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  1. C

    Sibling being evaluated

    Aw thanks but actually T got the psoriasis while on MTX. Same with O. When we took them off it made no difference. Actually now that I think of it taking O off Remicade made no difference with hers either. Tacrolimus didn't help but steroids calmed it down a good amount. Kills me that some...
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    Sibling being evaluated

    T had her check in appointment today. Her cal pro is 65! Lowest it has ever been in a long while. Got that result with no change in therapy whatsoever! Now fair disclosure, we did let up on her diet some over spring and summer given softball and mommy the diet drill sergeant being in the...
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    Heard from Doc today

    You are soooo right PDX! EVERY doctor kept saying that...she looks so much better than the numbers and what we see in the toilet. How is she even standing?! I think he did learn his lesson because this week's update was basically: weight stable 7-8 BM's a day about one a day with blood...
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    Heard from Doc today

    Thanks MLP! That means a lot to me! I know you guys were all there with me in mommy survival mode! It never ceases to amaze me how much we could all care for kids and parents who we have never even met let alone who only have code names;)
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    Heard from Doc today

    I debated posting this but I am going to go ahead and share in the interest of sharing what I have learned. I was at the GI with my other daughter today. Her appointment was completed and he asked to speak with me alone about O. He said because O wasn't there and because I seem to be very...
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    Hot Flashes

    Yes, when my older daughter is in a flare she gets night sweats also. But this was during dinner, I swear she looked like may mother did when she went through menopause. 😂
  7. C

    Hot Flashes

    Has anyone gotten hot flashes in the middle of the day? I have two teen daughters with Crohn's. Years ago my older daughter (20) got hot flashes before she was in remission. We mentioned it to GI and he fluffed it off saying it wasn't Crohn's. Now my 16 year old has had a few recently...
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    Just looking for some advice

    I also would support a visit to a GI. Could be IBD but it also could be a number of other things. Either way, what you are experiencing is not normal. You may want to call the office and explain the situation (weight loss etc) and see if they could squeeze you in or at the very least put...
  9. C

    My story

    Are you in the U.S.? Most US insurance companies have a mail order pharmacy option where you send the script to them and they mail you three months of the medicine at a time and will automatically refill the prescription before you run out.
  10. C

    My Story

    Got the tag. We decided to ditch Remicade for my daughter in April because it just stopped working. Entyvio is painfully slow to work. Quotes are 12-26 weeks. As a matter of fact there is a lot written that if it doesn't work by 12 weeks you should move on. However, mist GI's will try it...
  11. C

    Heard from Doc today

    O's cal pro results posted and it is down to 440! WOOHOO! Lowest it has been since January. Entyvio MUST be working! We must just have to wait a little bit for the symptoms to all resolve (still going 8 times a day and half the time liquid only a handful of time visible blood). Now the one...
  12. C

    100mg imuran for a 13 year old boy. Suggestions please!!

    I am guessing Boston's opinion will be to switch to MTX based on what they told another mom here recently. The thing is, if you change too many things at once, you won't know what is really helping. So I "might" stick with the Imuran for a little bit and wait to see what happens. Whether...
  13. C

    Overwhelmed

    Not immature in the least! I still go with O, although I think she wishes I wouldn't. I personally think that anyone with a chronic illness should bring someone with them to appointments. A lot gets discussed and you sometimes miss bits or pieces or hear things differently so having an extra...
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    Hair loss

    https://dansharpibd.org/telogen-effluvium/?ak_action=reject_mobile
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    Overwhelmed

    Hey Girl! I have a 19 turning 20 year old Crohnie daughter who was also dx'd at 11 1/2! She is away at college and also just switched her med to Entyvio and it is 21 weeks later and we still aren't sure if it is working. She also went to school her freshman year in a flare ands been in one...
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    Heard from Doc today

    Thanks Maya! She is doing great. She REALLY thrives at school and NEEDED to go back. Her 6 classes seem to be going well as is swimming (still only once a week). But in true O fashion she has decided to apply to be a volunteer with a group at school who mentors young adults with special...
  17. C

    Heard from Doc today

    Another week, another update! Weight is stable. BM frequency had gone down to average of about 6-7, blood down to 20% of the time and night wakings down to half the time. However, over the past three days she has been up to 9-15. More liquid and a tiny bit more blood. Infusion was...
  18. C

    Calprotectin 926, Sed Rate increased

    Well it is a totally different molecule so there is a good chance he won't have an allergic reaction so I can see the GI saying it isn't necessary but as a mommy, I would feel better premeditating so I would go for the Tylenol/Benadryl. Although, I think MLP once said that most kids get IV...
  19. C

    Oral Vancomycin study

    Even the authors say as much in their conclusion. It was a very small study and was a prospective study using chart review and they therefore say, further controlled studies are warranted. One other caveat to interpreting this study is that improvement is very heavily referred to as symptom...
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    Oral Vancomycin study

    O tried it this past summer during one of her hospitalizations and continued at home after. Even with Entyvio and steroids it didn't work for her. She was switched to the triple antibiotic therapy for three weeks (still on Entyvio andvsteroids) and that didn't work either. When the GI's...
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