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09-12-2014, 10:23 AM   #1
Kels
 
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Join Date: Sep 2014
Location: Massachusetts
Sick on Remicade

My daughter is 13 and has Crohn's disease, celiac disease and diabetes. She has been on remicade since the start of the year. After a few months she became sick with penumonia. About two weeks ago she got a cold that turned into bronchitis. She finally began feeling better from that a few days ago but woke today with a headache and sore throat. I'm worried it could be strep and making an appointment to be seen today. She is still on antibiotics from the bronchitis so I'm a bit skeptical it could be strep but my niece and nephew both have had it recently. I feel so bad for my daughter and if it didn't help her crohns symptoms tremendously I would get her off of remicade. I'm also thinking illness is hitting her so bad because she was ill for several days after an accidental glutening and school started and she's been around germs. I'm so tempted to take her out of school. I'm terrified for what winter will bring. Has anyone one else dealt with this much sickness on remicade?
09-12-2014, 10:41 AM   #2
David
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Welcome to the community. I'm so sorry to hear about your daughter. My heart goes out to you and your entire family.

Remicade can certainly do a number on the immune system. But as you say, if it's working wonders for her Crohn's, then taking her off of it is probably a bad idea.

So let's focus on what we CAN control. For example, people with Crohn's disease are VERY commonly deficient in vitamin D, zinc and magnesium, all of which are absolutely integral for a healthy immune system. Have you had your daugter's vitamin D and zinc levels checked? If so, what were they?

All my best to you and your daughter.
09-12-2014, 10:58 AM   #3
Kels
 
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Welcome to the community. I'm so sorry to hear about your daughter. My heart goes out to you and your entire family.

Remicade can certainly do a number on the immune system. But as you say, if it's working wonders for her Crohn's, then taking her off of it is probably a bad idea.

So let's focus on what we CAN control. For example, people with Crohn's disease are VERY commonly deficient in vitamin D, zinc and magnesium, all of which are absolutely integral for a healthy immune system. Have you had your daugter's vitamin D and zinc levels checked? If so, what were they?

All my best to you and your daughter.
Yes, my daughters vitamin d has been low despite taking a supplement once a week. I'm not sure about the exact numbers , I'd have to get my copy of her latest blood work. As far as zinc is concerned, I have no idea. None has ever mentioned it. Her iron was good at last check which is great because she was anemic in the past. Thanks for your reply. She was so determined to have as few absences as possible this year and now has missed 6 days already.
09-12-2014, 11:36 AM   #4
David
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How many IU's of vitmain D does the weekly supplement contain?

I would strongly suggest requesting her zinc level be tested. Please do not blindly supplement it.

Serum magnesium testing isn't that useful in my opinion because the body does what it can to maintain a tight level of serum magnesium to the point of stealing it from other areas. It's the only mineral I personally suggest supplementing blindly (but under the care and approval of a doctor). Even an epsom salt bath a few times a week can make a difference there.

I'm also going to suggest that you begin closely tracking ALL of her lab reports so you can monitor trends over time and help advocate for your daughter.

We're here for you
09-12-2014, 01:58 PM   #5
Kels
 
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Her last vitamin d level was 21.80 taking 50,000 once a week
09-12-2014, 02:04 PM   #6
David
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If she was on the 50,000iu prior to the 21.80 result, then she definitely needs something changed up. At minimum, I like to see people with Crohn's have a vitamin D level of 50ng/ml (but prefer 75-95).

I strongly suspect that if you get her level above 50ng/ml and keep it there, that she will be sick less often. Here is an interview I conducted with Dr. Cannell of the Vitamin D Council regarding vitamin D and Crohn's which may be of interest to you: http://www.crohnsforum.com/showthread.php?t=48140
09-12-2014, 04:11 PM   #7
Mehita
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Just wanted to say hello. My son also has Celiac along with Crohn's. Fun, isn't it? Never knowing if it's gluten or flaring. For a long time we thought he was accidentally getting glutened. Nope, small bowel obstruction.

I'd also second what David said about getting levels checked. My son is on Remicade, but probably the healthiest in our family. He does 2,000iu of D a day. I'm not saying that's the answer for you, but def worth investigating. Here's another article that might interest you:

http://articles.mercola.com/sites/ar...-part-one.aspx
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
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