New crohns diag13yr old son

[mommytocrohn'steen]

new crohns diag13yr old son

My son has been having abdominal pain and way too many trips to the bathroom since the beginning of this school year. We thought it was partly nerves related to the 8th grade stress of having to test for and pick a high school. After a colonoscopy/endoscopy, the ped GI said most prob crohns, then he did a upper GI with small bowel follow thru. He said all evidence matched the biopsy. He is taking pentasa 1000 mg 2x aday, and entocort 9 mg in am. He is on the meds 12 days, and has NO STOMACH ISSUES. He is still pale, very thin. Will this last?? The meds, will they continue to work this great?

 

[CDDad]

Hello,
That's great news about the drugs working. Let's just hope they continue. It's always impossible to know how long so just enjoy the results now. Entocort is a corticosteroid - safer than prednesone, but probably not meant to be a long term drug.

Good luck to your son!

 

[AZMOM]

Welcome mommytocrohnsteen - We're glad to see you here and even more glad to hear how well your son is doing! There isn't an easy answer to how long any medication works. We are learning that firsthand now.

I'm not sure if you've had a chance to check out the parents' subforum, but it is another good place to check out what is going on with other kids and let us keep track of how you all are doing.

Hugs and welcome!

 

[ameslouise]

Hi Mommy - (let's get your real name so we don't have to keep calling you mommy!)

Sorry to hear about your son but glad the entocort is doing the trick so far. As Joe said, this is not a long term solution as it is a steroid, so he'll need to go on a maintenance drug after he tapers.

Good luck - let us know how he's doing!

- Amy

 

[mommytocrohn'steen]

My name is Kathy, thanks for all of the quick support. I do have a nursing license, but that hasn't helped much. The patients I remember with Crohn's were probably worst cases, I need to be positive, and hope for the best case. Joseph is so happy to be able to eat again, without pain, and being up all night long in the bathroom.

 

[DustyKat]

Hi Kathy and :welcome:

It's so great to hear that Joseph is responding well to the meds, I hope it lasts a very long time! Everyone is different so it may well be the right combo for him and he will stay that way when the Entocort starts to taper off......fingers crossed!

Where is your son's Crohn's located?

I would imagine Joseph's weight is related to his diarrhoea and it resulting in a degree of malabsorption, I guess this will turn around now that he is feeling better again. Do you know what Hb, B12, Folate and Iron Stores blood results are? Keep and eye on them if he has terminal ileum involvement.

I hope things continue to go well. Good luck and welcome aboard!

Take care, :hug:
Dusty

 

[mommytocrohn'steen]

This diagnosis happened rather fast, so I didnt have time to question much. Although it took FOREVER to get the appt, the doc had a cancellation for the NEXT DAY, and did the colonoscopy, and endoscopy. When he came out of the room he gave an order for the upper gi. As soon as those results were back, he called with info and RX order. He is 1 hr away, so we have not seen him for a visit yet. He scheduled one for 2 weeks, which is tomorrow.
He did ask for Joe to take a multi vitamin. In the past they have always made him vomit. I started with 1/2 with dinner, he did fine, and now is taking a whole centrium.
I don't remember much about his labs. Low hemeglobin, slightly high sed rate......... the rest escapes me. I know that when the specialist looked, and talked to my son, he said, we are looking for either crohns or celiac's. I knew it wasn't celiacs, just from the foods that he does tolerate.
This is a wonderful site. I can't talk about this at the house too much, because it gets to him. But having all of this support is huge. He was an infertility baby, it was the same kind of roller coaster ride. I went to a conference with 500 other infertile people, and it made a world of difference.
Thanks!!

 

[DustyKat]

Good luck with the appointment tomorrow!!! Keep us posted on how things go......

:goodluck::goodluck::goodluck:

It's lovely to have you have here hun so I hope you stick around. It's far better riding the roller coaster with others rather than alone isn't it......:wink: :eek2:!

All the best, :hug:
Dusty

 

[Jer's Girl]

Hi Kathy! Sorry you and your son are going through this right now. As others have said, Crohns affects us all differently so it is impossible to tell how it will affect your son. There are many parents of kids with Crohns on our forum, so you are not alone in how you are feeling. Good luck with your son staying in remission (?), and welcome to the forum!

 

[mommytocrohn'steen]

Besides where is it located?
Do I need to have labs run on my 11 yr old daughter?
are there any other questions I should be asking tomorrow?
I am sure he will address diet/meds/labs
Thanks to all you pros!

 

[mommytocrohn'steen]

The appt went like this: HE GAINED 6LBS!! (Pentasa goes up by 500 mg per day.) MD Ordered labs, if he continues to do this well call to discuss decreasing entecort. Next office visit 8 weeks. Avoid nuts & popcorn (he has had issues in the past) ilium involvement. So I guess for right now it is about as good as it gets?!

 

[AZMOM]

Yay!!!!!!!!!!!!!!!!!!!!!!! That is good stuff!!!!!!!!!!

As far as siblings, I would try not to obsess unless there are symptoms (I may have missed that part of the thread!). The one time Hunter had some bleeding was shortly after Claire's diagnosis and I went into a wide-spread panic. All it took was one trip to the pediatrician's office, she got a hemoccult on the stool, a CBC including ESR and CRP. All was normal, she said he had just strained too hard and quite frankly, he hasn't had an issue since then!

All that aside, we Mommas gotta be vigilant. I no longer care if they (the kids' docs) think I'm nuts either. I love when I'm wrong and love when results are negative. But anytime you have a family where that's not the case, I don't think you can be too careful!

Okay, down off my soapbox. :ylol:

Hugs,

 

[mommytocrohn'steen]

Yes, the md said no symptoms, no tests, don't worry. Thanks for your reassuring me!! Moms mean more right now!!

 

[ameslouise]

Sounds like a great report, Kathy! Hope Joseph continues to do well!

- Amy

 

[mommytocrohn'steen]

Thanks!!