A difficult time

[rosiecotton]

It's been awhile since I've written a post. Been going through some things and having a hard time focusing on things I should be.

The main thing on my mind is my 15 year old son, Colton. He has dealt with stomach issues for, oh, about a year now maybe? He was told he had acid reflux and put on some different meds (Prilosec, etc). Finally in June, he had a scope done. We were told he has gastroparesis. This is a condition in which the stomach muscles do not function correctly, so the food does not get pushed out into the digestive tract. He was put on erythromycin. We were told to have him on it for 2 weeks, then off a week, then back on 2 weeks, etc- so his body would not create a tolerance to it.

But he at first, seemed to feel worse while on it. It's an antibiotic, so can cause nausea. So, then I got some different herbs- acidopholus, ginger, enzymes, etc to help. Which did seem to work, but the past few days he's dealt more with nausea. And he's been having headaches.

I was frustrated with the doctor who did the scope because afterwards all he did was tell us what he had, and hand us papers and tell us he was putting him on medication. That was it. Nothing about doing any other tests, nothing about a follow-up visit, etc. Everything I've found out about this condition, I've read online. They did not do a stomach emptying test, which, everywhere I read, they should have done. I'm not saying it's not what he has, as he has all the symptoms, but still. Why didn't they do it?

One good thing is, he does not have the vomiting that a lot of people have with this. I hope it doesn't eventually come to that. He's already lost 50 pounds, and doesn't need to lose more. He was overweight, so he really did need to lose weight. But I'm just hoping he doesn't lose more. He is not eating much at all, because he deals with nausea so much.

I have been reading different ways of treatment online. One is acupuncture, which he has an appointment next Monday with one. I've read that some people have had some luck with this. I may also take him to a chiropractor because of his headaches. He talks about his neck and upper shoulders bothering him. I also did read that maybe this could help his gastroparesis. The vagus nerve is what controls your stomach muscles and there could be a chance that maybe, just maybe, it's getting pinched?

There is no cure for this condition. It can be treated with meds, and if needed, a 'gastric pacemaker'. It's soooooo frustrating. I feel so bad for him. He feels so all the time and won't go anywhere. This is a kid who I couldn't get to stay home. He always wanted to go somewhere. Now, he hardly does anywhere at all because of how he feels. It breaks my heart. I cry everyday. This really is not a life threatening condition and people do learn to live with it. But he's only 15!!! He should not be having to deal with this!! He is missing out on so much stuff right now that he wants to do. :o(   I know he gets really down about it.

I just wish there was something I could do to make him feel better. He does have an appointment at Riley Children's Hospital September 28th- but that seems so far away. I am thinking of maybe seeing if I can go to a different gastroenterologist, because I'm not happy with how the first one handled things, and especially since he didn't do the other test. I sometimes wonder, maybe it's something else? Maybe he doesn't have this???

As I said, I cry almost everyday over this. I try to stay positive. I'm praying more and trying to lean on God more. Some days I feel very encouraged and feel like we will beat this!! Other days, I feel defeated and scared.

So, please, keep us in your thoughts and prayers. I know many of you don't know me, or even if you're on my friends list, we don't talk much, but I would still appreciate the prayers.

[blueeyedfamily]

Aug. 5, 2009 at 10:39 AM

I always take my daughter to Cincinnati Children's over Riley.  I have had great luck with them.  I can't remember what part of Indiana you live in, but this might be a good help.  Katie had acid reflux as a baby and they treated her for two years until she was all better.  Two scopes.  One to find out what to do, the next for a follow up.  Good luck! PM me if you want the dr.'s name we used.  I will have to look it up.

 

[rosiecotton]

Aug. 5, 2009 at 12:53 PM

Our pastors daughter takes her daughter to Cincy also. I've just had so many people tell me to take him to Riley. Is there a reason you prefer Cincinnati over Riley?

(Original Poster)

[blueeyedfamily]

Aug. 6, 2009 at 9:32 AM

Just closer, but Cincinnati has always been so good.  They make you feel like they really care and never seem to be hurried.  They take the time to answer all your questions and always make sure to tell you before leaving that if you have any questions, to call.  And when I have called they do a great job answering them and never make you feel like your interupting them.  And they have worked well with me for making payments.  I have owed literally 1000s of dollars to them and they let me put them on tiny payments like $30 a month until I can pay them off without interest.  Just my experience.  Even when we've had to go the emergency room it never took long to get her seen.   When we went to our local ER for her once, it was forever getting her seen.