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tantrums

special diets and supplements?

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While at the birthday party of one of DS' friends a couple of weeks ago, DS had a minor meltdown, which was noticed by friends father. He is a chiropractor who runs a "natural healing" center. We talked a bit once I got DS calmed down and now we are going to his office tomorrow. He was very receptive to pandas and I didn't get a typical "chiropractor vibe" from him. He acknowledged the abx are necessary, but says he has some ideas of other supplements to assist - mainly an omega 3 that he showed me. And also some dietary changes for adhd issues we are having.

 

I'm sure others have gone this route. I've seen discussions on omegas so know that is a good thing to try. But any others to try? Others to avoid?

 

What about chiropractic? Has anyone tried that? I have other fears of that though as we worry he may also have Chiari so I don't think his neck should be manipulated anyway.

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While at the birthday party of one of DS' friends a couple of weeks ago, DS had a minor meltdown, which was noticed by friends father. He is a chiropractor who runs a "natural healing" center. We talked a bit once I got DS calmed down and now we are going to his office tomorrow. He was very receptive to pandas and I didn't get a typical "chiropractor vibe" from him. He acknowledged the abx are necessary, but says he has some ideas of other supplements to assist - mainly an omega 3 that he showed me. And also some dietary changes for adhd issues we are having.

 

I'm sure others have gone this route. I've seen discussions on omegas so know that is a good thing to try. But any others to try? Others to avoid?

 

What about chiropractic? Has anyone tried that? I have other fears of that though as we worry he may also have Chiari so I don't think his neck should be manipulated anyway.

 

Hi, We haven't tried chiropractic, but have gone to a physical therapist for craniosacral therapy. It seems to calm my daughter down a bit and has seemed to help her with balance. She has been going for craniosacral for a while...even before we ever heard of PANDAS. Just so you know my daugther doesn't have rages, but she has laughing fits and is unable to sit still.

Edited by LisaMarie

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While at the birthday party of one of DS' friends a couple of weeks ago, DS had a minor meltdown, which was noticed by friends father. He is a chiropractor who runs a "natural healing" center. We talked a bit once I got DS calmed down and now we are going to his office tomorrow. He was very receptive to pandas and I didn't get a typical "chiropractor vibe" from him. He acknowledged the abx are necessary, but says he has some ideas of other supplements to assist - mainly an omega 3 that he showed me. And also some dietary changes for adhd issues we are having.

 

I'm sure others have gone this route. I've seen discussions on omegas so know that is a good thing to try. But any others to try? Others to avoid?

 

What about chiropractic? Has anyone tried that? I have other fears of that though as we worry he may also have Chiari so I don't think his neck should be manipulated anyway.

 

Interesting...looking forward to hearing what he has to say!

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While at the birthday party of one of DS' friends a couple of weeks ago, DS had a minor meltdown, which was noticed by friends father. He is a chiropractor who runs a "natural healing" center. We talked a bit once I got DS calmed down and now we are going to his office tomorrow. He was very receptive to pandas and I didn't get a typical "chiropractor vibe" from him. He acknowledged the abx are necessary, but says he has some ideas of other supplements to assist - mainly an omega 3 that he showed me. And also some dietary changes for adhd issues we are having.

 

I'm sure others have gone this route. I've seen discussions on omegas so know that is a good thing to try. But any others to try? Others to avoid?

 

What about chiropractic? Has anyone tried that? I have other fears of that though as we worry he may also have Chiari so I don't think his neck should be manipulated anyway.

My very good friend is an MD/ DC- she gave up traditional medicine and went to Chiropractor school while working as an ER Dr ( and she had a small child-needless to say amazing woman). We see her regularly- does cranial sacral and really looks at the whole body approach. She suggests supplements etc...I highly recommend it!! She is not the traditional Chiropractor either...

Keep us posted!

Brandy

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I take both my kids to a chiro. I started taking my youngest (non-pandas) son, because he had constant colds, ear infections. Having regular adjustments helps boost the immune system. My older son starting going after a sports injury. It has really helped a lot. my younger son is doing so much better. When he does get a cold/cough it only lasts 3-4 days. My older pandas son benefits also with the immune boosting benefits but swears it helps stop one of his neck tics when he has an increase in this tic. ( bending his neck up) I have been going to this Dr. for 2 years and now we only go 1x a month for my youngest and my oldest goes 2x a month. Also insurance covers this ( just a small co-pay)

 

He also does nutritional testing etc but we had been down this road before and had a pretty good supplement program in place so we did not redo any testing with him.

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So nearly $300 later... we are back. I hadn't realized the nutritional stuff isn't covered at all by insurance :lol: I knew the supplements wouldn't be, but not the testing and consult. UGH!

 

We are doing an Omega 3 fish oil, a drop that is seratonin and tryptophan, a protein shake (he is protein deficient) and two other things as well.

 

What I find most interesting actually (even DH who is not one to believe in this stuff was amazed), was a heart rate test. They had him lay down on a heart monitor for several minutes and then stand up with it on. It showed no change. So, as if his body didn't realize he was standing rather than laying down. That makes total sense to me, although I can't wrap my brain around the logistics of it. But he has no concept of where his body is anymore. And basically, also shows the fact that things are just backwards in my sons brain and body.

 

Interestingly enough, this was also one doctor who did NOT totally brush off the Chiari in my family. He said there is a lot here that would be related to that rather than pandas, which I also suspect (insomnia, night sweats, clumbsiness). I've dealt with that one myself for a long long time and it has actually kindof helped me to navigate with this. But since for DS, pandas takes precendence, I have hardly bothered to argue my concern over ACM with him lately.

 

Oh - he also pushed gluten free. DH and I have talked about it a few times lately. I know it would be incredibly good for me with my health problems. Since it would possibly help DS too, I really have to look into getting off my rear and doing it.

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I would be doing chiropractic adjustments if it were not for Chiari. DS2 has Chiari (no surgery) and we don't know if my DS5 has it but I do suspect it sometimes. I am afraid to have them adjusted. The one chiro I talked to about it (he's a neurological chiropractor) said that he can avoid manipulating the neck, but I still don't want to ttake the chance, especially with DS2.

 

So, each of my kids are on about 20 supplements/meds each (doing DAN protocol). I have to tell you that you don't have to buy the supps at your docs office. I get much of our stuff from iherb.com. very cheap, good brands, free shipping.

 

Some stuff that helps with pandas: Curcumin, Fish Oil (1000mg of DHA), and anyting that helps the immune system.

 

Oh, my boys are on the gluten and casein free diet and it has helped, but it is no match, in and of itself, for pandas...

 

Stephanie

So nearly $300 later... we are back. I hadn't realized the nutritional stuff isn't covered at all by insurance <_< I knew the supplements wouldn't be, but not the testing and consult. UGH!

 

We are doing an Omega 3 fish oil, a drop that is seratonin and tryptophan, a protein shake (he is protein deficient) and two other things as well.

 

What I find most interesting actually (even DH who is not one to believe in this stuff was amazed), was a heart rate test. They had him lay down on a heart monitor for several minutes and then stand up with it on. It showed no change. So, as if his body didn't realize he was standing rather than laying down. That makes total sense to me, although I can't wrap my brain around the logistics of it. But he has no concept of where his body is anymore. And basically, also shows the fact that things are just backwards in my sons brain and body.

 

Interestingly enough, this was also one doctor who did NOT totally brush off the Chiari in my family. He said there is a lot here that would be related to that rather than pandas, which I also suspect (insomnia, night sweats, clumbsiness). I've dealt with that one myself for a long long time and it has actually kindof helped me to navigate with this. But since for DS, pandas takes precendence, I have hardly bothered to argue my concern over ACM with him lately.

 

Oh - he also pushed gluten free. DH and I have talked about it a few times lately. I know it would be incredibly good for me with my health problems. Since it would possibly help DS too, I really have to look into getting off my rear and doing it.

Edited by Stephanie2

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So nearly $300 later... we are back. I hadn't realized the nutritional stuff isn't covered at all by insurance <_< I knew the supplements wouldn't be, but not the testing and consult. UGH!

 

We are doing an Omega 3 fish oil, a drop that is seratonin and tryptophan, a protein shake (he is protein deficient) and two other things as well.

 

What I find most interesting actually (even DH who is not one to believe in this stuff was amazed), was a heart rate test. They had him lay down on a heart monitor for several minutes and then stand up with it on. It showed no change. So, as if his body didn't realize he was standing rather than laying down. That makes total sense to me, although I can't wrap my brain around the logistics of it. But he has no concept of where his body is anymore. And basically, also shows the fact that things are just backwards in my sons brain and body.

 

Interestingly enough, this was also one doctor who did NOT totally brush off the Chiari in my family. He said there is a lot here that would be related to that rather than pandas, which I also suspect (insomnia, night sweats, clumbsiness). I've dealt with that one myself for a long long time and it has actually kindof helped me to navigate with this. But since for DS, pandas takes precendence, I have hardly bothered to argue my concern over ACM with him lately.

 

Oh - he also pushed gluten free. DH and I have talked about it a few times lately. I know it would be incredibly good for me with my health problems. Since it would possibly help DS too, I really have to look into getting off my rear and doing it.

 

I'm a patient. I've been dealing with P.A.N.D.A.S. for five years now. What is the tryptophan being administered for?? I have really extreme panics, not so much "rages", & had (although now it's quite the opposite) issues with insomnia for years. I really can't remember what dosage I was taking, but I honestly didn't see much results from Tryptophan. I didn't have it with Serotonin though, so I hope it helps your son!

Also, I've been gluten-free for a little over two weeks now. Does he have stomach pain? It's probably too soon for me to really judge anything with this diet, but I have such high hopes that I can hardly help myself. :P I have only had two episodes of abdominal pain since I cut out gluten, when I am used to having them multiple times a day. Although, I must admit, I did take two bites of a friend's Macadmia nut cookie yesterday. Just couldn't help myself, haha. I've been going through a particularly bad exacerbation lately, & I can't say that I've seen a change in my lack of social motivation (YET. That could very well change), but with the exception of my Narcoleptic symptoms I HAVE been feeling a bit better so far as far as compulsions, tics, & general attitude/happiness go. I'm vegetarian, so gluten-free has admittedly proven to be fairly difficult to adjust to (soy protein like Morningstar Farms products is nothing but wheat gluten), but I don't think it would be too terribly hard if you have meat in your diet! Best of luck to you & your son. :D

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I still have to research the gluten thing. I don't even know why he suggested it, although he is GF and I believe just thinks that is healthier for all <_< No specific reason for my son. I have digestive problems myself though and have been considering it despite being negative for celiac sprue. I am a social worker for people with Developmental Disability and know many parents use it and it works. I just don't know why... Does that make sense?

 

The tryptophan and seratonin is to help level out his moods and insomnia. Well, I'll tell ya, it sure didn't work tonight!! But the doctor felt it will take time. He basically said everything is essentially backwards for my son, which is why melatonin won't work, benadryl, etc... He feels it will take quite a while to get this right. I told him, the other doctors are telling me my DS was diagnosed quickly enough there is still hope he can completely get RID OF pandas and I am hoping that happens before his projected 6-9 months of playing with supplements.

 

My other point though really... I'm trying so many different approaches here at this point, ABX, supplements, diet changes, starting a therapist for possible CBT monday, how am I going to know WHAT works?

 

Stephanie - I may PM you soon if that's okay. I have some ACM questions for you. I'm off to bed now though so I may do so tomorrow.

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I still have to research the gluten thing. I don't even know why he suggested it, although he is GF and I believe just thinks that is healthier for all <_< No specific reason for my son. I have digestive problems myself though and have been considering it despite being negative for celiac sprue. I am a social worker for people with Developmental Disability and know many parents use it and it works. I just don't know why... Does that make sense?

 

The tryptophan and seratonin is to help level out his moods and insomnia. Well, I'll tell ya, it sure didn't work tonight!! But the doctor felt it will take time. He basically said everything is essentially backwards for my son, which is why melatonin won't work, benadryl, etc... He feels it will take quite a while to get this right. I told him, the other doctors are telling me my DS was diagnosed quickly enough there is still hope he can completely get RID OF pandas and I am hoping that happens before his projected 6-9 months of playing with supplements.

 

My other point though really... I'm trying so many different approaches here at this point, ABX, supplements, diet changes, starting a therapist for possible CBT monday, how am I going to know WHAT works?

 

Stephanie - I may PM you soon if that's okay. I have some ACM questions for you. I'm off to bed now though so I may do so tomorrow.

 

The only treatment I've had as of yet (besides the diet) has been pharmaceuticals, so I don't know what to tell you about knowing which one is working. :/

But as for the diet, it couldn't hurt! I've seen a minor improvement in the severity of my mental symptoms & a huge improvement in my physical ones & it's only been two weeks. A good friend of mine has a brother who is severely autistic, & they've seen a big connection between gluten & the severity of his symptoms. I'm no doctor, & I don't exactly know what being an "Autism Spectrum Disorder" implies, but I imagine that's why it's helped me.

 

Melatonin, Benadryl, & things like that never worked for me either. But, "It takes time to get this right" turned into four & a half years for me, so if there's an avenue that you have more faith in, by all means, pursue it. Which is not at all to discourage you from supplements & things like that, but if your son has a chance to get rid of his P.A.N.D.A.S. I'd do whatever it took. Once again, best of luck! <3

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It does help to try one thing at a time, but we are all so anxious to see improvement it almost seems cruel to not try something that seems promising.

 

As far as supplements go, we do a bunch & do notice a difference, though nothing as dramatic as when we started abx. My 10yo takes flaxseed oil, the Bontech supplements (magnesium taurate, vitamins A,B,C,D,E, other minerals), tumeric, digestive enzymes, 5htp, inositol & melatonin. We see a definite improvement with disturbing thoughts with the inositol. The melatonin is also extremely helpful for his night time anxiety. The Bontech supps also help, though the effect is more subtle. the other we figure certainly must help since they are all anti-inflammatory.

 

I am also thinking we are going to try the gluten free diet for a bit. It is just so hard to even contemplate starting! I think many people have a sensitivity to gluten but aren't as sensitive as someone with celiacs. The inflammation from the sensitivity causes problems with digestion causing leaky gut, leading to inflammation in other areas of the body. I keep thinking it could be why my son's immune system has never been very strong. I also wonder if it would help my ADD symptoms & my other son's chronic constipation. I really just need to do it for two weeks to see what effect it has for us. I thought summer would be the perfect time, but there have been so many parties, BBQs, vacations already that I'm beginning to think it might actually be harder. i guess it's never going to be easy!

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So I need some tips on getting a couple of these into him... He is great with the fish oil (calls it his lemon drop) and the Inositol (says that tastes good). The tryptophan/seratonin drops he says taste like sanitizer, but will take them without a problem.

 

But the OPC Synergy. What on earth do you put that in to mask it? Having a hard time with this one. I have to agree with him, it looks and smells like dirt, so I can only imagine what it tastes like.

 

And I just tried making the "smoothie" with the Whey Pro Complete. I thought it tasted okay. Not exactly great, but palatable. But even that was only after adding chocolate ice cream, which I am guessing I shouldn't be doing. I originally put in just milk and frozen strawberries. Any other suggestions? Can I just mix this into a regular drink?

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with some of the worst supps I put them into a little chocolate syrup or maple syrup (I know, oh so healthy). Also, apple juice or grape juice with some stevia to sweeten it.

 

Stephanie

So I need some tips on getting a couple of these into him... He is great with the fish oil (calls it his lemon drop) and the Inositol (says that tastes good). The tryptophan/seratonin drops he says taste like sanitizer, but will take them without a problem.

 

But the OPC Synergy. What on earth do you put that in to mask it? Having a hard time with this one. I have to agree with him, it looks and smells like dirt, so I can only imagine what it tastes like.

 

And I just tried making the "smoothie" with the Whey Pro Complete. I thought it tasted okay. Not exactly great, but palatable. But even that was only after adding chocolate ice cream, which I am guessing I shouldn't be doing. I originally put in just milk and frozen strawberries. Any other suggestions? Can I just mix this into a regular drink?

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