glad you're home!

 

[Kaitlyn]

Mehita well MRI was clear and his GI is supposed to be back friday so hopefully he will figure out something the nurse said she left him a message to call me so

 

[lblair]

Hope he feels better soon!

 

[Sascot]

Sorry to hear he has been suffering so much. Hope he feels better soon and the GI comes up with something to help.

 

[Brian'sMom]

I might have missed this somewhere, but I see he's on Remicade. When is his next infusion

 

[Kaitlyn]

Brain'sMom he just had one on the 3rd f September so his is not due for one for awhile he gets them every 8 weeks.

 

[my little penguin]

So your GI has no one covering at ALL while he is gone?
There are no other docs in the practice?

DS needed remicade every six weeks to stAy flare free .
Every eight weeks is just the max recommended time not a one size fits all sorta thing.

 

[Maya142]

My daughter also needs them at every 5 or 6 weeks. Perhaps you can discuss increasing the dose or decreasing the interval?

 

[CarolinAlaska]

How are things going now? Any improvement?

 

[Kaitlyn]

He is doing better today going to try and go to school tomorrow he hasn't thrown or went to the bathroom since his trip to the ER so hopefully he is going to be doing better right now he is just tired and in some pain but that is a huge improvement from the beging of the week thank you all so much
Oh and his GI got back to me today Ryan has a appointment for Tuesday so hopefully he can help him I think we may have to move up his remicade infusions

 

[DustyKat]

Good luck for Tuesday Kaitlyn! I hope your GI has solid answers answers and lasting relief for Ryan, bless him. :ghug:

Dusty. xxx

 

[pops14]

Hi have come in late on this thread but this may help , my sister has had crohns for years and finds that the only way to stop pain and calm down flair is to go on liquids she uses suppliment drinks in uk fortisip works well seems to calm her down enough to let drugs work. Rough i know for your boy but if it makes him feel better worth a go.
Katie