ashley

Tomatos are in the nightshade category, and are high alkaloids foods, which are hard to digest for some people. However, the plan I am trying to follow is by Dr. Weil and he recommends increasing tomato intake.
 
When comparing resources, it can get very confusing. Do the research, then ultimatley, like everything else, you have to make the best choices you can.

I just wanted to offer a bit of hope for all the newbies and people in flare/exacerbation. As one of the few dads on here, this below linked song and the song "Stand" from Rascal Flatts have really encouraged me and my wife to keep pressing on.....especially in the midst of flares and the ups and downs. I just think there are many of us who many times don't have family or friends that get it....The worry, stress and battle to help our kiddos is taxing to say the least. For us, we are doing well...not perfect but the hope is there and we want to make sure everyone understands that there are people in your situation(s), we get it and just want to encourage you to not give up. This board especially and all the Pandas websites have just been phenomenal resources and encouragements to point us to people that can help.
 
So Thank you all for contributing!!!!!!!
 

"> ------------------The Sun is Rising  

--------------------Rascal Flatts

Things have gotten a lot better as far as products now be labeled in the tiny print on the back-
if it doesn't actually say 'gluten free' I usually don't buy it, or look it up on the Internet.
 
I bake items from the website 'Elana's Pantry' and own a few of her cookbooks- I find her recipes kid friendly and easy/ not a ton of ingredients. She uses a lot of coconut oil, almond flour-
 
Also, Udi's bread products from the grocery store for dd.

I have, I originally started my dd, now 9, to 100% gluten free, dairy free, and then quickly soy free (when she started demanding and begging for soy yogurts and soy cheese 4 weeks after removal of gluten and dairy)
 
when she was 4 years old. In the past 5 years, we went off the restrictions twice.
We are now back fully to 100% GF/CF and soy protein free, so that should tell you how it went ;-)
 
Dairy leaves the body fully in 3 days, so dairy you should know fairly soon if it's an issue.
Gluten is more insidious - can take months- 3-4 months,
and, it's sneaky in products- when you think you are totally gluten free,
you'll realize the Heinz ketchup your kids been using every day isn't really gluten free...
 
The last time we re-introduced dairy and gluten, I did it with Trienza enzymes, which have DDPV enzyme which is suppose to help digest the dairy and gluten proteins.
It seemed 'okay' for awhile... we went some months---
but we noticed school work was brain fogged. Then, she really was getting to eat crap.
 
Back to 100% we went (and no fight from her! She agreed)
And we saw clearer thinking, and the diet is so much healthier now.
Ridiculously expensive to eat well, but better nourishing for her this way.

have you tried 2 abx? our dd who has some similar symptoms, like nosebleeds, had to start second abx, augmenting was our first and zytro second, three months after the first. after she started augmenting things were improving very slowly, with two we saw a bump.
I am more skeptical about testing that previous posters since in most cases solution is to do 2 abx. my point is, why test if results would not lead to a drastically different therapy.
that said, I do think we should try to get rid of things that are not good for you like mold in your house.

I'll tell you what we test for, even though its always a little different for each person
strep, myco, viruses (cmv, ebv, coxsackie, hhv6, sometimes toxoplasmosis or other depending on history)
lyme, coinfections, c6 peptide - as a first stop, if money is an issue and you can't do igenix or advanced labs or something that is out of pocket for these tests, you could run them through Quest which sends them out to Focus Labs and Specialty Labs. They are not as good as igenix but they are way better than standard quest or labcorp or hospital, and insurance will cover. but remember that if they are negative, it doesn't mean lyme may not be a problem. we always say, due to the low sensitivity of the testing, that a positive is a positive but a negative is a maybe.
mold - c4a we send out to national jewish labs in denver, through quest. sensitive indicator of mold-induced neuroinflammaton.
cd-57 if you're having to use labcorp, which helps with lyme testing.
cyrex gluten testing panel#3, at the minimum.
if you can't get that test through your provider, try a sincere gluten free diet for 2 months and see if it helps.
of course you're already doing immunoglobulin levels.
then there are the basics - chemistry, hematology, ferritin, vit d, b12 and folate, zinc, copper
sometimes a toxic screen, or heavy metals
we always do a functional stool analysis, because the gut IS the immune system. often there are major imbalances and infections that are under the radar and must be treated to get the immune load down.
GI problems can create allergies or make them worse.
test for allergy specifics - foods, pets, bedbugs, mold, resp.
reduce all exposures.
use a air filter if he has any resp allergies, and an anti-histamine of some kind, med or herbal, to get that trigger down.
these are just ideas.
good luck with everything!!!

mpatti-
 
Both of my girls have pandas- so I can really relate to what you are saying.
 
All I can say is that it gets better.
 
First of all, there is a grieving process- there is no way around it. But you will be sad, and angry, and then you will accept ( not accept pandas, but accept that you have to deal with this). It will not be easy, will not be linear- but you will be in amuch better place.
 
You will also learn that you, and your child are not helpless. You will treat this medically, and you will also hopefully learn psych tools. You will see your child beat this, maybe more tha once. You will find courage in their and your strength.

Viruses can cause problems. My son takes the extended release clonidine and normally sleeps through the night. However, last night he woke up sick to his stomach. Which is not the norm for him. He is also on Bixan for Mycoplama P. but I have not seen major improvement in symptoms but no regression yet either. I'm glad that you posted this. Hope you will get some other answers because I have been wondering what signs to look for if the antibiotic does stop working.

ashley, if you really look on these pages, people are doing lots of testing. Once the pandas-type immune dysfunction is happening, practically anything that triggers the immune system will just keep the symptoms rolling or happening again. Going gluten free for many people, like you, can help the blood brain barrier and reduce inflammation and pandas symptoms, so that was a good call. Its important to look deeply for immune issues and immune triggers as well, and treat everything you find. You will also see people talking about detox pathway problems on this forum, that can be big as well. People are doing the genetic testing to figure that out, and also, functional stool testing to look at that huge aspect of the immune system. PANDAS is complicated, i think of it like a cluster-f***, so many things overwhelming that kids immune system.

Ashley -- Since you're dealing with autoimmune, as AmyJoy and Rachel have already suggested, other triggers that can set off the immune system can cause issues, too; it's no longer limited to the original/initial trigger. If you think of the immune system as a glass, there's only so much it can hold/handle at one time. So if it's already close to fully topped off, even though relatively well controlled through your interventions, an additional immune-demanding load can top it off and cause it to run over.
 
So, if anyone has brought a virus around (there have been a lot of those this past winter), or since allergy season is emerging with the Spring, either of those could be at play here. This is supposed to be an especially bad allergy season, so if your DS has any other signs of environmental (pollen or mold) allergies, I would probably look that direction first.
 
Quelling the immune response should help your DS re-achieve the good trajectory he's demonstrated recently.

qannie, I never liked pancakes and I have no experience with them. Here is the logic however: what makes wheat flour good for baking? gluten because it acts as a pliant glue. Xanthan gum does the same. Garbanzo flour is heavy and tasty as is corn meal. Starches (potato, tapioca, corn) are light and absorb a lot of water.
I can improvise: 1/3 garbanzo flour, 1/3 tapioca starch, 1/3corn starch, one egg, some coconut milk, some oil, one teaspoon of xanthan gum. perhaps, coconut yogurt for added aroma.
if pancakes are your chief problem, you don't really have a problem at all.

Ok, theppk has gluten free, vegan, pancake recipe on her website.
 
Now- realistically ther is NO WAY a GDP, veg pancake is going to be exactly like a buttery, eggy, white flour concoction-but-
 
Her recipes are the absolute best- so I would say this is your shot. Make them, top with fruit and syrup, and they just might satisfy....

qannie, there is a substitute for everything. just ask.

here is one of our favorite gf (grainfree) websites and actually one of my favorite standby recipes on the site
http://www.elanaspantry.com/muesli-scones/

Hello.
 
You may also want to look at paleo recipe sites. The paleo diet includes meats but many recipes themselves don't and all strict paleo recipes should be GFCFSF.
 
There are also a number of recipe maker apps on some of the sites where you can input your ingredients and it will spit out a recipe. I've never tried these so can't vouch for them but it may be worth a look.
 
 

Our Costco has the Nutiva brand coconut oil as well as a very nice assortment of GF items (organic, no BPA canned black beans and kidney beans, organic quinoa, coconut and almond milk - rice milk has too much arsenic for us since we eat more than I like of rice products since going GF) which are HUGE staples for us.
PANDAS DS13 has been a Vegi for 6 years now, and is GF since early in with the illness, so I know how hard it can be to feed these kiddos. Just know it gets easier as you go.

Just picked up the April issue of Psychology Today. Pg. 40 "The Psychobiotic Revolution". "It may be possible to relieve anxiety and depression solely by manipulating bacteria in the gut."
 
"Recently, he coined a term for the live organisms in the gut that are psychoactive and of potential benefit to those suffering from a variety of psychiatric illnesses - psychobiotics." (Yeah, they are just probiotics...)
 
Some interesting info:
A cocktail of Lactobacillus helveticus and Bifidobacterium longum was found to reduce cortisol levels and curb inflammation.
 
Gut microbes that actively secrete GABA are Lactobacillus and Bifidobacterium. (Lack of GABA in the brain may bring on the negative ruminations long linked with depression.)
 
Bifidobacterium infantis as a probiotic alters levels of serotonin - just like Prozac.
 
Lactobacillus reuteri, delivered in either yogurt or supplement form, improves mood, appearance, and general health by increasing levels of oxytocin.
 
B. infantis, L. reuteri and several other strains work throughout the immune system by attacking inflammation, a hallmark of depression.
 
Lactobacillus rhamnosus reduces anxiety and depression and beefs up production of GABA receptors.
 
B. infantis and L. reuteri work on the immune system, where they suppress proinflammatory cytokines.
 
HERE's what makes me aggravated about this article. Instead of encouraging probiotic use NOW, they talk about these "therapeutic psychobiotics being a long way from reaching the market", but that you can still eat yogurt and fermented foods. They say that most probiotics don't make it past our stomach acid - but this article is from Psychology Today, so I'm sure it's not "Pharmaceutically Correct" to push anything that is already out there on the market. Sorry, but I'm fully aware that most research is paid for by the pharmaceutical companies, and they want to get their money grubbing paws on this. All of the microbes listed are in probiotics I have here in my refrigerator, and some of them are specifically made to get to the gut.
 
That rant being said, I'm just glad that psychiatry is starting to see the light of day! Finally realizing that the brain is actually attached to our bodies, and affected by them! Hoorah!
 
Since I pretty much typed out the whole article, I guess I should give the author credit! Thank you, Jordan Davidson.

trader joes has the cheapest version of coconut oil that we could find. at 70 degrees it is not liquid. and, yes, we use it to replace butter, approximately one to one. this oil gives our muffins special aroma and smell, frankly, much better than regular muffins. we put it on bread and it it with jam.
we also use it as substitute for other oils and fry with it.

one advice about CF. you got to do two things to go CF. First, throw out all the CF containing products and do not buy them again. Second, start using coconut products. It is easy to get used to and fat content makes it a great substitute for cow milk products. You can bake with it in place of butter. You can use coconut milk just like you use milk. The only thing that there is no substitute for is cheese, unfortunately. For many people, dairy is among the worst triggers. Do goodle search on dairy and mental illness

We have done a GF and soy free diet, continuing to eat meat. Going CF seems too difficult right now. We have tried to cut sugar too.
 
I have learned this with our family: dont try to do too many "mock" foods, substituting the real thing for some acceptable substitute. Substitution ends up frustrating us, as its a defensive strategy. It never tastes as good as the real thing and ends up reminding us of what we left behind. Often it isnt good period. Instead we try to make foods and dishes that fit the ingredients. To date that means more asian and mexican themed meals. Summer is easier with fresh veggetables from the garden.
 
I checked out your blog and I think we will try the crunchy chickpeas. Kids love crunchy snacks and this is a good and healthy addition to the ubiquitous corn chip.

I have been a vegetarian for 6 yrs. my pandas daughter is also. It is a very healthy and kind way to eat. Of course, as with anyone you should eat a varied diet that includes nuts, seeds, beans and legumes.
 
My favorite resource is theppk website, and ALL if her cookbooks, especially Isa Does It. She is vegan. She is not gluten free, but most recipes you could sub w/ gluten free product.
 
Good luck!

We started GF last August. I saw a big change in my son within 6 days! We are true believers, where were had not been so much before. There is no doubt that he has significant G intolerance. We have since been to an allergist for scratch testing and discovered that he has a multitude of allergies to environmental things as well as food. We have done abx, 2 IVigs and GF. All have contributed significantly, but the GF is the cheapest intervention and available to all! Good luck and so happy to hear it is going well!!! -Kath

My son takes the extended release clonidine at night. He was waking up at least once an hour. We tried the regular clonidine but he was unable to sleep through the night. He takes .3 of the extended release, which is a big dosage but at one time he was able to take .2. I am hoping to take him back down but ever since he had a double ear infection last October, I have not been able to take him back down on the lower dosage. I have currently got back some testing on my son that indicates he has high norepinephrine levels. Clonidine will also help to lower these levels.
 
My son also has vocal tics and takes Intuniv during the day time. He was switched to this medication when the clonsapam stopped working for him. Intuniv also helps regulate serotinon and dopamine levels in the brain. My son has had problems with this also.

DS15 has taken clonidine at night now for almost 5 years. It has been a life saver, at least a sanity saver. It calms him down (from his tics) and gets him to sleep. He has tried it during the day, but it makes him too sleepy so cannot take it...unless we are on a road trip or something. It has no side effects that we can tell. Dosage for him is a .1 gram tablet, and we sometimes cut it in half if he is doing well. So, its a very small dose.

Clonidine helped DS18 with sleep and measurably decreased the tics. However, the initial amount prescribed was way too high and he couldn't stay awake even after taking it for about a month--also had a slight decrease in "sharpness" of thinking. I tapered down to half the dose and now he is doing much better (although he claims to miss the feeling of being "knocked out.") Otherwise, I don't see any negatives to it.