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My son has been taking alot of supplements as suggested by our integrative dr. Another dr told me that supplements are a waste of money and won't really help with PANDAS. My husband has been trying to get me to trim the list a bit (we both agree that probiotics and good yeast are important) but I'm not as convinced as he is that we should cut back. My son eats well and will try any new food so he probably does get alot of nutrients through food. We've been on these supplements since last November. To be honest, I don't really see improvement while taking the vitamins (although he hasn't been sick in over a year but then again, we homeschool) but I am afraid to rock the boat right now.

 

Does anyone feel that supplements really help with your child's PANDAS symptoms?

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I can tell you that my son was doing VERY well 3 years ago with probiotics, flax oil, calcium-magnesium, multivitamin, and mild dietary restrictions (artificial foods, etc).It was not a large number of supplements, but he was receiving supplements nonetheless. It was before we knew he had PANDAS. We gradually stopped all of these, thinking he had "outgrown" his problem. Slowly but surely the OCD crept back, but I did not realize it until he was in crisis. Then it took several months to get him back on track.

 

My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.

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My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.

 

I highly agree and be sure to leave a significant amount of time in between.

I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc.

A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

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Is Dr. Mullen also a pediatrician? I would love to find a ped. who is also PANDAS literate.

 

We are in So. Cal, so Burbank would be great. Do you recommend her?

 

Thanks.

 

(And anyone else, a recommendation for a PANDAS literate ped in Pasadena/Glendale/Burbank/Duarte.... would be awesome.)

 

Thanks!

 

My advice is- If you are thinking of cutting back, just cut out one thing at a time and try to have an objective measure of behavior for several months before you remove another element.

 

I highly agree and be sure to leave a significant amount of time in between.

I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc.

A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

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My son takes only Omega 3 fish oil as instructed by Dr. Murphy. I did take him off for a short while and began noticing his eye tic and a slight change in behaviour. I do feel the Omega 3 is beneficial.

 

 

 

Do you know if omega 3-6-9 is good for pandas? I've read somewhere that omega 6 is not good for pandas since it is inflammatory.
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Immune system support is important--is just good solid sense for brain and body healing...:

 

Omega 3's

Vit C

Vit D

and a multi....

fresh healthy foods, and no preservatives, nitrates, etc.

 

-- basic common sense immune system building, the same for other illness, including cancer, etc. etc.

Edited by T.Mom
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Dr Murphy recommended, and it has worked for us, Coromega Omega 3. We buy the orange flavored packets. She stated you do ot want to give Omega 6's and that the Omega 3 deters the Omega 6's from causing inflammation...not sure I am saying that precisely. Also, it takes about 30 days for Omega 3 to take effect and I found that to be true.

 

 

Which brand do you use?

 

My son takes only Omega 3 fish oil as instructed by Dr. Murphy. I did take him off for a short while and began noticing his eye tic and a slight change in behaviour. I do feel the Omega 3 is beneficial.

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I would definitely keep him on any supplements that are supported by lab testing - anything he's deficient on or needs to support his immune system/gut.

 

My son was on a number of supplements and I was getting pressure to reduce costs, so I cut them down to what I thought was the bare minumum (probiotic, neurotransmitter support, multi, anti-fungal), but one year later he had his sudden, severe onset of PANDAS and I realized that all those supplements were probably necessary. We just hadn't seen any dramatic improvement in his mild behavioral issues or asthma, but we didn't realize that they were preventing worse from happening.

 

We have since added back glutathione, digestive enzymes, vitamin D and pantothenic acid (last two based on updated testing for deficiencies).

 

If the issue is cost, can you find any of his current supplements cheaper? I found a local vitamin shop that discounts everything in the store every other weekend, so I just have to time things right and I save a fair amount. Also, you can look online for lower prices on the same things. It's a little time consuming, but maybe better than cutting down on the actual supplements.

 

I've found the doctors who say that supplements are a waste of money aren't looking at the whole picture - they are the conservative, symptom treatment-focused docs (probably the same ones who don't believe in PANDAS).

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These are good ideas. I think for now we will stay status quo and keep things like they are but maybe try to shop around for better prices. We eat a very balanced organic diet and we follow the Feingold Diet as far as no artificials, preservatives and we don't do much sugar. I think the food costs are what's really killing me :unsure:

 

 

I would definitely keep him on any supplements that are supported by lab testing - anything he's deficient on or needs to support his immune system/gut.

 

My son was on a number of supplements and I was getting pressure to reduce costs, so I cut them down to what I thought was the bare minumum (probiotic, neurotransmitter support, multi, anti-fungal), but one year later he had his sudden, severe onset of PANDAS and I realized that all those supplements were probably necessary. We just hadn't seen any dramatic improvement in his mild behavioral issues or asthma, but we didn't realize that they were preventing worse from happening.

 

We have since added back glutathione, digestive enzymes, vitamin D and pantothenic acid (last two based on updated testing for deficiencies).

 

If the issue is cost, can you find any of his current supplements cheaper? I found a local vitamin shop that discounts everything in the store every other weekend, so I just have to time things right and I save a fair amount. Also, you can look online for lower prices on the same things. It's a little time consuming, but maybe better than cutting down on the actual supplements.

 

 

An immunologist was actually the one to say the supplements don't make much of a difference. I was somewhat suprised by the comment.

I've found the doctors who say that supplements are a waste of money aren't looking at the whole picture - they are the conservative, symptom treatment-focused docs (probably the same ones who don't believe in PANDAS).
Edited by justinekno
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  • 3 weeks later...

Justine,

 

Not a kid, but an adult with lyme&PANDAS, just wanted to chime in with my experience. I used to take about 70 different supplement, every day, some multiple times per day. Each one was measured with "muscle testing" (applied kinesiology) and my body said it was helpful. Managing that kind of inventory was quite a challenge, and I did run out sometimes, many times I would notice within a day or two how valuable it was for me. Others, I never noticed anything. When I got into really trying to reduce pills and costs, I tested priorities and ordered them (again, muscle testing) and then dropped a few at the really bottom. I started buying a lot more from iHerb and vitacost, as opposed to from my doctors, different brands, but I found replacements that were a lot cheaper.

 

I really don't believe any have helped with an overall cure, but absolutely they helped manage symptoms. With acid reflux and bad digestion, you bet vitamins and minerals helped (not absorbed from food) and something to fix lining of esophagus helped. With neurological infection/inflamation, you bet some of the supplements targeted at that helped.

 

If you have access to muscle testing, would strongly encourage you to use that. For some people, it is easy to learn to do that testing yourself. It took me a couple/few years to learn it well enough to trust it, but some people learn it well in a matter of minutes with a good teacher. The great part I have just experienced by sticking with them and testing them, is to see you test for less and less when you get real healing, I am down now to about 10 supplements (6 of them probiotics), which is gratifying to see, but also confirmation of real healing which can be useful.

 

Michael

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