Thanks so much for the reply. We just got home from her colonoscopy a couple hours ago. Had a strange day. This mornign the hosp. called and her doc. was out ill, so they had another doc perform the procedure. (he specializes in IBD) He suggested she stay at the hospital and do as you suggested, jump start with iv fluids/nutrition/prednisone/ and antibiotics. He called her original doc and she wanted to wait until tomorrow to review the pictures and prescribe something herself. Since it is Christmas, they thought she could go home and maybe come back if necessary. She is so little and weak. She has never been energetic, never had the energy for sports. I am hoping they get her back in and get things rolling.
Strangely enough, she hasn't complained much about pain, except for her rectum which is also inflammed and *****. The photos were disturbing. Much worse than mine- inflammation everywhere and ***** cankers.
We shall see what the docs suggest. I hope my daughter finds insight to this illness through this board.
God bless ,
I'm so sorry to hear about your daughter's diagnosis. My son is 14 1/2 also and was diagnosed with CD at age 11. This site is great - lots of information, support and advice.
I also wanted to let you know about another website that is specifically for parents of kids with IBD. It's another great resource - basically the parents there have been through it all and can tell you what to expect. The website is http://www.dragonpack.com/ibdsupport/parents/index.html
Hopefully the link will work - I'm not too computer savvy.
Nancy (son Ben,14,CD dx 3/06; double Remicade, Asacol, Multi-vitamin)
THANK YOU ALL FOR YOUR POSTS. VERY HELPFUL AND INFORMATIVE. DOCTOR HASN'T CALLED YET THIS MORNING TO ADVISE ON MEDICINES. WE ARE WAITING.
I HAVE HAD SUCCESS GETTING THROUGH OR HEALING FROM A FLARE UP WITH THE MEDS, PRED/PENTASA/ AND ANAMANTAL FOR RECTAL AREA. I ALSO FOLLOW A STRICT DIET OF NO DAIRY/ WHEAT/ NUTS/POPCORN/SKINS OF FRUITS/OR RAW VEGGIES. IT SEEMS TO HELP. I AM CLUELESS ON PROBIOTICS AND SOME OF THE OTHER MEDS AND THINGS YOU ALL MENTIONED, BUT I WILL CHECK THEM OUT.
I DEEPLY APPRECIATE EVERY POST. THANKS SO MUCH FOR SHARING YOUR STORIES, HELPFUL ADVICE AND SO FORTH.
MERRY CHRISTMAS AND GOD BLESS.
(AND DAUGHTER MARIE)-- SHE IS ADDING ALL THE ICONS- ENJOY
Well I'm not a Mom. I hope you don't mind input from a Dad. I usually don't reply to posts very often, only because there's so many on this forum with way more experience and knowledge than I have. I usually leave it to them. Since I'm in a similar situation with my 15yr old daughter, I'll try to offer some advise.
It sounds like you've already done the right things for her. A good GI is mandatory. You need to have faith in who you decide on. I wouldn't be to worried about the extent of the disease right now, as when being diagnosed for the first time means the disease has had perhaps years to get to this point. I can only guess that they will likely prescribe 8+ weeks of Prednisone to beat the disease into remission. You will read alot about side effects to this, but try to remember that alot of it is rare to extremely rare. Prednisone can seem like a miracle cure for some, but a maintanence drug will likely follow. I woiuldn't worry about her slightness or size either as once the Crohn's is under control, usually everything will start to catch up. My daughter grew 6 inches in 6 months. Puberty is usually delayed as well, but again, will come normally.
The only other thing I could tell you is, you've come to the right place for help and advise. There are some really great people here that can answer some of the most difficult questions. Good luck with everything.
Thanks and God Bless You.
Your insight is so helpful and settles my nerves a bit. She will be so happy when I tell her she has a chance to grow- shortest in her class adn obviously hasn't hit puberty.
Thank you so much for sharing your experience. I learn more and more every day thanks to all the wonderful people on this site.VIEW IMAGE
WHAT ARE LOW RESIDUE FOODS?
God Bless You,
Thaks for your response. Thank you also for you for prayers.
My daughter has been on prednisone oral pills for 9 days. I believe her energy level is maye at the best times of day 20% improved. Her energy level seems to fluxuate quite a bit during the day. Sorry about your son and his post prednisone problem.
Now I am wondering if my 12 and 6 year old have it too as they have trouble growing, gaining weight, but no blood in their stools or diarrhea. So, I will probably wait until one of those symptoms develops, or have them get a blood test to test for IBD.
God Bless You too,