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Natural Treatments, supps, diet, etc.


faith
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I think I'm just wondering if the parents of the PANDAS kids still follow dietary restrictions, elimination diets, supplements, allergy control, etc.? Obviously this course probably does not help for some, but just wondering if there is anything that some of you still follow and find to be good for these type kids. I see that there is not much talk of this type stuff on this side of the forum. I'd like to know what you all feel helps or does not help....for instance, do any of your kids here have success with fish oil? many of us on the Tics board feel it increases tics, ... is that the same over here?

 

thanks

Faith

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I haven't used fish oil in a couple of months. I don't think it helped or hurt symptoms....but I do believe that omega 3's (esp DHA) are good for brains in general. I do buy the eggs with Omega 3 DHA and lately dd has been getting french toast using those eggs for breakfast.

 

We haven't done any dietary restrictions (but I know some people have). It just didn't seem like a good idea given that our dd's big OCD issue was anorexia nervosa. It was a big deal overcoming her own PANDAS induced dietary restricitons (fear of fat, fear of sugar, fear of weight gain, etc.) that it didn't make sense to turn around and say you now can't eat wheat or dairy b/c that might be making you sick.

 

I do give probiotics (b/c she's on azith), but haven't been religious about it. I stopped for a couple of months and now have started again.

 

We give a multi-vit. every day.

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first let me say thanks for all you do

 

1but have you ever tried an elimination diet

2 does your family get to eat everything w/o concern

3are you staying on an elimination after the ivig

4 anyone who's done either procedure ...are you staying on your diets or are you looking to open up your diet?

5 my son always had remission for 3-5 months...now nine, tics been sticking around in some form for the last 6 months...i'm scared

6 lately the tics seem to morph over the course of a week for the past several weeks and having 3 he rotates within a given day...anyone else ever had this happen

7 even when this last episode started april 6, 2009 it was out of no where. both streps tests came back neg but the doc did let me have anti's for 10 days because he is so suseptible to strep but i couldn't convince anyone to give me more. and it would usually go away in 4-5 weeks completely

8 anyone know of pandas doc in Georgia

 

please anyone if you could answer any part of this

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I've really become more conscious of what I put in my children's bodies. I have tried to go more organic, I try to avoid food dye, high fructose corn syrup. They all get a multivitamin now, which I did not do before. I give my PANDAS son DHA, Omega 3's. He gets some DHA in the morning in his multivitamin and then the Omega 3's and extra DHA at night time before bed. I figured it was a good idea to give him some at night when a lot of the processing occurs in the brain. He's a kid's kid. He will only eats gummie vitamins. But I have found some at Walmart, Target that are not expensive at all and do not have food dye in them. I've tried to get my 8 year old (non PANDAS) to take the Omega 3's and he won't.

 

I find he doesn't drink a lot of dairy. I'm not limiting it, but not forcing it on him either. I guess you can say I'm trusting his body to tell him what's good for him right now. He'll drink a small glass of milk maybe once or twice a week.

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I've given my son about 1.5g/day of omega 3 since he was 6. I'm a big believer in the benefits of omega 3 for everyone. I have no idea if it has helped or not, but who's to say that his symptoms wouldn't be worse without it? The times he has missed a week or so I have thought that I've seen a down-turn in behavior, but could be my imagination or coincidence.

 

Other than that he gets a multivitamin every day (with no artificial colors/flavors) and a probiotic. I try to avoid artificial ingredients and am now becoming even more stringent.

 

He just started a steroid burst so I don't want to add anything new at this time, but one of the things I really want to do soon is have a phone consultation with the nutritionist who has been mentioned here, but whose name currently escapes me...

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WOW - how did i just lose my whole post when i tried to make something capital??

 

my son is 5 and is currently doing well. our biggest issues now are an inappropriate flight or fight which i am investigating as anxiety/OCD/separation of emotion and potty delay.

 

when he started symptoms last oct, i was investigation yeast as the culprit. we saw a naturopath who ran an IGG food sensitivity panel(not generally accepted in tradional medicine). he showed off-the-chart reactions to all dairy, eggs, peanuts and most grains. looking back, he was avoiding milk. unfortunate timing, we also started a month of keflex at the same time as food restrictions. after about 3 days of keflex, he was 100%. he relapsed a few weeks off keflex still with food restrictions. the ND's opinion was the food was the problem = his gut was a mess = his immune system was mess and let the strep get out of control. thus, fix the food, fix all else. i believe the strep was the root = causing the other issues. basically the chicken vs the egg. i currently keep him on this restricted diet b/c i believe it helps to not overwhelm his immune system not due to any positive behavior observances. i wrote more detail on the strep & stomach flu thread - #39894 - i don't know how to link it.

 

he is 12 weeks into a homeopathic protocol called Pleo Sanum - a German company - quite hard to find info. it's basically the long-term antibiotic theory with different substances than traditional abx. just now one week into the final ramp up. that is why i annoyingly repeatedly question others if they base results on behavioral observances or other factors. i believe this to be the most effective thing we are doing.

 

he's been on a probiotic from a company called pharmax since Jan. i don't see much results but believe in probiotics.

 

he's been on Calm magnesium/calcium for about a month. i don't see behavior changes but think it helps keep him regular since potty delay is an issue.

 

both my boys take Dr. Sears Go Fish. i love this stuff! it's only 1/2 tsp for 700 mg omega3. i put it in a little OJ. my 7 yo is the pickiest eater on the planet and he likes it. he did have small bumps on back of arms and under/around mouth (EFA deficiency ? strep related?) with have gone away. bumps around lip seem to return if we forget fish oil for a while. don't see other results but believe in omega3.

 

he goes for cranio-sacral therapy. only about 1/month b/c it's out of pocket - i would have him go 1/week or 1/2 weeks otherwise. he's been 3 times. last time, the next few days he seemed to have an eerie sense of calm and peace. i know this sounds whacked but something about the aura around his eyes seemed clearer. i don't usually think his eyes look lost but they seemed clearer.

 

not so related to pandas, when first struggling to find answers, i found much info from the autism community. i discovered many think zinc is helpful for food issues in autism. since my 7 yo is horribly picky(had adnoid issues and finally out 3 years ago - i think contributed), i put him on 15 mg zinc. could be my imagination, after a few months, he really seemed more adventurous to try new foods and did like things more. due to summer schedule - or mis-schedule - we got out of zinc habit. he is back to terribly picky. this past week, we're back on zinc and will see what happens.

 

previous to this, i used homeopathic remedies for myself and the boys. i like the company bioron - blue tubes that also makes oscillicocum(sp?). i gave 7 yo thuja before/after immunizations. was not so strict about this with 5 yo. love hepar SC for sinus issues - we take it every 3 hours for sinus stuffy/runny and it knocks it out. (i'll tell disclaimer that 5 yo had all sinus cavities infected when first treated with keflex - he didn't seem stuffy/runny/ other symptoms - don't think i'd been giving him this treatment at that time). a couple weeks ago, i was feeling something in my brochial/lungs and had occasional bark cough. i took sulphur for few days. my 7yo seemed to have be getting a cold this week - i gave him gelsenium = cleared up. i like hpathy.com and boironusa.com for info.

 

~Kathy

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My son takes the following per Dr. K.

 

MORNING:

- Omega 3, 6, 9 Junior; 2 Capsules

- Ester C 250 mg

- Vitamin E 100 IU

- Multi Vitamin, Whole Foods Gummies includes 200 mcg Folic Acid

- 250 m.g. Azithromycin

 

NIGHT:

- Calm Kids

- Pearls Probiotic

 

RECOMMENDED DIET

- Emphasis on TRYPTOPHAN-RICH DIET, which includes Cow's Milk, Cottage Cheese, Egg White, Spinach, Egg Yolk, Beets, Turnip, Soy and soy milk, Hazelnuts, Barley, Rice and Dairy Products, Bean Sprouts, Cauliflower, Brussel Sprout, Potato, Wheat, Oats, Rye, Meat and Meat Products (especially turkey).

 

Prior to IVIG we were attempting Gluten Free Diet but have abandoned that based on the above recommendation.

 

-Wendy

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The tryptophan rich foods sound okay, but just to let you know, I had tried the tryptophan in supplement form and seemed to get an increase in tics after one or two capsules (I always leave open that it could be coincidence or just my imagination, but who knows? ) .. so this is something to look out for. Most amino supps seem to do that for my son (cause increase) could be my imagination, but I get nervous and discontinue. but I'd be interested to know others experience.

 

Faith

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My dd takes the following supplements daily:

 

Mastica 1 tablet daily

Immudyne- Macro Force Plus IP6- 1 tablet daily

 

 

Then off and on but rarely, I give probiotics, right now she uses Health Trinity brand but she used to use Klaire Labs.

 

Right now she is taking Transfer Factors, but only because she got sick Friday with flu-like symptoms.

 

 

She is 11 months post IVIg and doing really great with no PANDAS symptoms.

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okay then...

what I would like to ask now, is for those of you that are involved in treatments for PANDAS, wether it be abx, IVIG, PEX, ........ could you correlate for us how well you feel your child did/are doing on those treatements, and do you necessarily think that having gone the natural route prior to this has helped in some way, obviously not all the way, but somehow mopped up what the IVIG or abx couldn't? In other words, I guess I'm asking if natural/holistic and just plain healthy diet and supplements seem to have been a factor in thier kids recovery, by in some way "enhancing" or providing a healthy base for these treatments to hold better, for lack of better word.

 

The same question for those that feel their first treatments of PANDAS were not necessarily as successful as they would have like, then are you ones who did not necessarily engage in the natural treatments, i.e. diet, supplements allergy control, or other modalities such as chiropracty or craniosacral? things like that. kind of like the healthier they are to begin with.......then maybe these treatments would go smoother?

 

I guess I'm wondering if PANDAS is the whole kit and kaboodle for these kids, or is it the main problem, but maybe some other small problems that contribute to symptom severity?

 

Hope that isn't too wordy or complicated sounding, but whatever you think, I'd like to hear.

 

thanks

Faith

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We have done a variety of things and the more "natural" or holistic things have been the ones we have seen the most results with (aside from IVIG, that is.)

 

The following have given us the most dramatic results thus far:

 

Therapy (particularly an out-patient stint a year ago for 11 days, but otherwise once or twice a week)

 

Feingold program (www.feingold.org) Apparently there is something to be said for low-salicylate diets in lots of disorders that are on or mimic the 'spectrum' like ADD, OCD, Tourette's and PANDAS - our most dramatic results were with eliminating artificial colors and apples, but each child is different. We also eat all organic, grass-fed beef, free-range chicken, etc. We are currently investigating whether she has any gluten issues and doing vitamin deficiency testing as well.

 

Extremely consistent bedtimes to ensure that she gets AT LEAST 12 hours of sleep. A lot, I know, but wow, what a difference.

 

Melatonin at bedtime

 

Oscillo and Cold Calm for colds and flu

 

Belladonna for fevers

 

MSA (Meridian Stress Assesment) testing, which is an alternative sort of "acupressure" type testing for allergies and food sensitivities (showed results that we suspected and MORE, while traditional blood-test and scratch-test showed negative)

 

 

---

 

We are currently seeking out Occupational Therapy, Nutritional Analysis and therapy, some brain-balance therapy for SPD issues, chiropractic. Will update on these as we see them in progress.

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Both my 6 and 8 year old get around 11-12 hours of sleep a night. I don't think it's too much. That's with having to wake up my 8 year old so he can get ready for school. Actually in kindergarten, the teacher tells the parents that 5 and 6 year olds should be getting 12 hours. My 3 year old sleeps about 12 1/2 hours.

 

I don't know if what I have changed makes an actual difference but I don't want to stop it and find out! He's doing well right now. He has not had IVIG or PEX.

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