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I am very sorry that you are going through this all. If you have not seen a cardiologist, that would seem to be an urgent consultation given your heart rate and chest pain. Can you go to your doctor or the emergency room with this complaint in order to get faster attention? Blood cortisol...

I'm sorry I haven't read every post on this thread. I do not understand why your doctor thought the Cushing's syndrome was due to anything other than the steroids that you were taking. From what I read, you were on steroids on and off for a year and consistently on 30 mg prednisone since April...

I thought others might be interested in this. This is from Aetna (a major insurance co in the U.S) Site of Care The first dose of the medications subject to this policy may be given at the physician’s facility of choice. This includes hospital outpatient facilities, non-hospital outpatient...

My son just moved to another city and the nurse just called him and said that his insurance wanted him to do home infusion too. I had never heard that was an option. I'd like him to continue to go to an infusion center. Sounds like insurance companies are pushing home infusions now. Does...

If you speak to the nurse who works with the doctor and let her/him know about the wait and your concerns, it is very possible that your doctor can get you an earlier appointment.

"The CDED is not in the public domain, the researcher noted, because three randomized trials of the approach are now underway. Dr. Levine said he and his colleagues want to finish the trials and better understand the effects of the diet before publishing it." Can't wait to see the results of...

How tall are you and his other parent? Reading a bone age isn't an exact science. Do you know who read it-- a pediatric endocrinologist or a radiologist? Did they do a test where they gave him drugs to stimulate GH or did they check GH every so often during the night? Diagnosing GH deficiency...

One can grow until one's growth plates close. The bone age not the chronological age determines that. Puberty is what ultimately closes the growth plates. Do you know his bone age? Has your son began puberty? How long has your son had symptoms of Crohn's? What height percentile and weight...

@Emilymc13 Please check to see they are comparing the calprotectin results with normals for age. I'm pretty sure that babies can have much higher levels than children or adults. reference https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4351193/

What is your son's length? It would be useful to see his growth points on a growth chart. Does your doctor put the growth points on a curve? Growth curves can be very informative. He should definitely be gaining weight and growing in length at this age. Children at this age don't normally...

I just wanted to add that my son was on budesonide and when he tried to wean it to 3 mg (from 6), his symptoms recurred.

You wrote "The results came back negative, for crohns." Do you have the biopsy report? If so, can you post the findings. If not, please find out what it says. It is very important to know what the pathologist found. If there were ulcers, it is unlikely that the biopsy was normal. As MLP...

Hope your GP can help. I would call the urology dept again if you don't hear back soon. Will be thinking of you.

I'm sorry you are dealing with this and wish you had easier access to a doctor. Is there no way for you to call the urology group that put the stent in to ask about your symptom? Where is the pain and what kind of pain is it? Any fever or other symptoms? Has your need to urinate or the volume...

Platelet dysfunction (with normal number), clotting factor abnormalities (usually have bleeding too), vasculitis, vit K deficiency (can be due to gi problems like IBD or medications), vit c deficiency, steroids and other meds (NSAIDS) among other things can cause bruising. Are her bruises...

Is she doing any better? Did you get an apt with Hematology?

My son is 23 and has been on Remicade for 2 years and it has worked very well with no side effects except fatigue the day and the next day after the infusion (knock on wood!). He has gained weight and energy and feels generally well with very occasional minor gi symptoms. I hope it works well...

If they repeal it, they will need to replace it immediately or there will be a backlash. As far as I can see, no one has a realistic plan to replace it but time will tell. My son (23) is on his father's insurance plan. My son is working full time but doesn't get health insurance at work so we...

Encopresis is usually a symptom of chronic constipation. It can sometimes present when there is extra stress or emotional issues or dietary changes. I understand your concern given family history and the weird ways that IBD sometimes presents. When there is chronic constipation a clean out is...

So again I give this disclaimer that I know extremely little about lymphatics or lymph disorders. I found a few papers and I saw there can be bony involvement in some people with lymphatic issues. Here are the papers.http://jpediatricsreview.com/en/articles/4790.html (too complicated for me to...