Search results

MLP, How is your son doing on Stelara? Caitlyn is doing well on it. Best she has done on any drug. I just wish we could get her pain under control.

I totally understand about keeping your head in the sand. I was the same way when kiddo number two was diagnosed. Sending you lots of hugs too!!!

Pilgrim, I think everyone else has given you very sound advice. We are also having a lot of issues with Humira. It seems to be working for my little daughter but she now has an awful rash on her leg that won’t go away. Sending you lots of hugs and hoping you can figure out what works the best...

So glad she loved it!!!! Happy holidays!!!

Both doctors sent the letters. Now have to wait for the team to meet again.

I would definitely keep an extra eye out the next infusion. Caitlyn’s reaction to imuran started with just a fever.

That is great news!!!!!

Yes to all that MLP. It is just crazy. Hopefully the letters are being sent today.

FW and CIC, I don’t know if I posted about it there was a hiccup with her acceptance. One of the team members wanted a letter from her GI doctor and psychologist that she doesn’t have an eating disorder because in the past they had two kids with G tubes who has underlying eating disorders. The...

Maya and MLP, He is only going to stop the Humira if she is building up antibodies. I was very surprised about the Entyvio vs remicade but he just came back from a pedi GI conference and said that was the newest recommendation. Entyvio gave Caitlyn horrible side effects though. I am not in a...

My younger daughter has been having some issues from Humira. She has been getting migraines and rashes. The doctor ordered antibody testing and Humira levels. I thought it was interesting that he said the next step would be Entyvio not remicade if she has built antibodies to Humira. He said they...

Hi All! We had a really productive appt with the GI doctor today. He agreed to change her to-a GJ tube. He agreed she should have a visit with an endocrinologist and he is going to try and help in way needed to get Caitlyn into the pain program.

Thanks for the suggestion MLP and Maya. My son is seeing an endo because of slow growth so we can make an appt with her for Caity.

That is just crazy! I hope you finally get it worked out the hoops these insurance companies put people through is just nuts!!!

Maya, That is crazy about the Adrenal Insufficiency. We have never tested Caitlyn for it but I think we might need to.

That is really interesting and I can totally understand about the risks of methotrexate thanks for sharing his answer!

I just wanted to send you gentle hugs. Don’t beat yourself up. This disease is tricky and has a huge learning curve. Make sure your child is seeing a doctor that is well versed in treating very young kids with IBD. I recommend going to a large university setting even if you have to travel a...

Our girls get them about every two months.

My daughter also gets them very badly from prednisone. If you read it was a drug side effect then I would definitely bring it up with the doctor again.

Maya, We didn’t go back yet to the rheumy.