Twice_as_Nice
Mouseketeer
- Joined
- Aug 13, 2010
- Messages
- 268
I am totally new here, have been a non registered lurker for a long time
I just had to make my first post this one.
I hope J has an AMAZING time and you get to relax as a family and forget everything for a while you deserve it.
We are planning a trip in Dec and our 3 yr old son has been having health "issues" for 6 months now, 3 hospitalizations in that time. Our latest visit to the children's hospital in our journey to figure out what's going on has us now looking at either severe Crohn's Disease with Arthritis or a rare Cancer. Sound familiar? Your son's story reads so much like our son's.
I came looking for some info on Crohn's and to see how we might help our son enjoy WDW. I'm so glad I found your trip report I can't wait see all the magic.
I just had to make my first post this one. I hope J has an AMAZING time and you get to relax as a family and forget everything for a while you deserve it.
We are planning a trip in Dec and our 3 yr old son has been having health "issues" for 6 months now, 3 hospitalizations in that time. Our latest visit to the children's hospital in our journey to figure out what's going on has us now looking at either severe Crohn's Disease with Arthritis or a rare Cancer. Sound familiar? Your son's story reads so much like our son's.
I came looking for some info on Crohn's and to see how we might help our son enjoy WDW. I'm so glad I found your trip report I can't wait see all the magic.

How exciting that you will be going to Disney, Is this trip going to be a wish trip or a family trip?
My only thoughts on that is sooner they find out what is wrong the sooner they can treat. Has your son been to a hemotologist yet? They can help determine if there might be cancer in his system. Prior to knowing what J was facing the Dr's had us drive 2 hours to one, never told us it was also the Children's Cancer Center YIKES but it did turn out to be good news, was not cancer. Some cancers would almost be better then crohns as they can be treated and cured, Crohns is there for life and it is ever changing so there is pro's and cons as to which it ends up being, No matter which it turns out Try and stay positive, it helps with either case.
one even pays my son 20.00 every 6 months for 20 years because they do not know what the effects of the drugs will be longterm in children.
There is even a great Crohn's cookbook out there that they will send for free ! What a huge help that was. As with any disease there are often several variances and severity's and it does become trial and error. Also if your child seems very similar to J's case consider seeing a gastroentologist if you have not already and preferably a pediatrics one as the adult ones often forget to take consideration for the differences in growth etc. Thankfully my son has an excellent Dr. I am not fond of her personally nor is she me, but when it comes to the care of my child she is the best and I would not move him from her for anything.

, I have to laugh
. In an earlier post I was mentioning murphy's law etc. and how we must laugh at it. Well Also in an earlier post someplace I had said I was the only healthy one in house. Well foolishness at me for saying that!
Only time I have ever been really sick was at 4yrs old and that was tonsils...
SooooOoooo I am hoping and praying that since we only have a lil over a month to go that a gallbladder surgery will go smooth and i'll be set for trip. Dr also says that eating the same diet as my son for the past 4 yrs (high fat diet low grains etc) is what brought me here well geeeesh i felt too guilty to eat all the fresh stuff in front of him ! So wee bit of advice for those who happen to come along with kiddos with crohns disease as sweet as it is do not follow thier diet with them 
smart disney folks ! 


Yes, I'm a little nutters.... 
But Good news is it's not my GallBladder. Turns out that a stomach ulcer I was diagnosed with over a year ago is giving me complications and is a wee bit larger and I am all blocked up due to that. Soooo I am thrilled I do not have to have any type of surgery at this point, there is one area of colon they are going to keep an eye on but if i clean myself out all should be good... Thank God
And so glad your here to follow along
To everyone

Been awhile since i had that many in house other then teenagers
. Surprises me how well bonds can be made here as well