Thanks to everyone who expressed concerns. My son had a follow up appointment with a GI Doctor that specialized in Crohns. She wasn't as sure as the other Doctors that he actually has it. Upper/lower GI scheduled for Friday (unless she sees something when she receives the CT images that indicates it would be too risky).

Keeping fingers crossed. But while not convinced he has Crohns - the doctor also indicated he may still need surgery to remove the damaged section of intestines - depending on endoscopy findings.

Hi Ragtop

Sorry your son is having to go through this. Did they actually remove his appendix or are they just trying to manage the infection?

I had an appendectomy 18mths ago and was given Metrodiazanole (Flagyl) while in hospital. I already had mild PN in hands & feet and after the surgery it became full-body intense PN. No one can confirm if it was the Flagyl as I also have an auto-immune condition.

Hopefully your son can avoid PN developing. As others have suggested supplements that may help I won't add any. Re the possibility of him having Crohn's disease there is some work being done in using Low Dose Naltrexone (LDN) to help relieve symptoms. Here's a link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Let me know if you want more info - I have several sites bookmarked.

All the best for getting the diagnosis sorted and getting him the right treatment.

im curious, you mentioned infection, did they say what kind,

No, the infection was seen on the CT scans. No testing was done to isolate the specific type. I assume that's why they are treating him with both flagyl and cipro (between the two, I think you pretty much cover the spectrum of infectious agents that could be in the digestive system.)

One of the interesting things I read was that flagyl used to be a standard treatment for Crohns disease. More recently they have moved toward cipro due to the neurotoxic effects of flagyl.

But if you have a serious infection that's eating up your intestines, you do what you have to do to stop it - even if there is some risk involved.

I would also like to send my kindest wishes for an excellent outcome for your son.

Sylvie

Well, this is my son's last day on the antibiotics and no issues so far. Keeping fingers crossed.

He had upper and lower GI endoscopy on Friday, and the doctor saw nothing visible to suggest Crohns, and no signs of ongoing infection or inflammation in the area where it was previously seen on CT. Although we will have to wait and see what the biopsies show.

Next step is to have him swallow a capsule camera, (to take pictures of the entire length of the small intestine). And an MRI of the intestines to detect any other abnormalities.

At least this happened early in the year. Although the bills haven't hit yet, I'm assuming we are well beyond our out of pocket max - so any other tests or treatments he receives should be 100% covered.

I only saw this post yesterday and was wondering if you can give us an update since he is done with his antibiotics? No pressure if you're not ready.

I hope he has smooth sailing from here on out. We are here to support you.
carol

Hi Pinkynose. My son is back at school and doing pretty well. All the biopsy results were negative, so we still don't know what's going on with him. His course of antibiotics is done, and he hasn't had any side effects - (at least not any short term ones). He is coming home in two weeks to do the MRI on his intestines. Then most likely they will do the capsule camera procedure when he is done with school in May.

Already over $30,000 in medical bills - and we still know nothing other than he had an infection. Its starting to seem a lot like trying to figure out what causes my SFN symptoms.

If he had the Cipro.... remind him of the tendon rupture potential.
This can happen in the future... so remind him to not strain any muscles or do extreme athletics.

Thanks for the reminder - I had forgotten about that side effect. Not too much of a concern with this kid though - he isn't into any heavy duty sports. His exercise is mostly of the low impact/aerobic type (and not as much of that as he should be doing).