Mayzoo

January 26, 2015

Cunningham panel is the only test that has an indication level for PANDAS/PANS as likely, or not. You can use the search feature here and put "Cunningham Panel" in to do more research on what it tests for and what the outcomes are of testing.

We opted not to do this test because kiddo had strep at onset and 13 of 14 (likely had all 14 but due to verbal delays, we were unsure) symptoms at that time. I was unwilling to spend the 1000 to 1200 dollars.

January 25, 2015

You have probably already seen this, but just in case, here is a list of PANDAS friendly docs in Washington:

WASHINGTON

Dr. Niran Al-Agba
Pediatrician
360-692-8588
Silverdale, WA

Denise Jervis
Family counselor
206-227-3582
Bellevue, WA

Dr. Kim Kacorski, ND
Naturopathic Physician
425-775-6001
Edmonds, WA

Dr. Steven Katz, PhD
Psychologist
425-688-7675
Bellevue, WA

Healthy Homeopathy
Homeopaths
425-774-5599
Edmonds, WA

Dr. Geoffrey Wiegand, PhD
Psychologist
206-987-4644
Bellevue, WA

Dr. Robert Reichler
Psychiatrist
425-248-4850
Edmonds, WA

Dr. Evan Hirsch
Holistic Family Medicine
360-464-9965
Olympia, WA

Dr. Hatha Gbedawo
Naturopathic Physician/DAN Doctor
206-518-8938
Seattle, WA

http://pandasnetwork.org/researchandresources/find-help/usproviders/#WASHINGTON

wisdom_seeker · January 25, 2015

We use hemp CBD oil since cannabis oil would be illegal in my state. I have heard cannabis oil helps differently but similarly to Hemp CBD oil. Both have CBD in them, but hemp CBD oil lacks the THC (psychoactive component) that cannabis oil has.

We use Cibdex (500mg per 2 oz). It is "on sale" on Amazon right now. Rather than 160.00 it is 97.00 for the vanilla, 110.00 for the natural, and right at 90.00 for the peppermint. I just re-ordered about an hour ago since kiddo is in a mild flare. We had stopped using it for a while, but now seems like a good time to restart to cut down on some of her anxiety. It still seems to help a lot for her. I ordered the vanilla flavor this time. The peppermint was too strong, and the natural was unpleasant, but kiddo preferred it to the peppermint. I will see how the vanilla goes .

It does seem to help with "the upsets" which seem to be anxiety related around here. She gets very emotional and her vocal tic rares its nasty head. This seems to tame that down or relieve it all together. My other choice to alleviate the upsets is klonopin, and while that is cheaper, it is not my first choice for many reasons. It is more sedating, and the scripts are somewhat hard to get. I do not want to use it enough such that it becomes impossible to get.

Everything else helps, but is not a magic bullet like these two seem to be. Valarian, benadryl, japanese knotweed, kudzu, iburpofen and true calm all help to varying degrees, but do not alleviate the symptoms completely like CBD and klonopin do most the time.

January 24, 2015

I am a very well educated, certified and licensed pharmacy technician. I have taken lots of pharmacy courses and worked in all the settings available except mail order. I have made IV and TPNs. I also worked in a compounding pharmacy for years, hence I am comfortable with this whole process . I can crank out about 1200 capsules in a day at home before I get too bored/tired LOL.

Kiddo will only drink plain water or I would give the infusions a try.

Ha - I knew it. On my first go round I only had 5 good capsules out of 25. What a mess! No wonder I am forced to make tea. It's hard to go wrong boiling water.

I am a fisheries biologist. Maybe that's where the water thing comes from.

If you ever want to try capsule making again, try it with "The Capsule Machine"

(video here:

).

You put the top in one tray, and the bottom in the other. After you fill the capsules, the two trays fit together, you push down gently and viola----the two halves automatically put the capsules together. My sister uses the other common one (Cap M Quick I believe), and she has to put the tops on the bottoms by hand. This takes longer and would try even my patience. She wishes she had bought the same one I have.

I use The Capsule Machine, and love it. Of course, I would love to have the one I had in the pharmacy that does 100 at a time, but I do not want to pay the professional price of course. The capsule machine is the closest I have found in my research to what I used in the pharmacy....smaller quantities, but still a breeze to use.

On the other hand, I know folks who have messed up boiling water....but hey, we cannot help everyone. Fisheries biologist sounds fun too .

kakrpa · January 23, 2015

I purchase our tinctures from WoodLandEssence (sida, red root, bidens, CSA, Japanese knotweed) and source our powdered herbs (houttuynia, cordyceps, Japanese knotweed) from 1stChineseHerbs. Other herbal tinctures I use (ginger, hawthorne, milk thistle, curcumin) I source from OrangeNaturals, a Canadian company.

I infuse the powdered herbs instead of encapsulating them. Infusing them through different temperatures extracts more constituents than simply using an acid extraction (stomach acid). Then when the herb is mixed and suspended in the tea before drinking, further acid extraction is allowed in the stomach. It's just easier to slug down a shot of tea with a pomegranate juice chaser than to take lots of capsules.

I started the bartonella protocol on my own using the mycoplasma/bartonella coinfections book. I had read up on the subject a couple of months before DD was weaned from abx. The LLMD said I would be OK to start with herbs - so I did!

I contacted Julie after several months and she said we were doing fine. She gave me a couple more suggestions (mostly for detox) that I initiated.

Then after trialing CSA which produced a babesia herx (and a new clinical diagnosis of babesia-like-organism from the LLMD), I contacted Julie again for input on the babesia protocol which is not in print yet. I didn't feel the website contained enough information for me to go in.

Please be careful of where you source your herbs. They may be organic, but if they are grown in a highly polluted area you may still be getting unwanted toxins. For this reason I stick with Buhner's recommendations.

Others include:

Elk Mountain Herbs

1stChineseHerbs

Healing Spirits Herb Farm

Horizon Herbs

Mountain Rose Herbs

Pacific Botanicals

Sage Woman Herbs

WoodLand Essence

Zack Woods Herb Farm

Desert Tortoise Botanicals

When starting methylated vitamins, go slow. If you cause a backup in one of the pathways you will be in a mess. Our LLMD wanted DD to take methylB12 shots with relatively huge amounts of B12 and folate. I said no way - we started orally at low dose and didn't have a noticeable problem. Just be aware that overmethylation can be as damaging as undermethylation, which is why we now only supplement every other day.

@Mayzoo - you must be a pharmacist if you can get those capsule machine thingy's to work!

I am a very well educated, certified and licensed pharmacy technician. I have taken lots of pharmacy courses and worked in all the settings available except mail order. I have made IV and TPNs. I also worked in a compounding pharmacy for years, hence I am comfortable with this whole process . I can crank out about 1200 capsules in a day at home before I get too bored/tired LOL.

Kiddo will only drink plain water or I would give the infusions a try.

January 23, 2015

I make my own tinctures. I buy the cut and sifted herbs and make them into tinctures. Or, in some cases I grow what we need and turn that into tinctures. I also buy the herb powders in bulk and put them into capsules myself. Doing both these saves us a lot of money.

However, I did buy at least one month of everything commercially made first, That way I could make sure kiddo could tolerate them, and that gave me a well labelled bottle to store my own creation in.

We are going it alone with the help of his books. I do have 25 years pharmacy history under my belt, so that helps me in many ways.

January 22, 2015

https://www.clinicaltrials.gov/ct2/show/NCT01769027?term=PANDAS&rank=4

HMMMM, says not yet recruiting but the est start date was June 2013. Anyone have info on this?

kakrpa · January 21, 2015

@mayzoo yep, that's right...Go Big or Go Home! LOL Did u guys ever try valtrex? I'm glad to hear shes doing better,.except for recent flare. I hope to get better too...

No, we have not tried zovirax, valtrex, valcyte or famvir. She is only 12 and the side effect profile of the two (Valcyte/Famivir) that are indicated for for all three viruses she battles concerns me. Valcyte (first choice for her viruses) has also not been on the market for long in enough, IMO, to know what effects it would have on the development or fertility of a 12 year old girl. I wanted to try the less problematic route first.

I hope you see improvement soon too.

kakrpa · January 21, 2015

We are using his EBV protocol with what I would consider outstanding results so far (see my siggie). We are in a minor flare right now, but still manageable, and we had an awesome few months before that. I am looking forward to returning to those awesome times, and I have solid hope after we kick what is causing this flare, we will be back on track again.

I also recommend his herbal antiviral book for anyone who may dealing with viruses as well. We have both the viral and abx real book and a kindle edition of each (only books I have real and digital versions of!) I have never regretted buying any of it.

January 21, 2015

Wow mayzoo, those are some high numbers - I think I can relate. I bet you both have been through a lot. Is there any particular part of your regimen that has seemed to help the most? Least? Btw, I'm waiting for my HHV6 and EBV results too.

I guess you and my kiddo have the same mantra....if you are going to do something, do it RIGHT. If you are going to have high viral titers.....have 'em REAL high LOL. Ten fold plus too high to be exact . You two just need to be less efficient .

Her rubella was 169 with a normal below 9. We have that more under control and down to 14 I believe.

January 21, 2015

So far, the herbal anti-viral protocol seems to have done the most for both symptoms, reducing titers, and reducing likelihood of illness hence flares. We started in May, and in December was our first flare, and this one is pretty mild but persistent. Kiddo was sick once in August I think, but had no flare with it, then kiddo was exposed during a Christmas party to something . We refuse to stick her in a bubble however. We do hope to modulate her immune system enough so she can heal on a more long term basis and thus get sick much less. We have been on the road of PANDAS since Sept 2011.

Helped the least I would say was when we picked one herbal item and hoped it would cure everything, then picked another one item, then another one item. It seems to take the whole protocol for kiddo to see results. They really seem to work together much better.

For immune regulation she is taking:

Reshi

Cordyceps

Astragalus

and a few of the anti-virals modulate the immune system as well.

January 20, 2015

Kiddos were as follows:

Cox A7 1:1600

Cox A9 1:1600

Cox A16 1:1600

Cox A24 1:1600

Cox B6 1:8

Cox B4 1:16

HHV-6 10.71 <0.76

EBV >600 <18

Varicella 1113 <135

Now the Cox A is negative, and the doc forgot to order the cox B. Her HHV-6 at last testing was 4.54, and the others have not been retested yet. She still has anxiety in after exposure to illness (flare), but no anxiety otherwise.

kakrpa · January 17, 2015

You are very welcome.

Here is the protocol I have her on:

Chinese Skullcap 750mg (h/m) 1 cap tid

Chinese Skullcap 500mg/Licorice 250mg (h/m) 1 cap 3 x day (on 30 days off 30)

Cordyceps 750mg (h/m) 1 cap 3 x day

Motherwort Tincture 1 dropperful tid

Lomatium Tincture 1 dropperful tid (on 30 days off 30)

Red Root tincture 1 dropperful tid

Rhodiola 327mg ½ tablet bid (am/3pm)

Lemon Balm 750mg 1 cap tid

Rheisi Caps 188mg 2 caps bid

L-Lysine 750mg 1 cap bid

Astragalus 470mg 1 cap tid

Ginger Tincture .75ml bid

Isatis tincture 2 dropperfuls tid (on 30 days off 30 days)

Japanese knotweed 750mg 1 cap tid

Kudzu 750mg 1 cap tid

Bid=two times a day. Tid=three times a day.

And she is on three herbal antibiotic: Cryptolepis, Sida Acuta, and Alchornea.

I make her tinctures myself now and I buy the powders in bulk and fill the caps myself now. It is saving us a ton of money to do it this way.

Up until my husband's Christmas party she was doing amazingly well. Her energy was back up and she wanted to go outside every day again. She had begun doing the things she loved and had not done in 18-24 months. At the party, she was exposed to something that has caused a minor flare, and we are still struggling to get back from that. I had to restart her on some pharmaceutical antibiotics since then, but now we are getting back on track. When she is stable for a while, I will titrate off the pharm abx again.

kakrpa · January 15, 2015

My kiddo had similar results. She does not have mycoplasma, but does have EBV, and HHV-6 along with very high titers for varicella. She had high titers for rubella, but doc got those down with amantadine for a year.

Now her coxsackie A IGMs are negative (doc forgot to reorder coxsackie . Her HHV-6 titers are half or less now, and I believe her EBV is going down.

We are using Buhner's EBV viral protocol. Below is a list of her original symptoms, many of which have resolved. We are in a minor flare right now, but still nothing like original issue:

Symptoms (all new since onset, so likely unrelated to other conditions)--some are slowly improving with time and lots of work:

* Insecure, clingy. I cannot go to bathroom alone any longer.
* Frequent spills of her drinks
* Difficulty transitioning from room to room everywhere including our house.
* Increase in sound sensitivity
* Selective mutism (no speaking) 98% of the last 3 months. Called selective because she mouths words sometimes when she reads and if forced, she will speak in a whisper. About 7 days ago she began speaking again (less than normal), but 90% of the time in a whisper.

* Complains of pain in ankles, knees, left hand, and shins.
* Sleep difficulties:
* Wakes up numerous times in the night "hollering/screaming" wanting to get up. Now that she is speaking a bit again, she says she had a bad dream and "can't go to sleep"
* Going to bed is now traumatic from the get go. Once in bed she 'hollers" for up to two hours until she finally goes to sleep.
* When she wakes up, if allowed to, she will lay in bed and "holler" for up to two hours before she gets up and begins the day.
* Will not get herself up out of bed at night or in the morning in any timely manner (takes hours).
* States I cannot brush her teeth (she has never completely been responsible for brushing her teeth-but never fought tooth brushing before).
* Very light sleeper now, wakes up with even tiny noises in the house.
* Frequently day/night incontinent. States she cannot pee or poop in the potty.
* No longer wants to go outside.
* No longer will get in the car without a fight/emotional upset, crying.
* No longer will shower or bathe without a fight/emotional upset, crying.
* No longer will wash hands without a fight/emotional upset, crying.
* States her daddy cannot love her. Has stated others cannot love her too.
* She will not eat lunch/dinner unless coerced or bribed. Dinner is traumatic even if when she says "I can't eat" I tell her "then don't eat".
* She will no longer read out loud to me. She never read quietly until this happened.
* She fights tooth and nail through school work.

I will post more or answer questions if I can tomorrow or the next day. Tired right now and going out of town tomorrow.

January 15, 2015

As some of us know, getting some of these kiddos into the shower or under the sink for a hair washing can be challenging, depressing, and a hair pulling experience LOL.

Here is an idea I have not tried, but it sounds really good. Dry shampoo that works and does not make your kiddo look like an old timey judge on the bench or a ghost.

http://www.wikihow.com/Get-Beautiful-Hair-%28By-Using-a-Dry-Shampoo%29

January 13, 2015

I don't know that she's ever been tested for yeast. What is the yeast test called?

We will definitely wean slowly while introducing herbs at the same time. Before this flare she was doing really great, and that's when the "weaning talk" began, but she's taking longer to recover from this one than I expected probably going to have to wait to do anything now anyway.

When we weaned off abx, I made sure kiddo was at full doses of herbs first, and stable. Then began to wean her off abx. If you do both at the same time, you will not know what is herx reaction vs lowering abx reaction, and you could actually have both going on at the same time.

January 13, 2015

In case your child receives any more vaccines, they should RARELY receive a vaccine while ill. Vaccines stress the immune system, and you do not want to add them on while the immune system is already stressed. Your doc should have known better.

January 13, 2015

CSA= Cryptolepis, Sida Acuta and Alchornea. My kiddo is taking all three as well.

SSS · January 6, 2015

In my state, the parent is held accountable for a child's truancy. The parents are fined twice (250, then 500), then placed in jail for 3 days each time the child is truant past the limit, so his plan would back fire on him here.

Sorry your hubby is not on board with you fighting this illness right now.

January 5, 2015

Kiddo has gotten strep on two different ABX (she had zero physical symptoms of strep BTW). She actual had strep for almost 60 days straight despite ABX.

Yes, kiddo gets random fevers with no physical symptoms of illness. After spending time ferreting out, I usually find some issue--ear infection, strep, UTI etc..... She usually does not improve unless another abx is added.

We are actually going through this right now. Low grade fever and a slew of PANDAS symptoms. A UTI appears to be to blame this time.

Here is the list of physicians in NJ. I am sure some others are pandas friendly, but I do not know of them:

*Dr. Rosario Trifiletti
Leading PANDAS Physician – very busy practice
Neurologist
201-236-3876
Ramsey, NJ

*Dr. Harumi Jyonouchi
Allergist/ Immunologist
973-972-5779
Newark, NJ

Dr. Stuart Freedenfeld
Family Practice
609-397-8585
Stockton, NJ

http://pandasnetwork.org/researchandresources/find-help/usproviders/#NEW%20JERSEY

January 4, 2015

I am amazed at how much difference ionic magnesium has made in my chronic headaches. It has also reduced my shoulder and calf muscle tightness. I am taking 175mg split in two doses. I have tried the tablets and they do not work for me.

January 4, 2015

Here is a list of some of the well known Pandas/Pans docs in Ohio:

OHIO

Dr. Cheryl Leuthaesuer
Integrative Wellcare
216-696-2320
Richfield, OH

Dr. Ali Carine
Integrative Pediatrics
614-459-4200
Upper Arlington, OH

*Dr. Allen Lewis (Leading PANDAS Physician)
Integrative Pediatrician
614-245-4750
Gahanna, OH
will treat more complicated cases involving PANDAS and Autism

Dr. Jan Kriwinsky
Pediatrician
216-831-7337
Beachwood , OH

http://pandasnetwork.org/researchandresources/find-help/usproviders/#OHIO

December 30, 2014

Lithium soups up my kiddo a bit, so I give it in the am and at 3pm, but not after 3pm. I cannot think of anything else, other than I give kiddo a combo called Sleep Essentials (melatonin + more) and it helps her. Search it out on Amazon if you are interested. Not for everyone of course, but it helps her.

December 30, 2014

I also reserve four words that I do not use hardly ever except for these cases. "This is not optional." When I say those four words (which I make sure are very rare) kiddo knows that no amount of fits will change the outcome. She may still fight a blood draw, but when I say those words, I can see her deflate because she knows if I have to hold her down, sit on her, etc.....she WILL lose the battle regardless of what I have to do. It usually reduces the battle some anyway.

This got started when she began fighting taking her meds a few years ago with the onset of PANDAS. I literally had to hold her down and pry her mouth open to make her take them. It only took a few times of that before she quit fighting so much, and within a few days, she was back to taking them willingly (begrudgingly, but willingly). Then it morphed into when she had to take a liquid, which I avoid with all my might, because she HATES liquids. She looks at me and says--"that is NOT mine" and if I cannot sneak into something, then I have to pull out those few words. Now it is just for blood draws as far as I can recall.

December 30, 2014

klonopin is an anti-anxielitic. It is similar to valium, but not quite the same in that valium is also a muscle relaxer as well as for anxiety.

Yeah, a shot and a beer may be out of the question at 9, but who am I to say . I know when it took five of us to hold kiddo down, I really needed a shot and beer and a ton of ibuprofen myself. I finally told her doc, either her or I needed something for anxiety related to blood draws. He prescribed it for her .

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