Want to help in any way I can

[fuelforall]

Hello, all,

 

I have posted very little in the past six months or so but I wanted to weigh in with some information that may or may not be helpful. I will have suggestions but of course, they can be taken with a grain of salt.

 

My dS10 is doing much better but he is of course not completely well. I do feel his PANDAS is in remission though and much of his remaining behavior is learned/habit. He has other variables in his condition that may contribute to this. But he goes to school every day, he does homework, there is no delusional behavior as there was before. IEPs are being changed, teachers and therapists are very pleased, they like what he is doing, how hard he is working compared to last year. I actually feel like I can have a life now. At least until middle school starts.

 

To recall, my son spent this time last year in the psych ward. Many of you know about that. It was a horrible useless experience. He gets angry when the subject comes up, we try not to let it come up. He got HD IVIG very quickly and made no improvements for three months. He was delusional, oppositional, still Pandas. Come July, he got a new drug and improvements hit- it could easily have been the IVIG kicking in as well. The improvements were temporary, lasting a few weeks, as they always are with a drug that succeeds for a stretch. In August, through word of mouth, we began to see a healer. I cannot speak for her but when she met him, I could tell her reaction was, “Sheesh, I’m good with things like cancer and AIDS but kids with brain stuff going on, whew.” And of course we were her first PANDAS client. She recommended another specific treatment from another healer (who said, "PANDAS, what the hey is that?" then got to work on it) which we are doing now and will continue to do for some months. We have seen only one major response to this treatment and that is an increase in appetite, along with a more diverse palate. (The other healer made it clear my son needs to be treated like an adult- so much stuff going on!)

 

This new improved palate helps as the healer is a nutritionist with strong ideas about diet. She believes in electro therapy (and when we were going regularly, my son always came home feeling better) - and she is very anti GRAIN. And dairy. And soy. Just try to get my son to cooperate here, he did gluten free for a year or so back when the word cooperation was in his vocabulary and never wants to return to it. BUT as I said, he gets more protein, less starch, is known to pig out on cooked spinach (it took the place of broccoli as favorite veggie) and he can actually go a week without pestering for mac and cheese.

 

Yep, the healer hates grains. Gluten is worst but all grains cause… you guessed it, inflammation.

 

She also believes in a certain supplement and we have a lot of anecdotal evidence of its health conveying powers. I will not try to sell anyone on it but if you PM me, I’m happy to tell you. I will say that I have put my family on it (I think DS10 is finally beginning to feel benefits) and I can say I certainly feel better when I’m on it. Given the stress of DS10’s behavior, along with DS4’s issues (continuing high strep titers- we plan a consult soon) I can use all the help I can get, preferably not pharmaceutical. I also reduced consumption of grains and dairy. Did a lot of violating over the holidays but just went on a grain free diet for one month.

 

OK, the grain free thing: A friend sent me a link which I have looked over several times. It is yours for study, there is a lot of feedback given to the (guest) blogger who has written a book. I believe there are 937 comments!

 

http://www.fourhourworkweek.com/blog/2010/09/19/paleo-diet-solution/

 

Notice the talk about the link between lectins and autoimmune conditions.

Note that it says, try it 30 days, see what happens. This is why I am going grain free. I have leaky gut syndrome myself. It’s true about the opiates in gluten and such but I have passed withdrawal phase and now just kinda say, “shucks” when I can’t have something I once loved. I eat more sardines, salmon and mercury free tuna in cans. And nuts. Oh, do I eat nuts!

 

So I will try to blog again in the future but my main tip is this: get yourself or your children off of grains, if you can. Experiment. Try it for a week, see how they act. I think Dr Bock and DAN doctors call this “specific carbohydrate diet” or some variation of it. Limit legumes ( yes, that’s peanut butter, do nut butters) and no dairy if possible. Also,

 

GIVE THEM SEVERAL TEASPOONS OF EXTRA VIRGIN COCONUT OIL every day.

 

http://www.NaturalNews.com/030971_coconut_brain_function.html

http://www.naturalnews.com/030919_coconut_oil_Alzheimers.html

 

Some guy named Alan Graham online tends to rant a bit much but he is right here when he writes:

 

"I cured my Crohn's by taking a broad spectrum of anti- oxidants and immune/digestion enhancing Supplements! Moreover, I ate foods the medicos told me to avoid, like 6 or 8 poached eggs daily... good for Lupus & joint-pain, because of the high sulfur & Omega-3 Fatty-Acids, EPA & DHA like those found in fish. Also, I consumed Saturated Fats like real Butter & Coconut Oil... a couple of Butter's arcane, shorter-chained fatty-acids, are great for joint inflammation! The anti-inflammatory characteristics of the magical MCT's found in Coconut oil explains why Polynesians who eat the traditional diet don't appear to get Lupus & Arthritis..."

 

{PERSONAL NOTE: I CAN’T GEY MY SON TO DO THIS COCONUT OIL BUSINESS SO IF YOU CAN’T, don’t sweat it.} Try to sneak it in foods, like pasta sauce or something. I put em in my eggs. Dr Bock recommended coconut oil two years ago, now I'm listening!

 

Addendum: don't worry, they didn't find a link between eggs and cholesterol levels. Honest. Google it. Keep the eggs runny if you can.

 

Also, Omegamaine makes what I believe is THE most powerful omega-3 liquid on the market. No fishy taste either. I mix it with the afore mentioned supplement.

Holy moley, just check out the numbers!

http://www.mainenaturalhealth.com/omega3.php

 

Let’s see… oh yes, both children have begun seeing a pediatric chiropractor who is quite good and they seem to enjoy their treatments. LOTS of sensory issues.

 

I will talk more about electro therapy as I experiment. No, it’s not scary, really. I’ve done it on myself too and it feels TERRIFIC, mentally and physically.

 

I hope you all can find something useful here. I want to provide information as my son is improving on some levels. BTW, to Stephanie Weeks,: my son won’t swallow OLE(olive leaf extract) because it smells and he doesn’t like capsules crushed up in liquids, so I can’t get much help there. (Stephanie is already aware of what we are doing in my house.)

 

Be brave everyone, may all exacerbations be short and may every experiment you try on behalf of your child be successful. We deserve happy families.

 

Michael

[thereishope]

I'm glad to hear things are better. Recovey has to start somewhere and can take quite awhile.Even if it's baby steps, those smaller triumphs is what helps keep the hope and fight alive.

 

Come July, he got a new drug and improvements hit- it could easily have been the IVIG kicking in as well.

You know I have to ask...what was the new drug?

 

She recommended another specific treatment

Now I feel like you're teasing us:) What treatment?

 

 

She also believes in a certain supplement and we have a lot of anecdotal evidence of its health conveying powers

Okay, I think I know which one this is:)

 

 

 

I need to look into coconut oil. Someone else recently mentioned it for overly dry skin to apply directly to skin.

 

As for some of the remaining issues that may be learned or residual, have you considered a therapist? If it's OCD, have you tried ERP now that you see some improvements already there?

 

Thank you for all your insights and sharing what you've learned!Please continue to update us now and then!

Edited January 13, 2011 by Vickie

[fuelforall]

I'm glad to hear things are better. Recovey has to start somewhere and can take quite awhile.Even if it's baby steps, those smaller triumphs is what helps keep the hope and fight alive.

 

YEAH THE TICS ARE BAD RIGHT NOW. NOT AN OCD PANDAS CASE. THAT"S WHY WE HAVE TO LEAVE HIM ON RISPERDAL. FOR TIC MANAGEMENT.

 

Now I feel like you're teasing us:) What treatment?

 

DON'T WANT TO GET HOPES UP SO DON'T WANT TO JINX ANYTHING.

 

 

She also believes in a certain supplement and we have a lot of anecdotal evidence of its health conveying powers

Okay, I think I know which one this is:)

CLUE; IT'S A POWDER AND IT TASTED GOOD

 

 

I need to look into coconut oil. Someone else recently mentioned it for overly dry skin to apply directly to skin.

EAT IT. LOTS OF IT. BUT IT IS GOOD FOR THE SKIN.

[MichaelTampa]

Glad to hear from you, and glad things are have been heading in a good direction!

 

Regarding the nuts and coconut oil, I am eating a lot of nuts these days, and using some coconut oil. One "recipe" I want to share is, I'll soak in water for a few hours about a cup of raw cashews, maybe mix in just a few brazils and macadamias, and then blend into a smoothie with frozen berries, water, maybe a little cinnamon, and of course, coconut oil. It adds some nice sweetness and smoothness in there. I've been on low/no sugar for so long, I can do this without sweetener, given the relative sweetness of the rest of the ingredients.

[fuelforall]

Michael good to hear from you. Adopt the Paleo diet for a month, see how you feel.

There is a large percentage of the population that is sensitive to gluten but is not celiac per se.

 

I had to give up on the euro allergy stuff, it just wasn't making any progress. Four rounds..... you know.

 

Listen, be careful about nuts. If you have autoimmune issues, Robb Wolf says you may need to be careful with them, that patients are more sensitive to them than someone like me. Coconut is technically not a nut. I read the cans of coconut milk are more filled with the fats needed than the cartons of coconut milk are so tank up! Good for you on the low/no sugar front. I am reducing now, obviously, because of no grain diet I am on. I am extremely low dairy and low legumes, and I expect to be off legumes soon. Stock up on avocados for good fat. And of course coconut products.

 

For those reading this post, this is a good time to say it again.

 

Buy and eat coconut oil! NOW!!!!!!!

 

I need to invest in a coconut oil processing plant somewhere!

 

Michael