September 27 2026

Recently I have been diagnosed with Severe Enteric Nerve Damage.

It has been a long journey to get this diagnosis and even longer to try to help it. I am going to tell you a little about it. first I’ll warn you that I am very sensitive about this and I have to be very brave to wright this right now but I want you to know.

About 7 months ago I got my first big stomach ache it didn’t last long so I ignored it but for the next week I got increasingly more painful and more frequent stomach aches. we went to my pediatrician but they couldn’t find anything wrong but the it got so bad we went to the ER the said i was constipated and told me to have this poop softener called MiraLAX. I went home and we had to go right back to the er the next day. They admitted me to give me even more MiraLAX. By then my stomach aches were constant and more painful than ever and the MiraLAX seemed to only make it worse.

They sent me home saying that I was cured and to take a bunch more MiraLAX. 2 days later I was admitted again for more MiraLAX and an endoscopy, colonoscopy, and lots of blood tests and IV Tylenol. Everything came back normal, so once again they sent us home saying I was fine but we all knew I was definitely not fine so we went to Children's Hospital of Philadelphia which is known to be the second best hospital in the country. I had more blood tests and poop tests and x-rays and so many other tests. By then we had figured out constipation was NOT the only thing wrong and the MiraLAX was making whatever it is worse.

But through all the tests even the second best hospital in the country couldn’t figure out what was wrong with me. by then I was feeling really discouraged and we went home with the hospital thinking I was making this up and me and my parents knowing we were going to have to do this by ourselves

The next few months were a blur of every test possible, I was in bed all day everyday and still nobody could figure out what was wrong, Until we met Dr. Kaiser and he looked at all my tests and said he’d seen this before where everything is normal but there is no way to test for nerve damage so a lot of doctors just pretend it doesn’t exist.

So the good news is we had a diagnosis but the bad news still was we had no idea how to fix it. Then we transferred from tests to treatments. The thing about nerve damage is you cant just take a pill and poof it is fixed instead it is a lot of things including having a super strict diet like my meals were usually a super healthy smoothie, an IV or on good days fruit and broth, also as much sleep as possible is really good though that was hard for me because using TV as a distraction helped in the short term but not the long term, also what helped so much was Acupuncture it is a Chinese Medicine treatment where you put a lot of small needles in specific places. Though even with all of the things that help it takes months and I’m still not completely better.

This illness is not who I am and please don’t restrain or dumb things down for me because of it.

Thank you for reading it really means a lot.