DS is sensative to EVERYTHING!!! What next?? - Page 2

[mamafish9]

There are some supplements that are anti-inflammatory and anti-histamine, and might decrease his reactions with less side long term issues than steroids.

Some ideas to start: methyl B12 and mthf folate & folinic acid (200mcg each daily of the last two) to support methylation. Seasonal allergies often mean methylation function is poor.

Vitamin C 2000mg/day to lower blood histamine levels.

Inflammation calming supps - grapeseed extract is a nice gentle one to start with. Pycnogenol & curcumin can also be helpful.

[rhesp1212]

mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to. Although maybe now that he has done the round of steroids and the gut inflammation is down he may be better able to tolerate it. I most definitely will not put him on steroids long term....no way!! Too many side effects for sure! The grapeseed sounds good too, but he recently became extremely sensative to grapes....but I suppose I could try and it and see what happens.

Someone at work gave me a number to a really good naturopath too, and I think i'm going to call her and set up an appointment for him.

GI called back and said that all of his bloodwork looked good (no celiac's thank goodness).

[changingseasons]

Originally Posted by rhesp1212

mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to.

We have that same problem. DD is now tolerating the vitamin D that I have now, so that's exciting! (I use the Pure Encapsulations capsules, and just dump some on her food.) Speaking of- have you had his D tested? DD was at 11 when we first tested her, which could definitely be contributing to her messed up immune system.

[mamafish9]

Originally Posted by rhesp1212

mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to. Although maybe now that he has done the round of steroids and the gut inflammation is down he may be better able to tolerate it. I most definitely will not put him on steroids long term....no way!! Too many side effects for sure! The grapeseed sounds good too, but he recently became extremely sensative to grapes....but I suppose I could try and it and see what happens.

Someone at work gave me a number to a really good naturopath too, and I think i'm going to call her and set up an appointment for him.

GI called back and said that all of his bloodwork looked good (no celiac's thank goodness).

I know a number of kids who do fine with grapeseed extract who are sensitive to grapes - no guarantees, but a possibility. Have you checked out the B12 at holisticheal.com - would these drops work? (Nuts, I see they have citric acid now, didn't used to).

You could also contact a compounding pharmacy - they should be able to compound methyl B12 for you (they do it for methyl B12 shots, so guessing they could do it for oral as well). Straight methyl B12 tastes fine, so it would just be a matter of getting it in a stable base, and they may have some ideas for you. Or you could try methyl B12 shots (they are a very small needle, lots of people do it while their kiddos sleep).

[rhesp1212]

He did have his vitamin D level checked and dr. said it was okay, but I will call and find out what the actual number was.

Mammafish- wouldn't I need a prescription to get something compounded like that? How much methyl B12 should I be giving him?? He's about 30 pounds at 2 years old. Do you know if there is a risk of giving too much, or do they just pee out the extra that their body doesn't need? I'm always afraid of supps. that aren't from a dr. because I have no idea how much or the consequences of giving too much!

[mamafish9]

Too much methyl B12 would make him crazy for a bit, but it's temporary (a few hours), then he'd pee it out. The idea is to get some form you can control the dose, and then start slowly (500-1,000mcg at a time). However, if he has histamine issues, the histamines will gobble methyl groups, so he may tolerate a huge amount (and see large improvement in his histamine related issues).

You may need a prescription, but in this case, it could be a really important supp for your son, so worth pursuing. (Can naturopaths write rx's where you are?)

[rhesp1212]

I don't know if a naturopath can write an Rx or not....but I know my dr's won't do it, unless I can convince them to check his B12 levels and they are low enough to warrant a prescription of it. So frustrating!

[rhesp1212]

shoot....I just looked at those drops you recommended. The citric acid may or may not pose a problem, but the palm definitely will. The only IgE reaction that we know for sure he has had was to palm shortening. DANG!! I think when I looked before I found some methyl B12 in capsule form from thorne labs, but I thought I read that sublingual is the best way to go or it's not really absorbed or something like that.

[mamafish9]

Yup, capsule is pretty useless, you want sublingual.