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Thanks Dexky! I know meds may have to be considered. She is still on Colazol. I really hope it's just a schedule adjustment she'll need. My DH and I just remembered she had strep 4/22. I know that can elevate the sed rate, but from a month ago? Will have to call GI Dr on Tuesday to remind them...

So happy for you! Amazing news!!

Its been awhile since I posted on here. Sorry for my absence....been very busy getting Grace into remission which the Dr told us she was in 8 weeks ago. She is on Remicade and had her 3 loading doses all of which went well. We were able to wean her off prednisone and prilosec. Labs were looking...

Thank you MLP. I hope your son's infusion goes well on Thursday. Praying for you!! One thing I have learned so far with this disease is patience (no easy feat). We are in no rush if it all works out in the end, so I'll wait 3 infusions or 10 infusions if that's what it takes. I am sure all the...

Thank for all the well wishes and advice! Grace did really well today except for the IV freakout we had at the beginning, but she got past it:ybiggrin: She actually said afterwards it didn't hurt as much as she thought it would. :rosette1: Nurses, Child Life staff and psychologist were there and...

Hi everyone! An update on Grace: Remicade infusion scheduled for this Tuesday 2/5. She is really flaring and after much discussion we decided to go ahead with remicade and not 6mp or methotrexate. She sees the CHOP IBD Team psychologist tomorrow, so hopefully that will help with her anxiety and...

Thanks Marni's Mom! Everyone's story and journey is so different. I hope your daughter is improving. Recent update on Grace: Well Colazal not really cutting it. Her labs still show some inflammation even though she's on Pred too. So we are increasing Colazal to max dose for her weight and...

Update on Grace: Well we started her on Colazal (special compounded liquid) 1tsp 3 times daily. She began Tuesday evening and so far so good. No side effects yet.....:biggrin: Next week will be very telling when we drop her prednisone from 4ml to 3ml:rosette1: She is having loose stools and a...

Short of physically restraining her which I won't do, we have told her she has to do this and why. Explained everything every which way I can to her. She literally freaks out. We are very strict with her and she knows there are rules for everything. She's a great kid and usually follows all the...

Waiting for a call back from compounding pharmacy. Hoping they can take the powder from inside the capsules and make it into liquid for us or we can get the cherry syrup to mix on our own....Keeping my fingers crossed

We have opened the pentasa and she tried it that way. Says it hurts her throat and mouth and she feels like vomiting....:( Don't know what else to do....

Well Grace will NOT take the Pentasa. :( Very frustrated Mommy and Daddy here!! Oraflo cup ordered and on the way so we will try it. She has swallowed some candies, but says it hurts. She sees CHOP psychologist on 2/4, but we cannot wait. Diarrhea and some abdominal pain is back since we...

Grace is home!! She is very tired and cranky. Poor kid!! David I will definitely check into the magnesium levels when I speak to her GI Dr tomorrow. Izzi's mom Grace is 10 and has been on Pred since 12/24/12. She is on 5ml now. Not sure when we will try to restart the Pentasa, but will figure it...

Update on Grace: My poor baby was hospitalized on Friday....We started the Pentasa Thursday night and Friday morning she woke up with excruciating pain! She had not had a BM in 24 hours and had been eating a lot due to the Pred so after a call to GI Dr on call we gave her some Miralax. Well...

Devynn's mom it is a capsule and we can open it and put it in food like apple sauce. It does have hundreds of balls in the capsule and luckily they have no taste:)

Thank you for the links my little penguin! My husband can't wait to order the oralflo cup and we will definitely try the candy route. She sure does love her candy:) Thanks JC's Dad. I hope your son starts to feel better soon and you can get some rest. I know how you feel. Can barely keep my eyes...

I agree with you David! Even though I am new to all of this, it just doesn't make complete sense.....I will definitely keep it in my back pocket for now and we'll see how my little one does. She really hated taking the Pentasa tonight...Dr said we could sprinkle it on food for her to swallow...

I did see that Pentasa is for ulcerative colitis and not crohn's. GI said she wanted to use this to decrease inflammation and see how she would do. I guess she is taking a more conservative approach?? I have been reading about LDN and printed out the studies. I asked our Dr about it and she did...

Well we saw the GI doc this morning. We reviewed all of Grace's tests: Digestive enzyme testing all normal, so the prior diagnosis of lactose intolerance probably incorrect though we are keeping her on lactose free/bland diet for now. Upper GI with small bowel follow through showed mild...

Thanks for all the advice and questions to ask the doctor. My list is getting longer and longer. Right now evening time is very difficult for her. She seems to be so much better in the mornings, but by 5pm she's cranky and very picky about her food. Not sure if this is the Pred?? We split her...