Matts Story

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

M

MattsMum

Joined
Jul 3, 2011
Messages
103
Hi there,
I'm sorry if I'm double posting, but I really am not too sure where Matts story should go. Here or in Your Story?

Briefly, Matt is almost 3 and has Crohns in his Colon and Mouth. He's been in hospital now for almost 2 weeks as they try and get the inflammation in his colon under control. He is currently also having Hydrocortisone Iv's 4 times a day. We hope to be trying Infliximab soon in the hope of preventing his colon from being removed, and with him ending up with an Ileostomy.

Matt's mine and hubbys world. We just want what's best for him, and for him to have a normal childhood. For now though, it just seems impossible. He really is a happy chappy. Never complains nor cries, I think we do enough of that on his behalf.

Hoping to meet some other parents in a simular situation to ours.
Nicola x
 
Hi Nicola, welcome!! I hope you posted in both places so you'll be seen by more members. There are a few members whose children are as young or younger than your Matt. It's hard for me to imagine what you must be going through. My son was dxed at 10 so he was old enough to understand at least. I hope you all get Matt's situation sorted soon so he can grow and have a happy childhood! Good luck and hope to see you around!!
 
Thank you Mark. We have been advised this morning that his CRP has again raised. We are now at 156, up from 89 when he was admitted. I must say, all the medical terminology, the blood tests, the meds etc are all so new to us, that we are sometimes just leaving meeting's to go Google. I'm sure we'll spend a few hours today looking through here and just trying to get a handle on what's going on.
We are so ignorant of this disease, and it's impact on Matts life. We must get educated and start to understand what's going on here.
I hope your son is doing well.
 
There's a lot of very frightening info out there Mum!! I'm sure with Matt's diagnosis being so new, you are already hurting quite a bit so be careful and don't project other's outcomes on Matt:) We have a wiki article that explains blood tests and many very knowledgeable members. I'm afraid I'm not one of them, haha, but stick around. You will see!!!
 
Hi Nicola :)
Dex is right, it's good that you posted twice and more people will see your story.

I'm so sorry for your family and your poor lil guy..just breaks my heart to hear that he is so sick and so young.
I don't know of any other parents on this forum, besides myself, who's child has an ileostomy. I could be mistaken tho. My (baby) just turned 18 in March this year and woke up from her surgery with a surprise ileostomy. So even though she is not a toddler any more, I can completely relate to how you must be feeling. It threw her world in to a total shock and so to comfort her as much as I could, I did absolutely every little thing in the caring for her stoma. (except emptying it), for the first 6 weeks or so. She slowly started helping with it, and she is now in complete control of doing everything on her own. I know you won't have this option if this is what happens with Matt just yet, but I am telling you this so you know you have a kindred spirit here and I will help you the best I can, and answer any questions I can :) I hope he doesn't end up with the surgery, but if he does just know that it is to help him get as healthy as he possibly can, and allow his system to heal much easier. Also, there is a stoma subform here that you may want to browse through. There are some amazing ostomates that will be so friendly and helpful to you, as they were to me.

I sure hope they get your lil guy under control quickly with meds tho!
Hang in there momma...we are all here for you anytime!

big hugs,
~T~
 
Hi Nicola and :welcome:

Oh my, what a very difficult time for you all...:hug:

We understand your fears and uncertainties hun. What we wouldn't give to trade places with our precious children, ay? I hope you can get onto Infliximab soon and it knocks things on the head for your little 'un.

tannersmom has a son that has had an ileostomy. I'm pretty sure he had it at a young age, but not sure how old. I haven't seen tannersmom on here for a while but she may still be popping in. Perhaps you could PM her.

I know this is all new to you and it sure can do your head in! So if you have any questions about anything please don't hesitate to ask and we will do our best to answer. Just remember there is no limit on how many you can ask and there is no such thing as a dumb question! :lol:

Good luck with Matt and keep us posted on how you are all going. Welcome aboard!

Oh yeah...love the name Matt, for obvious reasons! :ybiggrin:

Much love, :Karl:
Dusty. xxxxxxxx
 
You are so right as usual Dusty :) It completely slipped my mind about Tanners mom...I was trying to remember who it was that has given me stoma advice, here in the parents section. Haven't seen her in a while tho.
 
Thanks both for the welcome. I was told that there would be a wealth of information and support here, and she was right!
Tracy, I'm sorry to hear about your 'baby'. 18 or not, they are always our babies! I hope yours is keeping well and that her surgery was a success.
DustyKat, I see you have your hands full with 2 children with this horrid disease. Does it run in families? Matts not following either hubby or I, and as far as we are aware we have no family history of IBD. I'm sure I've read here somewhere that both of your children are in remission. I hope it continues to be that way for a long time to come.

Matts had a 'strange' night. Seems restless and having flushes. This is all new territory again to us. They have taken more blood this morning and another stool sample, so hoping above all that they return in a better state than yesterday. Our 4 year old has started to complain of tummy ache. We're hoping that its just an attention thing, and that she has started to feel a bit neglected this past 2 weeks. It's hard trying to be here, there and everywhere right now. We try and spend as much time as possible playing with her when Matts sleeping, but I'm sure its having an impact on her.

Thank you all again for the warm welcome.
Nic x
 
Welcome Nicola. I hope Matt's numbers improve today. Wow ... a four year old daughter too. Siblings can feel neglected pretty easily. My oldest son had some health issues and was hospitalized twice for 1-2 weeks almost 3 years ago. My husband made sure that one of us was with the other kids almost all the time. If it was up to me, I would have been in the hospital the entire time. It was hard to imagine my healthy kids REALLY needing me as much as my sick son. Danny's illness (was 11 at the time) started during this period and the first few months are just a blur unfortunately. Anyway ... I just wanted to welcome you. What you are going through is so tough emotionally. Early morning crying sessions seem to help.
 
Hi Jeanne. We're trying hard to give Ella as normal a time as possible right now. I spend 5 nights a week here, on the ward and hubby 2 nights. One of us are always at home for bed time. We're also still trying to have family time after school, where all 4 of us sit and play and have dinner together. Its a juggling act, but we're trying to make it work.
Early morning, afternoon and evening crying sessions are all happening right now lol
Thank you for the welcome.

Matts CRP has returned at 167 today, again we're still on the up. He does seem brighter in himself though, and this morning was eager for some breakfast. Didn't take too long to be right through him, and then he went back for more! These kids are as hard as nails!

Nic x
 
It's great to hear that Matt is brighter and hungry! I hope the bloods can soon reflect that hun...:hug:

You are sure right there Nic! Hard as nails and any tougher they'd rust! :lol:

DustyKat, I see you have your hands full with 2 children with this horrid disease. Does it run in families? Matts not following either hubby or I, and as far as we are aware we have no family history of IBD. I'm sure I've read here somewhere that both of your children are in remission. I hope it continues to be that way for a long time to come.
Click to expand...

It must be so hard for you Nic juggling hospital and home life. My children did not develop CD until their teens so time spent away from Matt when Sarah was hospitalised did not impact near as much as what you would be facing...:hug:
It can and does run in families and I have no doubt in our case it is hereditary. The only relative that we know of that has CD in the family is my husbands first cousin...I think both of my children developing it is a little too coincidental for it not to have a genetic link.

Thanks for the well wishes hun. My daughter has been in remission for 5 years on the 10th July, not that I am counting! :lol: Matt is only early days yet but all clinical signs point to him being in remission since his surgery nearly 3 months ago.

Thinking of you, :ghug:
Dusty. xxx
 
Thanks so much for you kind words Dusty.

This morning Matt again seems to be rather active and hungry, its just a pity his blood work isn't quite corresponding to show the same. His CRP is stable in the 150's, but last night we had some blood in his stool. Nothing there this morning, so hoping it was just a blip. Well I seem to live my life in hope these days!
To all you other mums and dads out there going through this right now with your 'babies', my heart goes out to you all, and Wishing you all the very best.
Nic x
 
Hi,
Matts been really unwell now for the past few days. His CRP has raised to 180+ and the bleeding is heavier. Later today he has his first Infliximab infusion.
Praying hard that this will halt the progress of this horrid disease and get my angel into remission.
Living on my nerves, feeling sick at the thought of all of this.
Nic x
 
Oh man Nic...:(

I hope more than anything the Infliximab gives Matt some much needed relief...

:goodluck:

Thinking of you both, :hug:
Dusty. xxxxxxxx
 
:ghug::ghug::ghug:

Hoping the treatment works wonders for him!!

fingers, toes, and everything crossed !

Hang in there...we're all here for you! :)
 
Thank you all so much for the kind words and wishes.
Matts infusion went well yesterday, all the better for them giving him some Calpol and Phenergan in advance and knocking him out.!!
The lil man has woken somewhat sullen this morning. Not interested at all in food and seriously grizzly. Oh well, lets see what this afternoon brings.
On another note, hubbys has phoned to say Ella has again woken with belly ache. Not sure how real this is, or if its an attention thing. Decided that I should be at home with her tonight, and have some girly time on the sofa with dvd's. Hope this does the trick.

Right now, all I want to do is crawl into the bed with Matt and sleep. I am so tired, but seem to spend every waking moment just looking at him, hoping, praying. What I would do right now to simply have me suffer this disease rather than my baby. It's all so unfair...! Can you tell how p'd off I am? lol

Thank you again, Nic xx
 
I don't know anything about Inflix/Remi Nicola. Have the docs given any time frame as to how long before you see results?
 
Ah Nic, unfortunately we know the feeling all too well!

I hope this works for Matt hun. Fingers, toes and everything else crossed else mate!

I'm sorry to hear about Ella. Do you think it might be an idea to keep a diary on her? Might just help you keep a track of her symptoms and give you a better idea if it is something more or in a response Matt's illness. We have a diary in our wiki that may give you some ideas of what to keep an eye on...Diary.

Dusty. xxx
 
I hadn't thought of it Dusty. I'm honestly hoping its an attention thing, but if this does indeed run in families then maybe I should start one. Will try and talk with her about this tonight, just how with a 4 year old is hard.
Beam me up Scotty!
Nic x
 
I hear ya Nic and I hope more than anything it's not either!

I was thinking maybe you could just start one anyway, if talking with Ella doesn't help solve things, and then you will be able to easier track when it happens. If it's only when Matt has something going on then I think you could safely say it is attention seeking. Just pick out what you want, maybe just start with the pain side of things and go from there if need be.

Dusty. xxx
 
I'll get one started tonight Dusty. She didn't see Matt yesterday, didn't want her upset whilst he was having his infusion and we weren't too sure if he'd have a reaction. She'll be in with dad in a bit, so will try and talk with her.
Thank you so much for all your help.
Nic and Matt x
 
Well this evening/tonight I have a fractious 4 year old Ella. Even with undivided attention, loads of hugs etc she's gone to bed complaining of tummy ache. Hers is under her rib cage (?), rather than abdo pain that Matt has. Running a slight temp. Not sure what to make of this.
Please someone just take it all away....
Nic x
 
Oh Nic......:hug:

Deep breaths...have you given Ella some Panadol (not sure what you call it there)? If not, give her something like that, it may settle her pain and temperature.

Start writing everything down now hun.

:hang: Mum, you are doing a fab job!

Much love, :wub:
Dusty. xxxxxxxx
 
Dusty she had a dose of Calpol at 6pm and another at 11. Really thought that I would get some sleep at home tonight before heading back to Matt tomorrow. No such luck!
Nic x
 
Awe Nic, so sorry everything is going wrong at once for you hun!

Does she have any other symptoms besides pain and fever? Maybe it's just a little bug she picked up going in and out of the hospital to visit ?

Try to relax and breath mom !
Hang in there...
xoxoxox
~T~
 
Thanks Tracy, she didn't have anything but for a sore tummy on/off for a few days, then last night running a temp and this morning she's been sick. I'm hoping above anything that it is a tummy bug. She can't go in to see Matt today.
Matts symptoms were so different. He never complained, just woke one morning with blood in his stool quickly followed by mouth ulcers. Ella on the other hand seems to be getting different symptoms daily. I must say they do seem real. Last night we had 'real' tears not the tantrum kind. I think we may well find ourselves at the gp's in the morning.
Nic x
 
Go with your gut Nic, you know Ella better than anyone.

Take her to the GP and have her checked and hopefully it will turn out to be just a bug.

I know it's hard not to over think things and then start second guessing yourself. But I always figure it's best to go and have it checked and be told "she is fine" than to sit on and wonder and find it was something after all. If that turns out to be the case you then waste energy kicking yourself for not doing something sooner.

Any doctor worth a pinch of salt would understand your concerns, fears and worries for Ella when you have the issues you do with Matt.

Much love, :hug:
Dusty. xxxxxxxx
 
Is Ella having any nausea, diarrhea or constipation? Has she any appetite? Sorry, if I missed it somewhere.
 
Nicola, you're an amazing mom! You'll get through it all somehow and both your kids will realize the sacrifices you made for them someday! I'd like to tell you to take a break, but I know you can't. I know your love for them is endless, but your time creates a problem. You're doing the best you can mom!! Take comfort in that!

I believe I saw your hub's name is Dan?? Are either of your parent's nearby or any other close family?
 
I'm sure my Gp thinks I'm neurotic. Ella has been vomiting since yesterday afternoon, still complaining of tummy ache, and still running a temp. Gp checked her over, said she had some bad ulcers going down her throat and gave her antibiotics. Nothing for the tummy ache, just swept it aside as an attention thing! Maybe I am reading too much into this now. But why has she got throat ulcers- would account for her not wanting to eat, but she's not complaining about her throat.

Mark, we've recently moved here, just as Matt was diagnosed. Nearest family are about 2 hours away. I have sent out an SOS this morning. Hoping my in laws will be down tomorrow. Ella is unable to go to school whilst vomiting and for 24 hours after. Dan had this morning off but has had to go back to work this afternoon. It's not ideal, but Ella is now here on the ward with Matt and I.
Can't see this nightmare coming to an end soon.!!
Nic x
 
Ulcers down her throat!...go to another doc and have it checked it out. I would also want to know what the ulcers are and why!

Dusty. xxx
 
I'm tempted to just get Matts IBD nurse to have a look at her when she calls in later.
For now, they're both fast asleep in Matts bed. I'm thinking of going to go and find one for myself somewhere!
Thanks for all your help
Nic x
 
Last edited:
Hi Nic,

OMG, I am so sorry you are having to deal with all this!!! There is nothing more stressful than being worried about your children!

I would definitely have the nurse have a look at Ella - even after asking the nurse, I would ask the doctor to look at her next time he/she is in to see Matt!! You already have Ella at the hospital with you, it certainly can't hurt! They won't refuse to just have a look and if they agree with what you've already been told, it will be a huge relief for you!

YOU WILL GET THROUGH THIS!! I know it's hard but just take a deep breath and try to focus on one issue at a time, hour by hour (or, sometimes, minute by minute when necessary!). When my son was in the hospital, in the midst of being test/diagnosed, my daughter was preparing for her grade 12 prom/grad (altho not 'serious' as my son's issues, nonetheless very important to her!). I felt like I was spinning :ywow: - needing to be with both of them, discuss ultrasound results, alterations for prom dress not going well, prep for colonoscopy, final university acceptance due, nausea/diarrhea (can't even remember if it was his or mine! LOL), prom 'get together' at our house, etc. All in the same week!!! I was leaving the hospital, rushing home to pick her up, going to the dress shop, yelling at the saleswomen bcz they, for some unknown reason(???, stupidity perhaps), were not getting the alterations done (explained that my son was in the hospital and I couldn't keep coming back, the saleswoman said 'we all have problems'!!!:voodoo:), my daughter's in tears bcz her dress won't be ready, OMG!!! Had to take the dress without alterations, find another seamstress who could do it in 1.5 days, my husband's trying to tell me not to stress (how could I not?!!!)... My kids are much older than yours and their understanding of the situation was much greater so that certainly helped! But, I felt like my life was suddenly and completely 'out of control"!! But, I kept telling myself it was temporary and I just had to resolve this 'one issue', get through this 'one day', this one week, etc. I got through truly by just focussing on one issue at a time... As much as we all wish we could sometimes, there is no way to split in two!

Hopefully, more help is on its way and you will have a chance to catch your breath. Just keep remembering that this crazy time will pass. Right now, you're probably feeling that life is 'out of control!', but you WILL get things under control, just stay strong until then!!

Thinking of you!!!...
 
HI there I am new to all of this. My son was diagnosed with mild crohns in 2008. He is on pentasa. I get so worried about him. can anyone tell me what happens next. This this disease is scary.
 
Nicola, my goodness, god speed to the best of health for your little ones and some solace to you!

I am curious to hear more of your story. I'm going to look now to see if you posted more details elsewhere!

@christopher's mom, hello and welcome! Please start a new thread and tell us more about you and your son. Crohns varies widely from patient to patient.
 
Thank you all for taking the time to reply and offer advice and support.

Ella is now at home with dad. We did get see see the IBD nurse today and explained her current symptoms. She said in view of what Matts going through it raises alarm bells and will notify Matts consultant when she sees him, or for us to mention it if we see him first.
On a brighter note- the cavalry are arriving tomorrow. The in laws are descending for a week to help out. Thank the lord for small miracles!

Hope all is well out there
Nic x
 
I am very happy to hear your inlaws are coming in to help. What a relief it will be to have extra help. I agree with Tesscorm regarding focusing attention to small units of time (minutes/hours or day by day). It reminds me of 'baby steps' in the movie "What About Bob?". It is a very useful stress strategy.

I hope Ella has 'just' a virus or something but really glad the IBD nurse looked and will talk to the consultant. Siblings should get extra investigating when they present with similar GI problems.
 
Thank you Jeanne, I will breath easier once Matts Gastro has taken a look at her. Hope he confirms I am just being neurotic!
Nic x
 
Just had some of Matts blood results back (late I know). His CRP is going down!!!
Big smiles...deep breaths!
Nic x
 
Finally some good news for you guys Nic! I hope things continue to improve for both of them! I'm glad you've got help on the way:)
 
Checking in and wondering how Matt is doing today?
and ...is Ella feeling any better ?

Hope all is well and your relatives have come in to save the day! :)

hugs,
~T~
 
Hi Tracy, Matt continues to be going from strength to strength thanks. Certainly seems more comfortable and his bloods are reflecting this. His appetites back with a vengence, and his bowel movements are decreasing daily. His mouth seems to be slower in responding, but it's heading in the right direction.
Ella continues to be poorly. Still complaining of a sore belly, but not mentioning her ulcers or sore throat at all. Matts gastro has said that he will see her, but we need a referal from our GP. Hoping to get that done sometime today.

Mark, the in laws are here. Its a relief and lifts a huge weight. She did manage to get a dig in the other night and reduced me to tears. I'm sure it wasn't meant as I took it, BUT asking what I had done to both their diets since we moved and that living in a building site (renovating our new home) wasn't good for either of them, implied that I had caused both Ella and Matts problems. Dan put her right and since she's been nothing short of supportive.

Hope everyones well out there.
Nic x
 
It's certainly forgivable Nicola. Don't we all ask ourselves the same questions at first? She just needs to get educated!! Glad things are continuing to go well with Matt and continuing to pray that Ella's problems are not serious.
 
I am pleased things are starting to go in the right direction for matt nic and little Ella starts to feel better Jordan keeps asking about matt every day we are sending all our love down to yous from up hear in Newcastle xxx
 
So happy for you that Matt is improving!:ybiggrin: and that his Gastro will be seeing Ella soon (hopefully, she'll be feeling better before she even sees the Gastro!)
 
Hi all, just checking in.
Things are going well here at the hospital. Matt contiues to improve, so much that we hope to be allowed home on Monday!
Ellas still much the same, but is seeing Matts Gastro in 2 weeks time. So hoping for some answers then. Her throat ulcers don't seem to have cleared- would the antibiotics have helped if this is Crohns?
Hope everyones well out there.
Nic xx
 
That's great news about Matt Nicola! Did the antibiotics help at all in your opinion? Is Ella still sick? Two weeks is going to seem a lifetime if she's sick all that time.
 
Hey Nic,

Fab news about Matt! Good luck, I hope all continues to go well and full steam ahead for discharge on Monday!
crossed_fingers.gif
crossed_fingers.gif
crossed_fingers.gif


It depends on the severity of the disease as to whether antibiotics are effective or not. They can be useful in mild to moderate disease but I think this is generally if disease is present further down in the GI tract. Don't quote me on that though! :eek2:

Good luck with the GI's appointment and I hope things are fairly settled in the lead up! Keep us posted!

Much love, :hug:
Dusty. xxxxxxxx
 
Mark, she never complained of a sore throat. She is still occasionaly vomiting and still going on about her tummy. She's having frequent bowel movements now, no blood just loose, and running an ad hoc temp! Took her back to our GP yesterday, who just thinks Im still neurotic.!! Two weeks can't come quickly enough!!
 
Thanks Dusty. Good to have Matt back to something resembling normality. Now just to get Ella sorted.

Hope all the other kiddos out there are doing as well as or better than Matt
Nic x
 
Glad to hear about Matt. Ella's symptoms need to be considered seriously. Two weeks is a long time for a 'normal' illness to be still causing symptoms. I am glad you have your GI appointment. Two weeks is not that bad (sometimes it is months here). Your comments about your GP thinking you are neurotic frustrate me so mcuh. (I have been in that situation before many times, once time the doctor thought my older son was suffering from anxiety rather than the CSF leak that his friend caused!) I want to say find another GP ... but that is only if he is really making too light of Ella's symptoms. If he thinks you are over-reacting or something, I could accept that (but I am sure you are not. We parents know how to put up a good front in front of our kids!) . Or I wonder if perhaps he is just trying to focus on the positive to help calm you meanwhile he is taking this very seriously.
 
Jeanne, Im hoping to that I am just being over cautious!
Its just hard as you know to not worry about everything when it comes to your children. They are so precious and at this age still very demanding and reliant on us.

Matts stools have started to deteriorate again this morning. Back to being watery and frequent. Hoping its just a passing issue and wont prevent us from going home tomorrow.:yfrown:

Nic x
 
Well it would seem we are destined to remain here for a few more days.
Matts CRP has started to rise again, and his frequent loose stools are now showing blood. The lil man is back to being fractious and sleepy, much like when he was admitted. Praying its a blip, hoping more than anything that tomorrow brings better news.:yfrown:
Nic x
 
Nic I'm late weighing in here but just wanted to say hang in there..... I'll be thinking of you and your little ones and hoping for good things for you all.

Just so you know - you are NOT the only one with the barb throwing m-I-l either. We'll make that another thread. ;)

Hugs,

Julie
 
Oh man Nic, that sucks!

Hells bells it was bad with a 17 year old in hospital and being told you can't go home let alone a little 'un! Yikes! I reckon you need one of these...:ghug:

So what are the docs saying/planning?

Much love mate, :Karl:
Dusty. xxxxxxxx
 
Well we have just been told we are to remain here. No discharge today.
Matthews CRP is up again. Just waiting on his gastro now to call and advise as to the plan of action.
For me, I just wish my poor baby didnt have this damn disease. Why couldn't I have been the one to have it? He's been through so much more in his 3 years than I have ever been through. It's grossly unfair!!!!:voodoo:
Nic xx
 
Well Matts gastro has been. Matts CRP is up to 187 today. His next Infliximab infusion is due Friday but we are hoping to have it brough forward to Weds. He responded really well to the 1st infusion, so praying this will do the same.
Must say though, it is worrying that 10 days after Infliximab it all seems to be going haywire. I hope this isn't the pattern we will follow this time round.

My in laws are due to leave tomorrow. Im greatful for what they've done, but she cant help herself but give the occasional dig! Will be removing the knives from my back for weeks to come!
Ella still hasnt returned to school, so for the next few days, she will be spending her days here with us.
This has to end soon!!
Nic xx:(
 
Hey Nic,

So sorry to hear about Matt's setback. I'm really hoping he responds well to his second infusion!!

So sorry to hear about the 'knives' as well... it's hard enough to deal with all of our worries when our children are sick, no one needs extra 'digs'. And I very much doubt you deserve them, you sound like a great mom who's doing everything possible (and beyond)! Deep down, I'm sure you KNOW this - remember it and just ignore the rest!

Will be thinking of all of you!
 
Hi, Nic! I hope things will turn around soon for all of you.I wouldn't wish this disease on my worst enemy.It is the disease from hell. But my son (11 now and on Remicade) is living proof that you can get better and live a normal life. Stay strong and keep fighting! My mother blamed me a lot in the beginning. "It's because you gave him those colored popsicles or yoghurt that was super purple". That is the last thing us Crohn's parents need to hear.I'll be here along with these other concerned parents waiting for some good news.
 
Thank you both, your support is appreciated.
Today we had a long chat with Matts gastro about the merits of further Infliximab over a resection. Tomorrow he'll have an MRI and if its still showing considerable inflammtion then as much as I dont want to do it, maybe surgery will be the best option. Once the diseased area has been removed, maybe we can start to build him up again.
Ella, also continues to be going downhill. Returned to our gp this morning. Advised him I may be protective and anxious given Matts current condition BUT I am certainly not neurotic. I know her, and I know she is not well. He took some blood and we should have the results in the morning.
The in laws have returned home, so for now we're back to shifts here at the hospital. Ella has only this week in school before the Summer hols. She wont be attending. This 6 week holiday is destined to be the longest ever...

(Just hoping Andrea's well enough soon so that I can go sit with her and have an adult conversation)

Hope everyone out there is keeping well.
Nic xx
 
Is this only his second Infl. injection? Do you or the docs think it should have had an effect on the inflammation this quickly? I don't know much about it, just curious. I'm sure it's a tough decision especially for one so young. You're doing everything possible mom!! Hang in there!
 
aww sorry to hear that, this must be so hard for you at such a young age.. best wishes go out to you and your family. good luck.
 
Thank you Vness.

Mark, I think they're main concern is that he did improve after his first infusion but went downhill quickly again. 2nd one's due Friday and the 3rd one a month later. Should we have the same reaction this time, then we've compromised his immune system even more before surgery.
I hate to say it, but maybe removing the diseased section will be for the best. Will know more after his MRI later. Just hoping it wont lead to an Ileostomy.

Just waiting on Gp's to open to get Ellas results. The angels sat here with us doodling away. She seems quite comfortable right now. Hope its a good sign!!
Nic xx
 
Ellas CRP has come back at 78 (not sure if this is high?). The receptionist told us the gp didnt want to see her as she has a Gastro apt on Aug 3rd. Hope we can hang on until then.

I really have had enough now. I hate this darn disease, and we've only known it for 7 months !!
An emotional but not neurotic Nic x
 
Well, we've only known it for 1.5 years but EJ's never had to be in hospital even one night!! You have every right to be sick of it Nic!!

You can check her blood values in the forum wiki. Dr. Dusty...who else!
 
Thank you Mark. Just one of those days I think. Will feel better once the MRI has been done.
Off to check out Wiki....
Nic x
 
Hey Nic,

Oh man, you sure have your hands full at present...:(

Good luck with Matt's MRI hun. I hope all goes well, I will be thinking about you!

I guess you have been onto the wiki so you know that the CRP is a high reading.

Oh boy, so know the way you are feeling mate. Sending loads of hugs and healing thoughts your way......:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Hi Nic -
Good luck with your tough decisions. Did the receptionist give you the CRP number? (Usually only doctors or nurses can give you any results so they can tell you right then if it is high or low.) Now that Ella supposedly has a high CRP, waiting the 2 weeks for the GI while you are right in the hospital with Ella is sooooo frustrating. Can you ask a nurse or the GI if you could take Ella through emergency so she can be admitted into the same room as Matt and tested?
 
Hey Nic,

Just thinking about you all :)
Hoping that the MRI was done successfully and uneventfully. It's probably hard on the little guy to lay still that long. Do they sedate him before hand ?

Hang in there...I know it's hard !
big hugs !
~T~
 
Thanks all. We are meeting with our Gastro and Colorectal surgeon later. No decision has been made yet. 2nd infusion due tomorrow.

Tracy- they gave him some Phenergan and Calpol. Slept through it all!
Nic x
 
Hi all. We came to the decision to try a 2nd dose of Infliximab. I feel relieved to know that they won't be chopping up my baby, but do realsie that should this not work, then surgery is our only option.
Matt will have his infusion later this afternoon.
Ella continues to be spending all day everyday here with us, but goes home with dad at night. She seems to be holding her own, and is not complaining of so much tummy ache. So maybe things are heading in the right direction for her- hope so anyway.

Hope everyones well out there in the real world- think I've become institutionalised now. 4 weeks here is 4 too long !! lol
Nic x
 
I hope this goes well for Matt. Sounds like you are in a very good hospital with a good plan. 4 weeks is looooong! I am glad Ella may be feeling a bit better and she is accepting her routine (as she gets to be with you all day :)
 
Hi, Nic! I hope things are going ok at the hospital. I'm glad the docs are giving Remi another go. I hope it will work. It sounds like your doctors know what they're doing. I really feel for your little guy having to go through all this.
 
Oh Nic, everything, and I mean everything is crossed for Matt! I so hope all went well with the infusion.

Sending MEGA loads of love and healing thoughts to Matt, Ella and Mum! :ghug:

Thinking of you guys, :Karl:
Dusty. xxxxxxxx
 
Thanks all for the well wishes.
Matt had his second infusion on Friday afternoon, by the evening he was almost covered head to toe in a rash. No more Infliximab for him. Surgery now is our option. Second guessing if we should have just gone this route rather than taking another infusion? The lil guy just seems so sorry for himself. His rash is improving and his temperature coming down, but for a few hours- well they were the scariest ever. I never want to go through that again, made worse that Ella was here when he started to deteriorate. Thankfully a nurse took her away to play for a while.
Now its just a mater of deciding when to operate.
Sorry I havent updated before now. Mind really has been elsewhere.
Hope all is good out in the real world.
Nic xx
 
Ugh, sorry Nic!! Did they use benadryl? I hope he's still improving. I know, no one wants to think about surgery on a 3 yr old but it will give him his childhood back!

How is Ella doing now?
 
Hi Mark. They used Phenergan another antihistamine. He had no problems during the infusion, they started not long after it finished. His breathing was eratic, sweating, and alarms just went crazy. Ella became distressed and all hell broke out.
Ella sees the Gastro this week. Having her bloods done tomorrow to check on her CRP again. She seems much the same, no better or no worse, thankfully.

Dan's taken a weeks leave now to help out. I never thought I would say I'm so tired of this place, the worry and bloody Crohns. Sorry:voodoo:
Nic x
 
:hug: Poor you, what a horrible scare. Must have been so frightening for you all. So sorry about the reaction to the infusion. I think I would have gone for it too to try to avoid surgery for the wee one.
Hope he's feeling a bit better now. Hang on in there.
 
So sorry to hear this Nic, but I agree with Mark, it will give him his childhood back and you your family back!
Hang in there, it's going to be ok! :)

xoxoxox
~T~
 
Too scarey. Glad the reaction is better now. (I wonder why Remicade is still used if it causes more allergic reactions than Humira?) I pray this surgery will be the last hurdle for you and Matt (for a very long time at least) Hang in there!!!!
 
I'm so sorry to hear all this horrible stuff. My other son had a bad case of hives a while back,also head to toe,from what,we don't know,so I know that can be scary.And Max had a seizure 2 years ago where we thougt we were going to lose him,so I know what you are going through. I can tell you are are a great mom.You"ll see,things will work out. We're thinking about you all.Cecilia
 
Oh Nic...(((HUGS)))

How awful for Matt, Ella and yourself. I hear you about the second guessing but I would have tried the less invasive route too if given the choice. If I didn't I would be left wondering after surgery what if I tried Remicade! Argh, damned if you, damned if you don't! Sending Matt mega loads of (((hugs))) and (((healing thoughts))).

I hope all goes well with Ella's appointment...good luck hun. :goodluck:

:hang: Mum! You are doing a fab job!

Thinking of you and your little 'uns, :ghug:
Dusty. xxxxxxxx
 
Ni Nic, I'm so sorry to hear Matt's infusion did not go well. But, don't go second guessing yourself! As you did, without a doubt I would have tried the less invasive Infliximab once more before moving deciding on surgery.

For what's it's worth, my son did the enteral therapy and responded quite well, however, his symptoms were different from Matt's. But certainly can't hurt to ask Matt's doctor...???

Hoping that Matt begins to feel a bit better, as well as Ella!!

I'll be thinking of you!
 

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