Starting over with supplements. Anyone BTDT?

[Gena]

DS has been taking several supplements to help with his autism symptoms. He's been on some of them for 5 or 6 years, so the majority of his life (he's 9). We've fiddled with the combinations and the doses, and occasionally stopped one for a while. We've tried supplements that obviously did not help or had negative effects and stopped those pretty quickly. But he hasn't been completely without supplements since he was 3 years old. It's gotten to the point that we are unsure of what supplements are really helping him and in what way, or if he's even on the right dosages anymore.

Every so often, DH and I talk about taking him off all supplements and just seeing what happens, get a new baseline, and start over. DS's doctors assured us that this would be medically safe, although his behavior could get very "challenging" and his skills might regress. So we've been scared to do it because we haven't wanted to deal with those consequences.

The recent reports about fish oils (which DS takes) being linked to prostate cancer made us wonder about the possibility of negative long-term effects of years and years of high-dose supplements. So we decided to finally do it. Two and a half weeks ago we took DS off all his supplements, except for a high-quality multivitamin and iron. (The iron is prescribed by his dev ped due to his blood test levels and she wants him to stay on it.)

The first week wasn't too bad. As the week went on, DS became more moody, got upset more easily, and has some mood swings. The weather was miserably hot and our AC was broken at home, so to be honest we were all cranky that week. We couldn't tell if his moods were do to the lack of supplements or the heat. Also he was staying up late at night (no more melatonin) so he was often overtired late in the day.

The second week we gave him melatonin a few nights, because we were desperate for him to sleep. Even with better sleep (and better weather), his mood swings got worse. And his frustration tolerance has been terrible - every little thing sets him off. He's been having major meltdowns over things that never would have bothered him in the past. And the worse part is, he knows something is wrong. He keeps telling me that he wants to be happy and he wants to make me happy and he's sorry.

Amazingly, he's still getting great reports at daycare every day. But it's a special needs daycare and they have a high tolerance for challenging behaviors. The teachers did mention that he's been insisting on his schedule/routines more lately (a sign of anxiety), but that's all they reported. (The daycare staff doesn't know we took him off his supplements.) Also, we have not seen any regression in his language skills, which I've been worried about happening.

I was hoping to go 4 weeks without the supplements, to give everything a chance to wash out of his system and to establish a new baseline of behavior and skills. But I can't let DS be this frustrated and unhappy. So we're ready to start over with the supplements. Yesterday I decided to start with high dose vitamin B6/Magnesium. Now the question is when and what order do we add other things back in? Do we go back to the supplements he was previously taking or should we try something new? We want to go slow, so that we can be sure that the things we are giving DS are actually helping him, but not so slow that DS is miserable.

Has anyone done this before, gone off all supplements and started over? If so, did you end up using the same stuff you had previously? Did you find something new to be more helpful? Did you find that you had been giving supplements that turned out to not be needed? Did you end up switching to prescription medication instead of supplements?

Sorry this got long - thanks for reading!

[petesgirl]

No BTDT, just wanted to send you lots of HUGS!! it sounds like a good Idea, what you are trying to do, but a frustrating situation too. I have never been much taking supplements so I don't much about them but I hope others have good advice for you. Clearly you are trying to give your child the best life possible and that is to be applauded. Hang in there!!

[alirebco]

In terms of the fish oil, I would highly suggest fermented cod liver oil by Green Pastures instead of regular fish oil. There's a big quality difference. And magnesium lotion by Ancient Minerals would likely be helpful as well.

What other supplements was he on? A probiotic? Zinc?

[Gena]

What other supplements was he on? A probiotic? Zinc?

He was taking:

Omega 3 (a high EPA/low DHA formula - we tried many ratios over the years and that's what worked best for him)
High dose Vitamin B6 with Magniesium
TMG (trimethylglycine)
Folic Acid & Vitamin B-12
Vitamin D
Iron
Melatonin
Probiotics (on and off - depending on diet, illnesses, medications, etc)

His Omega supplement was the MorEPA Mini; I have absolutely no concerns with the quality of that product.

Why would he need a magnesium lotion in addition to oral magnesium?

[Sweetum]

Hi Gena,

We are very early in our supplement journey. I started supplements in feb this year and continued to add new ones for about two months. I stopped adding and kept steady state for a month and DS seemed to be doing very well. But it was also a time when DH observed some slurriness in his speech and we were afraid that the supplements or an additive was causing it. And we were also trying to understand for ourselves if all of the progress the he was making had anything to do with the supplements. So, we stopped everything for 2 weeks and in the first week itself we observed him getting more irritable and more perseverative. That was a turning point for us - we knew at that time that the supplements were helping him. So, I started to add each one back in. I gave a smaller dose and worked up to his regular dose in 5 days, with the last couple of days being maintenance and us observing. For simplicity, I started with vitamin C, then magnesium (in the form of citrate), then zinc, then fish oil, then multi (we use a special multi) and lastly probiotic. We saw an amazing calm and focus with magnesium. I still have a few more that I want to add in, but in the meantime we went gluten free, and we wanted to just make that the big change before adding anything else. So, that's our story. We did not specifically consult a doctor but we were not doing a lot anyways, and decided that we would only do 2 weeks off. We now have a biomed doctor overseeing these.

I am not an expert by any means, but I thought melatonin was one of those that has a near immediate affect and wears off after a few hours, so, I would think it is regularly getting flushed from his body. Given that, I am thinking it would be one of those to not have to be part of the flushing process, at least not for 4 weeks. Again, not an expert, just some thoughts.

ETA: I forgot to add that we added vitmin d before the probiotic. we only do one, but I know of families that do several. we are also interested in adding an enzyme but again, waiting for at least 3 months after starting gluten free.

EATA: we do a mag sulfate cream after swimming. we used to do epsom salt baths but now DS is not interested in baths anymore, so we do a cream. maybe that's what PP was talking about?

[Gena]

Bullkin,

Thanks for sharing your experience. It's good to hear what other families are doing with supplements and what success they are having. So did you end up adding back in everything you had previously discontinued?

How long have you been doing gluten free? Do you think it's helping?

I am not an expert by any means, but I thought melatonin was one of those that has a near immediate affect and wears off after a few hours, so, I would think it is regularly getting flushed from his body. Given that, I am thinking it would be one of those to not have to be part of the flushing process, at least not for 4 weeks. Again, not an expert, just some thoughts.

Melatonin does have a near immediate effect and does not get stored in the body. However, prolonged use of melatonin supplements can have lasting effects. Although melatonin is not addictive, the body can develop a tolerance for melatonin supplements, leading to a need to repeatedly increase the dose. Supplementing with melatonin can also suppress the body's ability to make melatonin naturally, again causing dependence on the supplement. It's complicated with ASD, because some research has found that many people with ASD do not make sufficient melatonin, so they do in fact need the supplements. But then the supplements can further impair their ability to make it naturally, causing a vicious cycle. So we do try to back off the melatonin now and then to try to give DS's body a chance to make its own naturally.

I'm going to have to do some research on the magnesium sulfate cream. It's not clear to me what the purpose of it is. DS gets a considerable dose of Mg in the B6/Mg combination, plus there is some Mg in his multivitamin. Getting additional Mg through cream might throw off the B6-Mg ratio. I'm also concerned because too much Mg can lead to bowel distress. It's something I'll have to read up on.

[JustMe]

I can't be much help, but wanted to say I also took dd off her fish oil supplements after the recent news/research. I saw a huge positive difference back when she started on the fish oil but strangely enough I have not seen a difference since she has been off them (I think it has been 2 weeks). School is really stressful for her, though, so its really hard to tell what the fall will bring.

She is still taking Vitamin D, which was the only other supplement I had her on.

I things start to go south, I am thinking about just doing flax seed oil, but have not done any research on that yet.

[Sweetum]

We are only a few weeks into gluten free and we are not really thinking we will see anything anytime soon. Our biomed said we should try for 3 months to see if anything improves, so we'll definitely do the 3 months. However, I have also heard that it can take upto 6 months for some individuals or even more. S, I am not holding my breath but we are being very strict about it. We'll see. I'll keep you posted.
We ae not doing any b6 or b12 at this time, so I dosed magnesium to the extent that his bowel movement seems fine. But I am trusting that the biomed will have some suggestions when we go back after the 3 months of being gluten-free.
ETA: to answer your question, Gena, we did not add everything back in.i was giving him biotin which I did not add back in. And we were doing culturally but later I decided to give him a different one. I do plan to add these eventually.

[Gena]

ETA: to answer your question, Gena, we did not add everything back in.i was giving him biotin which I did not add back in. And we were doing culturally but later I decided to give him a different one. I do plan to add these eventually.

How much biotin were you using and do you think it had any effect?

I haven't given DS biotin, although his neurologist suggested that we try it. He said that it often helps improve sleep and vision issues in kids with ASD. Since DS's vision problems are due to albinism (which causes structural defects in the eyes) and his sleep issues are helped by melatonin and the weighted blanket, I didn't feel a need to add biotin to what DS was already taking. But since we are starting over now, I'm considering it.

[Sweetum]

Hi Gena,

No, I did not think Biotin was doing anything in particular. I did notice <TMI> that when he passed gas, it would smell as though he had a bug in his gut </TMI>. I got to know that Biotin can act as anti-bug in the gut and was probably doing that. So it was die-off, I believe the term I heard. Either ways, I didn't end up adding it in, at least not now. I wanted to check with the biomed once we went in again. I don't know about its effect for vision and sleep. I read that it helps with nervous system related tingling and hair and nails. But like I said, it was brief and I stopped it and I won't start it up till I consult our biomed.
Do you consult a regular doctor or is it a biomed/DAN!/MAPS?