The Saga of Lydia

[Lydia's Dad]

My daughter Lydia is now 12 years old. In 2008 she started with what the Dr's said was an upset stomach - that was in the August. from then on she got sicker and sicker and finally in January of 2009 she was diagnosed with Crohn's. Lydia had steroid treatment for a couple of months and things settled. In August that year she developed a rectal abscess. The Dr said it was a bruise. The abscess fistulated and burst. Lydia was very sick. She spent many weeks in hospital on TPN and had 25 operations on her abscess. A year later she was put on Infliximab and Aza. Then she had a right sided hemiclolectomy and stoma. It was then that the vomiting and nausea started. It comes and goes usually 12 days after her infliximab treatment - but it is meaning she is only getting 2 weeks of semi normal life in every 8. By this I mean she isn't vomiting. She is about to be put on 6-MP to see if that helps. It has been a long hard road so far and every time we see a light it is suddenly snuffed out. Lydia is a fighter and is strong in spirit. Any suggestions and advice appreciated.

 

[David]

Greetings and welcome. I'm so sorry to hear your little Lydia is having so much trouble The poor thing.

I would suggest you check out our Parent's of kids with IBD forum as well as our Remicade (Infliximab) support group. Hopefully they can be of help to you.

I wish you and Lydia all the best and pray things improve quickly from here.

 

[xJillx]

I am so sad to read this about your little girl. Sometimes it can take a while to figure out the right "cocktail" for an individual. Hopefully adding in 6MP will help. If not, have you discussed other treatment options with her doctor(s)?

I highly suggest checking out the Parents with Kids of IBD subform here: http://www.crohnsforum.com/forumdisplay.php?f=49
There are many parents like you on here. I know you will find it helpful to talk to others who can share their knowledge with you.

 

[DustyKat]

Hi Lydia's Dad and :welcome:

I'm so sorry to hear about your daughter...

My daughter also went undiagnosed for a lengthy period of time and ended up requiring emergency surgery. She was diagnosed on the operating table. Fortunately she has responded to treatment post operatively, that was 5 years ago now.

Have they suggested another biologic, Humira, to you?

Has she had any further testing to see what is causing the vomiting? Something like a scan to see if their is inflammation or scarring that may be causing it.

How are her bloods? Any problems there?

Sorry for all the questions! :eek2:

I hope you get answers soon and Lydia finds some much needed relief.

Thinking of you, :hug:
Dusty. xxx

 

[Crohn's Mom]

LydiasDad, I am so very sorry to hear your little girl has been through so much already in her young life

My daughter went undiagnosed for a very long time. Even though CD was suspected from age 9, she wasn't officially diagnosed until right before her 17th birthday. She was initially treated with prednisone and Apriso, and then moved on to 6mp. Unfortunately, by the time treatment had began, none of the medications had any affect on her because too much damage had been done already. So she had surgery in March of this year in which over 100cm of bowel was removed, and also woke up with a stoma.

I have similar questions as Dusty. Have they discussed switching to Humira if the 6mp doesn't do the trick?
and how are her bloods?

My daughter is currently being treated with Cimzia, but it's my understanding that it's not yet available in all other countries just yet. She seems to be doing well with that treatment so far, with a few set backs here and there, but better none the less.
I can unfortunately relate greatly with the feeling that this will never end, and it feels like you're constantly hitting a brick wall.
If I can help you in any way, or answer questions, etc, please feel free to ask away.
I hope Lydia responds quickly and effectively to the new combo of meds!

big hugs for you and your family,
~T~

 

[Dexky]

Welcome Dad! Is Lydia's stoma intended to be temporary? I have.the same questions the others have mentioned. Do they intend to keep up Inflix with the 6mp? I hope they get her settled soon, for all your sakes!