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Good news, scopes were clean by the naked eye! Now we just wait for the biopsies!! Fingers crossed that they are clean as well!!! Now in the infusion center. My younger one is getting the first dose of Stelara. We are having a two for one deal today at the hospital!

Hi all, I haven’t been on in a while. I have been taking a break. Life has been rough. We just found out we might have a 3rd kid with Crohn’s. My son has not been having symptoms but wasn’t growing. We went to the endocrinologist for an evaluation and they did a fecal calprotectin as part of the...

Glad it is working for her. It has been great for my 21 year old and my 10 year old is starting tomorrow.

Just catching up with things as I haven’t been on the forum in a while. Glad she is starting Entyvio. I hope it works quickly.

I just wanted to give a quick update. After the flagyl and two weeks of entocort she was doing better. The doctor decided that her weight is up enough to raise her Humira to 40mg. After a month on the new dose we will check a fecal calp again.

I think PDX is right. She needs a scope!

It is true it might but he really doesn’t want to scope her yet. He tries not to scope the smaller kids to often.

Update: So we saw the GI for an emergency appt today. He does not yet want to scope her. He wants to do a course of budesonide and 7 days of Flagyl and see how she does. Shenis also going to do the breathe test tomorrow to check her enzymes for CSID since her sister has that. If she is not doing...

Hi Maya, Her pain is pretty random. Sometimes in the morning and almost every night at bedtime. She is also having some bad headaches which she did the last time she flared up.

Pilgrim, We did all of those tests. I am thinking MLP is right and she needs scopes. The last few days her pain is really bad again. Her last scopes were when she was diagnosed 3.5 years ago. I am calling the doctor tomorrow and seeing if we can get in this week to see him.

I really hope he agrees th imaging fingers crossed for her!!!!!

Pilgrim, She is homeschooling which makes it a lot easier. She has been a lot more tired recently though. We have an appt scheduled in exactly a month. I am going to ask him to order another FC to see if it changes. I know disease location can really affect Fecal Calprotectin Results her...

She has not had scopes since diagnosis. Our doctor really tries to avoid putting the younger kids through scopes unless he sees a real reason for them. She did have an MRE in April Which was normal.

Hi All! I have not been on the forum in a while. Life has been really crazy. Good news my older daughter is doing well on Stelara. Her Fecal Calprotectin is nondetectabke for the first time ever! My little one on the other hand is having a lot of stomach pain and joint pain again. Her Fecal...

After 22 hours spent on the phone speaking from everyone from AbbVie to everyone you could imagine the new Humira arrived!!!! Yay!!!!! Very excited excited!!!!

Soooo the saga continues. Basically express scripts lied when they said they had it. They didn’t have it and their specialty pharmacy acredo doesn’t have it they are out of it. I spent 4.5 hours on the phone with AbbVie and a million other pharmacies on Thursday and another 2 hours on Friday. In...

Yes Maya. That is what the company told me. Right now only for those under 18. Hopefully will roll out soon for those older then 18. I was literally in the phone for hours with Express Scripts and they couldn’t figure it out and so I called the Company and they told me everything. They were...

Just wanted to update. Things are pretty much the same. My little one continues to have stomach pain but all the labs show her as being in remission. Luckily the Bentyl does seem to help her pain a bit. We jut placed the order for the new Humira. Very excited about it.

It is finally out! Our first order is on the way. You must tell your doctor to write a new prescription asking for the preservative free version and tell the doctor to put the NDC number on the prescription. (The NDC number is the drug number every drug has its own number).

Been offline for a bit so just catching up on things. That is exciting news about her mission trip. Hope all goes smoothly for her. Keep us posted!