Supplements Club

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with supplements, in all their forms...oral, sub-lingual, nasal, IMI, IV.

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the supplements path and hopefully by answering them newbies to supplements will have many, if not all, of their questions answered.

1. Was your child prescribed supplements, did you initiate them or was it both?

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

3. Where is your child's inflammation located? Small intestine, large intestine, or both?

4. Does your child take other IBD prescribed medication? If so what?

5. What supplements does your child take and why?

6. Have the supplements and dosages been changed over time and why?

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

8. Do you have any brand preferences?

9. Are there any preparations that need to be made to make the supplements easier to take?

10. Is there a time of day that is preferable?

11. Do you think the supplements make an overall difference to your child’s well being?

12. If your child is supplemented due to deficiency in any of the vitamin and minerals are their levels monitored and how often?

13. How is the cost of the supplements covered?

14. Any other tips or information?


Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Vitamins and Minerals article located here in the wiki. There are also other articles located in the wiki that cover other supplements used in IBD, just look under the appropriate letter in the sort articles function. The Diet, Fitness and Supplement forum, located here, is also a wealth of information.

Dusty.

 

[DustyKat]

I am not fully up on what Sarah is doing with supplements so this will pertain to Matt.

1. Was your child prescribed supplements, did you initiate them or was it both?
It was a combination of both. Between the GP and GI and prompting from me we arrived at the supplements he is now on.

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn’s Disease.

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Ileum only.

4. Does your child take other IBD prescribed medication? If so what?
Imuran and Pentasa.

5. What supplements does your child take and why?
He takes B12, Vit D, Magnesium and Zinc due to deficiency.
Turmeric was commenced at the recommendation of the GI.

6. Have the supplements and dosages been changed over time and why?
Yes. Vit D and Magnesium have been increased to maintain optimum IBD levels. Zinc has been decreased due to levels being too high.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No.

8. Do you have any brand preferences?
With Magnesium, Zinc and Turmeric I have searched out the preparations that provide the ingredients for optimal absorption. Hence they aren’t the cheapest.

9. Are there any preparations that need to be made to make the supplements easier to take?
No.

10. Is there a time of day that is preferable?
Not really but being on psyllium we do ensure they are taken away from the times the psyllium is taken. Also for the Vit D and Magnesium I split the dose to twice daily.

11. Do you think the supplements make an overall difference to your child’s well being?
TBH I don’t really know as he commenced them all when in remission but he has stayed that way for 3 years now so perhaps they all play their own part in it. Plus I would have to think that supplementing to deficiencies must make a difference and that if we didn’t his overall health would suffer, if not immediately certainly further down the line.

12. If your child is supplemented due to deficiency in any of the vitamin and minerals are their levels monitored and how often?
Yes. Levels for B12, Vit D, Magnesium and Zinc are done every 3 months.

13. How is the cost of the supplements covered?
B12 is covered by the PBS. Vit D, Magnesium, Zinc and Turmeric are all OTC so are out of pocket expenses.

14. Any other tips or information?
I would recommend that anyone with small bowel disease have levels done for:

• Iron Stores
• B12
• Vit D
• Magnesium
• Zinc

If they are normal then continue to monitor at least annually.

 

[upsetmom]

1. Was your child prescribed supplements, did you initiate them or was it both?
Yes she was advised by the GP, GI and the Dietitian.

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Throughout the whole large intestine.

4. Does your child take other IBD prescribed medication? If so what?
Imuran and Pentasa

5. What supplements does your child take and why?
600mg Calcium with Vitamin D because not enough dairy is consumed.
Iron due to low Ferritin.

6. Have the supplements and dosages been changed over time and why?
Calcium hasn't been changed.
Iron has been stopped for the time being.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
Not with the calcium.
Waiting to talk to the GI as the iron supplements caused stomach cramps and diarrhea.

8. Do you have any brand preferences?
Caltrate calcium with Vit D

9. Are there any preparations that need to be made to make the supplements easier to take?
No

10. Is there a time of day that is preferable?
No

11. Do you think the supplements make an overall difference to your child’s well being?
Haven't noticed anything with the calcium.
Iron wasn't taken for long.

12. If your child is supplemented due to deficiency in any of the vitamin and minerals are their levels monitored and how often?
No testing done yet as they were recently started.

13. How is the cost of the supplements covered?
Own expense.

14. Any other tips or information?

 

[Tesscorm]

1. Was your child prescribed supplements, did you initiate them or was it both?
S was on nexium for a year after diagnosis, while on nexium, GI recommended calcium supplements. I added vit D and krill oil.

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Mainly terminal ileum (when diagnosed, also had small patches in his duodenum and large intestine).

4. Does your child take other IBD prescribed medication? If so what?
First two years, enteral nutrition only (exclusive - 6 weeks, then maintenance only). Now on remicade.

5. What supplements does your child take and why?
2000 IU vitamin D
1000 mg krill oil

6. Have the supplements and dosages been changed over time and why?
Calcium stopped when nexium was discontinued.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
Krill oil comes in 500 or 1000 mg capsules. Intially, he found taking 1000mg at one time caused looser BMs. We cut the dose to 500mg once per day, then 500mg twice a day. Now he takes 1000mg capsules, once a day, with no problem.

8. Do you have any brand preferences?
Vitamin D - liquid supplement but not sure of brand
Krill Oil - Neptune

9. Are there any preparations that need to be made to make the supplements easier to take?
No

10. Is there a time of day that is preferable?
Before bed, for convenience only

11. Do you think the supplements make an overall difference to your child’s well being?
S started the supplements very soon after diagnosis. Hard to say if they have made a difference, however, as he's doing well, have no intention of rocking the boat by stopping them and the supplements certainly aren't causing harm.

12. If your child is supplemented due to deficiency in any of the vitamin and minerals are their levels monitored and how often?
Iron levels and B12 tested every three months
Vit D, calcium and magnesium tested approx. once per year.

13. How is the cost of the supplements covered?
Own expense.

Note - as S's treatment for two years was supplement enteral nutrition, he was, to a degree, taking in a very varied supplement. Since beginning remicade, he discontinued his supplemental enteral nutrition (1500 cal/day, elemental formula) but continues with one to two Boost shakes each day - so still receiving a very varied range of supplements. As with his vitamin D and krill oil, I can't say with certainty this has made a difference, however, it ensures he continues to receive a minimum of many nutrients. I also read a study (in Parents' research section) that combining enteral nutrition with remicade increased remicade's success rate. (However, the study showed these results came with enteral nutrition at 1200 cal per day - S is only taking in 250-500 cal/day so not sure he's gaining this 'benefit' but, like the other supplements, it can't hurt...)

 

[Lindseyw4]

1. Was your child prescribed supplements, did you initiate them or was it both?
My child was prescribed supplements by his GI about 6 months ago.

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Both

4. Does your child take other IBD prescribed medication? If so what?
Yes, he's currently on 6mp for maintenance med, but we're costing switching to remicade or humira due to worsening perianal fistula. Currently taking Vanco also for C. Diff. This is our second round of antibiotx after flagyl.

5. What supplements does your child take and why?
Target Children's Multivitamin--not sure why, i guess just for good measure
Viactiv Vitamin D--deficiency
Natures goodness (?) probiotic gummies--General gut health
Target Omega 3 gummies--General gut

6. Have the supplements and dosages been changed over time and why?
We previously had an iron supplement which we stopped once his iron levels were agreeable. However we may need to start them again since iron levels are dropping.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
None

8. Do you have any brand preferences?
My son really likes the target brand multivitamin, compared with the target brand omega 3 supplements. It's smooth, as opposed to covered with sugar. I wish the others could be like that. My son says the viactiv chocolate chews are too chewy. I'd like to find a multivitamin that also has omega 3.
9. Are there any preparations that need to be made to make the supplements easier to take?
No preps

10. Is there a time of day that is preferable?
Since we've added the multivitamin, my son prefers to take 2 supplements (4 chews) in the morning and 2 in the evening, since it takes him a while to consume them all.
11. Do you think the supplements make an overall difference to your child’s well being?

12. If your child is supplemented due to deficiency in any of the vitamin and minerals are their levels monitored and how often?
We've been monitoring therapeutic levels for 6mp every few weeks, so levels are checked at least once per month.

13. How is the cost of the supplements covered?
When we were on iron, that was covered through medicaid. Otherwise, they're out of pocket expenses.

14. Any other tips or information?
I have doubts the vitamins are making a difference. I'm interested in learning more about VSL3, since I've heard claims its the only clinically proven probiotic to work.