View Full Version : Questions about supplements

07-13-2011, 02:35 PM
We recently switched peds, and the new one is considered "the" ped in this area to see if you have a SN child. She definitely has a different approach, but is a regular MD. She's very big on GFCF diets, and supplements. She ordered a urine organic acids test through Great Plains for J, and recommended a bunch of supplements based on the results.

Honestly, the whole thing makes me very nervous, but after doing a very quick Google search, just to get an idea of what these things even are, I'm even more nervous about one. If you have any knowledge about this stuff, please chime in. I know absolutely nothing about supplements, and don't even know where to start.

Here's what her notes say:
Urine OAT reviewed:
*Mild elevation of 2 fungal markers- recommend Probiotics daily (Kirkman ProBioGold or equivalent)

*Beneficdial flora markers low normal- recommend probiotics daily

*HVA &VMA Low normal range-recommend high quality multivitamin (eg Kirkman Super NuTHera or EveryDay MVI) that will have increased vit B levels. Other option is to add a B complex in the morning Magnesium will also be helpfulf (epsom salt in bath or mag glycinate orally)

*5_HIAA (serotonin) low- Recommend ading 50 mg at night of 5-HTP May increase by 50 mg each week to a max dose of 200mg/night. I would try this first before starting any stimulant. *****

*Eleveated quinolinic acid. Rec 5-HTP, Omega 3s and Vit C

*Elevated methylmalonic acid= low methyl B12- Rec the injections would be best 3x/week, but can start with a sublingual dose 3x/week.

*Low B vits and CoQ10 low rec high quality MVI w/higher values of these

***** The 5-HTP is what really freaked me out b/c of this:

Because 5-HTP has not been thoroughly studied in a clinical setting, possible side effects and interactions with other drugs are not well known.
Administered serotonin has been shown to increase the risk of heart valve disease in animals", which is scary enough on it's own, but add in Jason's totally re-plumbed heart anatomy, along with a missing pulmonary valve, and I'm thinking there is no way I want to be messing around with this stuff!

Probiotics, multivitamin, Omega 3's aren't things I'm really worried about. I also have to figure out if any of these are Feingold approved.

07-13-2011, 02:43 PM

I actually take 5-HTP and I can tell you that it has helped me immensely. I run out of it occasionally and when I do I can tell the difference within a few days. I am much calmer and more centered when I take it.

07-13-2011, 02:56 PM
Hmmmm, and I haven't seen you in a tinfoil hat or anything. lol Maybe I'm overreacting? I've never even heard of it before.

07-13-2011, 03:01 PM

No I'm about as anti tinfoil as they come. :) A good friend who is a psychologist recommended it to me. I was considering giving it to S, but she takes so many medications due to her asthma and allergies, I was concerned about possible interactions. But I was OK experimenting on me. :wink2:

This is what I take, but there are lower dose options: http://www.amazon.com/gp/product/B001G8Y9CA/ref=rcx_subs_dp

I will say that it is a big tablet and sometimes I get an aftertaste from it that is fairly nasty. But maybe there are liquid options?

07-13-2011, 03:04 PM
Hmm. I think I would be concerned as well. The one that stood out to me was the same one that worries you, mostly because I don't know anything about it either.

I think if it were me, I'd have a long detailed chat with the new doctor specifically about your concerns, but I'd also talk with your son's cardiologist and get his thoughts/reccomendations. Frankly, of the two, I'd probably value the cardiologists recs. more highly.

Good luck. It is so hard to have just a small amount of knowledge and try to research all this stuff on your own and then have to make a judgement call for your child. It's scary and no one warns you about this stuff when you're bringing that brand spanking new baby home from the hospital!

07-13-2011, 03:13 PM
Essentially, 5HTP is like a mild SSRI. So anything that would be contra-indicated for an SSRI is contra-indicated with 5HTP. I don't know what the concerns are with SSRIs and cardiac issues.

07-13-2011, 06:08 PM
Things like 5HTP, Omega 3, magnesium, the B vitamins all seem to be recommended for mood and nervous system issues. I give my two oldest fish oil and magnesium for their anxiety issues. I've been toying with the idea of a B complex. 5HTP is intriguing but I haven't taken the plunge.

I think you definitely have a good reason to speak with the doctor further about the 5HTP -- especially given your child's cardiac history. You may also want to speak to your child's cardiologist about it too.

07-14-2011, 03:40 PM
I also take 5-HTP: http://www.amazon.com/Natures-Way-5-HTP-60-Tablets/dp/B0009ET9S6/ref=sr_1_1?ie=UTF8&qid=1310671465&sr=8-1 and definitely notice a difference.

DS1 is recovered from autism and has been on a ton of supplements, but not 5-HTP.

A symptom of a yeast overgrowth in the gut can be hyperactivity. If J has an overgrowth, a daily probiotic won't touch it. IME, the daily just sustains the gut; you first need to get rid of the yeast. Threelac is great for yeast and for some reason, Amazon has it cheaper right now:http://www.amazon.com/Threelac-Probiotic-Dietary-Supplement-053-Ounce/dp/B000F4H5U4/ref=sr_1_1?ie=UTF8&qid=1310671778&sr=8-1

Some kids react to b vitamins with hyperactivity. I would give a regular daily like this: http://www.ourkidsasd.com/products/multivitamin/131%7CChildren's%20Chewable%20Multi-Vitamin_Mineral%20Wafers%20with%20Xylitol-Kirkman%20Labs and give the b separately until you see how he tolerates it. Kirkman makes a nice small b capsule.

If you learn how to give the mB12 shots, you can do it while he sleeps and he won't wake up. From everything I've read, the sublinguals and nasal spray aren't as effective. (I believe the order is shots, nasal then sublingual.) Kids don't tend to react w/hyperactivity to b when it is the methyl form.

There are a couple of really helpful yahoo groups. IIRC, ARIsupport, beyond gfcf and csb-autism-rx is a list Dr. McCandles reads and responds to, but you need to purchase her book off her site to get an invite.