Mayzoo

1 Psychologist in Michigan:

MICHIGAN

Dr. David Wartel
Psychologist (specializes in CBT)
248-626-1330
West Bloomfield, MI




Several 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...iders/#MICHIGAN

We used it for 6-8 months and it had great effects the entire time. We stopped as a trial to see how she would do now that her viral numbers are dropping and behaviour has improved drastically. She is doing really well now even without it.
 
We used it for anxiety, ocd, bouts of "upsets" (which I gave an extra dose for), and it is antiviral and anti-inflammatory. We started with Bluebird and switched to Cibdex without noticing a difference. I gave kiddo the Cibdex CBD oil 500mg in 60ml and gave 2 squirts under the tongue and had her hold it for a minute. We mixed the natural flavor and the peppermint flavor 1:1 to get a more neutral flavor that was not offensive. Kiddo tolerated, but did not like, the natural flavor. The peppermint full strength was too strong (like trying to hold a tic tac under your tongue for 60 seconds). The mix was the winner.
 
I caught it "on sale" (HAHA) on amazon for 99.00 a bottle both times I bought it. Otherwise it was 160.00 a bottle, but I have not looked lately.

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.

Depends on the flavor. The natural tastes kinda grassy, the peppermint tastes like a very strong tic tac, the vanilla is strong vanilla. I mixed part of a vanilla and peppermint and that worked out best. Just as they are, kiddo prefers the natural probably because it is not as strong, but she also does not have taste sensory issues.

I bought the Brain on Fire book on audible (member price) for 2.95. Just in case anyone is interested.

Our PANDAS doc ran these on kiddos first visit:
 
CBC
Thyroid
vaccine titers
Complete Metabolic panel
IGG, IGE, IGA, IGM levels
Chlamydia pneumoniae
MTHFR mutations (insurance did not pay for this)
Mycoplasma
CMV
Vit D
EBV
Anti-Dnase
HHV-6
Coxsackie A & B
HSV I & II
Celiac
Homocysteine
Magnesium
Cerulplasmin
Copper
Zinc
Ferritin
Lactic acid
Streptozyme
Antistrptolysin o ab
Ammonia, plasma
Triiodothyronine
Selenium
OAT test (urine test)
Neurotransmitter test (urine test)
Porphyrin panel (urine test)

I can relate, sadly. My daughter was not in the right birth position and I and the doc knew it 30 days before I delivered. For 30 days I did exersizes to turn her, and when I went into labor, the staff never said anything about her not turning, so I assumed she turned. She did not, and the doc did not say anything about a c-section. Needless to say, she was born natural by forceps and sustained several serious birth traumas. If I knew then what I know now, I would have pushed for a c-section which is how babies in her position should have been delivered.
 
I still beat myself up over this, but I heartily recommend you do not beat yourself up--yes I am a hypocrite . I doubt you knew she should have a spinal tap, just as I did not know my kiddo needed to be delivered by c-section. Hind sight is always 20/20. Blaming ourselves does not help our kiddos now. It just wears us down (speaking from experience).

The version we give to our child is not based on anything classified as an illicit "drug". It is CBD oil derived from HEMP, not marijuana. Hemp is not classified as a "drug" and is so low in THC it has no psychoactive properties that I am aware of.  
My daughter is very delayed and has no tangible idea what "drugs" are, so converying this to her would be meaningless.

Before making any decision, I would have titers drawn. Our kiddo's (13yrs old) titers are over 10 times higher than they should be and she had only one shot of each at 12 and 15 months of age. We have been on medication for almost 18 months to lower two of the four titers you are speaking about because her PANDAS immuno believes they are problematic. Getting titers done, you may find you are not in need of boosters after all.

Before making any decision, I would have titers drawn. Our kiddo's (13yrs old) titers are over 10 times higher than they should be and she had only one shot of each at 12 and 15 months of age. We have been on medication for almost 18 months to lower two of the four titers you are speaking about because her PANDAS immuno believes they are problematic. Getting titers done, you may find you are not in need of boosters after all.

We still use it, but not as frequently since we are not in a really bad or horrible place right now. Mainly, we use it as needed for when kiddo gets upset.
 
Trinity:
 
I have intrusive thoughts, but have never tried CBD oil. I manage to afford things for kiddo I simply cannot rationalize for myself. What I do take for mine is Cymbalta (SSNRI) and it seems to help quite a bit. Of course, I do not have PANDAS and my brain is fully developed, so no limitations for either there.

I will send you a pm today or tomorrow. We really like him.

Blood work does not make or break a PANDAS dx. I absolutely agree as my kiddo has NEVER had high ASO or anti-Dnase. Hers have always been low, even in the middle of a 60 day bout with strep.
 
However, it can help you ferret out any other infections/viruses you may be dealing with that also need to be resolved. Read a few siggies around here and you will see the most common issues our kids face. There can be sadly a lot more to being diagnosed with an autoimmune disorder than just strep and lyme.

I would stay on the abx for a bit longer, but the good news is it appears you found an abx that is working first try around.

Yeah, by the time the kids are old enough to be sexually active, the immunity imputed by the vaccine would have waned without a booster.
 
BTW, they do pregnancy tests on 11 year olds in my area. They "needed" this test prior to our T & A.

Try these links: (more found here: google "list of methyl donors")
 
https://www.facebook.com/mthfralliance1/posts/530147490434986
 
https://autoimmunethyroid.wordpress.com/2006/04/16/list-of-methyl-donors/
 
http://www.rainbow.coop/library/methyl-donors/

Also try typing into google each med + "methyl donor" such as:
 
Olive leaf: https://www.google.com/search?newwindow=1&q=olive+leaf+%2B+methyl+donor&oq=olive+leaf+%2B+methyl+donor&gs_l=serp.3...14015.22579.0.23002.20.20.0.0.0.0.194.2019.9j9.18.0.msedr...0...1c.1.62.serp..16.4.364.JmKC6OHCj08
 
NAC: https://www.google.com/search?newwindow=1&q=NAC+%2B+methyl+donor&oq=NAC+%2B+methyl+donor&gs_l=serp.3..0i7i5i30.72675.76979.0.78254.13.13.0.0.0.0.88.929.12.12.0.msedr...0...1c.1.62.serp..6.7.546.NNtGvzpM2XU

I am sure this has been mentioned, but I have not seen it yet, so I will mention it again. I shop at amazon a lot. If you go to "amazon smile" (link below) and shop, then .5% of your purchases goes to the charity of your choice (PANDAS network.org is a choice if you type in PANDAS and search it.) Then just make sure your bookmark is to the amazon smile site to make sure your purchases count (upper left hand corner of mine now says "Amazon Smile Prime".
 
All your prices stay the same and all the services stay the same.
 
 
http://smile.amazon.com/

The general, simplistically explanation, as best as I can state it, is this:
 
1. Infection causes antibody production.
 
2. Antibodies that are supposed to attack the infection instead attack the basal ganglia in the brain.
 
3. That attack causes the inflammation of the basal ganglia.
 
4. When the basal ganglia becomes inflamed, we see a myriad of symptoms that we call a flare.
 
 
Mitigate the inflammation in the basal ganglia and you mitigate the flare symptoms. In most cases, as far as I am aware. there is not really an infection in the brain.
 
The ibuprofen working, even if the tests up to now are negative, simply means you have not run the right test yet IMO (have not found the infection).

The general, simplistically explanation, as best as I can state it, is this:
 
1. Infection causes antibody production.
 
2. Antibodies that are supposed to attack the infection instead attack the basal ganglia in the brain.
 
3. That attack causes the inflammation of the basal ganglia.
 
4. When the basal ganglia becomes inflamed, we see a myriad of symptoms that we call a flare.
 
 
Mitigate the inflammation in the basal ganglia and you mitigate the flare symptoms. In most cases, as far as I am aware. there is not really an infection in the brain.
 
The ibuprofen working, even if the tests up to now are negative, simply means you have not run the right test yet IMO (have not found the infection).

I was unaware of this, but if you itemize, this may help you:
 
Special Diets
Many people do not realize that the additional costs of following a specifically prepared medical diet such as the gluten-free, casein-free diet can also be considered medical expenses. On March 24, 2011, the office of the Chief Counsel of the IRS issued a letter clarifying this issue.
“Specifically, the excess cost of specially prepared foods designed to treat a medical condition over the cost of ordinary foods which would have been consumed but for the condition is an expense for medical care…. Therefore, if a taxpayer can establish the medical purpose of the diet, such as through a physician’s diagnosis, then to the extent the cost of the food for the special diet exceeds the cost of the food that satisfies a taxpayer’s normal nutritional needs if the special diet were not required, the excess cost is an expense for medical care under section 213(d).”
Here is an example of a GFCF Diet Deductible Worksheet. You can also claim mileage expense for the trip to the health food store and postal costs on gluten-free products ordered by mail. Specific products used only for a gluten-free diet such as xanthan gum are 100% deductible. You should save all cash register tapes, credit card receipts, and canceled checks to substantiate your gluten-free and or casein-free purchases. You will need to prepare a list of typical foods at typical grocery store prices to arrive at the differences in costs. You need not submit your documentation or computations with your return, but do retain them with your other tax records.
 
http://www.tacanow.org/family-resources/tax-strategies-for-parents-of-kids-with-special-needs/

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.

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.

We use home made milk kefir mixed with milk (50/50) and slimfast powder and Healthy Origins 8 strain, 30 BU probiotic.
 
http://www.amazon.com/Healthy-Origins-Probiotic-Billion-Vitamin/dp/B00309ZDS2/ref=sr_1_2?s=hpc&ie=UTF8&qid=1422335195&sr=1-2&keywords=healthy+origins+probiotic

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.