Nothing is working for my daughter....help needed....

[Chronic]

My daughter has been diagnosed with severe refractory Crohn's disease since 2011. Medications have not given her reprieve and she has not experienced remission. She has not been in school for 4 years. Has been in hospital or home bound. She has had a colectomy and has an ileostomy. None of this has worked...a year ago she had a stem cell transplant. An experimental approach with the idea that her immune system would get a reboot. The ideas is that if the Crohn's reserviced it would be less severe and meds might provide remission now. Unfortunately, stem cell transplant was not successful. Her crohn's has returned and now predinosone does not even provide some relief. Doctors are struggling with ideas to help her. Doctors are now thinking about Thalidomide...which is difficult to get in Canada and not covered by insurance. I am looking for doctors or pediatric hospitals that might find another way of helping her. I wonder if the Crohn's is a symptom of something else....HELP...

 

[HelenMelb]

I am so very sorry to hear that nothing has been able to get your daughter into remission. The only things I can think of to suggest, if you haven't already looked into them, are two trials-one is the Qu Biologics SSI vaccine for Crohn's, which is a Canadian trial, and the other one is the Redhill anti-MAP trial.

I hope the doctors can find a treatment for your daughter that works for her very soon. Wishing you much better days ahead.

 

[SupportiveMom]

Sorry your daughter aND your family are struggling. I know that chase towards remission. We are still looking for it too. In August we started to be seen by Sickkids hospital IBD team and have had access to meds other doctors couldn't get us. Have you been to BC children's hospital? I don't have any experience there but I would start there based upon your location.

Health Canada has a list of trials ongoing you may want to look at. go to the new crohns & Colitis Canada website and there is a link on it. Let me know if you can't find it & when I am on my computer I can get the link.

What meds has your daughter been on? Maybe there are some other meds recently available she could try. Entyvio has just been approved. Tried it yet? How about Simponi?

 

[my little penguin]

^^^^ yeah that
What drugs has she tried ???
Paging izzismom I know her DS went through all of the standard drugs as well

 

[kitt]

Oh my goodness, I am so sorry to hear this. No child should have to suffer so much and no parent should have to watch their child suffer.

I am new to this Crohn's stuff so I can't help. All I can do is offer you some prayers, positive thought and big cyber hugs.

 

[SupportiveMom]

MLP it really stinks there are a few of us kids that have been through the gambit of meds. Theyoung all have a long life ahead of them with limits to treatments already. It stinks!

 

[izzi'smom]

I'm wondering what she has been on as well! Have you been to multiple docs? Another opinion is often my go-to.

Izzi did super on tacrolimus. It isn't often chosen for crohns but she had very few symptoms (almost no pain, one bm/day, mild to moderate inflammation upon shopping but normal crp) for over two years.

Hoping you find something quickly!

Ironically when I was looking into stem cell trials izzi didn't qualify-she wasn't"sick enough", although they wanted to do a total colectomy. We have avoided surgery thus far.

 

[Chronic]

Thanks for all the suggestions and supportive comments. Luckily my daughter has received amazing care at BC Children's hospital. They are just perplexed and I am trying to find ideas and suggestions to bring forward to them. Will keep on keeping on and attempt to get my daughter some reprieve from this disease.

 

[my little penguin]

Chronic
But what meds has she tried ?
Biologics alone or in combo and if so which ones ?
Simponi
Cimzia
Remicade
Humira
Stelera
Tacro etc??
What combos added to them
Mtx
Imuran
EEN
Etc??

 

[SupportiveMom]

Entyvio was just approved in Canada! (Not for kids, & only for UC) Ustiksemab (spelling it wrong I am sure) is coming in about 6-8 months I was told. Those are the next 2 promising meds. After that I think it is too soon to know.

 

[kimmidwife]

Chronic,
Also how old is your daughter and has she been tested for immune disorders? Sometimes Crohn's can be a secondary illness to an immune disorder. This happened to one of our members here daughter, Dancemom. I will try to tag her.

 

[Maya142]

Xeljanz which is approved for Rheumatoid Arthritis and is a biologic is also in trials. It's a pill, not a shot or IV! I have no idea how it's doing in trials though.

 

[DanceMom]

My daughter was initially diagnosed with Crohn's, only to find out later that she actually has an immune deficiency instead. That being said, people with many immune deficiencies are more likely to have Crohn's and other autoimmune conditions. Since your daughter has already had a stem cell transplant (God bless you both....I can't even imagine.....) I assume that full immune testing has already been done. But maybe not?

 

[24601]

Hi Chronic,
I'm so sorry to hear of everything that you and your daughter are going through.

I'm currently finishing testing (just a PET scan to go) before going ahead with an autologous stem cell transplant, and I wondered if you'd be happy to share what meds your daughter had tried before the stem cell transplant and what sort of response (if any) she had to them and also which meds have been tried after the stem cell transplant.

I have heard of the stem cell transplant not working (and a patient who repeated the stem cell transplant a second time with a better result) and I'm really sorry to hear this has been the case for your daughter.

I hope that there are some meds that have come through recently or are coming through soon that will help her.