Breanna's LONG journey

[Breanna's mom]

Breanna has had a VERY ROUGH year thus far. She has been admitted 4 times this year and most recently spent 22 days in a hospital 2 1/2 hours from home. She has battled a severe case of Remicade induced psoriasis that became seriously infected and a nightmare to get rid of. She was started on Entyvio and just when things startd to calm down she started having issues with her eye swelling and very painful. Final diagnosis proven by surgical biopsy is a rare Crohns complication called Psuedotumor Myositis. We have traveled the 2 1/2 hours every week over the last 10 weeks for her to get 1000mg Solumedrol and IV Methotrexate. She has not been to school since last November when all this started and has had no summer because of the lengthy hospital stay and treatment course. Unfortunately the rheumatologist and gi are expecting a relapse, and we are slowly seeing it right now with the Psuedotumor Myositis, which then they will start her on a 7 month chemotherapy course of Cytoxan. Has anyone else dealt with this?! She just turned 13 and as a mom seeing her go through all of this has been a nightmare!! :-(

 

[Mr chicken]

Nothing but hugs to offer
DS has had a lot of eim but not that one in particular .

Has she been seen at Cincy ???

 

[araceli]

Sending Hugs your way. I really hope they find something that works and get her in remission.

 

[CrohnsKidMom]

I am so sorry to hear this. My heart goes out to you. I will keep your daughter in my prayers.

 

[Breanna's mom]

Mr Chicken- she has been at Nationwide Children's Hospital in Columbus. She is followed by the chief of staff of the GI and Rheumatology clinic.

 

[Maya142]

Really sorry to hear this. Your poor little girl! Sending HUGS!

 

[Pilgrim]

It sounds like she has had a terrible time of it. I'm so sad for you both. I hope there are light moments along the journey. I'm going to go read about pseudotumor myositis. I have not heard of that complication yet.

 

[Breanna's mom]

Pilgrim- we had not heard of it either. We were told there are only approximately 17 people who have dealt with this.

 

[DanceMom]

Don't know if I've asked this before, but has she had a complete immune workup? The severe infection and eye issue prompted me to ask. I hope you see a quick turnaround in her health very soon.

 

[Breanna's mom]

Dance Mom- She did have a complete workup while admitted at Nationwide byban Immunologist. Fortunately it all came back good.

 

[pdx]

So sorry that your daughter has had such a rough year, and I really hope that her doctors can find a course of treatment that brings her some relief.

 

[Mr chicken]

Did they run this type of genetic testing ???

http://geneticslab.emory.edu/documents/education-materials/disease-category/inflammatory-bowel.pdf

 

[Breanna's mom]

I dont know if that specific genetic testing was performed but I will ask at her next appointment. I do know some type of genetic testing was performed. Thank you for the information!!!

 

[xmdmom]

No words, just [[[HUGS]]]

 

[24601]

I know that some Crohn's patients have experienced a great benefit from the first mobilisation stage for stem cell transplant alone which involves only cytoxan (cyclophosphamide). I don't know how the dose would compare to what your daughter will receive over the 7 months but I hope she has good results from the treatment. Sending my best wishes :ghug:

 

[CarolinAlaska]

I'm so sorry to hear that your daughter has suffered so much. I hope she finds a solution to all her problems quickly!