Search results

Hi. I don’t think you have to hide, but do you have to tell at this point before you get it? Sure any chronic disease is a part of who you are but only one part; plus I can’t think of an MA where your personal experience with a disease might be an advantage or even relevant. Why do they need to...

He has seen a Rheumatologist. I'll follow up with him on whether it could be the EDS. Interesting. These kids have so many different issues. It is all related? Recent allergy testing showed problems with many of the things he avoids with SCD. Trainers and an ortho wrote off knee pain (BOTH...

Hi Jtb3. I am sorry about the diagnosis and that is a ridiculous cost! When my son was first diagnosed I spent weeks up almost all night trying to find a holistic approach that had some proven effectiveness, but there is none. Even for most of the case studies I found, the patients reported...

Thank you both! Now that I am dealing with the EDS and maybe some early issues with pain in both knees, it is hard to keep track of what is causing what. So much of this is linked. I'll hope dr calls early this week.

Latest MRE shows nothing in way of Crohn's etc. However, spleen is slightly enlarged. It was slightly enlarged 2 years ago and has increased a bit. Has anyone seen this? Have not talked to GI, just read report online. Quick scan of articles and journals isn't conclusive although there is much...

How is Caitlin? I wish I lived in your city so I could come give you a break for a nap or whatever you need. Or maybe even attempt to help homeschool your other kids for you one day? 😊 Sorry. This has to turn around for her and you.

Hi Clash. I am so sorry to hear about this. I'm checking every day for an update. My son has complete villous atrophy at diagnosis. That, along with a few other things, raised possibility of a couple of rare IBD's as a secondary diagnosis. One was autoimmune enteropothy. Fur whatever reason...

Diet is hard. My son is only slightly picky and even then he gets tired of same things over and over. It really requires a mind set shift, to think of food as nourishment versus tasty or enjoyable. I think he does some Extra EN sometimes when he isn't interested in his food options. I'm not...

I'm very impressed that she has done the 80/20 for so long and thrilled that it works at least for growth. Are symptoms improving? How about scopes/biopsies? 80/20 was suggested for my son at one point. If you do the math that is really only 4 meals a week regardless of whether they drink or...

Does your child do Fcp? My son is on SCD and partial EN for maintenance, but only after he got into remission with massive steroids and EEN. The only way his drs at two hospitals, one who is a diet researcher and the other not a fan, will see him is if he gets labs you mentioned at least every 3...

Hi. I'm sorry to hear about your daughter. I have a teen boy who gives us some of the same fun about treatment. I think it is harder to be diagnosed as a teen because you remember life "before" so well and maybe the still developing frontal lobe can't quite grasp that this is the way things will...

How is Caitlin today?

Hi. i know many GIs are confident in FCP test but my son is an outlier. His result is never higher than several hundred even with massive flare and hospitalization. He can be in low side of normal and still have inflammation in biopsies. His crohns is throughout the tract. Go figure. He still...

Rippmama I have one who was diagnosed years ago. A second who is being watched and hopefully scoped soon. I'd bet money he has it also, now that I look back on history with first son. Two others kids seem fine. Although one did recently have a week where she had pain in LRQ. All I could think...

I'll go check ours, but I recall: Copies of teacher notes Audio books when available (I thought this was weird when school suggested but when flaring is helpful) Access to refrigerator Ability to rest in nurse office if needed during an art, language, PE, recess, non-core class You want...

Thank you! I am in US, but my husband works some in Canada. I like to read about Ontario Health just to see what is going on. Trends for care and coverage generally go in same direction, eventually. I did get some push back on vitamin d test recently from what had been a robust insurance...

Tesscorm What labs do they run then if they don't track AST? ALT and AST are both part of CMP. My son (unusual case, I know) has CMP run once/3 months. I expect that insurance will eventually push back on his quarterly FCP but hopefully AST isn't up on chopping block.

Coolbeans, did you find a formula? And I'll take any tips for coercing bc we have hit a wall here. Even though my son knows his EN driven group of treatments are keeping him in remission, he is refusing to drink, tube, anything. Teens. I think I am going to try to bribe slash incent dr...

I'm smiling at this. My son says Neocate Jr all tastes fried!

I'll join in for that prayer!. I hope you get the call for appointment soon. I can't imagine the daily pain she lives with.