VERY New to all this...

[jlacey]

I posted in the 'Your Story' Board and was directed to this Parents board....I usually am on top of things but this Crohn's diagnosis a few weeks ago came out of left field and I am still just trying to adapt to all it encompasses for my 6 yr old and our family.

Sydney, was diagnosed with Crohn's just a few short weeks ago. (November 2011)
Up until August...she was an assumed healthy, active child with no bowel or GI problems....as for growth was always in 97 percentile for height/weight since birth.
After ruling out Celiac, Lactose Intolerance, Upper GI problems, etc the doctor did a colonoscopy and confirmed it was moderate Crohn's.
She started prednisone 2 weeks ago.....
25mg Prednisone for 4 weeks then lower dosage each week by 5mg after that.
Taking acid reflux meds to counteract that prednisione side effect.
And 2 weeks into taking the prednisone she has now just started taking the Crohn's maintenance med - Salazopyrin 400mg

The Pediatric Gastro Specialist didn't restrict any food or fluid type or say to switch to a specific food plan.
A few days into taking the prednisone her bowel movements were getting a lot better and no belly pain but last few days there have been a few bouts of diarrhea like trips to the bathroom....followed by day or 2 now of no bowel movements.
I am not certain if that is normal, as a resulting side effect of the meds or not at this point...??
Main side effects seem to be insatiable appetite and lil chipmunk cheeks...plus a swollen hard belly.
Her belly is very distended and hurting in the middle of abdomen today (suspect gas buildup)...is this usually a result of all the meds in her system...and the lack of real bowel movements?
Jacqueline

 

[Tesscorm]

Hi Jacqueline,

I'm sorry to hear about Sydney's diagnosis. It's certainly hard to come to terms with your child's diagnosis and how it will effect her and your family! I'm sure you will find lots of support and help on this forum; there are many knowledgeable members, parents or not - they have been an invaluable help to me! :ghug:

My son, Stephen (17), was diagnosed in May. His treatment has been enteral nutrition so I don't have any experience with prednisone to help with your questions. But, no doubt, someone will reply to you soon.:smile:

Good Luck! :rosette1:

 

[DustyKat]

Hi Jacqueline and :welcome:

I'm so sorry to hear about Sydney, what a difficult and heartbreaking time for you all...:hug:...and it certainly is a scary and confusing time when first diagnosed.

The treatment that the paediatric GI has implemented is sound. The Pred taper is right and starting the Salazopyrin now so it will take over when the Pred finishes is right. So that is good start and hopefully it will be the right combination. That is the hard thing with medication, so much waiting and watching.

The insatiable appetite and chipmunk cheeks would have to be the two most common side effects of steroids and they will go when the pred ceases. The hard and distended abdomen isn't though and is normally an indication of the bowel is not working properly, as in the fact that Sydney is going a couple days with no bowel movement.

What were her bowel patterns before starting Pred?
If she had diarrhoea and the steroids started to slow that and then she progressed to constipation then that is too large a change in her bowel habits for my liking.
If on the other hand she tended to constipation and the steroids eased that and now she is heading back that way then that isn't desirable either.
What I am getting at is, either way, in my mind, you have grounds to contact the specialist and voice your concerns about her bowel habits.

We have diary in our wiki that you might like to at. It can be a good idea to write things down, it can be so easy to overlook things when you are dealing with this day and day out plus it is far easier to track trends when it is written down...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck Mum and keep us posted on how you and Sydney are going!

Dusty. xxx

 

[Dexky]

Welcome Jacqueline! So often, I am just Dusty's ^^^ cheerleader! She makes it easy to admire her I'm sorry for Sydney but you've found a great source of advice and commiseration here. I hope the docs get her treatments sorted quickly so she can get back to her childhood!!

 

[Crohn's Mom]

Hi Jacqueline !

I've got to agree with Dex on this one! Dusty covered it very well, as usual!

I just want to wish you the best of luck. Hope you stick around here, and let us know how Sydney is doing

big hugs,
hang in there...we're all here for you!
~T~

 

[kimmidwife]

Hi Jaqueline and welcome,
I have to agree with the other experts here that a swollen and hard abdomen is something that always needs to be checked out. I would definitely call your doctor and get an appointment ASAP> Keep us Posted and let us know how Sydney is doing.

 

[AZMOM]

I'm big on checking with your doc. BUT I will say that during Claire's hospitalization at diagnosis and for some time afterwards, she had a distended belly. Her doc at the time said it was the severity of the Crohns. Which, of course, is right in line with what Dusty is saying about the bowel not working properly.

I would stay in touch with the office. Keep track of things. I hope things level out for you quickly!!!

Anything we can do to help, don't hesitate to ask.

Hugs,

Julie

 

[jlacey]

Thank you!

Her belly seems to be less distended and she has had some 'normal' bowel movements over the last few days.
She never had a bowel problem of diarrhea or constipation until August...which makes this all the harder to fathom....since late August she had been having diarrhea a few times a day until her diagnosis in the middle of November.
Once starting the prednisone, started having semi-solid bowel movements only after about 2 days into the meds, but there have been days when she has none and I guess that's when her belly gets hard/distended....this past weekend it was still somewhat distended but softer...so hopefully all is good.

She has a Specialist appt on the 19th and blood work then as well to check the inflammation....so I will be asking questions then.
Anything you feel I should be checking with her...please feel free to drop me a line.
Thanks soooo much to all of you....makes me feel a lot less overwhelmed knowing there are people out there going thru similiar things.
Jacqueline

 

[DustyKat]

Good luck with the appointment on the 19th!...:goodluck:

I so hope things stay settled until then.

Dusty. xxx