My 16 sweet boy missing out please help me!

Hello, stressed out mom. You've posted the same thing multiple times. I have read the post but haven't responded because I don't really have any experience with such serious disease. I noticed that you were new here a couple of months ago and considering changing docs? What ever happened with that?

It is impossible for us to say anything about what is going on with your son since you haven't really provided any history or information other than that he has a heart monitor, lost his central line, has blood clos and back pain and breathing problems. It sounds like he should be in the hospital, frankly.

Did he ever start the Cimzia?

Sorry to hear your Son is suffering so much. I'm not sure about the heart problems but I was on TPN from October 2012 till July 2013 and was doing fine blood tests always came back normal, but since coming off it My blood work for kidney function has elevated which I can't get below 148 also magnesium levels are low and I get quite a lot of back ache and shortness of breath also crave salty foods. I spoke to my Crohns Consultant and Nutrition team and they seem think as I was dependent on TPN for 9 months and getting everything I needed nutritionally through it that once I started eating independently I'm now lacking something that was in the TPN which is causing these issues. It's just trying to find out what it is. I've now been referred to a kidney doc to try and find out if they can find the cause.

How long has your son been off TPN? Is he having his bloods done regular since coming off it and are they coming back normal? x He maybe going through a similar thing to myself I would try and get hold of the nutrition team that were looking after him and voice your concerns and see what advise the can give you. Hope you soon get it sorted and your Son starts to feel better x

Sounds like potassium and magnesium deficiency

i think we all might be able to help better if you give us a little history about your son and his meds. the better we understand the better advice and opinions we can give.

Sorry but this is my first time joining a place to vent? No I really haven't provided all My son's info, because I didn't know how the response is? Yes I'm very stressed out been doing this with my boy since 2000.. tried every med have the best doctor's. I just can't get over how much this has damaged my son after all these years I believed we would in control of this crohns! But now so many things are happening that it's just don't seem only GI? I just feel defeated this year. Kazmar if your out there I have seen that you have been a member to this site maybe just need some advise using it? It's great to know that there are people out there listening.. I do need support this has been a long 14 years and now he's 16 and this are changing? Thought I was doing everything right and Now look at me on a blog reaching out because now I'm that confused!

It is possible to double or triple post by accident. You are not the first and you won't be the last, so don't worry about it...

We do want to help, but nobody is a doctor here. And what we do know is limited to Crohn's, so non-GI issues really are beyond our scope.

I gather your son has been through all the meds. Has he had any surgeries yet? Followed any special diets? If the TPN failed, there are special elemental drinks available which perfom much the same function as TPN. The one I had was called Elemental 028: not sure if that's available in the US, but if not, there will be another brand. Even a non-elemental liquid diet might provide some respite. Unfortunately any respite a liquid diet gives is only temporary, but it may enable your son to build his strength up and hold on for new treatments.