Symptoms are back!!

[Dearie]

Vomiting has reared its ugly head again and now I dont know what to do My son has been doing so well but out of nowhere he literally just woke up out of the bed and vomited all over my bedroom floor and I washed him up put him back in bed and he said he feels better now, no stomach pain (which he never had anyway) and of course it's 1:00 am and a saturday morning and we already have tickets to fly out for vacation next week and I'm panicking now because should I cancel vacation? Was it just something he ate or has the flare up begun? Does he need to start a different treatment coarse? Did the Pentasa stop working already? What should we try next!? Can I even get in touch with his GI today since it's a Saturday, I've never tried? I just don't know what to do!!!!

FYI: My son's brief history~(His first symptoms began with just sporadic vomiting off and on for a couple a weeks and weight loss then after his scope and diagnosis of CD in March 2012 he was started on Pentasa and a short coarse of antibiotic and Ensure 3X day and this is his first time vomiting since diagnosis. He also takes fish oil, iron, & probiotic, & calcium) Oh and he was taking Prilosec but the prescrption for that ended last week...

 

[izzi'smom]

u can always get ahold of the doc on call if it is an emergency. If he is throwing up blood or if youthink he is dehydrated I would call or take him to the er. We were on Prevacid to reduce stomach acid which helped curb vomiting...maybe he needs to be on the Prilosec for longer?? I think Pentasa is formulated to be released in the large intestine-it probably was the prilosec that was treating his vomiting. I would call the docs office/answering service in the am to see if you can get a refill.

 

[Dearie]

Thanks Izzi'smom! After thinking about things a little last night I agree that maybe he needs to be back on the Prilosec but I'm wondering how long can he stay on Prilosec because I remember his GI saying she was just gonna prescribe it temporarily since she saw gastritis when he had his endoscopy but I think maybe he needs to just stay on it for now at least?...Anyway I will try to get it reordered today...Hopefully I'm able to do so...

And he only vomited once and I didn't notice any blood...

 

[DustyKat]

Hi Dearie,

Good luck with the reorder hun!

I agree that it sounds like he still needs to be on it. There is always the chance that the vomit may have random but in view of your upcoming vacation I don't see the harm in recommencing it. It could be that he still has some gastritis present or that it is helping to counter a side effect of the Pentasa??

Dusty. xxx

 

[my little penguin]

Ds has a similar pattern with vomiting. WE know he is starting to flare again when the vomiting starts. He has been on prevacid daily for over a year. Pentasa did not stop his at all. IT was just part of his vomiting pattern. Steady for a few weeks then nothing then again. For us Pred. helped and if things get bad zofran ( he has gotten to the point of knowing before hand).
He had vomiting before his last scope then started pred/Methotrexate. WE will be off pred soon. So we wil find out if the methotrexate is working.

 

[Dearie]

Thanks Dusty , I agree that he may have some gastritis still present. Never considered the vomiting to be a side effect of the Pentasa, but something to keep in mind !!

Waiting for the on call Dr to call me back now....

And thanks MLP, hoping the Methotrexate works wonders for you!!

Have a great day everyone....

 

[DustyKat]

Have you heard anything Dearie?

Dusty. xxx

 

[Dearie]

We are back from a wonderful and much needed vacation!

Sorry for the late reply Dusty. Yes, his doctor reordered the Prilosec and he has not vomited again since!

....But our GI is now concerned and strongly suggesting that we start an 8 week coarse of Entercort and also start Aza because he still occasionally has small amounts of blood in his stool and he still has a small fissure (which he has had of and on for about 4 years).
His labs are okay, CRP 1, and ESR 10, other labs are normal, and now I'm waiting to collect a sample for a fecal calprotectin. She says she doesn't think Pentasa alone is enough and she said he needs something stronger because he should not have any blood in his stool.

I mentioned trying EN first but she feels that he needs a more long term treatment, like Aza.

I just don't know what to do because he doesn't have any other symptoms (no pain and only 1 - 2 formed stools a day) so it's hard for me to wrap my head around starting what seems to be such aggressive treatment right now. I definitely don't want to undertreat him but at the same time I would rather start with the least aggressive approach.

Anyway, thanks to all for reading as I rant.....

 

[Tesscorm]

Glad you enjoyed your holiday!

I think it is easier to come to terms with the medication when you can actually 'see' that your child needs relief from symptoms (not that I think it's ever 'easy' to accept ); but maybe a bit tougher when they seem well and all the symptoms are 'inside' which you can't see. (Or maybe it's just that the denial is so much easier.)

Just fyi, my son is only on EN right now, looks and feels fine but tests are indicating inflammation and his ped GI was considering methotrexate (hard to accept when he's looking good!). I did ask about 5-asa meds (ie Pentasa) but the ped GI does not believe it is a strong enough med to maintain remission very often. We are in the midst of transferring to an adult GI and, once we are under his care, I will be asking him as well if it isn't worth, at least, 'trying' a 5-asa med together with EN??? I will also be asking about LDN (again, with or without EN).

Tough, heartwrenching decisions as being undertreated certainly has its own risks... :ymad:

 

[Dearie]

Thanks Tess. It certainly is easier to ignore the unseen and harder to accept what's not evident

It would be so lovely if the Pentasa were all we need! Even the EN seems difficult for a 9 year old boy with a huge appetite I am going to inquire about LDN also.

I hope you and your new GI can come up with the best combination of treatment for your son!

 

[Sascot]

Sorry to hear you are having to move onto the stronger meds. I am like you - my son has very few symptoms which makes it very hard to justify the meds in my poor head! All my son has is one fistula/abcess on his bottom - absolutely fine other than that. Good luck with the Aza if/when you have to go down that path!

 

[DustyKat]

I am so happy to hear you had a fab vacation! YAY!

Don't ya just hate reality! :voodoo::voodoo::voodoo:

Even though my kids went down a different path initially I so know the feeling of giving these meds when all appears okay. Both of my kids are in remission and take Imuran and I hate the thought of it! But I am just as scared of what might happen if they don't...talk about torn! Ugh!

I think the only way I have been able to get my head around and maintain some sense of sanity is to look at it this way...this is from an old post of mine...

I think most would agree that Crohn's is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Sarah's surgery put her straight into remission and she has stayed there but I view Crohn's as a disease that is lurking and waiting to strike when the time is right so if I can regulate that response to some extent then that's what I will do. I see Imuran as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.

Another point I think worth mentioning is while ever Sarah has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.

Good luck hun. My heart goes out to you...:hug:

Dusty. xxx