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Hi all, I need some advice. About 3 weeks ago my younger daughter with crohn's started complaint of stomach pain. Her doctor did labs and a fecal calprotectin. He also started her on Budesonide, Metronidazole, and Bentyl for pain. All her labs came back normal and the fecal call. came back...

Hi clash, sorry I never replied. Caitlyn was doing about 90% feeds at first now she is about 75% formula dn 25% food. With the G tube, Methotrexate and Stelara she is finally almost in remission.

Our appt today with the Cleveland clinic in Ohio at the chronic pain rehab programs did not go well. Firstly they told us they never got her records even when I called last week they said they got them. Then they said due to her low weight and the fact she is on a feeding tube during the day...

So I did a bit of journal searching and it seems that in very rare cases Crohn’s can cause some issues with the spleen. Hoping it is nothing to worry about. Keep us,posted.

Good to hear as we may be looking at remicade for our younger daughter.

Gabe’s Mom, We are dealing with this as well. My daughter is going to be evaluated at the pediatric chronic pain program in Cleveland clinic in Ohio. Maya told us about the program and we applied for it with her doctors approval. We got approved for the initial eval quickly so we will fly out...

Hi Optimistic, She is not doing great but the good news is we have an appt already for the eval for the pain program, they are moving on it very fast. All her doctors are working together to her her in to it which is nice. After the eval they said it will take two to four weeks for a date to get...

Hi Clash, Sorry your son is going through all this again. I wanted to let you know Caitlyn just had scopes and the Stelara with the g tube and Formula and methotrexate all together has Caitlyn in remission for the first time ever since diagnosis though we are still waiting on biopsy results to...

Love it!!!!! Such a cutie!!!

They have done a bunch of tests. The good news is the Stelara seems to be working. The bad news is the doctor thinks she has amplified pain syndrome from her gut being inflamed for so long. We are still waiting for the biopsies from the scopes (expected to come back in a week or so and the MRE...

Caitlyn is in the hospital again. Her doctor is not sure why she is having so much pain. Looks like she is going to be having scopes, MRE, and another gastric emptying scan.

Sorry you are dealing with another issue. Are they sending her to see a neurologist and are they going to do a full MRI of the brain? Both my girls had them done for headaches. Neither showed anything much thankfully. Caitlyn was given Fiorcet for migraines. Not sure if it is approved for young...

Nik, Sadly we are in the Same boat with my daughter. New things keep popping up constantly.

Niks, Has she ever been checked for Ehlers Danos Syndrome? It might fit the picture.

We have been on Entyvio and now are on Stelara. Enryvio was great for a while until my daughter started getting extreme migraines from it. She has now switched to Stelara.

All my kids were vaginal home births. But there definitely are some studies showing this. We have discussed it here on the forum a while back.

Caitlyn has been having worse and worse nausea. I called the on call Physcian at Nationwide. She was super nice and we talked for a while. She is going to speak with the motility team tomorrow about Caitlyn. She also told me their first move would probably be to change her G tube to a J tube...

We did not but I recommend doing it. They could possibly catch up on their own but for their self confidence sake I wish I had done it for mine.

I am glad they approved for the MRI. Finger crossed for answers Caitlyn also has an issue with headaches from inflammation. It was recommended we try an allergy medicine as they say that can help. We stared he on Claritin and she has been having much less headaches.

My daughter has slowed motility due to her Crohn's disease. Nausea, vomiting, and constant belching are her main symptoms of this. It took a long time for us to get it diagnosed. I recommend you ask about having motility testing done. I also recommend getting seen at an IBD center if you are not...