Update on my son

[Twosons]

I know I joined, posted and disappeared. Its just been rather hectic here. I'm learning as we go and its not been the easiest time.

My son is still dealing with bleeding, nausea and has developed even more issues with food. This week Ev will have a naso-gastric placed and go on bowel rest. Last month he was admitted once again and a new CT was done to compare to the one done in June. The CT showed he still has thickening/inflammation of the Rectum, Ileum, Jejunum and Duodenum. The areas in the Jejunum and Duodenum appear to have worsened according to the doctor who cared for him at the hospital. His regular GI agreed and said it was time to start Remicade and also mentioned surgery. The GI who treated him during his last stay again brought up the idea of bowel rest. It was first suggested during his second stay in June by another pediatric GI. We spoke with his regular GI about it and she told us it was just an experimental idea that showed no real benefit and that in her opinion it wasn't going to help him. After researching, reaching out to other doctors , parents and hearing more positives than negatives we told his doctor we'd like to try this before starting Remicade. She agreed but has been so negative every step. There's much more than just this though. My son had a very sharp pain that was followed with a very clot filled bowel movement. I immediately called his doctor and left a message. This was around 10 am on a Tuesday. I did not get a call back until Thursday afternoon. That's how it is at this office. You talk to answering machines and wait for a call back. In this case I took my son to our regular doctor around 12pm on Tuesday. My son doesn't feel like he can connect with his doctor and I know my husband and I feel the same.

We are in the process of finding a new doctor as its become clear our current one is not going to work. Next month we'll be traveling to Cleveland and he'll be seen by doctors there. We'll be there a week as they go over his charts, do tests and hopefully find a way to help him. Its been a very long 5 and a half months but I'm feeling positive that Ev will soon be back to my running, soccer playing son

 

[jmckinley]

:hug: So sorry things have been so rough! It does sound like a new GI is in order. It's hard to work with someone who won't listen, and talking to an answering machine? Yikes. When it comes to our kids we need to talk to a real person and be heard. Nothing irritates me more than when they call back days later and sound unconcerned :voodoo:

I hope you find a new GI soon and get some results. That blood sounds like a real concern. It may be that you do have to start the remicade and the bowel rest, but I'd be sure. It is a good idea to get it under control to minimize the scarring, even though the meds stink!

 

[Sascot]

Wow, it does sound like things have been difficult! I hope the new doctors are alot better and get things going so that your son can get back to enjoying his life! My son did the EN through the NG tube for 8 weeks and it allowed him a few months medication free before any other issues appeared.
Good luck with it all!

 

[Earnellzwifey]

I just wanted to send some hugs your way and I hope the trip to cleveland gets you some answers and your son some relief.

 

[DustyKat]

The GI who treated him during his last stay again brought up the idea of bowel rest. It was first suggested during his second stay in June by another pediatric GI. We spoke with his regular GI about it and she told us it was just an experimental idea that showed no real benefit and that in her opinion it wasn't going to help him.

Whoa, she really thinks that! :yfrown:

Of course any treatment is going to have its failures and EN (Enteral Nutrition) is no different. However there are more than enough reliable studies available to her that will show that EN, in paediatric populations, is just as successful as steroids at inducing remission. There have been some that question whether this rate of success continues with subsequent flares but nonetheless it still remains a safe and viable option and I personally believe that even after its initial use it still retains its effectiveness.

You will find that in most countries outside the US EN is used extensively as a first line treatment for Crohn's in children.

I am so pleased to read that you are getting a second opinion. You need to be able to connect to a doctor that holds so many decisions and suggestions in their hands for the person in your life that you hold so very dear. You need to be listened to, to be validated and at ease enough to hold no fear at asking anything that troubles you. There surely is nothing worse than seeing your child suffer and feeling that the doctor is dismissive of your thoughts and fears.

Good luck with the appointment next month! I hope they not only meet but exceed your expectations and your dear boy is soon feeling well and full of life! :hug:

Dusty. xxx

 

[Lori1973]

Wow, our prayers are with your son. I hope you guys get on the right track real soon.