My 9-year-old daughter has Crohn’s.

Question

My 9-year-old daughter has Crohn’s. She has also tested positive for a Lyme-specific band on western blot but is not CDC positive for Lyme. we have not tackled that yet. A couple of years ago, before diagnosis and before I knew better, she was on Miralax for a few months. Our pediatrician was able to get her off of that by supplementing magnesium. She now sees a nutritionist who specializes in Crohns. He has not mentioned magnesium, and didn’t seem overly concerned when I did. I have continued using mag oil on her feet (honestly, when I remember – which is most days) but that’s it. I should mention that she also wets the bed every night 0- the only time that slowed down was when she first tested positive for the Lyme band and was on amoxicillin for a few months. Thoughts or suggestions?

in progress 0
Eileen 3 years 0 Answers 754 views 0

Answers ( No )

  1. no hair test….we have been focused on the Crohn's the last few months (and still are) as she continues t have symptoms despite her numbers coming down. What thyroid tests do you mean?

  2. For us the iodine test was a standard one, nothing expensive or specialized. I'll try to find details.

  3. Is she constipated? That can cause bed wetting. Also B12 deficiency can be the culprit. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302062/

  4. Thyroid labs… FT3, FT4, TSH, RT3, and antibodies if tested: TSI, TPO, and thyroglobulin

  5. I would do the hair test for sure

  6. Here;s what I have from October:
    TSH 6.48
    T4, total 7.2
    T3 uptake 27
    T4, free 1.9
    T3, total 140
    T3, free 4.0
    thyroid peroxidase AB 2
    thyroglobulin antibodies 2

    Her magnesium level was 2.2
    copper 115
    zinc 81
    B12 1276

  7. What exactly does the hair test show and how do I do it?

  8. JenniferI mentioned earlier that she goes to the bathroom every day. She had a urologist a few years ago who thought it was that but it wasn't

  9. Most recent vitamin D level (February) was 42

  10. Aquawhat are these particular tests for?

  11. What do I tell my ped?

  12. research Castor Oil the healing properties are amazing I believe it can help.

  13. Eileen Tuite, you can order a hair test here and get a consult with an HTMA practitioner to explain everything.
    http://gotmag.org/work-with-us/

    Mineral imbalances can cause all sorts of health problems. The hair tests are a very good way to look at mineral imbalances in the body…it is it is not too expensive, AND no need to draw blood.

  14. A regular pediatrician will not order this hair test…. physicians that specialize in care for children with special needs (called MAPS doctors) will order… but not a regular mainstream doc. Many of us just pay out of pocket and order on our own

  15. My ped is integrative and amazing. If he doesn't order it, he will at least look at whatever info I give him and educate himself.

  16. Are you supplementing B12? If not, I suspect lithium deficiency (which you can see on the hair test). That B12 is kind of high if you are not supplementing…and might mean that the B12 is floating in blood, but not able to get into cells (so it looks high, but she may be functionally deficient). I would also consider doing 23&me genetic testing to see if she has MTHFR mutation or other mutations in methylation pathway.

  17. Magnesium is a relaxing mineral. The body fully relxes about 90 minutes into sleep. If she hasn't voided completely before going to bed, that could be the issue. Otherwaise, give her Mg during the day and not before bed.

  18. At the time of this test she may have been taking sublingual b12. I don't remember when I started her on that. She is compound heterozygous for MTHFR. We are waiting for 23andme results

  19. On your bloodwork, the copper is high and the zinc is low. If you haven't already, I would ask your doc to include ceruloplasmin on next blood draw to see what the free vs bound copper is. Also a few more of those labs that someone posted above with codes… like ferritin, RBC Mag (not serum which I think is what you posted above), Vitamin D 1,25.

  20. I have ferritin. Hang on

  21. Curious what you are supplementing now…. especially curious if you are supplementing Vitamin D.

  22. Following

  23. if she is wetting the bed she is lacking potassium aluminum sulfate

  24. Ferritin was 37
    She takes a multi (partial – serving size is 6 pills and she takes 1), 5-MTHF, 4000 IU of Vit D/K2, DHA supp

  25. Her Vitamin D had been low in the past and that's why she is on 4000 units

  26. Eileen Tuite, you probably just joined this group… I was wondering about the D, because even though MANY functional docs still prescribe high doses of D, this group is of the opinion that this can lead to problems, one being mag deficiency. Let me link a few articles for you…

  27. Isolated D is not recommended here, Eileen Tuite pllease also read this summary page and get the Magnesium RBC and other blood tests done.
    http://my-magnesium.com/hormone-d.html

  28. EVERY doctor has recommended D for her. Ugh I am not feeling well so I will come back and read these tomorrow. I don't know what todo wih so many different recommendations

  29. Find a GAPS certified practitioner if you can. It doesn't sound like your nutritionist is very keen on current recommendations. (((HUG)))

  30. I have a friend who has crohns. She says that LDN saved her life! Just FYI. And there does seem to be very knowledge folks here so just take your time and read the articles. I pray your daughter gets some relief soon!

  31. LDN = low dose Naltrexone. Learn more here
    lowdosenaltrexone.org

  32. If not active antibiotics may not be helpful…autoimmune protocol needed….

  33. misty her nutritionist specializes in Crohn's and has been doing this for 35 years. I will certainly show him the info on D and magnesium but the changes he suggested brought her numbers to normal within 10 days.
    Pamela nutritionist mentioned ldn and I am waiting for my ped to review some literature. Her previous GIs would not even consider it

  34. Eileen Tuite I would base my doctors expertise on if she is getting better. If she is continue the doc recommendations. If she is not find another or take the advice here.

  35. That's what I'm doing. I didn't post here about her Crohn's -aside from saying that she had it. I have questions about the mag and the bedwetting. I will certainly look into the vitamin d though.

  36. Sending pm Eileen Tuite

  37. Eileen Tuite if you ever need help finding a Lyme doctor in NY PM me and I'll give you the names of a few groups where you can ask. If you could find a functional GI they would probably be able to handle all of it through their office. So expensive, wish functional doctors were covered by insurance.

  38. sorry, did not read all, but I took notice that bed wetting is a symptom often listed for mag deficiency, and mineral imbalance,

  39. Janice I didn't get a PM?
    Margaret I actually have a name of a fairly affordable LLMD a few hours from us…a long drive but worth it since he is not as costly and comes recommended from a friend. I have been holding off, as I would like him to seer me too, since I test positive for the same band as my daughter. Calling tomorrow

  40. For us, bed wetting was cured by no dairy after lunch. Milk sugars irritate some people's bladders, or so I recall reading.

  41. Yes some food intolerants could be causing the bed wetting. When I ate a banana after I became sensitive to it, I had to run to the bathroom every five minutes literally as it irritated by bladder that much!! A food allergy panel (blood) might be in order.

  42. She has had food allergy testing done in the past and is off everything she was positive for and then some…

  43. Sorry to hear about this. My hubby has crohns, and has suffered greatly. I recommend keeping her well nourished with bone broths with extra collagen and gelatin. No candy, soda and sugary junk. Good suppliments, esp the b vitamins. Look into iodine; in small doses would be good too. Honestly, you have a major fight before you. You are going to have research everything, and doctors will be of virtually no help, esp when it comes to nutrition. Good luck!

  44. Please look into the group Trying Low Oxalate on FB, Leaky gut (Crohn's) and bed wetting and especially antibiotics use are indicators of having high oxalate. Learning about a low oxalate diet is turning my life around, and anyone with Crohn's ought to investigate LOD.

  45. Aqua Gnomie you posted a list of blood tests with CPT codes….what are these all for? In other words, I'm not going to tell my ped, "She is wetting the bed and I want all these tests down."

Leave an answer

Browse
Browse

Captcha Click on image to update the captcha .