Matts Story

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Nic,
This may also be dumb advise, but how much prednisone is Ella on? My son is 11 and has trouble dealing with 30 mg. After he had his allergic reaction to Remicade and just before his Humira induction they wanted him on prednisone while we waited. She prescribed 40 mg, I told her what he was like on 30 so she decided to start him on 25mg. Maybe she's on too high a dose? My son would wake up during the night too and be hungry and want to talk. It ended up getting myself into a pattern of not being able to sleep past 3am even after he was sleeping again. Took awhile to break that cycle for me and I wasn't on anything!! Like Mark said tho, our kids are at the age we can reason with them, my heart goes out to you. You're kids are so young.
 
Awe Nic.. I'm so sorry hun!

As far as missing the hospital goes...I was the exact same way when Gab came home after her surgery...and she's 18 years old! I was so scared, I couldn't sleep, every little move she made I cringed that something was wrong. I hid in my room and the bathroom and cried and cried and cried...for days on end. I was just so sure I was going to screw it all up and hurt her even worse..I knew she was going to end up with a massive staph infection in her wound; I would rip the flange off and cause sores; I would hurt her some how, some way. I just knew it!
But you know what....I didn't, and she was fine.
It took a lot of trial and error, and a river of tears, on both of our parts, but we got there. I did "hurt" her now and then learning to change the appliance, cleaning the stoma site, etc. I took care of it 100% (except for emptying) for a little over the first 2 months. She wanted to punch me out a few times because it did hurt at first. It is tender until it heals more, and when your doing it for them, you can't feel what they are...It takes time.
Do you have any home health care nurses available to you?
We were assigned 2 nurses to come out a few times a week for the first 2 months afterwards to help with the learning process, ordering supplies, etc.
Is this an option for you?
Also, I think Dusty's idea of overhaul bibs for a while is great. And you can also search online for Pediatric Covers for the bag as well...there are a lot that come in fun patterns for the kiddos too.

It's probably the last thing on your mind right now...but have you tried the "Ostomy Bear" idea yet ? It really may help to teach him to be involved in his own care, and maybe if he can take care of the bears appliance then you can convince him to leave his alone. Maybe put some candy pieces in the bag as fake poo even so he can realistically empty it as well??

My favorite saying in life, and it's much easier said than done, is "Don't sweat the small stuff". His retreating back to wetting himself, in this particular case, is really the "small stuff" here. Put him back in a diaper and leave that be for now until you can find time to deal with it later..when things are more settled. :)

And last...have you tried splitting up Ella's dose of prednisone ?? Do you give it to her at night ? Maybe just during the day is an option as well?
I know that stuff is horrendous on the little ones!

Go ahead and allow yourself to grieve, and be angry for a bit. Just don't let those feelings take you over ! Use it to your advantage to find a system that works for you and your family!

Hang in there sweetie! We're all here for you!!
Take full advantage of your parents while they're still with you...don't feel bad...they can rest in a few days when they go home! :)

lots of luv and hugs !!
~T~
 
Ok - first of all - IT WILL GET BETTER. I'm sure it seems like total hell right now though! Love your heart..........

I can't give ostomy advice :-( so I'll leave that to the experts. But, prednisone......that I know something about.

*First, are you giving it in the morning? If not, DO!
*Second, when do you start to taper?
*Third, we've done a couple of strategies to combat the "always hungry" thing. We had a "Claire shelf" where I put lots of low calorie snacks (and a few with plenty o' calories - lol) on a shelf where I would just let Claire choose what she wanted. Repeat that for the fridge (small containers of yogurt, applesauce, mandarin oranges, grapes), even half a shelf with a post-it with her name. The other thing that worked well is that when Claire would eat a meal (this was the first time around at a younger age), as soon as she would finish we would set the time for snack time. Depending on just how damn manic things were, sometimes I would only set it for 90 minutes. Sometimes 2 hours. So, when she would ask to eat, I'd say "Check the timer......" and that way she would know. Okay fourth, smoothies are a great filler. Claire's fav is one banana + about 1/2 C skim milk + crushed ice. She thinks she's had a major treat, it's good for the belly and the calories are good. Might be one of the snack choices?????

Fourth of all, prednisone is NOT forever and there will be weight gain regardless. And, yes, it goes away. So just do the best you can and girl........cut yourself some slack!!!! You need one less thing to worry about.

I hope some of this helps. I promise I get it. Claire is hell on wheels with prednisone and the younger they are, the harder it is.

Please keep us posted......big hug!

J.
 
Thank you all so much for just listening...really does help to just be able to come here, rant away and have people understand!!

@ Dusty. Yes, we're out later to Mothercare to try and get as many all in ones as possible. Hoping this will prevent the lil man from constantly tugging at his bag. He is making his skin raw, but it deosn't seem to bother him at all! As for the toilet training, he needs to be trained to start nursery in Sept, and time is creeping up on us quickly now. He starts in 3 weeks. Giving him some grace this week, then next week I'll be following him around with a bucket!! Wish we didn't have to push this, but its just not an option.

@ Brian's Mom and Julie- Ellas currently taking 35mg of pred and we're giving it as early as possible and all in one dose. We're reducing by 5 mg per week to 20mg and then she's seeing the gastro to re-evaluate. Great suggestion about a food shelf, really hadn't thought of it, but I'm sure it would work in this instance. She took up and apple and a banana to bed last night. I don't know where she's putting it, but she sure can pack it by in that little belly of hers.

@Tracy. Thanks for the suggestion of the bear. We tried something simular in hospital. To say he wasn't interested would be an understatement. We are open to trying again though, anything to help him out. I hear you with regards the tears, when they start they are impossible to stop. I'm always fearful of hurting him, doing something wrong...
We have a great stoma nurse who's visiting daily. She has given us loads of confidence, and it lasts as long as she's here, but seem's to leave with her too!

Well both rugrats are running around like fools. If the weather stays good we're off to the park later then Dans taking Ella swimming tonight. We will find this girls 'drop off point' and exploit it to the full!! So glad the pred doesn't seem to be having this effect on Matt, I'm sure he's just running around because she is! Tomorrow his stiches come out, and we have a follow up with the Gastro. All signs right now are pointing to him looking/being well. Maybe there is a glimmer of light after all.

Thank you all so so much.
Hope everyones having a good day out there
Nic xx
 
You sound more hopeful this morning Nic! Still the problems with Matt's stoma and potty training are disturbing I know. I hope he learns to leave the stoma alone before he causes any serious skin issues. If there is any problem that seems to plague the ostomates on here, it's the skin under the flange. Will Matt have to be able to empty the bag at the nursery??
 
In theory Mark yes. We're hoping to just put him in for 3-4 hours a day to begin. We should just be able to go that long without the need to empty, but we have been told it should slow down as time goes on. Nursery won't deal with any of this, they'll clean him up should the bag burst, but nothing beyond that.
His skin looks rather well right now (I am surprised), long may that continue!!
 
Hey Nic,

So great to hear from you Nic! I have been thinking about you all and hoping more than anything that things are settling...:ghug:

It's a shame that under the circumstances the nursery school can't be a little more flexible.

Ahhh...but it is oh so good to hear that Ella and Matt are running around and enjoying life! May it last a very, very, very long time hun. Fingers, toes and everything crossed!

:mademyday:!!!!!!!!

Dusty. xxxxxxxx
 
Hi Nic,

Just a couple of ideas that may help with Matt with his toilet training... but, it's been a long time since I had a 3 and 4 year old, so Matt and Ella may still be a little young for this...

Idea is simple enough, I'm sure all parents have used some variation at some point... When my children were much younger, I made up a 'Reward' poster. :medal1: At the top of the poster, together with my kids, we pasted/drew pictures of things they liked (ice cream, a tree representing a trip to the park, pool/swimming, a book, etc.) and I put 'values' for each reward. Beneath this section of rewards, I drew a grid. Each time a 'reward' was earned (i.e. they behaved while out somewhere 'boring' or ate a new veggie, etc.), they got to put a sticker in one of their boxes. They could eventually 'buy' one of the rewards. The build-up of stickers seemed to help 'excite' them to get a reward! And, as my son was a picky eater, sometimes I would give him a sticker for EACH bite of a new veggie so that he could earn a reward quickly and encourage him to do it again! :luigi: For Matt, perhaps a sticker for each use of the toilet??? (I just don't remember if 3 years old is quite old enough to understand the concept of adding/saving for a reward).


An even simpler one was the 'Treasure Chest' I had for my kids... I filled a box with small treats/rewards (pencils, erasers, little toys, etc.) and when they earned a reward, they were allowed to pick one item from the Treasure Chest. This tactic didn't work as well and sort of backfired on me :eek: - they eventually got bored with the 'small' rewards I'd chosen :boring: and started making demands as to what I should be filling the chest with! Started to 'negotiate' that if I wanted them to do something, I'd have to fill the box with 'better' rewards! LOL At this point, I 'buried' the Treasure Chest permanently! :arghmatey_ani:


I hope today is going a bit better for you and everyone at home!
 
Thanks all, for the well wishes and thoughts.

Matts outpatients apt went rather well today. His surgeon and Gastro both seem please with his current state and his progress this far. His CRP is still high at 109 but it's coming down so we are heading in the right direction. For now, they want to continue on 30mg of pred until he's more stable. The only concern they have (same as Matts neurotic mum) is his unease with his bag, and the need to be constantly pulling at it. The skin is becoming sore, but doesn't seem to be bothering him too much. Finding it so much easier to remove the bag at night and bath him- its the ONLY time he doesn't play with his Ileo.
Been thinking of this since we came home, but is it possible for the bag to be causing an itch thats getting to him? Could he possibly be alergic to the material? Not enough to cause major discomfort, but enough to be driving him mad?

Ellas still being, well a little madame. I shouldn't complain, I would rather her play up then watch her laying on the sofa poorly as she was weeks ago. Just hoping that they WILL reduce her pred when she sees them in 2 weeks time. For now, she seems rather well too. Just hope her bloods reflect this.

Was a huge relief being able to walk in AND out of that hospital today, with Matthew. Was relieved when they said he was well enough to be at home.
Slowly we are adapting to our new 'normal'. Its as much a learning curve for us as it is the children, but we will get there.

Hope your all well out there
Nic xx
 
I can't remember if you ever said, but can he get a j-pouch? I know there is still the crohn's risk, but then he wouldn't have the bag. Is he using a two piece bag? would a 1 piece be less irritating?
 
Yes! Absolutely that is probably the reason he is pulling at it so much!
Yikes! I'm sorry that didn't even cross my mind to tell you ... You can call the major companies like Hollister, Coloplast, Convatec and ask them to send you samples...those three all make pediatric supplies I know. I'm not quite sure how it works there, but I'm sure if you post or just look around in the Stoma Subforum they will be able to help you and and direct you to exactly who you can call. :)
I'll bet that's it and if you get the right one that's not irritating him it helps!
Best of luck! :)
 
Oh Nic, it's so fab to hear that the kids are picking up. At last ay!

You certainly are sounding better and that is music to my ears. I know it's still new and that learning curve can be pretty bloody steep at times but you are doing an amazing job Mum, kudos to you!

Onwards and Upwards! :heart:
Dusty. xxxxxxxx
 
Hello all!
I'm sorry for not having checked in for the past week, we've been back in hospital (still here), and to be honest it's just all got too much now, and I feel so down.
Matt's continued to have problems with his Ileo- not just the constant pulling at it, but it's been so active that he became severly dehydrated, and then developed an infection, and it all escalated from there.

Just HATING that both my babies are suffering right now- what I would give to take it all away or at least have Dan or I take their place.
Hope everyone else is doing well.
Nic xx
 
Oh Nic, I was hoping you were off because there was nothing to tell:(. I'm so sorry that isn't the case! I hope they get it sorted soon!!
 
Oh Nic I am so sorry for this. Praying for Matt. Is Ella still doing better? Thinking of you whole family here. It does SUCK!
 
Am very sorry to hear that you're back at the hospital! Hope Matt's beginning to recover and you can get back home quickly!
 
Oh hell Nic, I am gutted to hear that Matt is back in hospital...:(

I hope they can get things sorted quick smart hun and you are both back home ASAP.

Thinking of you mate and sending loads of love and hugs...:hug::hug::hug:
Dusty. xxxxxxxx
 
I can't believe all this trouble you guys have to go through.When is it going to end already?I wish I could do something to help you. I keep pushing my son to become a doctor so he can figure this Crohn's "thing" out and find a cure already.I hope everything gets better soon. You guys deserve it.
 
We are home again!
This time around, thing's do seem much easier. Matt did have a problem with the adhesive on his flange, we spent a few days trying various different ones, and seem to have found one that isn't causing any irritation at all, and better still, he's no longer playing with it! Makes life so much easier. His infections way better, still there but not to the extent of 2 weeks ago. In all he seems to be doing really well.

Ellas now on her pred taper. Can't come off them quickly enough for my liking. I really don't think they're having much of an effect on her condition. Is it unusual to not respond to Pred? We saw her Gastro last week, and he's not too convinced either that its been of much help. I understand that it will take some time for her 6mp to kick in, just hope that when it does she too will be feeling much better. Still getting the occasional vomiting, sore belly, really bad mouth ulcers, but early days still with her right now. Trying to remain optimistic- am I the only one that finds that hard to do all the time?lol
Hope all the kiddos are well out there.
Much love, Nic xx
 
Oh man Nic, this is just the sort of update I love! :panda::panda::panda:

I am so happy to hear that things are settling for Matt, YAY! What a relief for you both...:hug:

I hope things keep settling for Ella hun, everything crossed! I don't know how unusual it is not to respond to Pred, but I don't think it much for my Matt. I imagine it did help to keep things settled but it wasn't a wonder drug for him that I could see, he suffered none of the side effects either so perhaps that skewed my perception as well.

Trying to remain optimistic- am I the only one that finds that hard to do all the time?lol
Click to expand...

Hell no!!! :lol: I reckon we are all sailing in that boat together and commiserating along the way, just like this...:ghug:

Loads of love, :heart:
Dusty. xxxxxxxx
 
Hey Nic, I'm glad things are improving for Matt:) Did the doc consider upping Ella's pred dosage? I hope they get her straightened out before things go any further! Don't let them discount the severity of her bro's Crohns!!
 
We started on 40mg of pred, could we have gone higher?
The thought of anything higher and her behaviour I'm sure would finish Dan and I off!! lol
Nic x
 
I certainly wouldn't know Nic:). But if it isn't helping and with her bro's history!! Just keep thoughts of Ella fresh on their minds if you catch my drift:)
 
Nic,
I've just read through all of this from the beginning! WOW! Sounds like you guys are really having a time of it!
Where abouts in the UK do you live? I'm from Manchester (though i was treated in Alderhey) and we have a group that meets up for activities and such. It's called diversions family support network. You'll find us on facebook and google. But it's basically for young children and their families who have a bladder or bowel diversion. We also have stoma reps who come round with their supplies and products which is always insightful. There are a few kids with crohns also :)
I've had crohns since i was 11. I can quite honestly admit i drove mum and dad to dispare. When I ended up having emergency surgery and an ileostomy at 15 I thought mum would have a nervous breakdown!
Things do get easier I promise.
Feel free to add me on facebook (Jenny Shimmin) i'm more than happy to chat on the phone also :)
chin up! There are people thinking about you!
 
Great news about Matt. (Tracy you are so smart!!!!)
I think 40 sounds pretty high enough for a 4 year old. Prednisone actually made Danny worse (Danny is not diagnosed though!) - by day 3, every symptom he ever had with this came back as bad as ever with diarrhea >14 times daily. As he tapered off the pred, he went back to baseline symptoms. I never came across anybody with this reaction. I heard stories of it not helping, but not worsening things (other than normal pred side effects). Has your doctor mentioned Humira? It is a biologic like Remicade but has fewer allergic reactions.
Re: optimistic ..... just take one day at a time!
 
Nic,
Prednisone did not help my son. His SED and CRP numbers continued to climb while taking high doses of it. All the while also taking Azathioprine and Pentasa too. At some point they have to start tapering the prednisone...and then things got even worse. That's why we went the biologic med route. There was no where else to go for us. He was soooo sick and he then caught every illness that came our way. (Flu, strep throat, etc). With the help of our school,I home schooled while we started Remicade (Which started to help him but then he had allergic reaction to the mouse part in it) and then Humira at the end of Jan. After that, everything started turning upwards and onward to healthy days. I initially fought the biologic stuff...our doctor wanted to do it in July...because I was scared of all the scary 'side effects' printed, but our GI dr pointed out to me; "Why aren't you scared of the side effects of steroids? They have permanent side effects, especially when given to young children." She had a point I thought.
 
Well it's been a while since I was last here!
We are at last hovering with our heads above water level. Matt continues to go from strength to strength, and is back to being the bolshy little toddler he was months ago. Life with his Ileo is getting better daily, and for now, he continues to be leaving it well alone. I hope, and everything crossed here, but he may well be heading into remission. Things are plodding along nicely at nursery too.

Ella continues to be the devils child, but she too is back at school full time and burning off her pred energy there! Her Cd seems to be improving, although not as quickly as Matt. Complaints of tummy pain is decreasing weekly.

Both little ones are due check ups next week, but for now, we are doing better than I could have thought possible all those weeks ago.

Hope all of you and your kiddos are doing well out there.
Thank you so much for the support offered to me. It won't be forgotten.
Nic, Ella and Matt xxxxx
 
Hey Nic,

It's so fab to hear from you!!! I have been wondering how are you getting on and it's great to hear that your dear little ones are going so well. What a relief! phew!

I hope they both continue to go from strength to strength. Good luck with the check ups and keep us posted, I will be waiting! :goodluck:

Much love, :heart:
Dusty. xxxxxxxx
 
Nic, I hope the fear that sent you searching for answers becomes a distant memory, but please drop in from time to time to let us know how things are going. It's good to read the relief in your post:)!! May it long continue!!
 
Hey Nic- so pleased to hear thing's have taken a turn for the better. It's been ages since I've heard you sound so positive!!
Glad Matts settled into nursery, and it must be a huge relief having Ella back at school full time..:ylol:
I have an o/p apt on Weds morning with Neil, so may well bump into you all then.
Loads a love xx
 
Hey Nic,

We haven't heard from you for a while. I hope, wish and pray that means all is well.

Thinking of you, :ghug:
Dusty. xxxxxxxx
 

Similar threads

M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
D
What's the story with Flagyl
Replies
2
Views
1K
Pangolin
Pangolin
L
Bummer news today.
Replies
2
Views
1K
Letitbe
L
Papantoine
Punching Crohn’s in the balls!
Replies
7
Views
658
RickS
R
Papantoine
Neglect?
Replies
0
Views
236
Papantoine
Papantoine

Latest posts

Back
Top