AMY Update

[kathymum]

HI all ,
just to let you know that Amy ended back in hospital last week but are now at home - consultant says that she has never got into remisson but has constant low grade active crohns ? he has kept her on azathioprine 75mg althogh he says that it can take up to 6 months for it to work and has also put her on sachets of salofalk 1000mg X 2and budenfalk 3mg times a day ( i think this is a mild steriod ) she has lost weight abt 5 pounds intotal and has a low grade temperture . Feel so depressed this is going to be a long haul - just glad it is the summer holidays at least she is not missing school. I am trying to get her to eat small amount s of low residue food her appetite is poor any suggestions ? She i sgoing to toilet about three times a day and has blood . I feel that we are just back to square one - praying away that she can get better looks like the family holiday may not happen I think the worse bit of this disease is that lack of control we have a s parents I would have given anything this morning to take pain of her as she rolled around the bed .Anyway i think of you all and pray for all your little ones and for you all to keep going best wishes and any advice would be great
many thanks
kathy

 

[crohnsinct]

Poor pumpkin. I hope the azathioprine begins to work a little each day and that she soon feels a bit better.

I can't remember but have you ever gone down the Enteral Nutrition route? If not it may be worth a try for both her nutritional needs and to help her feel better while waiting for the aza to do its thing.

 

[Tesscorm]

Oh, I'm so sorry to hear she's not well. It is so hard to not be able to take their pain from them.

I hope the meds will begin to help her feel better! :ghug: And, yes, please ask about EN if she hasn't already tried it - as Crohnsinct said, at the very least, it will provide her nutrition.

:ghug:

 

[jmckinley]

So sorry that she isn't feeling well. I agree with the others about EN. Even if you don't do exclusive EN, you can supplement her calories with something like Boost or Ensure (I don't know what brands you have). It will give her extra calories and vitamins in a form she can absorb.

It is so very hard to watch them suffer with Crohn's! As parents, we want to "fix" everything for them and with this, we just can't. Even though you can't make it go away, she knows you are there and hurting for her. It amazes me that after a stay at the hospital, Ryan will come home and thank us just for being there to help him through it all.

We are in the same place as you right now with active Crohn's since November and getting a little stir crazy looking at the walls of the house! :runaway:

Hang in there! :ghug: I hope she's feeling better soon.

 

[kathymum]

Hi all , she did seven weeks of EN until end of may she is still taking two modulesn a day but really hates it consultant thinks it is unfair to ask her to do another 7 weeks so soon
i am giving her plenty to drink and calpol ( paracetomal) but she really is misreable
thanks to you all x kathy

 

[kathymum]

Hi ALL , Amy is doing okay she is eating a little better and no vomiting over the last 4 days its her birthday today and she is in good form although a little tired - went to the zoo yeaterday and she walked miles !
She is on budesodinide 9mg every day and mesalazine 1 g x2 plus the azathioprine 75mg and ferrous sulphate . her appetite isnt great i am trying to give her food little and often but wish she would sit down to a sunday roast !! I was thinking what about probioatics drinks have been looking up info but should probably consult her doctor before i launch into something i would love her to put on another few pounds she llooks so pale and thin
anyway thanks for asking after her i often think about you Dusty to have two children with this awful disease you are really quite remarkable to be so positive
love to you and yours
kathy

going to see conusltant again on thursday.
Thanks you all for your kindness it is great to know im not alone

 

[DustyKat]

Thanks for the update Kathy.

It is good to hear she doing a little better but I so understand your desire to see more than than a little and hearty appetite! Bless her and you! :hug:

Good luck with the appointment on Thursday. :goodluck:

Dusty. xxx

 

[crohnsinct]

HAPPY BIRTHDAY AMY! :bdayparty:

I hope she gotto eat a little cake!

 

[Amy (worrywart)]

Hey Kathy ",)
I'm glad to hear Amy is feeling a little better , god the poor little fairy seems like she went through the wars ;-( I know how it feels as a mammy how hard it is to watch them being sick and felling powerless as to how and help ,
Anyway I just wanted to send u and your little girl best wishes and a belated big happy birthday ,,
Ps there's also a crohns support group Irish Facebook page set up that offers great support , without them and the group here I'd be lost xxxx
Huge hugs Amy

 

[polly13]

Hey Kathy - hope she feels better soon. I see from your profile that you are in Ireland too - there are so few of us with young kids that forums like this are life saving. It is so stressfull when they are sick, it is like one step forward two steps back. It took almost a year to get lucy into remission but I live in hope that now she is there she will stay there. Good luck with your appointment on Thursday.
Polly

 

[kathymum]

Hi All ,
Amy is doing good again bloods have slightly improved over last weeks she is now on steriods as well as aza and although her weight is a little under she is doing good. Think that she has more energy ( could be steriods ?) but eating ok she has become really quite picky ( think she is afraid that something will make her sick trying to feed her every 1/2 hours . she has stopped eating bread and toast ??
we are going on holiday next wed and im so nervous am getting her letters translated into french just in case.
we have still to get bloods done every 2 weeks after holiday so that is positive .
wish we could get a cure. might get amy some body /counselling when we come back sometimes she is so sad and scared about it all i keep reassuring her that you cant die from crohns but she still feels over whelmed by it all
think of you all often and your little ones love to you all
PS sorry if i am ranting thanks again for all your support
x

 

[Sascot]

Hi, hope Amy continues to get a little better every day! I can understand your worry over the holiday and it's a really good idea taking all her info with! Hope you have a lovely time - maybe the break away and having some fun will help Amy with some of her stress about all this.

 

[NMMom]

I'm so sorry that you and Amy have been dealing with this flare. My heart hurts for all the kids that have to grow up knowing this pain. It just isn't fair. However, in my heart I really believe that kids with IBD will grow up to be so strong and have a sensitivity to others they may not of had.

I'll keep you both in my thoughts that vacation goes well! It's impossible to forget our kids are sick, even on the good days, but I hope you get some of the rest and joy you deserve.

 

[kimmidwife]

Just wanted to wish you guys a smooth vacation! Hopefully she will feel good and there will be no problems!

 

[Farmwife]

I hope all goes well on your time away.

Farmwife

 

[Tesscorm]

Lots of wishes that Amy continues to improve! And that ALL goes well on your vacation!

Just a suggestion (something I plan on doing when we go on vacation)... take a few nutritional shakes with you. This way, if she's not feeling well for a day or two, she can just drink the shakes, get a bit of bowel rest but still get some nutrition.

 

[kathymum]

Yes i certainly will
many thanks for good advice -she is going to get bloods done tomorrow so fingers crossed that they have improved another bit
many thanks for the support !

 

[DustyKat]

I hope all went well with the bloods Kathy, good luck with the results!

Sending loads and loads and loads of luck and well wishes for a wonderful and well holiday!

Dusty. xxx