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Hi Everyone, I haven’t updated in a few weeks. Caitlyn went to be evaluated for the inpatient program at Children’s specialized hospital in NJ. They at first were hesitant because of her G tube but then they had a long conversation with her pain management doctor who spoke with their head...

Our doctor won’t. I asked about it. He feels adding lidocaine is not safe.

I think the youngest I have heard was about eight months old.

I keep asking our doctors and the pharmacy about it. My daughter really suffers with the shots praying it is here soon!!!

Glad to hear!!!! Grace is going to love it!!! So excited for her!!!!

I would definitely ask them to repeat it and keep an eye on her. I totally missed that she had her appendicts out. Hope she is doing better.

MLP, This is for kids and these are parents of kids with IBD who are claiming that their doctors said their kids will be able to come off of meds once in remission.

Hi All, I am having a little debate with some people on whether really going off of meds once you get into remission is a viable answer for our kids. (I say it is not and they are arguing that there are some people who are successful with it) And whether you can maintain remission just through...

Great news about getting a date for scopes! My older daughter is also one of those with normal Labs all the time. Fecal calprotectin is the only test that works for her.

Glad it is over and done. I can’t believe they only want him to take Tylenol for the pain. This whole limit the narcotics thing is really getting out of hand. Hope his pain is controlled and he heals quickly!

Carolin, I was off for a few days and just getting back to this. We went to Columbus Ohio to see Dr. DiLorenzo at Nationwide he was really great. I recommend it. We are also dealing with both EDS and IBD.

Sadly they have done nothing for her headaches and yes they are totally inflammation related.

Maya, She has gained two pounds since the tube was placed. The pain is in her lower back and radiates upward. It seems to get worse as the day goes on but she does wake up with it. It hurts worse when moving or standing up. The ortho said if he doesn’t find anything he will send us to rheum. But...

I haven’t updated on Caitlyn in a bit. She is going to have an evaluation at the program for pain in NJ. There was a lot of back and forth between her doctors and them and they finally decided they think she can do the program. I am glad they seemed to have reviewed everything really thoroughly...

I am so sorry to hear about this. Hoping the PA is correct and she heals quickly!

Crohnsinstint, She is only 9 so shouldn’t be getting cysts. The NP we saw this time had some ideas that the pain could be from trapped has because she has constipating Crohn’s disease. We are trying this new culturelle product that helps with regularity. She has had three doses so far and is...

Caitlyn was on amitryptalline for years and now nortriptalline. No side effects other then it makes her a bit tired so she takes it at night. Hasn’t helped her headaches though.

I second Maya. Why didn’t he want to try adding methotrexate or something? I hope he can get her flare under control quickly. It is hard when her school is so far away.

We love homeschool it has been a blessing especially for kids with health issues. Hugs in having to wait. I know it is not easy. Hoping they get some cancellations and can get him in sooner.

Hoping it helps!