8 Y/O daughter newly diagnosed with CD

[kathymum]

Hi All ,
My daughter Amy aged eight has been diagnosed 3 weeks ago with crohns after a nightmare scenario between hospitals she is doing well and has started taking imuran 75 g per day she is still on the eight modulen a day i am really worried about the drug and have noticed her hair is already starting to thin.
She has been wonderful to date but over the last few days has cried alot at night she says she wants her own life back ( dont we all ) just dont know what to do to support her ,she would love to meet another litlle girl like her. My husband and i are trying to keep things normal but it really is hard as she is the youngest of four and at times I feel overwhelmed with pain for her. I am trying to be really upbeat but she is a bright girl and beacuse all doctors speak to her direct she knows everything and has even quizzed me on the side effects of her new drugs . I have never been a on a forum before but feel so isolated I would welcome any advice that you can give you all seem nice people many thanks in advance
kathy

 

[Tesscorm]

Hi Kathy,

(Just moved my response from the other thread - bet Dusty moved you to your own thread! )

I'm so sorry that your Amy has been diagnosed with Crohns and that your family now has to deal with this It is overwhelming and scary at the beginning but I'm glad you found this forum. It does get easier, once Amy is feeling better and doing well on her treatment, some of the worry does alleviate. There are many wonderful parents on this forum with children close in age to Amy; I'm sure you will find much support and information here.

Is Amy being treated at a children's hospital? Perhaps they can put you in touch with other children her age who also have crohns??? I know my son's hospital (and, specifically, the IBD clinic) regularly has events for their patients. Perhaps the local Crohn's and Colitis Foundation?? - they may also organize events.

I don't have any advice re the medication as my son's only treatment has been enteral nutrition (same as your modulen).

Feel free to ask any questions - there will always be someone to help

I hope she is feeling better on the Modulen and aza??? Sending best wishes!

 

[izzi'smom]

I am so sorry to hear about Amy...it is a tough road and many decisions to make but I am glad you have found your way here!

We, also, were looking to meet a "friend"-her docs office was no help but we made a possible connection at the hospital while inpatient this week

Best wishes to you and (((HUGS)))...I know it can be tough!

 

[Jenn]

Welcome Kathy! So sorry to hear about your daughter. it REALLY sucks. It takes lots and lots of time to become the new normal, but you will all adjust. And there are still lots of ups and downs. Keep in mind that disease is part of your daughter's life, but doesn't define her. Glad you found the board to help. Not sure what you have there, we have CCFA in the states, look for an organization that can help you find support and camps. There's tons to get educated on for treatment, etc. Be patient and best of luck in finding something that works well for a long haul!

 

[kathymum]

Thanks for the reply I supose it is early days but thanks for your kind wishes I think that when Amy eventually goes back to normal food at least there may be some normality at the moment i feel depressed cooking for the rest of the family and have panic thinking about her medication. I was with her for 12 days in isolated room ( she contratced CDEf) and it really was awful we were 100 miles form home with my husband trying to keep working and looking after our other 3 kids .
I am so grateful for the care of her consultant he is really fabulous and has a lovely way with amy but feel that they are so direct in telling her everything he told her that he would behere with her until she was 16 and she picked it up that we would have to stay in hospital with him until she was 16. She has also had an MRi scan done last week and she was terrified ( havent heard results but am presuming that if there wer tumours somebody would have notified us ?
I will continue to keep connected with you i can hardly bear at this moment to read her diagnosis just know it is severe keep wondering how did this happen sorry but am ranting now best wishes and love to you all it is great to know that i am not alone ( my husband is hiding out in his cave he cant bear to talk about it )
love kathy

 

[Livilou]

Hi Kathy, So sorry that your little girl has been diagnosed with CD. I am new to the forum as well, I have 2 children (teens) with CD. The folks on this forum are amazing and so very supportive! You will find comfort here...I hope Amy is feeling better.

 

[my little penguin]

:hug: Kathy
I have an 8 yr old boy with Crohn's.
It is really hard in the beginning.
Ds did EN as well as 6-MP (similar to aza)
Does your Gi permit sugar in small amounts for her??
IF so you can make homemade cotton candy with pure cane sugar or simple sugar "cookies. (just sugar and water) these treats help.
WE made cotton candy cupcakes as well as used ice cube silicon molds to make candy shapes for special occasions.
Additionally we took shaved ice and sprinkled a small amount of sugar on it for him to "eat" at dinner. this helped keep his mouth muscles in shape.


As far as the meds well... for us without them things would be really bad and with them there is an increased risk of some things but as with everything in life ( car rides bicycles etc...) the benefit outweighs that risk at this point.


Glad you joined us.
I just joined recently as well.
:ysmile:

 

[imaboveitall]

Hey there, Kmum, I know how it feels believe me, as all on here do.

I'm glad to hear your Amy is on Modulen, Violet uses formula and it has helped tremendously both with growth/development and with symptom relief. She still uses it nearly four years post-dx.

The emotional aspect is...trying to say the least. Always worrying, always thinking of new/better treatments, risks associated etc...it's hard for us mothers.

But for them, once they get a treatment that works and they can return to normal life, they live like it's no big deal, they don't get nuts about it like we do. Violet lived symptom free for three years, it can happen for many of them and does.
The key -obviously- is finding which treatment works for her, and when she can get on with normal life the stress factor does reduce quite a bit.

This forum was the first I'd ever participated in also; V trialing Humira is what drove me to it! The folks on here are stellar. :thumright:

with love and understanding,
Julie

 

[Jenn]

Hope my post didn't sound harsh (sorry! I have the hardest time!)

The last couple of years, I've gone through all the stages of grief, because it is so overwhelming and a real loss to the life you knew and hoped for your child, I think. It feels like this huge chasm you come across, then you find a scarey but manageable path and feel ok for a bit, then your foot slips and oh %#$*& that freakin' chasm is still there! <hugs>

 

[izzi'smom]

Just wanted to second Jenns comments-I still move through the stages of grief when we come to a particularly difficult decision or hurdle. (Thank goodness I do it faster now, though...too much research for me to be in denial for too long ) I do so much better when I have a task to focus on anyway.
It is so hard in the beginning, and I hope you find someone local to you that is your dd's age to help her cope!

 

[Brian'sMom]

I agree that its so hard in the beginning...and then you hit spots where its hard again. This forum will help you because you'll be feeling something...and then see that you are not alone. This is a disease that causes mourning for what life 'was' like. I find myself thinking often, "I don't want this anymore". But that's not an option, unfortunately. It helps when the doc's get the right medicine recipe tailored to your child and they begin to feel good and 'normal' again. I'm glad you found us

 

[momoftwinboys]

I second, third, fourth the things the other parents wrote. Really hard at the beginning, give yourselves time to adjust to a new situation in life and know you are not alone. Things will get better in time...Lots of great people here to learn from and lean on. Welcome

 

[Dexky]

Welcome Kathy! All the soothing words in the world won't make a difference for a while but you and your girl will settle into a new normal once they get her meds worked out. Hang in there mom!!

 

[Catherine]

Kmum

How much does your Amy weight, only asking because my Sarah has only just moved up 75mg, as she did weight enough for this dose when starting aza.

 

[DustyKat]

Hi Kathy and :welcome:

I am so very sorry to hear about your girl, bless her...:hug:...and it is good hear that she is doing well. It certainly is early days for you all and that is the time that it is the most overwhelming, horribly so. Please have a look at this thread...

http://www.crohnsforum.com/showthread.php?t=22520

...I just hope it will go some way to helping you feel less alone and offer some comfort in knowing that what are you feeling is normal, natural and just.

Have you been given the details of the Crohn's and Colitis Association in Ireland? If not here is the link to their web site...

http://www.iscc.ie/

...perhaps there may be some information contained within that will put you contact with other parents locally. If not you could always contact them directly.

Are you in a Children's Hospital? Even if not, many large children's hospitals have an IBD unit/clinic that have meet ups etc for their patients and others in the community with IBD.

It will get better Mum, for you both. Your little girl will get better and she will move on past these dark days as you will and the laughter and light will return to your lives.

Good luck and if you have any questions please don't hesitate to ask! The main thing to remember, if you are hesitating about whether to ask, is there is no such thing as a dumb question!

Dusty. xxx

 

[Mom2oneboy]

:welcome: So sorry to hear that your daughter has Crohn's. My son is 10 and was just diagnosed this February. I have felt all the emotions you mentioned. It's hard to wrap your head around it all. I still haven't!! I want my old life back! No advice really other than just taking it one day at a time. This forum has been a great thing for me and I'm sure it will be for you too. Hoping for better days ahead for you and your girl!